Geriatric Physical Therapy 3rd edition

194 CHAPTER 10  Motivation and Patient Education is ultimately trying to achieve. Goals are highly personal initially asking patients open-ended questions and thus and can serve as a significant motivation. Second, if giving the patients control while not attempting to influ- therapists did correctly solicit a goal, they oftentimes ence responses. If a patient is unable to answer an open- failed to specify exactly what the patient wanted to be ended question at the free-choice level, the therapists able to do. This specificity (i.e., what, when, where, de- can proceed to posing questions at three other levels gree) helps eliminate any confusion about what the goal (i.e., multiple choice, confirmed choice, and forced is, ensures the goal is functional, and gives all parties choice). Therapists ask for the patient’s permission be- involved a clear idea of what is to be achieved. A goal of fore moving to a lower level, never skip a level, and re- “gait of 100 feet without an assistive device” is not a turn to the level of free choice for further questioning functional goal, whereas a goal of “walking to the bus whenever possible. Movement from open-ended ques- stop (800 feet) in 4 minutes using the uneven city side- tions to these lower three levels means that planning walk without assistance” is a functional goal. and evaluating are becoming less patient-centered and more therapist-centered. The goal is to cooperatively There are many reasons why therapists may not in- plan and evaluate with the patient at the highest level volve patients to the fullest extent in a goal setting pro- what the patient is capable of or desires; prescribing to cess. These are listed in Box 10-1. However, few guide- the patient is to be avoided. The following example lines exist as to how therapists should elicit patient demonstrates how the OPN method can be used to elicit goals.135,136 One process is the Ozer-Payton-Nelson and clarify patient-centered goals. (OPN) method.138 Ozer, a physician; Payton, a physical therapist; and Nelson, an occupational therapist, col- A 70-year-old female elementary school teacher was laborated to develop a systematic, cyclical method to receiving skilled occupational and physical therapy in a involve patients in setting functional goals and evaluat- skilled nursing facility following cardiac surgery. She ing functional outcomes to their maximal degree possi- described her condition upon entering the skilled nursing ble.138,139 The therapist leads the patient to explore the facility as “I couldn’t do anything, no confidence, I had range of individual concerns and then to identify the fallen at the hospital, I couldn’t walk at all.” primary concern. Goal setting by the patient becomes a motivator because a greater degree of choice is exercised. Therapist What are your present concerns about functionally getting you to move Individual concerns are elicited and explored in the Patient from where you are now to your OPN model through the use of four questions posed at Therapist baseline? different stages of treatment planning and three processes Patient for each question (Table 10-5). A key to the OPN method Therapist My feet are swollen. is concerns clarification. Concerns clarification is a multi- Patient How does that interfere with your faceted process that includes the patient identifying per- sonal functional, disabling problems caused by his or her Therapist functioning? pathology and impairment; ranking those problems as to Patient It interferes with walking. importance and specifying (i.e., addressing what, when, Therapist People have to walk for different where, how, degree) to bridge the gap to setting goals. Patient reasons. What about walking is The OPN model uses hierarchical levels of patient Therapist important for you? participation to elicit and clarify patient concerns. Walking to the classroom from the Physical therapists trained in this method begin by parking lot. Walking in the grocery store. BO X 1 0 - 1 Reasons for Therapist Control Taking children to special classes like of Goal-Setting Process PE and library; we have many steps in our school that would be • Perceived time limitations a challenge but we also have an • Lack of preparation at the professional level of education elevator that I could use, but I • Inexperience dealing with unrealistic and irrelevant patient would have to send children up on their own. goals (e.g., those related to other disciplines) What is your greatest concern of • Use of vague and inconsistently applied informal interview those listed? Actually, none of those—just being methods able to walk. • Professional versus patient role beliefs (e.g., control, expecta- Being able to walk to do what? Being able to walk even without a tions, paternalism) walker from physical therapy • Limited or no awareness of patient-centered care standards and down the hallway where I have to go on my own or just with a cane. regulations What do you see as a first step? (Adapted from Tripicchio B, Bykerk K, Wegner C, Wegner J: Increasing patient participation: the effects of training physical and occupational therapists to involve geriatric patients in the concerns-clarification and goal-setting processes. J Phys Ther Educ 23(1): 55-63, 2009.)

CHAPTER 10  Motivation and Patient Education 195 TA B L E 1 0 - 5 Features of the OPN Method Levels of Patient Participation Clinician Patient Degree or Level Patient’s Involvement 100% Asks open-ended questions (does not suggest Free Choice A 75% answers) B 50% Explores C Asks questions and offers suggestions Multiple Choice 25% D Asks questions, provides an answer Selects 0% (recommendation), and asks for Confirmed Choice E agreement and confirmation Puts into own words what has been Asks question, provides an answer (recommendation), and asks for selected agreement Forced Choice Does not ask, tells what to do. Prescribes. Agrees or disagrees with what has been selected No Choice Compliant or noncompliant These five patient participation levels, starting from Level A, Free Choice, are used to explore, select, and specify patients’ concerns, goals, results achieved, and actions taken. The farther down you move from Level A, planning and evaluating are becoming more therapist-centered and less patient-centered. (Adapted from Ozer MN, Payton OD, Nelson CE: Treatment planning for rehabilitation: a patient-centered approach. New York, NY: McGraw-Hill, 2000.) Patient Being able to walk without a wheel- 10 of the critical skills dimensions those therapists need Therapist chair with a walker from the to effectively involve older patients to a higher level of physical therapy room to the win- participation in their treatment planning.137 Holliday dows where you can see ice sculp- and colleagues140 investigated the effectiveness of a pro- tures and deer. And without a cess similar to the OPN method with neurologic pa- wheelchair I would have to walk tients. One of their measures was the Patient Participa- back and that would be a bigger tion Scale used in the OPN method. Findings showed accomplishment. that those patients involved in a structured goal-setting process had greater perceived autonomy, and greater Walking to the windows would be a perceived relevance of goals than patients whose goals short-term goal and to and from a were established by their therapist. The OPN model may long-term goal. provide a way to increase involvement of the patient, provide more autonomy for the patient, and establish The therapist then pointed out how the patient herself more functional, personal goals. In turn, this process had progressed from discussing concerns to the question has the potential of increasing outcomes self-efficacy of goals. She had also identified short-term and long- through the care model of interaction and thus enhanc- term goals. The therapist then continued with further ing motivation. exploration of concerns or goals. Older adults may exhibit some resistance to becoming Therapist Do you have any other questions or partners in treatment decisions and sessions. Anderson Patient anything else to add? suggests that this reluctance may be based on their per- ceptions of health care professionals as authorities whose Patient Walking into my house, a tri-level wisdom is all-encompassing and whose decisions are not with one step in, that would pre- to be discussed or questioned.141 In the traditional patri- cede walking into school, that’s a archal and authoritarian health care model, the patient biggie! has a more passive role in treatment sessions, whereas the therapist is the activist. In contrast, in the helping pro- Completely getting myself out of bed. cess, the patient is more active in identifying the problem, setting goals, exploring alternative solutions, and assess- This example demonstrates how the therapist elicited ing the results. When the patient is active in the helping seven concerns/goals that were on a continuum from process, the patient’s resilience is strengthened.141 short-term to long-term, which took less than 10 minutes. Interestingly, the patient’s initial stated concern was not In summary, the helping process appears to be more her greatest concern. With the addition of the OPN congruent with the older patient’s need for self-esteem, processes of selection, specification, and the development autonomy, the exercise of choice, and the partnership of a plan (i.e., means and timeline) the framework was that Payton advocates. To be an effective patient educa- established for a treatment plan with her maximal tor requires an approach of empowering the patient involvement. rather than assuming an authoritarian role. An effec- tive patient educator facilitates the learner’s learning, Only two studies have investigated the effectiveness of the OPN model. Tripicchio et al found there was a posi- tive effect 1 to 3 weeks after training in the method on

196 CHAPTER 10  Motivation and Patient Education appreciates the learner’s differences, and helps the The patient’s positive contributions and correct perfor- learner establish goals and responsibility for learning. mance of any tasks142 should be stressed; be aware A patient whose ideas, interests, concerns, and feelings that patients who are depressed may demonstrate have been heard and responded to by others is much an increased sensitivity to failure and heightened self- more likely to enter into active, cooperative planning criticism. for necessary treatment. A patient who is actively in- volved in treatment planning is more likely to adhere to Accepting the patient’s existing attitudes and recog- those cooperative plans and guarantee the success of nizing that new attitudes, behaviors, and values cannot treatment. The importance of self-esteem and choice be forced on the older patient may help temper any relates closely to the older patient’s motivational level. resistance to change of treatment. Creating constructive Lasting gains are possible when the older patient per- dialogue and reasoning instead of participating in argu- ceives the therapist as a supportive partner in treatment ments that tend to further entrench negative attitudes sessions. The therapist’s degree of success when work- may help prevent these natural reactions of resistance ing with an older patient is related to the perception of and resignation. Discovering elements that affect patient that patient as a person against a background of cogni- motivation is paramount. tive and psychosocial characteristics. Educational and Cultural Background Strategies to Affect Learning The number of years between earlier instructional The therapist’s actions and behaviors are keys in work- activities and present instructional activities, previous ing with an older patient whose negative self-concept level of education, and past experiences with learning presents a significant obstacle to treatment progress. To are components of the older patient’s psychosocial pro- attempt to counter these doubts and to modify the file. Instruction related to job and profession or partici- patient’s perception of self to a more positive view, the pation in adult education and community education therapist should emphasize the successful experiences courses may be factors that will influence the patient’s the patient has had as an adult in overcoming other dif- positive predisposition toward learning new tasks. How- ficult experiences. Other techniques include guiding the ever, if the patient primarily remembers negative experi- patient to identify the reason(s) for any past failures and ences in earlier educational situations, these unpleasant assisting the patient to recognize that the reason(s) for memories may make it more difficult for the older failure may not be a factor in treatment. If, however, the patient to be a cooperative and a willing participant in reason(s) for past failure may be present in the therapeu- treatment sessions. The therapist should make every tic environment, the therapist should help the patient effort to ensure that the older patient experiences success identify the factors that can be controlled at this time.142 in the initial treatment sessions and to assist in the For example, consider the patient with previously treated differentiation of any earlier negative experiences from low back pain who starts physical therapy. The patient’s present therapeutic procedures. behavior indicates a reluctance to try the exercises. As the therapist explores this reluctance, the patient indi- Low literacy skills may be a barrier to successful cates, “No one really explained the previous exercises.” learning and should be recognized by the physical thera- The therapist indicates that doing an exercise incorrectly pist. Some older adults have deficient learning skills and can cause increased pain. Extra care and a thorough can be proficient at hiding them because of embarrass- explanation of the exercises are indicated to address the ment. Using a variety of teaching methods, simple vo- patient’s history of perceived failure. cabulary, and repetition of key points can enhance the learning opportunities of the older adult with low liter- Creating a successful instructional environment and acy skills. providing opportunities for successes, no matter how small they may be, are valuable tools. Any contributions Many ethnic populations reside across the United the patient may make should be recognized, and estab- States—with African Americans, Native Americans, lishing a partnership in the treatment goals and sessions Asian Americans and Pacific Islanders, and Hispanics is helpful.142 However, psychological counseling is best being the standard four major groups. The therapist done by counseling professionals. must remember that in addition to the patients having lived many years, their ethnic environment will influence During the treatment session, the therapist should their predisposition toward, perception of, cooperation provide tasks that the patient can do successfully. Fo- with, and follow-up of treatment. Traditional tribal and cusing on relevant information in an organized, clear home treatment methods are influential in all four ethnic manner and providing adequate time for skill practice populations. Illness is not a word in some Pacific/Asian can enhance successful performance. The therapist languages, and in others, illness is synonymous with should sensitively give adequate, honest feedback and acute conditions and death, and hospitals may be viewed encouragement for correct responses and performance with fear.143 to diminish the chances for and perception of failure. Another consideration with ethnic older patients is level of English proficiency and education. Using translators if

CHAPTER 10  Motivation and Patient Education 197 the therapist—or another member of an interdisciplinary and competent therapist and as a skillful facilitative in- team—does not have bilingual–bicultural skills is very structor. helpful. Although family members and friends may appear Cognitive Aspects.  ​Cognition refers to intellectual pro- to be the most logical choice for this important task, cesses, whereas learning generally is considered the ac- the recommended choice is an interpreter who has a quisition of knowledge or skills achieved by study, in- background in medical terminology as well as in language struction, practice, and experience. An individual’s and cultural expertise. Cultural differences must be trans- performance becomes the basis for inferring the level of lated in culturally appropriate terms and what may appear learning that has been achieved. Two aspects must be to be a single ethnic or racial group, for example, Pacific considered in discussing cognitive learning—the end Islander or Hispanic older adults, may, in fact, represent product and the process. Many research studies focus multiple ethnicities and races with very different languages only on the end product. Therefore, when a person’s and customs. When working with an African American performance improves in an intellectual or physical task, older adult, the therapist must remember the earlier segre- the inference is that learning has occurred. Failure in gation of health care facilities and must respect the black performance, however, does not infer that learning has older person as a survivor of a health care system that was not occurred or has been lost. Many factors affect an not accessible and perhaps was even hostile.152 Figure 10-1 older adult’s performance, including motivation and lists general health care characteristics of many cultures, physical and emotional states. The physical therapist compiled by South Miami Hospital. must be sensitive to the fact that multiple variables affect the learning situation and avoid concluding that the Patient education materials for older patients of eth- older adult cannot learn. nic groups must be designed with cultural diversity as one of several important considerations. The translator Intelligence as measured by standard testing proce- should examine the text carefully for any words or dures has been shown to decline in later years. Tradi- phrases that might be incorrectly interpreted. Illustra- tional intelligence tests examine fluid intelligence, which tions should reflect ethnic customs when possible. Soft- is composed of factual knowledge. Disease, neurologic ware exercise programs are available that depict differ- insults, genetics, and biological aging affect fluid intelli- ent ethnicities in exercise illustrations. Any number of gence. On the other hand, crystallized intelligence, reliable methods to test for appropriate reading level can knowledge that comes from experience, occupation, and be used. Field testing patient education materials using a a sense of the world, increases with age.144 sample of the intended audience before final production is recommended to determine the effectiveness of the Research generally concludes that memory does de- material. cline with age, especially short-term memory. However, evidence suggests that memory involving skills and tasks The extended family as caregivers to older adults is used frequently does not decline to the degree that infre- common among certain cultures. A lack of familiarity quently used information decreases. The adage “if you with health care resources and the bureaucratic pro- don’t use it, you lose it” can be appropriately applied to cesses for access often results in underutilization by mi- cognition and is referred to as the disuse theory of cogni- norities. Among Hispanics, the use of formal health care tion. Other research shows that when new information services can be viewed as the family’s failure to take care can be related to older adults’ existing knowledge, their of its own. The health care an individual family member new learning is facilitated. Some factors involved in the is allowed to receive may be subject to the approval or cognition or intellectual processes can be accommodated disapproval by the older-adult dominant family mem- by the physical therapist. These factors are assessment of ber.143 Building a level of trust through demonstration of learning level, learning readiness, and learning styles. sensitivity to the history and cultural view of illness and health care specific to the individual’s culture in order to There is a great deal of evidence that older adults re- negotiate successful treatment regimens with ethnic older tain the ability to learn new things, especially those en- persons is effective.143 The therapist should regard this gaged in a cognitive and physically active lifestyle.144 interaction as an opportunity for learning and increasing Although some aspects of intelligence may decline in cultural sensitivity and awareness. later years, these changes should not affect function in the normal, noncognitively diseased individual. The Older Adult as a Learner Although neuroanatomic changes are present in nearly all aging brains, the degree in which they occur and sub- This section relates patient education as an intervention sequently affect cognition is quite variable, representing to the knowledge of the process by which older patients the continuum of normal cognition to disease. Some “learn.” The belief that “you can’t teach old dogs new mild memory loss and cognitive slowing is expected with tricks” can be a negative influence on therapists who fail age, but no functional loss should be apparent. to recognize the fallacy of such a generalization. Older adults can and do learn. To work with older adults suc- Health Literacy.  ​The educational level of the older cessfully, a therapist must develop a dual role as a caring population is increasing. Between 1970 and 2008, the percentage of older persons who had completed high school rose from 28% to 77.4%. About 20.5% in

198 CHAPTER 10  Motivation and Patient Education The Culture Tool Culture Group Belief Practices Communication Patient Care/ and Language Awareness Handling of Death AMERICAN Christian and Jewish beliefs Talkative, shake hands, not Family members and friends English are prominent; many others much touching during con- visit in small groups. Expect exist in smaller numbers. versation. Prefer to gather high-quality care. Family-oriented. information for decision making. Some hugging and kissing, mainly between women. ARGENTINIAN 90% Catholic, some Protestant Talkative, very expressive, Educated, yet reluctant to get Spanish and Jewish. Strong belief in direct, and to the point. medical attention or accept saints, purgatory, and heaven. Extroverted. Good eye contact. new medical advancements. People from rural areas may Like personal and physical Independent, often deny dis- be more superstitious. contact such as holding hands, ability. Believe in natural and hugging, and kissing. holistic remedies: herbal teas, pure aloe, natural oils, poultices. Family gets involved with caring for the ill family member. BRAZILIAN Mostly Catholic; some Spiritism. Very sociable. Will stand close Emphasis on family unity—will Portuguese; diverse cultural Growing Evangelical represen- to each other. Social kissing, want to be actively involved. backgrounds, including tation. Candomble and hugging, and touching. Good Tend to trust medical personnel, European, African, Indian Macumba—similar to Santeria. eye contact. place great faith in doctors and nurses. Some believe in herbal treatments, teas, and balsams. CANADIAN Protestant, Catholic, and May prefer no touching or kiss- Follow nurses’ instructions. English, French, and Inuit Jewish ing. Take things at face value. Accustomed to socialized (Eskimo) medicine, less litigation. Take physicians at their word. Willing to wait for treatment. CAYMAN People are very religious. Like to be acknowledged. Like to be told what is going on English with some changes Majority of the island is Baptist Good eye contact. Prefer no by doctor. Would rather talk to in accent and verbs or Church of God. Voodoo touching or kissing. Very talk- doctors than nurses. Prefer and psychics are outlawed. ative and known for their one-to-one care. friendliness . Everyone on the island knows each other. CHINESE Religions: Taoism, Buddhism, Quiet, polite, unassertive. Women uncomfortable with Many dialects spoken; one Islam, Christianity. Harmonious Suppress feelings of anxiety, exams by male physicians. May written language. relationship with nature and fear, depression, and pain. Eye not adhere to fixed schedule. CUBAN others; loyalty to family, friends, contact and touching some- May fear medical institutions. Spanish and government. Public debate times seen as offensive or Use a combination of herbal and of conflicting views is unaccep- impolite. Emphasize loyalty and Western medicine. Traditional: table. Accommodating, not tradition. Self-expression and acupuncture, herbal medicine, confrontational. Modesty, self- individualism are discouraged. massage, skin scraping, and control, self-reliance, self- Some may have a tendency cupping. Alcohol may cause restraint. Hierarchical structure to be loud when having a flushing. for interpersonal and family discussion. Use their hands Culture requires visiting the sick. interactions. for emphasis and credibility, The extended family supports Catholic with Protestant and prefer strong eye contact. the immediate family. It is an minority. Santeria, which can insult to the patient if there is not include animal sacrifice. a large family/friend presence. ECUADORIAN Primarily Catholic. Increase Extremely polite. Reserved. Prefer pampering ill family Spanish, Quechua-Indian in Protestant, Baptist, and Respectful. Especially helpful. members; stay overnight with Jehovah Witness. Very re- patient. Not stoic when it comes spectful toward religious to pain. Very private, modest. leaders. Small percentage of Embarrassed if they do not look population is wealthy, with their best. Extremely protective much political control. Family of family; often parents live with size is usually large. grown children. FIGURE 10-1  ​The culture tool. (Adapted from Baptist Health South Florida, South Miami Hospital, South Miami, Florida.)

CHAPTER 10  Motivation and Patient Education 199 Culture Group Belief Practices Communication Patient Care/ and Language Awareness Handling of Death FILIPINO Family decision important. Ignore English, Spanish, Tagalog Catholic. Seek both faith healer Value and respect elders. health-related issues; often non- (80 dialects) and Western physician when ill. Loving, family-oriented. Set compliant. In spite of Western med- Belief that many diseases are aside time just for family. icine, they often leave things in the will of God. hands of God, with occasional folk medicine. Home remedies: herbal tea, massage, sleep. May subscribe to supernatural cause of diseases. GUATEMALAN Primarily Catholic. Increase in Quiet, reserved, and respectful. Modest, private, and stoic. Believe Spanish, Mayan heritage, Protestants. Very respectful Will not question for fear of in- in alternative methods of healing. European influence toward elders. European sulting professional. heritage; strong family ties. HAITIAN Catholic and Protestant. Quiet, polite. Value touch and Obedient to doctor and nurse but Creole; French is taught Voodoo is practiced. Large eye contact. hesitant to ask questions. View use in schools. social gap exists between of oxygen as indication of severe ill- HINDU wealthy and poor citizens. ness. Occasionally share prescrip- Hindi The belief of cyclic birth and tions and home remedies. reincarnation lies at the center JAMAICAN of Hinduism. The status, con- Limit eye contact. Do not touch Do not try to force foods when relig- English, Patois dition, and caste of each life is while talking. iously forbidden. Death—the priest (broken English) determined by behavior in the may tie a thread around the neck or last life. wrist to signify a blessing. This thread should not be removed. The Christian beliefs dominate priest will pour water into the mouth (Catholic, Baptist, Anglican). of the body. Family will request to Strong Rastafarian influence. wash the body. Eldest son is respon- sible for the funeral rites. Respect for elders is encour- Will try some home remedies before aged. Reserved; avoid hugging seeking medical help. Like to be and showing affection in public. completely informed before proce- Curious and tend to ask a lot of dures. Respectful of doctor’s questions. opinion. May be reluctant to admit that they are in pain. May not adhere to a fixed schedule. JAPANESE Self-praise or the acceptance Use attitude, actions, and feel- Family role for support is important. Japanese of praise is considered poor ings to communicate. Talkative Insulted when addressed by first manners. Family is extremely people are considered show- name. Confidentiality is very impor- important. Behavior and offs or insincere. Openness tant for honor. Information about ill- communication are defined considered sign of immaturity, ness kept in immediate family. Prone by role and status. Religion lack of self-control. Implicit non- to keloid formation. Cleft lip or palate includes a combination of verbal messages are of central not uncommon. Alcohol may cause Buddhism and Shinto. importance. Use concept of flushing. Tendency to control anger. hierarchy and status. Avoid May be reluctant to admit they are conflict. Avoid eye contact and in pain. touch. JEWISH Israel is the holy land. Sabbath Orthodox men do not touch Stoic and authoritative; respect Many from East European is from sundown on Friday to women, except their wives. health care workers who show self- countries. English, sundown on Saturday. It is Touch only for hands-on care. confidence. Appreciate family accom- Hebrew, Yiddish. Three customary to invite other Very talkative and known for modation. Jewish law demands that basic groups: Orthodox families in for Friday evening their friendliness. they seek complete medical care. (most strict), Conservative, Sabbath dinner. Donor transplants are not acceptable Reform (least strict). to Orthodox Jews, but are to Cons- ervative and Reform. Death: Cre- mation is discouraged. Autopsy is per- mitted in less strict groups. Orthodox believe that entire body, tissues, organs, amputated limbs, and blood sponges need to be available to family for burial. Do not cross hands in postmortem care. FIGURE 10-1, cont’d. Continued

200 CHAPTER 10  Motivation and Patient Education Culture Group Belief Practices Communication Patient Care/ and Language Awareness Handling of Death KOREAN Family-oriented. Believe in Reserved with strangers. Will Family needs to be included in plan Hangul reincarnation. Religions use eye contact with familiar of care. Prefer non-contact. Respond include Shammanism, Taoism, individuals. Etiquette is impor- to sincerity. MEXICAN Buddhism, Confucianism, tant. First names used only for Spanish; people of Indian Christianity. Belief in balance family members. Proud, inde- heritage may speak one of two forces: hot and cold. pendent. Children should not of more than 50 dialects. be used as translators due MUSLIM to reversal of parent/child Language of the country relationship. and some English Predominantly Roman Catholic. Tend to describe emotions by May believe that outcome of circum- Pray, say rosary, have priest in using dramatic body language. stances is controlled by external time of crisis. Limited belief in Very dramatic with grief but force; this can influence patient’s “brujeria” as a magical, super- otherwise diplomatic and tact- compliance with health care. Women natural, or emotional illness ful. Direct confrontation is rude. do not expose their bodies to men or precipitated by evil forces. other women. Believe in one God “Allah” and Limit eye contact. Do not touch Do not force foods when it is relig- Mohammed, his prophet. Five while talking. Women cover iously forbidden. Before death, daily prayers. Zakat, a compul- entire body except face and confession of sins with family present. sory giving of alms to the poor. hands. After death, only relatives or priest Fasting during the month of may touch the body. Koran, the holy Ramadan. Pilgrimage to Mecca book, is recited near the dying person. is the goal of the faithful. The body is bathed and clothed in white and buried within 24 hours. NORTHERN EUROPEAN Very similar to American cus- Courtesy is of utmost import- Maintain modesty at all times. Stoic Language of the country toms. Protestant with large ance. Address by surname and regarding pain tolerance. Death is and some English Catholic population. Multiethnic maintain personal space and taken quietly with little emotional groups. good eye contact. expression. Patients/family tend not to question medical authority. SOUTHERN EUROPEAN Roman Catholic, Protestant, Talkative, very expressive. Educated, yet reluctant to get med- Language of the country Greek Orthodox, and some Direct and to the point. Extro- ical attention. Very independent. Birth and some English Jewish. verted. Good eye contact. Like control and abortion are accepted in personal and physical contact: some countries and not in others. holding hands, patting on the Family gets involved with caring for ill back, kissing. family member. VIETNAMESE Family loyalty is very important. Communication—formal, polite Negative emotions conveyed by Vietnamese language has Religions include Buddhism, manner; limit use of touch. silence and reluctant smile; will smile several dialects; also Confucianism, Taoism, Cao Di, Respect conveyed by non- even if angry. Head is sacred—avoid French, English, Chinese Hoa Hoa, Catholicism, occas- verbal communication. Use touching. Back rub—uneasy exper- ional ancestral worship. General both hands to give something ience. Common folk practices—skin respect and harmony. Super- to an adult. To beckon some- rubbing, pinching, herbs in hot water, natural is sometimes used one, place palm downward balms, string tying. Misunderstanding as an explanation for disease. and wave. Don’t snap your about illness—drawing blood seen as fingers to gain attention. Per- loss of body tissue; organ donation son’s name used with title, i.e. causes suffering in next life. Hospital- “Mr. Bill,” “Director James.” ization is last resort. Flowers only for “Ya” indicates respect (not the dead. agreement). FIGURE 10-1, cont’d. 2008 had a bachelor’s degree or higher. The percentage health and lack of compliance with health informa- who had completed high school varied considerably tion.146 Because many patients may not possess health by race and ethnic origin in 2008: 82.3% of whites, literacy and therefore be more prone to poorer health, 73.9% of Asians and Pacific Islanders, 59.8% of more frequent use of health care services, and less able African Americans, and 45.9% of Hispanics.145 In to manage chronic medical conditions,147 it behooves spite of the fact that the educational level of older the physical therapist to improve the usability of adults has risen, only 12% of U.S. adults are health health information. literate. Health literacy—the ability to obtain, process, and understand health information needed to make Best practices in health communication can aid in informed health decisions—is associated with poor improving health literacy. These best practices, described in Box 10-2, have been developed from work with

CHAPTER 10  Motivation and Patient Education 201 BOX 10-2 Best Practices in Health therapist should sequence instruction from simple skills Communication to Promote Health and concepts to the more complex ones, with sufficient Literacy supervised practice to ensure the correctness of perfor- mance and to develop the patient’s learning readiness to • Identify the intended users of the health information and progress to more difficult and complex tasks. services • Who is affected (consider culture, age, literacy, economic Learning Styles and Information Processing. ​ context, etc.) Learning style refers to how information is processed • Communication capacities and is unique to each individual. An individual’s learning style determines the consistent way the individual re- • Evaluate users’ understanding before, during, and after the in- ceives, retains, and retrieves information. Learning style troduction of information and services also includes how an individual feels about and behaves • Talk to members of targeted group in instructional experiences. An individual’s learning • Pretest materials style often is identified at one extreme or the other of any • Assess material’s effectiveness after use given learning style continuum—a classification that is probably too rigid to be realistic. • Acknowledge cultural differences and practice respect • Cultural factors include race, ethnicity, language, nationality, An individual’s typical mode of perceiving, thinking, age, gender, sexual orientation, income level, and occupa- problem solving, remembering, selecting, and organizing tion. information and educational experiences defines how • Consider biases toward that individual processes information. McLagan de- • Accepted roles of men and women scribes three primary dimensions of information pro- • Value of traditional medicine versus Western medicine cessing as continua: content, initiative, and tactics—each • Manner of dress of which has its own continuum.149 She also emphasizes • Body language that a profile that responds to specific functions is more descriptive and realistic than labeling an individual at a • Make written communication look easy to read fixed point on any of the three continua. These three • Minimum of 12-point font, avoid using all capital letters, continua are described next. fancy script, etc. • Keep line length between 40 and 50 characters. Content, the first dimension, ranges from a detail • Use headings and bullets to break up text. learner to a main-idea learner. The detail learner will be • Leave plenty of white space around margins and between attentive to the step-by-step explanation of a procedure sections. but is less attentive to the overall goals of the therapy. The main-idea learner will be eager to hear about the (From Quick guide to health literacy; fact sheet. U.S. Department of Health overall goals but may be less attentive to specific instruc- and Human Services Office of Disease Prevention and Health Promotion. tions and details.149 For example, a detail learner will be Available at: http://www.health.gov/communication/literacy/quickguide/ more interested in the number of repetitions and appro- factsbasic.htm.) priate time of day to perform the exercise, whereas a main-idea learner will want to know the purposes and people with cancer and chronic disease and apply to possible outcomes of the exercises. written and oral communication. Some general guide- lines include using simple language, defining medical and Initiative, the second dimension, ranges from an technical terms, providing culturally appropriate infor- active/aggressive/energetic learner to one who is pas- mation, using clear pictures, and focusing on action. sive in instructional sessions. The active/aggressive/ energetic learner exerts a high degree of initiative and Learning Readiness.  ​Learning readiness means that questions many aspects of the treatments, causes, and until basic skills are mastered, the mastery of more com- effects. However, conclusions may be reached errone- plex behavior is not possible. A number of factors can ously. At the other extreme, the passive learner is one affect the patient’s readiness to learn, some of which are who exhibits little initiative and who must be encour- closely related to the patient’s motivational intensity aged to participate actively in treatment sessions.149 A discussed earlier. Studies have indicated that extensive passive learner is a greater challenge to the instructor practice is necessary for older adults to develop learning and does not necessarily indicate an unwillingness to readiness.148 Learning appears less effective if practice is learn. discontinued before the learner gains sufficient compe- tence and confidence in the task. For older adults to The third dimension, tactics, refers to how informa- process information into their first or primary memory tion is processed in terms of organization and structure. store, application, practice, and rehearsal are essential. The analytic learner processes best when structure is present and when step-by-step explanations and demon- To assess the patient’s learning readiness for psycho- strations are presented sequentially. The intuitive/creative motor activities, the therapist must determine the exist- learner, on the other hand, responds best to instruction ing level of physical strength and skills and build from that is less structured and more open-ended. Problem those points. To assess the patient’s understanding of the solving and shared decision making in treatment sessions reasons and need for therapy, the therapist would deter- mine the patient’s level of understanding of the particu- lar physical condition and prescribed treatment. The

202 CHAPTER 10  Motivation and Patient Education are more productive with the intuitive/creative informa- Visual Changes.  D​ ecreases in acuity, accommoda- tion processor.149 tion to dim lighting, and lens transparency are signifi- cant visual changes that may affect the patient’s ability In summary, Cassata condensed a number of findings to learn effectively. The decreased sharpness of vision, related to cognitive aspects of the older adult learner150: or acuity, implies that details in print materials and il- lustrations are more difficult for the older patient to see • Patients forget much of what the doctor tells them. clearly. Therefore, illustrations in patient education • Instructions and advice are more likely to be forgot- materials need bold lines, a minimum of detail, and a plain print style. In the same manner, decreased accom- ten than other information. modation creates difficulty in the lens adjusting to dif- • The more patients are told, the greater the propor- ferent light intensities and to color differentiation. Bright overhead lights in the clinic may create accom- tion they will forget. modation difficulties for the older patient, just as dim • Patients will remember (a) what they are told first lights may make visual perception more difficult. The patient should not be placed in a position that faces any and (b) what they consider most important. source of glare. For patient education materials, black • Intelligent patients do not remember more than less ink on nonglare yellow paper for optimum acuity and accommodation should be used. Decreased lens intelligent patients. transparency may be due to external as well as to inter- • Older patients remember just as much as younger nal causes. The therapist should make certain the patient’s glasses are clean and should provide magnify- ones. ing aids, if needed, when referring to patient education • Moderately anxious patients recall more of what materials.151 they are told than highly anxious patients or patients Hearing Changes.  H​ igh frequencies, such as the c, who are not anxious. ch, f, s, sh, t, and z sounds, are more difficult for older • The more medical knowledge patients have, the more adults to distinguish clearly. By asking the patient to re- they will recall. peat what was heard, the therapist can detect problems • If patients write down what the health provider says, and correct errors. The therapist’s pace of speech and they will remember it just as well as if they only clear enunciation are more important than volume be- hear it. cause slow or loud speech does not necessarily increase reception. Background noises need to be controlled be- Physiological Aspects.  ​A number of changes occur cause the older patient may have difficulty screening with aging that can be accommodated by the therapist to sounds. Patient education materials that have illustra- facilitate the older patient’s learning. These changes, tions and audio/videotapes with individual headsets can similar to the ones that can affect motivation, may assist the hearing-impaired patient.151 involve neurologic functions, vision and hearing impair- ment, and diminished motor dexterity. Worcester151 Motor Changes.  ​A number of changes in the muscu- relates these physiological changes to patient education. loskeletal condition of the older patient may affect his or her ability to respond to treatment. Adequate time must Neurologic Changes.  ​Neurologic changes that may be provided to accommodate slower movement and re- affect learning are slower nerve transmission, which af- sponses, and adaptive equipment, as appropriate, should fects pacing; decreased short-term memory; and a larger be available. The therapist should plan to have the pa- store of existing information that must be integrated into tient begin with simple tasks that can be accomplished, the treatment setting. Slower nerve transmission can then build to more complex tasks.151 slow the reception of information and reaction times of Implications for Patient Education Materials.  ​This the patient and therefore create the need for more time discussion of the cognitive aspects, physical changes, and in the treatment session. Implications for instruction in- health literacy has particular implications for patient clude sensitivity to the pacing of instruction and speech education materials. The vocabulary level, sentence and frequent assessment of the patient’s level of under- length, complexity, and organization of content should standing.151 be examined carefully for comprehension. Reading level for print materials should approximate fourth- to sixth- Decreased short-term memory can cause difficulty in grade level for maximum patient comprehension. Visual retaining new material and necessitates repetition and changes experienced by older adults dictate using clear, adequate practice time. Short-term memory can be en- simple print styles. Black ink on nonglare paper hanced through multisensory approaches, that is, visu- and distinctly contrasting colors are recommended. als, models, demonstrations, and patient education ma- Patient education materials should be tested with a terials. The volume of information accumulated over a representative sample of the audience for whom they are lifetime can interfere with learning when the new infor- designed for clarity, comprehension, cultural accuracy mation is not congruent with prior information and ex- periences. Cognitive overload—too much information— also is a potential factor. Strategies for effective instruction can be used to assess the patient’s knowledge base about the particular physical condition, make con- nections between prior knowledge and new knowledge, clarify any misconceptions, and present less material in each treatment session.151

CHAPTER 10  Motivation and Patient Education 203 and sensitivity, and readability before production—an 5. Did I present information and examples that were instructional and cost-effective strategy. relevant to my patient? Did I keep the instruction focused on the main points without cluttering my In summary, the therapist ideally facilitates the older patient’s information-processing mode with extra- patient’s move toward self-direction, adherence, inde- neous material? Were my examples clear and to the pendent problem solving, and error detection. There- point? fore, consideration should be given to the positive impact that occurs when learning style and information 6. Did I prevent or avoid an information overload for processing are investigated, assessed, and used. Aware- my patient? Did I present information appropriate ness of the physical changes that occur in the older for the time I had with my patient? Did I limit my patient can enhance the learning experience when instructional aids or handouts to those that empha- appropriate techniques are applied. Time spent in careful sized the major points? assessment of the many cognitive aspects of learning and the physical changes can create a more productive 7. Were my handouts and other instructional aids ap- instructional time for each patient. Older patients in propriate? Were my handouts organized, clear, sim- treatment sessions will exhibit characteristics of older ple, and legible? Was the reading level appropriate adult learners. The therapist who is aware of the cogni- for my patient? Did they accommodate any vision tive and physiological aspects discussed in this section is impairment? better prepared to work more effectively and efficiently with older patients and to facilitate their progress in 8. Did my patient have enough practice time? Did I treatment sessions. remember that older learners do not respond well under pressure or on timed tasks? Did I help Assessment of Learning my patient develop a sense of confidence in the task? Were my verbal and nonverbal feedback rein- Patient education is only as effective as the results of the forcing? education and learning experiences. Because instruction has occurred, it cannot be assumed that learning has 9. Did I help my patient by providing cues to proper been accomplished. Without evaluation, the instructor performance? Did I coach my patient during the has no information on the success of the instructional practice period? Did I point out any specifics that activity. The effectiveness of the educational experience my patient could monitor to determine correct or can be evaluated in many ways that vary from tradi- incorrect performance? tional tests. Variations of the question-and-answer for- mat include learning contracts,114 self-report,152 inter- 1 0. Was I sensitive to my patient? Was I aware of my view, diaries, checklists, and return demonstration. patient’s reaction to the information I presented? Self-Assessment Questions for the Therapist.  ​The Did I try to see things from the patient’s perspective? following questions, identified by Freedman and adapted by Gardner et al., may be helpful in a self-assessment of The effectiveness of instruction is greatly enhanced by instruction and interaction153: clear, concise, and direct verbal expression. The therapist’s nonverbal communication through body language, voice 1 . Have I correctly assessed what my patient knows? tone, and eye contact should inspire confidence in the What has been taught before, and how much does my therapist without limiting interaction or intimidating the patient remember? What technical terminology needs patient. The therapist’s verbal and nonverbal behaviors to be reviewed or clarified? can contribute significantly to creating a positive learning environment that is conducive to positive and productive 2. Am I certain that I know what needs to be taught and interaction between the patient and the therapist. what my patient should be able to do as a result of my instruction? Do the objectives reflect our negoti- CASE STUDIES ated goals? Are they in the appropriate sequence? The following three scenarios illustrate selected princi- 3. Have I planned an introduction to the instruction? ples that have been presented in this chapter. As the Have I planned how to communicate clearly what reader reviews “The Incident” and “The Dialogue” sec- will be taught and what my expectations are in this tions, significant points that relate to the chapter’s con- session? tent should be noted. The reader should also check to see whether these points are included in the “Discussion” 4 . Did I present the information clearly and give and “Summary” sections. The reader should identify pertinent examples? Did I confuse my patient in my more points than are included in those sections. instruction? Was my instruction in logical sequence, with pauses for my patient to assimilate the informa- Scenario 1: The Inattentive Learner tion and to ask questions? Were my directions clear? Were there clear-cut guidelines for my patient to The Incident.  Mr. Smith, a 75-year-old African American follow? male, was admitted to a rehabilitation facility 2 weeks ago for stroke. Although he has been willing to work toward

204 CHAPTER 10  Motivation and Patient Education his goals in all previous sessions, today he is inattentive to With encouragement and another open-ended ques- the therapist, as observed by his lack of eye contact, fidget- tion, the therapist facilitated the patient’s problem- ing, head movement, and other body language indicators. solving skills. The patient was allowed to maintain The therapist has to repeat instructions and questions, and autonomy and empowerment and was allowed to deter- basically no progress is being made. mine how specific needs could be met. The therapist also demonstrated valuing (prizing) of the patient by The Dialogue addressing the patient’s need and by referencing the patient’s accomplishments in therapy as well as past ex- Therapist: Mr. Smith, you seem to be preoc- periences. Patient: cupied today. What’s on your Scenario Summary.  ​The therapist recognized that the Therapist: mind? patient’s problem was primary to the patient and that the therapy was low on his priority list. Therefore, the Patient: Well, as a matter of fact, I’ve got a patient was not ready to learn. By having the patient problem I need to take care of at identify the reason for inattentiveness and then using Therapist: the bank, and I don’t know how those needs and concerns, the therapist was able to ne- Patient: or when I can take care of it. gotiate the activity for this treatment session. Therefore, Therapist: the patient’s goals were accommodated and progress I can understand why you are pre- toward the discharge goals was made. Patient: occupied. Anytime my bank Therapist: calls me, I get worried, too! Scenario 2: Learned Helplessness What could we do to help you with this problem? The Incident.  Mrs. Aziz, a 69-year-old Arabian female, has an above-knee amputation and has been referred to Well, I really need to personally physical therapy for prosthetic training. Her husband, talk with my banker as soon as who appears impatient and unwilling to let his wife at- possible. But I just don’t see tempt any task, accompanies her. She appears passive how I can do it. (Pause) Do and willing for, if not expectant of, his assistance. During you really mean that you the evaluation, her passiveness and helplessness also ap- would help? pear to be her pattern of behavior in the home setting. The Dialogue The best we can do is to at least try. What do you need? Therapist: Mrs. Aziz, what would you like to be able to do at home that you I need a ride because I have to take Patient: aren’t doing now? care of this in person. But I Therapist: don’t know if I can get in and Patient: Well, I’d like to be able to do things out of the car! Therapist: in my kitchen. Husband: If I can arrange a car and driver Therapist: What kind of things do you want for this afternoon, would you Husband: to do? be willing this morning to work on how to get in and out Therapist: I want to be able to cook dinner and of a car? Patient: do the dishes. Do you really think I can learn Is your husband doing those how to do that this morning? things now? Yes, I think you can with some hard Yes. I cook and do the dishes be- work. You already have worked cause my wife can’t stand up. hard on improving your bal- ance, and besides, you’ve been What would you like for your wife getting in and out of cars all to be able to do? your life. Let’s go do it. I’d like for her to be able to stay by Discussion.  ​The therapist recognized that the patient herself so I can get out and do my was distracted and preoccupied and that there was an work. But that would mean I’d obvious obstacle to a productive treatment session. The have to leave her alone, and I just therapist provided an opportunity for the patient to can’t do that. communicate the factors that were creating interference with this treatment session by asking an open-ended Mrs. Aziz, do you think that you question that gave the patient the opportunity to state could be able to stay by yourself? his need. The therapist further demonstrated authentic- ity and empathy to the patient’s concern in agreeing Well, my husband does everything that a call from his banker also would concern this for me now. I don’t know if I can therapist. or not.

CHAPTER 10  Motivation and Patient Education 205 Therapist: Mr. Aziz, it is important to realize Scenario 3: The Dominant Hurried that your wife can learn to do a Therapist Husband: number of things for herself if Therapist: she is given the opportunity. The Incident.  Mrs. Miranda, an 80-year-old Hispanic However, it means that you have female, checks in for her scheduled appointment at an to allow her enough time to per- outpatient clinic. She tells the receptionist in a thick ac- form a task in her way without cent that her granddaughter insisted she come and see interfering or taking over. about the pains in her right shoulder but that her grand- daughter couldn’t come with her. After a considerable That’s really hard to do. It is easier period in the waiting room, she was shown to a treat- and quicker for me to do it for ment cubicle by the receptionist and was told to wait for her. Besides, she was so sick that the therapist. The therapist eventually rushed into the she really needed my help. cubicle and, without introduction, told the patient that he was here to “fix her shoulder.” I understand that. You obviously The Dialogue have done a terrific job, and lots of husbands would not have Therapist: So, honey, the receptionist tells me done as well as you have. How- your left shoulder hurts. I think ever, she’s progressing so well Patient: we can fix you up in a jiffy that she is ready to learn to walk Therapist: if you’ll just do what I tell you on her artificial leg. For both of to do. you to regain the independence Patient: you both want, she needs the Therapist: (Hesitantly with accent.) Well, really, opportunity, the time, and the Patient: it’s my— encouragement to begin practic- Therapist: ing those things that together we (Interprets.) What? Here, let’s look decide are the next steps in her Patient: at your shoulder. (Therapist treatment program. Therapist: proceeds to examine left shoul- Discussion.  ​The therapist recognized that some social der.) I’m going to get a hot pack barriers prevented Mrs. Aziz’s willingness to participate to put on your shoulder. Wait fully in a treatment program designed to promote her here. independence. Chief among these barriers was her hus- Si, si. band’s overt willingness to assist in her every movement. What? The therapist was sensitive that this level of caregiving Si. was required initially and positively acknowledged the Oh, well, whatever. (Therapist re- husband’s caregiving. turns with the hot pack and The therapist recognized that in order to achieve the places it on left shoulder.) While level of independence that both the Azizs desired, less the heat’s on your shoulder, assistance would be required from the husband here’s a sheet of exercises I want and more initiative from Mrs. Aziz. The therapist you to do. Eyeball these, and I’ll achieved this in a supportive manner by focusing on be back in a flash. both of their goals while describing the process in (Looks at the sheet, but her lack of achieving those goals. In this way, goal negotiation is a mutual agreement rather than a unilateral decision by proficiency in English impedes the therapist. Scenario Summary.  T​ he therapist recognized the her understanding. Folds sheet husband’s caregiving in a positive manner and then and puts it in her lap.) literally gave the husband permission to decrease the (Returns and removes heat.) Well, I level of caregiving as part of the treatment program, know your little shoulder feels thus avoiding the exclusion the husband might feel as lots better now. Like I told you, his wife worked toward greater independence. The honey, you just do these exer- therapist also made the wife aware that her physical cises like it says, and I’ll see you condition now will safely accommodate increased next week. activity and encouraged the patient’s initiative by focusing on the patient’s goal of being able to work in Discussion.  ​Mrs. Miranda’s ethnicity may imply a her kitchen. low health literacy and lack of knowledge of the U.S. health care system. Her granddaughter, on the other hand, as a third-generation Hispanic, has become enculturated and recognized that her grandmother’s traditional home remedies could be supplemented by

206 CHAPTER 10  Motivation and Patient Education professional care. Mrs. Miranda has some suspicion SUMMARY about people caring for her in an unfamiliar environ- ment, but to please her granddaughter, she agreed to Even the most competent therapist can be successful go to the clinic. In addition, Mrs. Miranda is aware of with older patients only to the degree that the patient her limited English proficiency and her thick accent chooses to participate fully in the treatment regimen for and is reluctant to speak when away from her com- the necessary time period. Given a therapist with the munity environment. appropriate knowledge and skills in treatment tech- niques and modalities, the degree of success with a ma- Often an older person has a greater comfort level jority of older patients will depend (1) on the patient’s with a nonauthoritarian person than with one who physical condition, level of motivation, caregivers, and represents power and expertise. Mrs. Miranda told the support systems and (2) on the therapist’s skill as a receptionist and her granddaughter about her right patient educator. shoulder pain; however, she did not persist in her at- tempt to correct the therapist when he placed the heat A therapist who is a successful older patient educator pack on the wrong shoulder. Further, she did not tell has developed the following: the therapist that she could not read the exercises on the paper that he gave her. No effort was made to • A philosophy of patient education based on (a) some determine her understanding or to demonstrate and knowledge of learning theories from which a domi- practice the exercises. nant orientation has evolved and (b) clarification of the therapist’s approach as one of patient empower- This lack of communication occurred not only be- ment instead of authoritarian cause of Mrs. Miranda’s natural reluctance but also because of the therapist’s dominant behaviors. The • An awareness of the characteristics of and sensitivity lack of an introduction, the ageist remarks, and no to the older patient as an older adult learner elicitation of the patient’s needs or reasons for being at the clinic are examples of these behaviors. The • The ability to develop negotiated goals with patients therapist’s body language also communicated to the • The ability to facilitate patients’ learning patient that time was not available for attention to her • A willingness to regularly and honestly assess the situation. The numerous slang words used in the thera- pist’s hurried speech only confounded Mrs. Miranda’s quality and results of the instruction provided difficulty with English. No directions were given concerning how she would make an appointment for Patient education as an intervention has a solid base next week. in educational psychology and instructional theories as Scenario Summary.  ​This scenario attempts to present a well as in everyday experience and practice. Older negative role model for patient interaction that could patients need and deserve therapists who recognize result in, at the very least, ineffective treatment perhaps the importance of this intervention and who will work even to the wrong shoulder, and at the very most, the to develop and enhance their competency as patient patient could actually be harmed if she didn’t under- educators. stand safety instructions. When communicating with an older person without fluent English, care must be given REFERENCES to adequately assess the level of English proficiency. The possibility that cultural perceptions of health care deliv- To enhance this text and add value for the reader, all ery can impede treatment necessitates the therapist’s in- references are included on the companion Evolve site creased sensitivity. A willingness to assess the patient’s that accompanies this text book. The reader can view the understanding, the rate of speech, diction, attention to reference source and access it online whenever possible. the patient’s nonverbal reactions, and courtesy demon- There are a total of 153 cited references and other gen- strate this sensitivity. eral references for this chapter.

11C H A P T E R Older Adults and Their Families Michelle M. Lusardi, PT, DPT, PhD INTRODUCTION in later life: decisions about continuing to drive an automobile. Physical therapists and other health professionals caring for aging adults routinely inquire about the availability of DEFINING THE FAMILY a spouse or adult children for assistance with home exer- cise programs or with basic and instrumental activities of To understand how families function in later life, we daily living.1 We seek to involve family members as infor- must first define the term. Few families currently “fit” mants during examination, as participants in goal setting the post–War World II view of the American family as and the rehabilitation process, and contributors to dis- a succession of relatively independent nuclear sets of charge planning. We believe that such inclusion enhances parents and their children.5 Family has changed in both outcomes of and satisfaction with rehabilitation many ways. In the early 20th century, many family and wellness care.2 Although we would like to think that members lived in relative proximity to their family of having a spouse or adult child available as caregiver is a origin and had frequent “in person” interaction. In resource that can be counted upon, we quickly learn contemporary society, however, families tend to be scat- that there are a variety of additional dimensions that tered geographically, as younger members move away influence availability, quality, and effectiveness of caregiv- to pursue job opportunities, and retirement-aged family ing and support.3 We work with some older patients and members move to locations where quality of life and family members facing incredible challenges who do cost of living are perceived as more attractive.6-8 amazingly well in very difficult circumstances. We also encounter families who perceive any degree of challenge Geographically scattered families use communication as a major crisis or disaster, making them unable to ac- technology (i.e., phone, e-mail, text messaging, social net- commodate even small additional needs from their older working, etc.) to stay emotionally and socially engaged. For family member. What accounts for these differences? some families, in-person contact has become a special event How do health professionals facilitate “healthy” solu- rather than a routine occurrence.9 Given this mobility within tions when there is a need for caregiving and support of families, a substantial number of older adults are “aging in an older family member?4 Framing the family as a dy- place” far from their adult children and other family mem- namic system helps us to understand the perspectives bers.10 When this is coupled with the American cultural from which the family operates, the ground rules and as- value of independence and self-determination, many older sumptions that influence decision making and interac- adults coping with chronic illness and associated functional tion, and the family’s ability to face stressors and adapt to limitations do not call upon their extended family networks changes. for instrumental care until a crisis situation occurs.11 At these times, health professionals are challenged to assist the older In this chapter, readers will explore family as a dy- patient in their care, as well as family members who may be namic system and a context for individual development threatened and overwhelmed by the acuity of the situation from a life span perspective, as well as models of family they are facing. Some older family members opt to relocate interaction that may provide insights that enhance from their distant retirement living residence to a location the efficacy of our care. Readers will explore the dimen- nearer to adult children when they have been widowed, be- sions of caregiving and care-sharing roles, as well as come physically challenged, or need assistance with manage- factors that influence the physical and mental health of ment of chronic health conditions.12 This reverse migration both care provider and care recipient. Finally, we will ap- requires flexibility and adaptation for all members of the ply these concepts to one of the difficult transitions that family, and it can be quite stressful to the family as a system. aging adults and their families are often confronted with Copyright © 2012, 2000, 1993 by Mosby, Inc., an affiliate of Elsevier Inc. 207

208 CHAPTER 11  Older Adults and Their Families provide to aging adults in the context of the patient’s family system. Figure 11-1 depicts Bronfenbrenner’s The complexity of today’s family structure, with the model of ecological development, which proposes a se- majority of American families “blended” as a result of ries of increasingly complex nested systems, with the divorce and remarriage, also influences how families are individual patient at the center and broad societal influ- able to respond to individual member needs.13 The num- ences at the periphery.18-20 The individual patient has a ber of nontraditional households is on the rise, where unique set of inherent attributes shaped by relationships individuals who are not related or legally bound, live and activities of the individual within the immediate together as family.14 Given these trends, health profes- environments (microsystem): immediate family and sionals may best define family as the group of individuals friends, leisure activities, organizations or church groups, who are most connected to our older patient by affec- etc. The direct relationship of a health professional and tion, knowledge, and care, whether this be a result of an older adult in the role of the “patient” represents a marriage or by choice.15 In looking at family as a com- microsystem-level activity. Interaction across multiple plex system, scholars in the field of family studies de- microsystems, such as family conferences, takes place at scribe family as a set of interdependent individuals, the mesosystem level. The next layer, the exosystem, in- across generations, who share history, are linked by cludes other social structures or organizations that may emotional bonds, and who do their best to meet the not include the individual himself or herself but influ- needs of each member and of the family as a whole.16 In ences what happens to the individual. This might include this chapter, we will use the word spouse somewhat the adult child’s work demands that limit availability to broadly to describe the individual, whether a married provide care; hospital policies; rules and regulations of partner or significant other, who has the primary emo- health insurances; mass media that deliver information; tional relationship with the older person needing care. and the local or national government agencies that set We must also note that, in an increasingly diverse soci- health care policy. The final layer of the model is the ety, the meaning of being “old” and the roles of and macrosystem: the overall cultural, economic, legal, and expectations for care of the oldest generation in a family political systems that influence the ideology and action vary by culture, as well as across generations.17 of the layers that preceded it. For aging adults, the po- litical debate about how health care and insurance sys- LIFE SPAN DEVELOPMENT tems should be structured and financed, what care should be routinely available, and eligibility criteria for Theorists from the fields of life span development and care, all occur at the macrosystem level. family studies provide models to describe the interacting influences on health professionals for the care they MACROSYSTEM Global EXOSYSTEM Legal History events system Neighbors MESOSYSTEM MICROSYSTEM FIGURE 11-1  Bronfenbrenner’s model of ecological Family INDIVIDUAL Church development. Extended Abilities Government family Health Ideology Gender Work Beliefs Friends Education Social groups Health care providers Media Relationships/interactions Social of microsystems services Health care system Culture

CHAPTER 11  Older Adults and Their Families 209 Health professionals build relationships with their FAMILY THEMES AND BOUNDARIES older patients at the microsystem level. At the meso- system level, we exchange information and ideas with The family provides context for the development of indi- other health professionals as part of the health care vidual family members over time, as well as for the growth team, as well as provide education and counsel to fam- and continuity of family as a whole. This is accomplished ily caregivers as decisions are made about priorities in three ways: (1) by defining and implementing family and anticipated outcomes. We provide care in the con- “themes” about what is important for its members to be- text of the agencies and organizations of which we are lieve, think, and do; (2) by socializing new, incoming, or a part, incorporating both the affordances and con- potentially wayward members about “rules” of behavior straints inherent in those systems (exosystem). We are necessary to ensure continuity of the family and the society influenced as well by societal perspectives on aging in which they live; and (3) by shaping and supporting in- and later life (both positive and ageist), rights of the dividual identities within the family system.21-23 individual, and the “good” of the collective whole (macrosystem). This chapter emphasizes effective in- Family themes serve as the organizing framework for teractions at the mesosystem level and challenges us to the family’s daily life and function, are the foundation be knowledgeable about the affordances and con- for both family and individual identity, direct thoughts straints in the exosystems and macrosystems in which and behaviors of family members, influence distribution we provide care. of resources (time, energy, emotional support, money) within the family, and determine the emotional climate THE FAMILY AS A COMPLEX SYSTEM in which the family operates.16 To develop the most ef- fective plan of care, health professionals caring for aging Each family has its own unique and complex structure, adults must consider explicit and implicit themes (i.e., composition, governance process, organization, and attitude, values, and beliefs) about health and illness; underlying culture, beliefs, and themes.16 A family’s ability/impairment, activity/functional limitation, and composition includes the number of generations that participation/disability; as well as about aging, death, make up the family and each person’s assortment of and bereavement.24,25 A family with a central theme of roles within and outside the family system. The gover- stoicism may respond to health-related problems very nance process includes both the overt and the implicit differently than families with a central theme of physical rules for communication, relationships and behaviors, perfection or “suffering is part of life.” Families that distribution of decision-making power, and patterns strongly value independence of members may respond to of interaction within the family. Organization refers caregiving needs very differently than would families to the family’s interdependent subsystems (spouses, who strongly value nurturance. A family with themes of parent–child, sibling connections, grandparent–child, respecting authority may be difficult to engage in health and relationships with the extended family) as well care decision making, instead waiting for health care as the individual development status of each family providers, as experts, to determine what should be done. member (their position within his or her life span and in the life span of the family system). Variability in Family themes are greatly influenced by cultural con- structural relationships emerge with the blending text.26 Some ethnic or cultural groups may consider ill- of cultural and ethnic backgrounds and differing expec- ness or disability penance for past wrongdoing; others tations and relationship rules as members are added to may perceive ill health as tragedy, as blessing, or as chal- the family through marriage or partnership, or lost to lenge to be overcome.27 To deliver culturally competent divorce and death. Historical events and sociocultural care, health care providers must incorporate the cultural change also shape expectations and experiences within themes (while taking care to avoid stereotyping) in com- and across generations of the family, subtly or signifi- munication, goal setting, care delivery, and planning for cantly influencing family structure, organization, and future health care needs.28 rules. Each family has a set of rules and strategies for man- aging both internal and external interactional bound­ aries.16 External boundaries, as depicted in Figure 11-2, Closed PERMEABILITY OF A FAMILY’S EXTERNAL BOUNDARIES Open Balanced All others “out” Interchange across family’s boundary Everybody “in” FIGURE 11-2  Continuum of permeability and Rigid membership structure Loosely defined membership structure characteristics of open and closed external High value for privacy Physical/emotional “space” open to others boundaries. Limited communication across boundary Easy flow of information across boundary Well-defined rules for interaction with others Changeable rules for interaction with others Limited trust outside of the family Comfortable interaction with others

210 CHAPTER 11  Older Adults and Their Families or injury. A related construct, cohesion, the strength of emotional attachment between family members, is dis- can be thought of on a continuum from closed to open. cussed below under the heading of adaptability and re- The permeability of a family’s external boundaries influ- sponsiveness to change.30 ences communication with persons outside of the family, ability to accept recommendations and assistance from MANAGING ESSENTIAL FAMILY DAILY others, and the depth of relationships and level of trust FUNCTIONS AND TASKS extended to others, including health care providers.29 Families of aging adults who have strongly “closed” Families have in common the instrumental activities that boundaries may be reluctant to share information with ensure that each member’s needs for food, clothing, shel- health professionals or ask for assistance during times of ter, education, and development are met. These include stress. They may perceive a recommendation for home setting and managing schedules, housekeeping and cook- care following an acute care stay as invasion of their ing, shopping for clothes and doing laundry, dealing privacy, wanting instead to manage on their own using with bills and other financial concerns, providing per- resources within the family for assistance. At the other sonal care, and accessing resources within and outside end of the continuum are families with very open bound- the family. The family system must determine “who does aries who may “adopt” health care providers as central what” for the family and for each of its members. It members of the family, wanting to include these caregiv- must have rules and strategies in place to face challenges ers in family events and rituals long beyond the period of and solve problems resulting from competing demands care. The majority of families are able to strike a func- inherent in a multigenerational system.31 The system tional balance between these extremes, maintaining must also manage the health care needs and routines of enough closure to facilitate family identity and enough members, often most pressing for the youngest and the openness to allow members to have friendships and rela- oldest generations.32 The resources that a family brings tionships outside the family system, and to access exter- to bear in managing daily tasks include time, energy, and nal resources when necessary. money as well as the individual strengths and abilities of family members. Each family sets priorities about re- There are additional rules and strategies for internal source distribution and use based on the family’s govern- boundaries of the relational subsystems and individuals ing values, beliefs, and attitudes. Observation of a fam- within the family. These rules relate to how the family ily’s decision-making process about resource use reveals tolerates individuality and autonomy, and the way that a great deal about power structure within the family distances are regulated between members within the system. family.16,23 Some families have rules that strongly en- courage dependency of members on the family system. The continuum of management strategies used by a In such families, individuals may have little privacy, and family system to make decisions about and manage daily what impacts on the individual member affects the tasks is illustrated in Figure 11-3. One extreme along whole. Other families encourage members to keep to the continuum represents underorganization and the themselves, such that interaction and resource sharing opposite extreme represents overorganization. Although among members is limited. Optimally, families achieve a most families achieve a degree of balance between these functional balance between autonomy and connected- extremes in management of resources, those at the ness, such that the family can be responsive to the chang- extremes of the continuum often experience a great deal ing needs of aging family members.30 Problems arise of stress. Lack of advanced planning and insufficient when the goals of the individual are different enough clarity about caregiving needs following an older family from the goals of the family; this creates tension within member’s discharge from an acute hospital stay, al- the family system. A frail aging parent’s determination to though often automatically labeled as “not caring” by remain independent and at home may be at odds with health care providers, may actually be evidence of an his or her spouse’s or adult children’s need for safety when such determination increases risk of falls, accident, Underorganized MANAGEMENT STRATEGIES Overorganized Balanced FIGURE 11-3  Continuum of strategies Ineffective Effective Ineffective for management of a family’s daily tasks Few defined strategies; chaotic operation Rigidly defined strategies and activities, and their related charac- Confusion about responsibilities Clearly defined responsibilities and expectations teristics. Little advanced planning Frequent disruption of family schedules Significant degree of advanced planning System stress related to chronic disorganization Inflexible scheduling High system stress with disruption of routine

CHAPTER 11  Older Adults and Their Families 211 underorganized family system, operating without clear for daily management of family tasks and needs; and rules and expectations.33 Overorganized systems, on the (4) renegotiate rules and strategies for management of other hand, work well when things are routine but may the family’s emotional climate.16,38 be substantially disrupted when illness or some unan- ticipated event occurs.34 Such families may insist that The difference in the experience of these stressors previous routine take priority when adaptation of rou- lies in the family’s ability to prepare for necessary tine would better serve individual members. Whatever changes. Stress management may be complicated the decision-making processes and level of organization, by family legacy: the myths, values, and unresolved families tend to use resources in a manner consistent conflicts that are carried across generations.38 In with the identity themes and rules that define them as a addition, it is not uncommon for multigenerational unique family.16 As a family moves through its life cycle, families to experience multiple normative and nonnor- developmental changes influence the needs of members mative stressors either simultaneously or within a and availability of resources, priorities and decision- short time period. The need to manage overlapping making power shift, and the responsibility for mainte- stressors exponentially increases pressure for adapta- nance tasks has to be redistributed. tion of the family system, and demands greater flexibil- ity in the roles and responsibilities of the members of In older person care, it may become evident that an the family. adult child and his or her spouse have different percep- tions and expectations about caring for aging parents, Adaptability and Change based on the rules about relationships (internal boundar- ies) in their individual families of origin.35 This adds to Families vary in their ability to tolerate differences family system stress as adult children attempt to meet the among members, to meet challenges placed on the sys- needs of aging parents while simultaneously nurturing tem by developmentally anticipated events (e.g., mar- their marriage, launching their own children, and being riage, birth of a child, graduations, relocation to differ- involved in the lives of their grandchildren.36 Health ent geographic areas, retirement) as well as to professionals caring for senior members of the family unpredictable events (e.g., sudden or chronic illness, may need to facilitate negotiation about use of the fam- trauma, job loss, being victim of crime, natural disaster, ily’s available resources when differences in expectations historical event, or death of a family member) that create system stress. In situations where conflict is prob- potentially change family structure. The ability to lematic, referral to a family therapist or counselor may effectively adapt both structure/organization and roles/ be necessary.37 responsibilities in carrying out essential family tasks in response to such challenges to the system can be thought MANAGING FAMILY STRESSORS of as a resource for the family.39 The ability to adapt is related to the family’s cohesion, flexibility, and ways of In family systems models, stressors are defined as events communicating.30 or situations that pressure the family system to change their structure or function, or to alter the way the family The family cohesion continuum, illustrated in Figure typically manages its primary tasks.16,38 Normative 11-4, refers to the family’s ability to balance member stressors (typical stressors anticipated at specific times individuality with family togetherness. The level of cohe- across the life cycle) may be positive or negative. Positive sion within a family is determined by the strength of stressors include such things as the addition of a new emotional bonds between family members. When there family member by marriage, birth of a child or grand- is a healthy level of cohesion, family members are inter- child, “empty nesting” after successfully launching one’s dependent and emotionally close while, at the same time, children, or retirement from a long-held job with the able to respect each other’s unique characteristics and anticipation of enjoying the “golden years.” Negative interests.40 Families at the enmeshed end of the cohesion normative stressors include physical decline and death in continuum tend to experience an event affecting one of the very old. Nonnormative stressors, such as sudden job their members as an emotional whole; decisions about loss or economic downturn that affects family financial health care include the entire family system, and assis- resources, sudden illness or injury experienced by a fam- tance or support may be provided in a way that chal- ily member, chronic unpredictable illness, or the unex- lenges goals of independence for the individual member pected death of a member of the family, often place a receiving rehabilitation care. At the opposite end of the family in crisis. continuum, families who are disengaged may be very difficult to involve in decision making or caregiving, as Stressors, whether positive or negative, require the connectedness between members is tenuous. Families the family to (1) adapt their self-definition, themes, and at the center of the continuum are thought to have associated rules and patterns of internal interaction; achieved a functional “balance” between the family as a (2) reevaluate internal and external boundaries and whole and individual members. Such families are more adjust the family system’s permeability; (3) consider and likely to be adaptive in the face of challenges faced by reprioritize the distribution of their collective resources aging members.

212 CHAPTER 11  Older Adults and Their Families Very low DEGREE OF COHESION Very high Moderate Disengaged Separated Connected Enmeshed “I” focus “We” focus FIGURE 11-4  The continuum of cohesion within family Balanced in “I” – “We” relationships systems. Absent or minimal emotional bonds Extreme emotional bonds Negligible connectedness Tremendous connectedness Primary focus on individual needs Importance placed on family needs Low affiliation with family Indifference Total affiliation with family Members independent in thought/action Strong loyalty Members dependent in thought/action As long as all members of the family are satisfied and Families at either extreme of the flexibility continuum accepting of relationship rules shaped by the family’s are likely to have significant difficulty addressing changes underlying culture or ethnicity, the family system will in the role and needs of an older adult family member function effectively. when disease or disability alters the capabilities of an aging family member. Although it is not the role of rehabilitation profes- sionals to “fix” dysfunctional families, recognizing that Communication is a key modifier of the operation families are operating at the enmeshed end of the con- and structure of the family; it is the facilitating mecha- tinuum might prompt referral to a family therapist or nism when change within the family system is necessary social worker better prepared to help families sort or when the family system is under stress.40 Components through options and facilitate adaptation. Recognizing a of effective communication include each member’s abil- family with characteristics of disengagement would ity to listen to others (degree of attentiveness and empa- prompt referral to formal systems of support (e.g., geri- thy for other family members), to effectively interpret atric care managers, home health agencies, community- what is being said (remain “on target”), to effectively and nonprofit-based senior services) to augment caregiv- express thoughts (degree of engagement and acceptance ing resources for an aging family member. of other’s thoughts and feelings vs. being confronta- tional), and ability to accurately self-disclose, and re- Flexibility, described along the continuum outlined in spect and regard for other members during interchange. Figure 11-5, refers to the family’s responsiveness to fac- Communication within the family is influenced not only tors that might alter or change family organization or by the content being discussed or exchanged, but also leadership, roles and relationships of family members, or by the individual family member’s tone of voice, style of rules of family operation.41 To be optimally functional, delivery, nonverbal behaviors, and underlying or implicit there is a need for both a sense of stability and the pos- messages. Culture and ethnicity are also powerful sibility of change within the family system. An effectively influences on nonverbal (eye contact, touch, personal flexible family allows individuality of its members while space, posture, among others) and spoken (directness of concurrently maintaining a sense of connectedness. statements, ability to ask questions, among others) com- Families who are structured or flexible in orientation are munication. Health professionals who are able to fit able to negotiate changes in roles, rules, and organiza- their communication style and strategies to those of a tion, although at times this requires effort. Families who family will be more effective in gathering and sharing are rigid tend to resist any change, focusing instead information and in assessing the effectiveness of such on maintaining existing roles and their corresponding exchanges. Communication skills and strategies, to some relationship rules. Those whose systems are chaotic extent, can be learned. When rehabilitation profession- lack rules of interaction among members and behave als determine that communication to and within the impulsively and inconsistently in their decision making. Very low DEGREE OF FLEXIBILITY Very high Moderate FIGURE 11-5  Continuum of flexibility within family Rigid Structured Flexible Chaotic systems. Resistant to change Balanced relationships Excessively changeable Authoritative Minimal leadership Highly disciplinary Erratic/inconsistent discipline Inflexible roles/responsibilities Dramatic shifts of roles/responsibilities Intolerant of change Ever-changing

CHAPTER 11  Older Adults and Their Families 213 family is somewhat problematic, we can model more essential family functions. Most stress-induced coping effective communication strategies. When communica- strategies aim to manage emotional responses and tion is significantly impaired, a referral to a family thera- solve the immediate problems presented by the stress- pist for intervention focused on enhancing communica- ors. Box 11-1 summarizes the common coping strategies tion within the family system may be necessary. used by individuals and families, on both the cognitive– perceptual–emotional level and on the behavioral level. Coping Resources, Strategy, and Efficacy The degree and duration of stressors are one of the de- terminants of whether a family’s coping responses will One of the ways that families immediately respond to be effective. Other determinants of coping efficacy in- stressors is to enact various coping strategies to mini- clude emotional, financial, and intellectual resources mize stress, thus allowing the family to continue with available to the family; spirituality and cultural values B O X 1 1 - 1 Examples of Cognitive–Emotional and Behavioral Coping Strategies Used by Individuals and Families Described in the Psychology and Family Studies Literature Cognitive–Perceptual–Emotional Coping Strategies Positive reframing Reinterpreting or redefining the stressor as a challenge to be overcome, a vehicle for growth or positive change, a means to bring the family together, or other positive outcome consistent with family beliefs and values. Reflection Examining and working through emotional responses to the stressor to gain understanding of self, others, and the stressor situation. Minimization or Temporarily or permanently reducing level of stress experienced by refusing to acknowledge the importance or effect denial of the stressor and the thoughts and feelings associated with the stressor. Withdrawal A response to being overwhelmed by the stressor event, associated with passiveness or reluctance to engage in dealing with problems associated with the stressor. Often associated with problems with motivation, adherence to intervention plans, and depression. Expressing anger Expressing frustration and pain resulting from the stressor by verbally or physically “acting out” in anger. This may be aimed at the situation, at the family member who is ill or impaired, at other family members, or at the health professionals involved in providing care. Crying Using the emotional release that follows a period of crying to release pressure associated with the stressor event. Acknowledges the grief process when the stressor event may lead to loss of function, role, personal meaning, or death. Bargaining Constructing an “if I/we do ____, then the desired outcome _____ will occur” framework as a way to provide a sense of control or mastery during a stressful situation. Cognitive rehearsal Imagining and preparing for a variety of potential outcomes for the stressful situation, in an effort to determine the most appropriate response to the stressor. Prayer and spirituality Turning to religious tradition or exploring one’s spirituality in order to understand or interpret stressors, and enhance emotional health when faced with unpredictable, threatening, or potentially life-altering situations. Humor Defusing negative thoughts and emotions associated with the stressor by recognizing absurdity of the situation, jesting or joking, or using wit, satire, sarcasm, or self-depreciation. Behavioral Coping Strategies Seeking emotional Ability to actively engage in acquiring emotional support from friends, relatives, and neighbors (informal support support systems). Seeking knowledge Ability to actively engage in learning about contributors to the stressful situation (especially health issues) from pro- fessionals, experts, and Web-based resources. Seeking instrumental Willingness to request and receive assistance from friends, neighbors (informal support systems), or from community help resources, agencies, support groups, or professionals (formal support systems). Active problem Identifying immediate problems and needs associated with the stressor, as well as organizing, delegating, and mobi- solving lizing resources necessary to manage and meet the needs of the family during periods of stress. Deferring other Adapting priorities within the family to meet the most pressing challenges of a stressful situation; postponing events or demands activities that compete for resources or interfere with the family’s ability to react effectively to the present stressor. Distraction or avoidance Engaging in other activities to avoid directly dealing with problems associated with the stressor event. Engaging in leisure Continuing with meaningful and pleasurable activities as a means of respite, an emotional outlet, for interaction with activities others, or to support self-esteem (“recharging”) in the midst of a stressful situation. Pacing Building opportunity for rest, entertainment, or other activities into the family’s or individuals’ activities related to managing the stressor. Relaxation techniques Using activities such as meditation, massage, listening to quiet music, and other activities to reduce the amount of physical and psychological stress during a crisis or an ongoing stressor. Use of alcohol or drugs Substance use or abuse as self-medication to relieve or escape from the stressor situation.

214 CHAPTER 11  Older Adults and Their Families employment of such strategies may be a necessary com- ponent of the ongoing process of coping when facing and beliefs of the family; and availability of informal stressful situations.45,48 and formal support systems.42 Resilience is a term used to describe the outcome or Cognitive–perceptual–emotional coping strategies in- efficacy of coping within the family system.49 Resilient clude appraisal of the event and determining its signifi- families are able to develop, enrich, and enact skills and cance, consistent with family themes and beliefs, so that resources that enhance their ability to cope. Resilient the family can understand the nature and potential im- families are able to40 (1) commit to working through pact of the stressor.43 Families will try to define the im- problems together; (2) sacrifice for the benefit of the mediate problems that need attention, framing them so family and its members in times of crisis; (3) preserve a that priorities and needs of family members can continue sense of emotional closeness while embracing individual- to be met, or be temporarily put aside, until the stress is ity of members; (4) remain open, clear, honest, and re- resolved.44 They will try to minimize the immediate emo- flective in their communication; (5) share purpose and tional aspects of the situation to avoid becoming entirely values that go beyond self-interest; (6) contribute as well overwhelmed.45 as receive assistance from others; and (7) effectively ne- gotiate and use family resources of time, money, and Consider, for example, an older woman living alone energy when the family is under stress. in the family homestead who falls and sustains a hip fracture. One family may cognitively reframe the event, It is important for health professionals to recognize saying, “We were worried about Mom’s ability to be safe that, because resilience is not an innate characteristic, it alone in the house. She was so determined to be on her can be facilitated and developed by individuals as well as own. One good thing that might come out of this situa- by their family system.50 To effectively facilitate such tion is that now she’ll consider moving in with us, or resilience in families facing stressful health-related situa- moving to assisted living once she finishes rehabilita- tions when an aging family member is ill, health profes- tion.” Another family may understand the situation sionals can51-53 (1) express empathy and concern for the quite differently: “This is the beginning of the end. No individuals and the family in the stressful situation they one ever gets completely well after a hip fracture. She is are experiencing; (2) identify and celebrate strengths and going to pass away soon, probably from pneumonia. successes of the coping strategies that the family is using; She’ll never get home now; we’d better start looking at (3) suggest ways to reframe or redefine the meaning of nursing homes, and make sure her affairs are in order.” or beliefs about the situation, to empower the individual Whereas the first family reframes things in a positive and family, and provide a sense of potential mastery; light, and the other with a more negative connotation, (4) help the family develop more effective communica- both have interpreted the situation in a way that allows tion skills; and (5) provide instrumental assistance and them to move forward in managing the situation. The education so that the family can better address the prob- difference in emotional interpretation is likely to affect lems associated with the stressor they are facing. family resources and functioning. The anticipation of loss and grief implied in the second family’s interpreta- Although these strategies are drawn from the family tion is likely to use some of the family’s emotional re- systems and family therapy literature, they are remark- sources, making these resources less available for imme- ably similar to the values and skills of the collaborative diate actions. reasoning process that enhance patient outcomes in ex- pert practice in physical therapy54-56 and in geriatric and Behavioral coping strategies are the actions that the community health nursing.57-59 Box 11-2 provides a se- family takes in response to the immediate stressor.46 The lected list of key questions health professionals should specific strategies put into place vary from family to fam- consider asking to develop a sense of a family’s patterns ily but are consistent with the family’s identity, rules and and dynamics of interaction, their perceptions of illness themes, and boundaries.47 Some families may mobilize, and health care, and the ways their unique family system coming together to be in the same place to provide sup- responds to stress and accomplishes change. port to their aging family member. Others, less organized in structure, may wait for one of their group to step to The Family in Later Life the front to take charge. Some, comfortable with seeking information and assistance, reach out to professionals There are a number of “normative” or developmental to learn and prepare for the outcomes of the stressor events that families face as leading generations of the event. Others, more enmeshed in structure, may be family age: redefining the older parent–adult child rela- reluctant to consider recommendations made by the tionship, grandparenthood, retirement, and adjusting to health professionals providing care to their aging family physiological and functional changes associated with the member. Families and individuals call on a variety of aging of the oldest generation. Each of these requires the coping strategies, depending on the type of stressor and family to reexamine and adapt its organization and pat- the intensity of the stressor that they are facing. Health terns of interaction. Such adaptation is a dynamic pro- professionals must be aware that coping strategies cess that potentially causes conflict and strain, upsetting with negative connotations, such as denial, are not always associated with negative outcomes; temporary

CHAPTER 11  Older Adults and Their Families 215 BOX 11-2 Examples of Key Information-Seeking Questions Health Professionals May Ask to Recognize and Respond to the Patterns and Dynamics within a Family System Experiencing a Health-Related Crisis Membership and Roles within the Family System • Who are the members of the family and what are their typical roles within the family? • Who will be involved in the patient’s care and decision making? • What are the resources, strengths, weaknesses, or concerns of each family member? • What roles and responsibilities do key family members have, that are competing with caregiving? • How will the patient’s health issue affect roles and responsibilities within the family? • Is there someone who can assist with these roles and responsibilities, and the daily tasks of the family? The Family’s Knowledge, Beliefs, Expectations, and Interpretation of the Health Event • What are the family’s views of illness, disability, and of death? • What do family members understand about the disease process, future expectations and needs, and probable outcome of care? • How do family members make sense of or define the meaning of this health crisis? Rules and Regulations of the Family System • What are the family’s overall priorities? • How are decisions made within the family? How is change negotiated? • How willing is the family to seek and accept support and assistance from informal and formal sources? What does the family perceive as consequences of receiving such support? Communication within the Family • How do family members share their concerns, fears, issues, problems, hopes, and dreams? • How effectively do family members listen and reflect on what they hear? • How clear and direct are information exchanges within the family? • How do family members express concern, caring, affection, and love (physically, verbally, by providing services, etc.)? How do they express worry, frustration, or fear? • What additional skills might assist family members to communicate effectively during this health care encounter? How might these additional skills best be facilitated? • What words and expressions are acceptable to the family system? What words or expressions are “red flags” that disrupt the process of communication? Understanding of the Health Care System • What does the family perceive as the role of each member of the health care team? • What interaction approach do family members expect of health professionals (e.g., paternalistic decision makers and directors of care, experts who provide guidance to the family but do not make decisions, external authorities who are a threat to the family system, honorary members of the family during the period of care and beyond)? Level of Stress, Coping Strategies, Coping Efficacy, and Resilience • How do family members rate their level of stress as a result of this family health event? • What coping strategies are being used by family members during this stressful time? • Are their coping strategies effective in helping the family manage its level of stress? • Would the family benefit from referral to pastoral counseling, a family therapist or psychologist, social service professionals, a community support group, or other formal resource? the operation of the family system until a new level of experienced by either member of the relationship.60 equilibrium can be reached. Family studies and individual development theorists and researchers have examined this relationship in terms of OLDER PARENT–ADULT CHILD reciprocity and exchange; degree of attachment, con- RELATIONSHIPS nectedness, or intimacy; filial responsibility, obligation, or altruism; family solidarity; and social norms.61-63 In Older parent–adult child relationships continue to evolve fact, many older parents and adult children experience over time and, hopefully, reach the level of a peer adult- ambivalence and mixed emotions, recognizing both pos- to-adult relationship. There is no ideal or norm for a itive and negative aspects of their evolving relation- parent–child relationship in later life. The nature and ships.64 Should physical or emotional frailty or illness of quality of older parent–adult child relationship dyads is an older parent occur, this parent–offspring relationship influenced by factors including family history and cul- often transitions into caregiving, where the older parent ture, prior degree of emotional closeness, power distri- becomes the recipient of care and the adult child plays a bution within the relationship and how it has evolved more central role in decision making about parent and over time, and any role strain (competing demands) family needs and activities.65,66

216 CHAPTER 11  Older Adults and Their Families impact on both mental and physical health of the grand- parent.79 Each adult child in the family negotiates and navigates the evolution of his or her relationship with aging par- Almost 12% of grandparents in the United States are ents; these changing relationships also affect the nature responsible for raising their grandchildren as a result of and quality of relationships between siblings.67 When substance abuse, incarceration, illness, disability, or there are multiple adult children, there may be signifi- death of their adult child.80,81 When grandparents take cant tension about what options should be considered on this nonnormative expanded role, there are both and how decisions will be made regarding an aging par- positive and negative consequences for all members of ent’s future, often reminiscent of patterns of interaction the family, on social, economic, and legal levels.82 Many from earlier points in the family life cycle.68 The degree of these households are considered to be fragile by social to which the family is open to discussing aging and the service and educational professionals because of low eventuality of death is an important influence on whether income, limited access to health care and other services, aging parents and their adult children are able to plan and physical or emotional problems of the grandchil- for the future, in terms of providing instrumental assis- dren.83 The off-time needed to assume the parenting tance, organizing finances, making decisions about living role requires grandparents to redefine their expectations situations and long-term care, and health care needs and for their later years, often perceived as interruption advance directives.69,70 of their own developmental path.84 Age-related changes affect physical function, making the day-to-day activities Grandparenthood associated with managing the household and caring for young children more challenging, although many Although becoming a grandparent typically occurs in grandparent caregivers take pride in their role.85 The late midlife, the transition to grandparenthood is often a prevalence of depression, anxiety, and borderline health marker of shift in roles and power within the family status is higher among grandparents raising grandchil- system, in that the older generation of the family system dren than among older adults who do not have to relinquishes direct responsibility for rearing and launch- assume this role.86,87 If a grandparent caregiver requires ing of children to the next younger generation.71 The hospitalization or rehabilitation care, there may be few contributions to and roles of grandparents (and great- within-family resources to assist with child care and grandparents) within the family system vary significantly daily tasks; many of these families rely on church across ethnic groups and are influenced by geographic groups, nonprofit agencies, and formal social services to location of generations of the family, as well as by the keep the family functioning when health-related stress- age, health status, and economic resources of the older ors occur.88,89 generation.72,73 Such contributions may include becom- ing the “kin-keeper” responsible for drawing the family RETIREMENT together and preserving its history, being an extra pair of hands in the care of grandchildren, being a provider of The transition from an active working role into retire- advice and dispenser of wisdom when the family experi- ment typically occurs between 55 and 70 years of age. ences stress, or sharing financial resources to assist Because of this, with the lengthening of the life span, younger generations with the cost of housing and educa- many aging adults can anticipate 10 to 25 years after- tion.74 Relationships with grandchildren are often very work living. The level of transitional stress a newly important components of the lives of older adults, pro- retired person and his or her family experiences during viding continuity of responsibility within the family, adaptation from work to retirement varies considerably supporting their life’s meaning, and their self-concept.75 and is influenced by many factors, including the meaning of work for the retiring person,90 voluntary versus Divorce and remarriage of adult children can have involuntary nature of the retirement,91 disruption of a profound impact on older adults who value their role socially supportive peer relationships and work friend- as grandparents. Maternal grandparents are often called ships, availability of meaningful substitute interests upon to assist with child care for newly single mothers. and activities,92,93 and the perceived and actual physical This is especially the case if one of the grandchildren and mental health and functional status of self and has chronic illness, mental health or cognitive problems, spouse.94,95 or physical disability.76 In addition to providing emo- tional support, grandparents may provide financial as- Retirement affects marital relationships, resources sistance or a place for their daughter and grandchildren (time, energy, money), decision making, activity partici- to live.77 In blended families, after remarriage of an adult pation, and interaction with friends and family, espe- child, step-grandparents must redefine and negotiate cially if spouses have differing expectations of what life their roles and relationships with both grandchildren after retirement will be like.96 For many couples in solid and newly added step-grandchildren.78 In families with long-term marriages, retirement increases their ability acrimonious outcomes following divorce, contact with to spend time together, strengthens their sense of grandchildren may be limited such that grandparents companionship and closeness, and enhances marital lose a role they valued significantly; this has significant

CHAPTER 11  Older Adults and Their Families 217 satisfaction.97 Similarly, couples unhappily married may of younger generations of family.109 In contrast, in popu- experience more conflict and dissatisfaction in spending lar American culture, where autonomy and self-direction time together, and so may opt to lead emotionally sepa- are prominent themes, needing assistance may be inter- rate, if parallel, lives after work roles end. Ongoing preted as ineptitude and uselessness.110 stressors over the retirement years include concern about income adequacy, sufficiency of financial resources for As a result of the aging process, older adults years yet to be lived,98 and availability and adequacy of (and their younger family members) must adapt the health insurance for future needs.99 This is especially meanings of the physical self, in terms of appearances, true for persons living on fixed incomes facing unex- functional abilities, health status, and the older person’s pected expenses when health insurance resources do not eventual death.111 In place of valuing their physical capa- completely cover costs of health care for acute illness, bilities and appearance, many aging adults report com- injury, or chronic health conditions. ponents of successful aging as being able to live to an advanced age, having stable health, keeping a positive HEALTH AND PHYSICAL FUNCTION mental outlook and sufficient cognitive capabilities, and IN LATER LIFE being able to be socially involved with family and friends who are important to them.112 The viewpoint that aging The aging process clearly affects physical ability. Grad- is a process of adaptation in the face of physiological ual age-related changes in sensory, neuromuscular, changes, rather than a state of being, contributes to a musculoskeletal, information-processing, and learning/ sense of well-being and self-worth, which in turn allows memory systems cumulatively alter an older adult’s abil- the older adult to continue to be a vital part of the fam- ity to accomplish physically demanding aspects of home ily system.113 maintenance and other instrumental activities of daily living.100 Functional abilities among older adults vary When an older adult requests assistance, however, greatly, as influenced by absolute age, physical activity family members and health professionals must be careful and fitness over the lifetime, body weight and nutritional not to assume the need for help crosses multiple domains status, lifestyle (smoking, alcohol use), onset of chronic of function. An older family member who asks an adult diseases, cognitive status, self-perception of ability, and child to accompany him or her to a physician’s appoint- fear of injury and falling.101-104 The longer an older adult ment may simply be requesting help in listening and lives, the more likely he or she will accumulate chronic gathering information. The adult child may incorrectly health conditions and age-related decrements in physio- interpret the request as an aging parent’s abdication of logical systems that require adaptation or adjustment of decision making and determination to manage his or her activities, and increased risk of injury and falls.105,106 own care.114An astute health care provider will recognize Although health professionals and younger family mem- situations in which a well-intentioned family member is bers observing function might recommend assistance, overfunctioning for an aging adult.114 the older adult family member may not perceive such a need and frame such suggestions as a threat to his or her FAMILY CAREGIVING competency, independence, and self-determination.107 The tension between the aging adult’s determination to In the geriatric health literature, caregiving is often de- continue to function independently and the family’s de- scribed as a one-way flow of resources from a family sire to ensure safety can lead to significant conflict within member to an impaired or disabled aging adult. This the family system. theoretical orientation speaks to the difficulties and chal- lenges that spouses, adult children, or formal caregivers When a generally healthy 80-year-old man who climbs encounter in providing such care. Studies framed by this a ladder to paint a wall or clear gutters falls and sustains perspective often focus on caregivers’ depression or men- injury, family members and health professionals may im- tal health, role strain, burden, conflict within the family, mediately question his judgment and physical abilities. poorer health, and diminished quality of life.115,116 Stud- The patient may be angered by their concern, perceiving ies of caregiving in the gerontology and family studies it as a threat to his independence and competence in literature, however, are more likely to define caregiving activities he has done successfully all of his previous as an exchange of resources between the older adult who years. Acceptance of assistance requires the older family needs assistance and the caregiver who receives benefit member to acknowledge changes in capacity, find alter- or value.117,118 In addition, being a caregiver affects roles native means of being self-directed or in control of his or and responsibilities beyond the relationship with the her life, and adjust or adapt his or her self-concept and older adult needing care. The caregiver must balance sense of worth to his or her actual abilities.108 In cultures time and energy across potentially competing family and or traditions that value wisdom and experience of aged work roles and responsibilities that in turn influence the family members more than physical ability, acceptance efficacy of performance in these other dimensions of of the need for assistance may be perceived as a privilege life.119 These would be part of the exosystem of an aging due to them, such that provision of assistance is the duty patient’s caregiver, per Bronfenbrenner’s ecological model of development.

218 CHAPTER 11  Older Adults and Their Families control; threats to his or her sense of competence and capability; and a decreasing set of personal, emotional, Reciprocity and Exchange or financial resources. For a family member, competence and efficacy as a caregiver often require development of Social exchange theory, which has its roots in cost– a new set of skills in providing assistance for both basic benefit analysis, provides an informative perspective for and instrumental activities of daily living, in navigating health professionals interacting with aging patients and the health care and insurance systems, and in coordinat- their caregiving family members.120,121 In a balanced ing an evolving system of informal and formal support- caregiving exchange, the value of the tangible/intangible ers who will contribute to care.124 Family caregivers are resources and services being provided or received are challenged to manage competing responsibilities and perceived by both family caregiver and aging parent as stressors; meet the aging family member’s needs across relatively equal and reciprocal, such that expectations many dimensions of care; find, engage, and use resources and needs of both are being met, and both are satisfied within both informal and formal support networks; and with the interaction. For many informal family caregiv- recognize and respond to their own and their aging fam- ers, the act of caring is perceived as loving nurturance ily member’s emotional and physical responses to care.125 that protects their aging family member’s sense of self- Both caregiver and care recipient must recognize that worth and enhances their quality of life.118 The expres- needs will change over time and be ready to adapt their sions of gratitude and appreciation they receive in return strategies for care as necessary.126 does much to counteract the stressors of providing care.122 The need for care changes the nature of established relationships within the family. In addition to defining In a less-ideal caregiving exchange, the aging parent roles and responsibilities, family relationships must be may have more need or less resource to bring to the ex- redefined in response to shifting needs. Gender-based change, resulting in a growing sense of indebtedness and and generational roles and patterns of responsibility of- perception that the family caregiver has more power to ten must be modified, in turn altering perception of self influence the exchange process, and the exchange is less and of spouse, parent, or caregiving adult child. Shifts in reciprocal. This exchange status is often stressful for the power, nature, and meanings of relationships are also both caregiver and aging parent. Physical therapists can greatly influenced by the way that the family has been often assist in reducing dependency and burden of care organized and has operated over the family’s life span. by facilitating function, providing assistive devices, and The need for care and the provision of care reduces time adapting the home environment to allow a more recipro- and energy that both the older family member and care- cal caregiving exchange. giver have available to invest in relationships with extended family and with friends. Both are at risk of Developmental Transitions in Caregiving becoming socially isolated at a time where support, as- sistance, and understanding from their families and Caregiving relationships within families do not auto- friends would be beneficial.127 matically occur as soon as a need for care arises. Rather, the family proceeds through a series of transitions as the An effective and healthy caregiving relationship caregiving/receiving relationship evolves.122 Initially, emerges as both care provider and care recipient accept there must be recognition that care is necessary on the and embrace the changes that the need for care has trig- part of the aging adult as well as the potential care pro- gered for self and for family. It is important to recognize vider. In times of crisis, as when hip fracture or stroke that, in light of the progression of disease processes and drastically changes function and ability of the aging age-related physiological change, the nature and amount family member, the need for care is obvious. More often, of care necessary will continue to challenge the family however, early clues for the need for care are subtle, de- system. As the level of challenge grows, strategies for velop slowly over time, and may be masked by the aging care that had previously been effective may falter. The adult who is intent on maintaining independence. The caregiving family may once again need to redefine roles ability to admit the need for care and to discuss options and adjust relationships in an effort to reestablish equi- is significantly influenced by the family’s culture, expec- librium in meeting growing and changing needs. tations, and belief systems; the rules governing commu- nication and role distributions; the degree of flexibility Dimensions of Care and cohesion in the family system; and the coping strat- egies the system and individuals typically employ. Family caregivers can be involved in a range of activities reflecting many dimensions of care for their older family Once the need for care is recognized and accepted, member. Assistance with finances may range from bal- caregiving and care-receiving roles must be defined, type ancing the checkbook and making sure bills are paid on of assistance available from both formal and informal time to making decisions and managing financial assets caregiver networks must be determined, and capabilities and investments. Assistance with care of home and prop- of caretakers must be established.123 An aging family erty may range from the responsibility for the “heavy member in need of care must confront issues including possible loss of self-determination, independence, or

CHAPTER 11  Older Adults and Their Families 219 work” of seasonal duties (raking leaves, cutting lawn, functional frailty or onset of disease requires the couple clearing snow, etc.) to assisting with or performing to adapt their long-held marital roles to the new de- routine household tasks (doing laundry, changing beds, mands of caregiving.133 cleaning bathroom, food shopping, etc.). Caregivers may also be called upon to provide transportation to stores, The assumption of the caregiving role is influenced by social events, and appointments; to manage the schedul- a strong sense of duty, dedication, and commitment, ing of activities and appointments; to organize, manage, rooted in deep emotional connection and long history of or administer treatments and medications; and to attachment and intimacy.134 Spousal caregivers, espe- provide meals in order to ensure adequate nutrition. cially husbands, employ a problem-solving strategy in The need for significant assistance with personal care, adapting to increasingly more complex needs for care as especially with bathing and toileting, can be distressing the spouse’s disease progresses.135 In addition to provid- for both caregiver and their family member, because of ing personal care to their husband or wife, spousal care- the breach of privacy associated with assistance during givers strive to provide opportunity for socialization and these very intimate activities.128 Caregivers, in addition interaction with others, manage daily tasks and the emo- to providing physical assistance, are often primary tional climate within the home, maintain as safe and sources of emotional support for their older family nurturing an environment as possible, and protect and member.129 preserve the self-esteem and dignity of their spouse.133 One of the rewards that balances the stressors of caregiv- The nature of the disease or condition that has cre- ing is a sense of pride in their ability to fulfill a demand- ated the need for care influences the stress experienced ing and critical role in caring for their spouse. by caregiver as well as older-person care recipient. Care- giving is least stressful on the individuals involved in a Over time, as the caregiver is faced with his or her caregiving dyad and on their relationship when the need own health issues and aging process, he or she must for care is thought to be temporary and return to prior reach out for additional assistance, especially if one or level of function is anticipated. When caregiving is per- more adult children (most typically daughters) are within ceived as an ongoing need, caregivers are faced with reasonable geographic distance, and so available to as- dealing with suffering of a family member, the need to be sist in the provision of care.136 There is often tension ready to respond if something unexpected occurs, being between generations within a family; spousal caregivers proactive to minimize or prevent potential problems, may be frustrated at an apparent lack of interest, under- and carrying out routines and regimens required to man- standing, or assistance from their adult children. Adult age the disease process.130 Although the caregiving stress children, as part of a different generation, may struggle associated with a chronic illness such as diabetes, heart reconciling the generational differences in structural and disease, or stroke can be significant, the psychological functional family expectations. Women caring for hus- stress experienced by caregivers exponentially increases bands with physical or cognitive decline are more likely when the need for caregiving is a result of a terminal ill- to reach out to family for emotional support, whereas ness or of dementia.129 In both latter situations, the fam- men caring for wives with illness or disability are often ily caregiver is confronted with the impending loss of more stoic, keeping frustrations and doubts to them- their spouse or parent, and anticipatory grieving is a selves, reluctant to seek assistance for the emotional common experience. This is especially true when the stressors associated with caregiving.137 underlying problem is dementia, where the caregiver Caregiving for a Spouse with Dementia.  ​The physi- must cope with difficult and unpredictable behaviors cal and emotional costs of providing care can be high for and emotional responses in their loved one who is, at the the caregiver, especially if the spouse needing care has same time, losing the cognitive and emotional connec- progressive cognitive impairment. The work of provid- tion with the family member they are caring for.131 ing care for a spouse with dementia can contribute to loneliness and a sense of isolation, depression, and sleep Caregiving for One’s Spouse deprivation.137 Factors identified as contributing to care- giving stress include emotional lability and problem be- Types and dimensions of caregiving and care-sharing haviors of the care receiver. Stress is moderated by the vary based on the needs and abilities of the aging adult, ability of the impaired spouse to express appreciation for and the gender and competing roles of the family care- care, to discuss their feelings and concerns, and to assist giver. A spouse, when present, is the preferred caregiver the caregiver in daily activities.138,139 Caregiving spouses for most aging adults, and nearly two-thirds of spousal for persons with dementia experience significant anxiety caregivers are wives.132 The relationship of many long- about the progression of the disease over time, are dis- married couples becomes symbiotic over time. Together, tressed by feelings of anger and resentment toward their the couple is able to accomplish much more and can impaired spouse, have doubts about their ability to con- more effectively respond to the challenges of aging tinue to provide the necessary care, and are concerned and poor health beyond the sum of their individual re- about the cumulative impact of caregiving on their own sources and capacities. The development of physical or physical and mental health.140 These concerns are realis- tic. The incidence of hypertension and risk of developing

220 CHAPTER 11  Older Adults and Their Families Formal Caregiving Systems cardiovascular and cerebrovascular disease is three times Any care-related service that requires payment is consid- higher in those caring for a spouse with dementia than ered to be part of the formal caregiving system. Efforts in age- and gender-matched noncaregivers.141 Likewise, to control medical costs resulting from managed care the incidence of anxiety disorder and of depression is has, in effect, shifted expectations away from the ongo- higher among caregiving spouses, especially wives, than ing use of formal caregiving services toward increased among noncaregiving spouses.142,143 dependence on informal family caregiving.155,156 As ag- ing adults are discharged from episodes of acute care or Caring for an Aging Parent subacute care prior to full recovery from illness or sur- gery, health professionals place more emphasis on teach- When a spouse is not able to provide necessary care, ing family caregivers how to manage medical regimens or if both aging parents require assistance, arrangements begun in the hospital than on carrying out restorative for provision of care often becomes the responsibility of services. However, families may be threatened or over- one or more of the couple’s adult children.144 In the whelmed by these responsibilities.157 One of the chal- United States, sons (if available) tend to assume respon- lenges for formal caregivers is to partner with family sibility for maintenance of their parents’ living environ- caregivers in decisions about what home-based skilled ment and management of finances, whereas daughters care is necessary, and how to provide that care safely and (if available) tend to manage instrumental and basic efficiently.158 activities of daily living and provision of emotional support.145 The training and roles of “formal” caregivers vary greatly from home health aides and personal care atten- For many adult children, the need to provide assis- dants with high school education and several hours of tance to aging parents occurs during or just after the instruction from the agency that employs them to health “launching” of their young adult offspring, at a time professionals with advanced degrees, credentials, and when the effects of their own aging process are becoming skills. Not all formal caregivers have formal education more evident.146,147 Their own emotional, physical, that prepares them to effectively interact with families and financial resources may be further “strained” by and informal caretakers in managing an aging patient’s competing demands associated with their jobs or profes- chronic illness.159-162 Financial resources and insurance sions.148 Caring for aging parents, whether supporting coverage influence the type of formal care services avail- modified independence in the aging parents’ home, an able to the patient and the frequency and duration of assisted living community, or by joining the adult child’s access to available formal care.163,164 The rules and regu- household, influences quality of life and marital satisfac- lations about eligibility, fragmentation of services, and tion of the caregiver as well as his or her relationship documentation requirements within the existing health with siblings.148-150 It is not unusual for conflicts to arise care system can further complicate a caregiving family’s between an aging parent’s caregiver and his or her access to formal care and interaction with health profes- spouse or for underlying issues about family roles and sionals.165 The network of formal care providers is dynamics to resurface among siblings. Caring for an loosely organized and challenging to understand for aging parent significantly increases the complexity of caregiving families new to the system.166 daily life for caregiving adult children, affecting each component of the family systems that the care provider Most health care professionals, as members of the is a part of.151 network of formal care providers, are motivated by a desire to help others and to lessen the burden for family The list of negative consequences for caregivers of caregivers.167 Each discipline brings unique knowledge aging parents is similar, in many respects, to those expe- and special skills to interactions with older adults and rienced by caregiving spouses: disruption of one’s accus- family caregivers. Unfortunately, despite the genuine tomed lifestyle; less time to interact with friends for desire to help, providing care that is integrated and co- social support; risk of developing anxiety and depres- ordinated across all disciplines is often the exception sion; sadness about the losses experienced by one’s par- rather than the rule. In interacting with health profes- ent; having to cope with disappointment and anger as a sionals providing formal care, family members have parent’s need for care increases; dealing with emotional, multiple roles: care coordinator/manager; advocate and cognitive, and behavioral problems that the parent en- watchdog to ensure necessary, safe, and effective care; counters; and risk of decline in health status. Daughters provider of personal care and emotional support; com- providing care experience such negative aspects of care- panion; and surrogate decision maker.165,168 When inter- giving to a greater degree than sons.151 These effects are acting with family caregivers, it is important for health lessened, to a degree, by factors including a strong sense professionals to consider potential differences in per- of attachment and emotional closeness between aging spectives that hinder communication and collabora- parent and adult child,152 deriving personal meaning or tion.165 All too often, family caregivers are labeled “dys- purpose from the caregiving role,153 and providing care functional” by health care professionals if they disagree from a sense of wanting to help rather than being obli- gated to do so.154

CHAPTER 11  Older Adults and Their Families 221 among themselves regarding medical recommendations, expect, and being respected for their ability to use this are slow to make decisions about care when asked, are information to make informed decisions.177 inconsistent in adhering to prescribed regimens (includ- ing home exercise programs), or respond emotionally Physical therapists and other rehabilitation profes- rather than rationally during discussions.169 sionals working with aging adults have a responsibility to be alert for signs of distress, depression, overwhelm- As well intended as the providers in the formal care- ing burden, and declining health status in their family giving system may be, we operate outside the boundaries caregivers.178 As indicated, support can be provided in of the families of the aging adult patients that we care the form of referral to support groups, to colleagues in for. As much as families come to the formal health care social work or mental health disciplines, or to the care- system for assistance and guidance, they are faced with giver’s primary care physician.179,180 One simple but in- the challenge of allowing the health professional to formative strategy to assess caregiver health is to ask breech the boundaries of the family system. In allowing three questions: (1) How would you rate your health this, family caregivers surrender to a nonfamily member right now: Is it excellent, very good, good, fair, or a degree of control and decision making about the care poor?181,182 (2) Over the past 3 (or 6) months, has your of their loved one.170 Without some sense of a family’s health changed? Is it very much better, somewhat better, themes about illness, sense of responsibility, level of co- about the same, somewhat worse, or much worse than it hesiveness, and rules about membership, health profes- was ____ months ago?183 and (3) Rate your level of sionals cannot assume their interactions with the family stress on a scale from 1 to 10.184 Answers indicating fair will always have the desired outcomes.171 The relation- or poor health, a decline in health, a decline in mood, or ship between family caregivers and health professionals increased stress suggest a need for referral out to an ap- as formal caregivers is most likely to be successful if both propriate medical or mental health provider and an ap- frame the effort as a collaborative partnership.172 When propriate support group. Poor health and high levels of receiving services from members of the formal caregiving emotional stress in family caregivers are predictive of network, family caregivers value the support, relief, and institutionalization and of mortality of the aging adults respite that becomes available, as long as there is a sense they provide care for.185 of continuity in the health professionals providing care.173 Older recipients of formal care are most con- There is strong evidence that programs that focus on cerned that health care professionals are trusted allies stress management, effective problem solving, develop- committed to helping them regain as much independence ment of strategies and skills for more effective coping, in function as possible.162 peer mentoring and support, and positive self-care, among others, successfully empower family caregivers Supporting Caregivers and improve the quality and efficacy of the care they provide.157,186-188 Family caregivers may not understand Effective communication is the foundation for health that options such as adult day care or respite care pro- professionals to support family caregivers in their role. grams are available; both create space within the care- Health professionals strive to be clear in the delivery of giver’s day or week for “time away” from the stressors patient and family education, respectful and empathic of caregiving and opportunities to spend time with while listening to (and hearing) family caregiver and friends or to engage in activities that are meaningful and patient questions and concerns, and creative in adapta- restoring for the caregiver.189,190 Expressions of apprecia- tions of caregiving to best address their concerns.174 tion and affirmation of the importance and meaningful- Family caregiver–health professional relationships that ness of the caregiver role by health professionals inter- are grounded in mutual input and shared decision mak- acting with family caregivers not only build relationship ing are perceived as supportive and empowering, as well but also positively affect caregiver self-efficacy. as effective in reducing stress of spouses and adult children.175 What about the Health Insurance Portability and Accountability Act Instead of assuming we know what is in an older and Confidentiality? patient’s best interest, health professionals must discern the salience of the act of caregiving to the older patient The Health Insurance Portability and Accountability Act and family caregiver, and what this means to their rela- (HIPAA) is a law passed in 1996 intending to protect tionship. Subsequent discussions about who will provide patient privacy and ensure confidentiality with respect to which aspects of care, aimed at reducing stressors and sensitive medical information. Originally, the law was minimizing risk of physical and psychological burnout designed to govern electronic transfer of information and overburdening of the family caregiver will be much from the medical record between providers and payers more effective.176 When faced with progressive decline (insurance). The law intends to limit access to sensitive and terminal illness, family caregivers appreciate kind- patient information to those who “need to know” in ness and compassion, receiving key information and order to provide necessary care. According to HIPAA suggestions from health professionals about what to language, family caregivers are included in the “need to

222 CHAPTER 11  Older Adults and Their Families discussion of these issues with an older patient and their family caregivers is both practical and essential for effec- know” group.191 It is appropriate to ask an older adult tive physical therapy intervention. Interdisciplinary team for informal verbal consent about discussing care and meetings that include the patient and family caregivers sharing information with caregivers; written consent is provide opportunity for both family and health care not required.192 HIPAA regulations do allow health pro- providers to better understand the “big picture” and fessionals to use professional judgment in situations make informed decisions about what needs to be done in when an older adult is unable to provide consent because the situation that the patient and family find themselves of acute or organic cognitive impairment, when the older facing.193-195 patient would otherwise be at risk or in danger (includ- ing suspicion of abuse, neglect, or domestic violence), TO DRIVE OR NOT TO DRIVE and when such disclosure is determined to be in the best interest of the patient.192 HIPAA guidelines suggest that One of the most common challenges facing aging adults health professionals follow a policy of “minimum neces- and their family caregivers concerns the question of driv- sary information” when sensitive health information is ing. Is it safe to continue to drive? Or is it time to park shared. the car and take away the keys? We will use this question to apply what we have learned about the family system What does this imply for rehabilitation professionals in later life in a real-world situation. interacting with older adults and their families? To con- sider this question, it is informative to look carefully at Why Is Driving a Problem in Later Life? how we gather key information during the examination/ evaluation process, as well as at how (and what) we share The task of safely operating a vehicle in traffic is complex during intervention with our older patients and their and demanding. In addition to being able to steer, brake, families. As part of the examination process, we interview and accelerate, the driver must constantly scan the envi- the patient and other relevant informants (family mem- ronment in which the car is moving for indications that bers, other health professionals), and review the patient’s surrounding cars are moving at similar speeds, slowing, medical record (if available) to gather relevant informa- changing lanes, or turning. Drivers must be able to read tion about current health status and chief complaint, co- and interpret signs, traffic lights, and other directional morbidities and past medical history, results of medical information as they speed by them. They must be mindful tests and measures, medication and substance use/abuse, of pedestrians, obstacles, and vehicles entering the road health habits, living environment, preferred activities, and from driveways or cross-streets. They must be able to functional status.1 If we are concerned that cognitive adapt their driving to weather, lighting, and road condi- problems prevent the older adult from providing an ac- tions. They must integrate and synthesize such informa- curate history, we routinely ask for additional informa- tion about the environment, speed/distance/direction of tion or clarification from a family member/caregiver as a their car and others around them to maintain safe dis- surrogate historian. During the differential diagnosis pro- tances between vehicles, to brake or accelerate as appro- cess, we select appropriate examination strategies, ex- priate, and to alter direction to avoid obstacles. Driving plaining the purpose of the test and how results will in- is the ultimate cognitive–motor multitasking activity! form our decision making. We clarify what the patient and/or family hopes will be the outcome of the care we Box 11-3 lists common age-related changes in sensory provide, using this information to determine appropriate motor systems and frequently occurring medical condi- goals for our care. We generate a movement-dysfunction– tions that can negatively affect driving ability in older based diagnosis, define an anticipated functional outcome adults. Chronological age alone is not a useful indicator as a prognosis, and determine the frequency, intensity, and of driving ability. Risk of accident increases with certain duration of intervention in defining a patient-specific plan medical diagnoses including dementia, depression, and of care. Optimally, active participation by the patient and other psychological disorders, diabetes, sleep apnea, al- family during this process has established an effective cohol use/abuse, and cataracts.196 A fall in the previous team relationship so that formal care providers, informal year as well as a diagnosis of orthostatic hypotension caregivers, and older patients are collaborative and sup- appear to increase risk of motor vehicle accidents for portive in working toward the desired outcome. Along the women older than age 65 years.197 Any medication that way, each participant in the rehabilitation process moni- affects efficacy of central nervous system function or tors progression and contributes to modifications in the level of consciousness may negatively influence attentive- plan of care as needs arise and progress is made. All of this ness, decision making, and ability to respond to chal- requires discussion, query, and interchange of information lenges encountered when driving. Aging drivers are less about health status, level of energy or fatigue, emotions likely to be involved in motor vehicle accidents related to and coping, and functional performance in key activities, consuming alcohol than younger drivers.198 such as activities of daily living, postural control, and abil- ity to walk. Accident rates of drivers age 75 years and older, though slightly higher than for adults age 30 to 74 years, Interaction with family caregivers about functional status is not an exchange of sensitive health information;

CHAPTER 11  Older Adults and Their Families 223 B O X 1 1 - 3 Factors Affecting Driving Performance of Aging Adults Age-related Changes Possible Consequences during Driving Sensorimotor systems Visual • Decreased retinal luminance (impaired night vision) • Less effective distance accommodation (difficulty seeing dashboard) Visual-spatial • Lower saccade and visual pursuit (difficulty tracking moving objects) perceptual • Less range of upward/downward gaze without movement of the head • Decreased sensitivity to light (diminished ability to see in dim/dark) Cognitive • Greater glare recovery time (loss of vision due to oncoming headlights) • Less dynamic visual acuity (trouble reading signs while moving) Motor systems • Impaired spatial contrast sensitivity (predictor of crash risk) • Diminished peripheral visual field (ability to discern nearby vehicles) Medical conditions • Smaller useful field of view in attentional tasks (predicts crash risk) Sleep apnea Repeated syncope • Less precise depth and distance perception (stereopsis) Previous stroke • Less efficient space perception (risk of crash at intersection, left turns) • Less sensitivity to objects in motion in the environment Diabetes mellitus • Less ability to judge depth/distance while moving Seizure disorders • Difficulty judging relative speed of objects in environment Dementia (early to midstage) • Accuracy judging absolute speed of their own vehicle Parkinson’s disease • Difficulty with tasks requiring divided attention Cataracts • Less efficient selective attention (greater distractibility) Macular degeneration • Slower and less efficient attention switching between key stimuli • Diminished capacity to retain/recall information in short-term memory • Less efficient information-processing speed (hesitant decision making) • Less efficient new long-term memory (e.g., changed traffic patterns) • Less efficient spatial/cognitive mapping (e.g., trouble using maps) • Increased choice reaction time (responding to complex situations) • Impairment of range of motion and flexibility, especially neck rotation (affects ability to scan behind when backing up, changing lanes) • Less accurate control of precise continuous movement • Decrements in muscle performance, especially power • Daytime drowsiness, risk of falling asleep while driving • Diminished vigilance and attention while driving • Impaired decision making and responsiveness to changing conditions • Risk of loss of consciousness while driving • Homonymous hemianopsia (loss of left or right visual field) • Impaired visual–spatial perception/abilities (judging speed, distance) • Agnosia (inability to recognize key stimuli) • Apraxia (impaired motor planning ability) • Emotional lability • Deficits in attention and distractibility • Visual deficits from retinopathy • Sensorimotor impairment/polyneuropathy (braking, acceleration) • Risk of impairment/loss of consciousness • Risk of impaired motor control • Getting lost while driving • Impaired judgment • Impulsiveness in lane changing and turning • Failure to use turn signals • Driving too slowly for the driving environment • Difficulty recognizing and responding to signs and signals • Rigidity (impaired ability to turn head to scan environment) • Bradykinesia (impaired timing: braking and acceleration) • Impaired postural control (stability/anticipatory balance while driving) • Drowsiness (adverse effect of medications) • Sensitivity to glare, especially oncoming headlights in night driving • Impaired visual acuity for reading traffic signs and signals • Impaired central (precise) vision

224 CHAPTER 11  Older Adults and Their Families BOX 11-5 Resources about Older Adult Driving Safety Aimed at Health Professionals are similar to accident rates of drivers age 25 to 29 years, and lower by one third than are accident rates of drivers Resource Name Contact Information age 15 to 24 years.199 The rate of fatalities, however, is and Description exponentially higher for older drivers involved in auto- National Highway Traffic Safety www.nhtsa.dot.gov: Traffic mobile accidents, attributed to greater susceptibility to Safety tab, Older Drivers link injury rather than high incidence of crashes.200 Broad Administration Driving publicity about injuries and deaths of pedestrians hit by fitness assessment and www.ncs.org/safety_road/ older adult drivers have raised public awareness about educational tools DriverSafety/Pages/ driving safety in later life, and calls for changes in driv- MatureDrivers.aspx ing laws, including more frequent assessment of driving National Council on Safety and visual ability of adults age 65 years and older.201 The (journal article links) legal requirements for reevaluation of driver fitness and for reporting potentially unsafe drivers vary from state to fulfill important instrumental activities of daily living, to state. There is tension between protecting the needs of such as grocery stores, pharmacies, or doctor’s appoint- older drivers and ensuring the safety of the public. Al- ments. When contemplating “giving up the keys,” an though there are no well-established criteria for cancel- older adult and his or her family are faced with many ing driving licenses for older drivers, there are many questions about the emotional and practical aspects of easily accessible resources for older adults and their driving cessation. It is important to note that older families, as well as for health care providers, who want adults who stop driving are more likely to experience more information about older adult driving safety and declines in health, depression, loss of social contact, and availability of older adult transportation options to driv- functional losses.203-205 ing. A variety of driving education programs are avail- able (online and in person) that help older adult drivers As the task of driving becomes more challenging, self-assess and refresh driving skills as well as find adap- many older adults recognize and appropriately respond tive driving strategies to enhance safety. Box 11-4 lists by changing driving behavior, especially if they have resources aimed at consumers and Box 11-5 lists concerns about the quality of their vision and visual resources aimed at health professionals. perception.206-208 The experience of repeated “near misses” of accidents because of driving errors is also a The Meaning of Driving powerful stimulus to reevaluate driving ability.209 Older adults may opt to avoid driving at night when glare from Driving is not just for getting places. The ability to drive oncoming headlights is most problematic, when inade- a car provides and supports an adult’s sense of indepen- quate street illumination makes it difficult to scan the dence, autonomy, self-determination, and personal com- environment, or when weather conditions make driving petence.202 In many communities, especially in rural ar- dangerous.210 They may avoid high-traffic highways, eas where public transportation is limited or unavailable, rush hour conditions, and unfamiliar areas. driving a car is necessary for individuals to be actively engaged in meaningful activities, to participate within The decision about driving safety is especially difficult their social networks, to access needed health care, and when a loved one has been diagnosed with dementia.211 In BO X 1 1 - 4 Resources about Older Adult Driving Safety Available for Aging Drivers and Family Caregivers Resource Name and Description Contact Information AARP Driver Safety Programs 888 687-2277 or www.aarp.org AARP “We need to talk” Guide www.thehartford.com/talkwitholderdrivers AARP “We need to talk” Seminars 202 434-3919 or http://www.aarp.org/home- AAA Senior Drivers garden/transportation/we_need_to_talk/ AAA self-test, Drivesharp calculator, 551 driving ability, Carfit, Safe http://discover.aaa.com/PGA/SeniorMobility www.seniordrivers.org/home/ driving for mature operators NHTSA Older Drivers http://www.nhtsa.gov/Senior-Drivers Caring.com Guide to Driving: assessing driver www.caring.com/older-drivers fitness, safe senior driving, taking the keys, life without a car www.caring.com/calculators/state-driving-laws State Driving Laws www.driver-ed.org or 866-672-9466 Association for Driving Rehabilitation Specialists

CHAPTER 11  Older Adults and Their Families 225 this situation, families strive to preserve as much self- necessary are summarized in Box 11-7. The way that determination as safely possible in the midst of progres- older adults and their families approach such discus- sive cognitive impairment.212 Because there is significant sion (and resulting efficacy of such discussion) is shaped variability in types and severity of impairment in condi- by the family system’s rules about communication, tions such as Alzheimer’s disease, performance on cogni- strategies for management of emotional climate and of tive and memory tests alone are not strongly predictive of daily tasks and responsibilities, boundaries and cohe- ability to drive safely and risk of a motor vehicle acci- sion (i.e., willingness to seek and accept help from dent.213 Neuropsychological testing of visual spatial skills health professionals outside the family system), and and attention and reaction time are more strongly related flexibility. Strategies that are most likely to be effective to driving performance than cognitive status.214,215 Per- in facilitating initial and subsequent discussion about sons with early- to midstage dementia who continue to driving ability include exploring the conditions under drive, however, tend to overestimate their abilities and which driving may still be possible (daytime, low- may become overwhelmed or confused when environ- complexity situations), being sensitive during discus- mental conditions (construction areas, traffic congestion) sions and anticipating an extended time period for final increase and exceed their ability to process information decision making, actively involving the older adult in and formulate appropriate responses.216,217 For this rea- the decision making, helping explore alternative trans- son, periodic on-road testing is recommended as an im- portation options, and involving others if driving is portant determinant of capacity to continue to drive.218 dangerous. Evaluation of Driving Ability Health status considered alone is not a powerful indi- and the Decision to Stop Driving cator of the ability to drive; medical evaluation is only one component of a fitness-to-drive assessment.220,221 Two of the most important determinants of driving When questions about the driving ability of an aging capacity are (1) the ability to see and to use vision adult patient or parent arise, physicians and other pro- effectively and (2) the ability to cognitively assess and viders can refer the older driver to a credentialed driver respond to challenges encountered when operating a rehabilitation specialist (DRS) for evaluation222,223 (see motor vehicle.219 Many of the impairments that compro- Box 11-4 for locating a DRS). Testing may include a mise the ability to drive develop and progress insidi- clinical evaluation of overall health and medication use, ously. Family caregivers and health professionals inter- examination of neuromusculoskeletal systems to identify acting with aging adults share the responsibility to impairments affecting the ability to drive, detailed screen for problems that may interfere with driving examination of field of vision and visual perception, safety. Box 11-6 summarizes some of the key messages and additional neuropsychological and cognitive test- to discuss with patients and their families regarding driv- ing.224,225 Driving simulation technology or on-road test- ing capacity in older adults. ing identifies the components of the driving task the patient can safely and effectively accomplish as well as Ideally, conversations with an older family member components likely to improve with remediation or adap- about the eventual need to “give up the keys” when tation, and any components so unsafe that they should driving becomes unsafe will begin long before the need no longer be allowed.226 to stop driving occurs. Well-established and meaningful behaviors can be challenging to change. One of the first For older drivers who are found to be moderately to steps is to help the individual recognize that there is an marginally safe, there are a number of remediation strat- issue or problem that needs to be addressed. Warning egies that can facilitate safer performance. Computer- signs that the time to cease driving is approaching and based activities that train cognitive processing speed (e.g., that more careful assessment of driving ability may be computer-based exercises stressing visual attention and speed of visual information processing) are particularly B O X 1 1 - 6 Important Messages about Driving to Share With Aging Adults and Family Caregivers • Age alone does not make someone a bad driver. • Decisions about driving should focus on the older driver’s functional driving ability. • Driving ability typically declines gradually; modifications and interventions to sustain safe driving may be available in the early stages. • Vision is the most important physical component of driving: 85% of driving ability is visual skill and 15% is motor skill. • Most aging adults will “outlive” their capacity to drive: Acknowledge this and make plans to manage it. • Driving is a privilege, not a right. Public safety must take priority over individual preference. • Alternatives to driving are often available; ascertain options early. • Resources are available to evaluate driving capacity and counsel about driving cessation (Boxes 11-4 and 11-5 provide resource contacts). (Adapted from Driving Transitions Education: Tools, scripts, and practice exercises, National Highway Traffic Safety Administration & American Society on Aging, www.asaging.org/drivewell.)

226 CHAPTER 11  Older Adults and Their Families BO X 1 1 - 7 Indicators That Driving May No Longer Be Safe for Aging Adults • Almost crashing, with frequent “close calls” • Becoming distracted or having difficulty concentrating while driving • Changing lanes without signaling • Difficulty moving foot between gas and brake pedal; confusing gas and brake pedals • Difficulty turning around to check for cars or obstacles when backing up or changing lanes • Experiencing road rage • Finding dents and scrapes on the car, on fences, mailboxes, garage doors, curbs, etc. • Frequently being “honked at” by other drivers • Getting lost, especially in surroundings that were previously familiar • Going through stop signs or red lights • Going too fast or too slow for safety • Having problems making turns at intersections, especially left turns • Having trouble seeing or following traffic signals, road signs, and pavement markings • Misjudging gaps in traffic at intersections and on highway entrance and exit ramps • Receiving traffic tickets or “warnings” from traffic or law enforcement officers • Responding more slowly to unexpected situations • Straying into other lanes (Adapted from http://www.aarp.org/family/housing/driver_safety_program/resources/ warning_signs.) effective.227 Opportunities to practice using driving simu- CONCLUSION lation training also improve driving performance, espe- cially in safety while turning (maneuvering the car into Early in the chapter, readers broadened their under- the correct lane and consistency in use of turn signals).228 standing of the family as a complex system that provides The efficacy of traditional driver education programs, the environment for development of its members as they although widely available at minimal cost, is not well move forward over time in their life span. Bronfen- supported by clinical studies.229 brenner’s model of ecological development provided a framework to understand the interaction of formal care When an older family member who is unsafe refuses providers (health professionals) with older adult patients to stop driving, there are a number of strategies that and members of their families during a time in which the caregivers may use. However, these strategies may be health care system is in the midst of substantive change. quite stressful to undertake. Although reporting regula- We discovered that the organization, rules for interac- tions vary from state to state, families, health profession- tion, permeability of boundaries, and strategies to ac- als, or law enforcement professionals can file a written complish necessary tasks vary greatly from family to report to the state motor vehicle department identifying family, and that assuming that families “work” much the unsafe driver and describing the reason for concern like our own can lead to miscommunication. We ex- and the problematic driving behavior.230,231 In many plored how acute and chronic illnesses of aging family states, this will prompt further evaluation, including a members are nonnormative stressors that require fami- medical evaluation and an on-road driving test with an lies to use various coping strategies, and hopefully, adapt official from the motor vehicle department to determine effectively to new situations. We discovered that taking fitness to drive; such evaluation often results in revoca- the time to understand the family’s operating system, the tion of the older unsafe driver’s license.232 Many of the rules governing family interactions, and the family’s be- websites listed in Box 11-4 have links to state motor liefs about aging and health will enhance communica- vehicle departments and their guidelines for reporting tion between health care providers, aging adults, and unsafe drivers. their family caregivers, ultimately improving quality of care and patient/family satisfaction with the outcomes of Some older adults, especially those with cognitive rehabilitation. impairment, may continue to drive even if their license has been revoked. As a last resort, family members may Next, we considered how the family responds to the have to remove the keys from the person’s possession, need to provide older-patient care for ill, frail, disabled, disable the car so that it cannot be driven (such as re- or cognitively impaired members of its oldest genera- moving the battery), move the car to another location, or tions. We discovered that the presence of a spouse or donate or sell the car so that the temptation and oppor- adult child does not always mean that the assistance tunity to drive is removed. Families who use these ex- needed will be available. We framed our view using a treme strategies must be prepared to respond to behav- model of reciprocal exchange, considering the resources ioral, emotional, and practical consequences that are and the physical and psychological costs of a caregiving likely to result.

CHAPTER 11  Older Adults and Their Families 227 relationship for formal and informal care providers as adults and their families, possibly making referrals to well as the aging adult recipients of care. We reviewed specialists in driving assessment and remediation, and, if the clinical research literature about caregiver stress and necessary, reporting unsafe driving behavior to the state’s coping, and developed strategies to provide support to department of motor vehicles. family caregivers so that they can be effective in their caregiving role. The concepts and models explored in this chapter can be applied to many other situations and circumstances Finally, we applied what we have learned about fami- encountered by physical therapists and other health pro- lies in later life to a complex problem that many face: the fessionals who work with older adults and their families. determination of whether an aging family member This overview of family structure and function as a dy- should continue to drive. We discovered that the act of namic system, and discussion of the challenges and re- driving provides much more than transportation; it also wards of informal caregiving, will be a foundation for affects an aging adult’s self-image, sense of independence interaction with aging adults and their families across and self-determination, and sense of personal compe- the health care settings in which physical therapists pro- tence. Age and disease-related impairments of the visual vide formal care, no matter what disease or injury has system, visual perception, information-processing and made such care necessary. problem-solving systems, and musculoskeletal systems interact to challenge or compromise an older adult’s REFERENCES driving capability. Although discussion about driving cessation is in itself a stressor to the family system, be- To enhance this text and add value for the reader, all ginning such a discussion before driving becomes unsafe references are included on the companion Evolve site allows the process of health behavior change to move that accompanies this text book. The reader can view the forward, and the family can explore options and make reference source and access it online whenever possible. plans rather than respond to a crisis situation. We also There are a total of 232 cited references and other gen- considered the roles and responsibilities of health profes- eral references for this chapter. sionals in screening for fitness to drive, counseling aging

IIIP A R T Evaluation, Diagnosis, and the Plan of Care 228

12C H A P T E R Impaired Aerobic Capacity/Endurance Tanya LaPier, PT, PhD, CCS Impaired aerobic capacity, also known as impaired en- changes, such as reduced maximal oxygen consumption durance, is a common patient impairment that can limit because of decreased cardiac performance and skeletal participation in functional, occupational, and recre- muscle endurance, directly impact aerobic capacity.1 ational activities. Even functional tasks that require only Also, conditions that affect functional mobility (stroke, a few minutes can be limited by aerobic capacity. Older Parkinson's disease, osteoarthritis, bone fractures, etc.) adults are particularly vulnerable to impaired aerobic are more common in older than in younger adults, thus capacity due to anatomic and physiological changes that predisposing older adults to restricted physical activity. occur with aging, greater propensity for sedentary be- Lastly, older adults are also more likely to have cardio- haviors, and greater risk for disease processes that limit vascular, pulmonary, and metabolic pathologies that in- the oxygen transport system.1 In addition, aerobic ca- terfere with oxygen delivery and subsequently aerobic pacity is directly influenced by the habitual activity pat- capacity. Physical therapists need to be able to identify tern of an individual, which may vary across individuals and address any of these factors that may be contribut- from total inactivity to frequent and intense activity. Any ing to impaired aerobic capacity in older adults. factors that limit habitual physical activity, such as ill- ness, injury, and or travel, will cause adaptations that Aerobic capacity limitations are associated with de- diminish aerobic capacity. Conversely, any factors that clining functional mobility, disability, and loss of inde- promote habitual physical activity, such as intentional pendence in older adults. Long-term physical activity is exercise, yard work, and occupation-related physical related to postponed disability and longer independent tasks, will result in adaptations that improve aerobic living in older adults, including those with chronic dis- capacity. In older adults, many physiological, pathologi- ease.3 Alexander et al4 found that measures of submaxi- cal, and psychosocial factors can contribute to restricted mal oxygen uptake and maximal oxygen consumption physical activity. Figure 12-1 depicts the persistent vi- were strongly predictive of functional mobility perfor- cious cycle that can be created when sedentary behav- mance in older adults with and without impairments. An iors, chronic disease, and functional dependency inter- exercise training program of walking improved aerobic act.2 This chapter will provide an overview of causes and capacity and physical function in older adults with low factors contributing to impaired aerobic capacity in socioeconomic status at risk for disability.5 The evidence older adults and describes physical therapist patient suggests that meeting recommended physical activity management (examination, evaluation, diagnosis, and guidelines can improve physical function in older adults interventions) to address decreased endurance and its and help maintain independence and quality of life and impact on function. reduce risk of frailty.6,7 In addition, several studies have found that aerobic exercise training has a beneficial im- FACTORS INFLUENCING AEROBIC pact on locomotor function in older adults,8 whereas CAPACITY IN THE OLDER ADULT multimodal exercise programs and group-based inter- ventions can also minimize impaired mobility in older In older adults, aerobic capacity impairments may be adults.9,10 related to a number of issues, including deconditioning, age-related physiological changes, and specific pathol- PUBLIC HEALTH BENEFITS OF EXERCISE ogy. Deconditioning, or decreased physical activity, is AND PHYSICAL ACTIVITY common in older adults and often associated with illness, functional limitations, restricted activity, and The benefits of exercise, and particularly aerobic train- cognitive limitations. Many age-related physiological ing, are numerous and extend beyond traditional physi- cal therapy management of a single patient. Promotion Copyright © 2012, 2000, 1993 by Mosby, Inc., an affiliate of Elsevier Inc. 229

230 CHAPTER 12  Impaired Aerobic Capacity/Endurance Functional BOX 12-1 Summary of Health Benefits limitations Associated with Regular Physical and disability Activity Inability to maintain healthy Adults and Older Adults lifestyle → Strong evidence activity restriction • Lower risk of early death • Lower risk of coronary heart disease Chronic disease Deconditioning and • Lower risk of stroke associated impaired physical • Lower risk of high blood pressure • Lower risk of adverse blood lipid profile with inactivity functioning • Lower risk of type 2 diabetes • Lower risk of metabolic syndrome FIGURE 12-1  Cycle created by impaired aerobic capacity. • Lower risk of colon cancer • Lower risk of breast cancer of aerobic exercise in almost all patient populations has • Prevention of weight gain far-reaching effects on health promotion and disease • Weight loss, particularly when combined with reduced calorie prevention. Landmark studies by Blair et al11,12 have demonstrated that the level of aerobic fitness is inversely intake related to risk of cardiovascular disease and all-cause • Improved cardiorespiratory and muscular fitness mortality. Regular aerobic activity reduces the risk of • Prevention of falls many adverse health outcomes including those summa- • Reduced depression rized in Box 12-1. Major research findings suggest that • Better cognitive function (for older adults) the health benefits of physical activity occur for all age, racial, and ethnic groups and that the benefits far out- Moderate to strong evidence weigh the possibility of adverse outcomes.13-15 • Better functional health (for older adults) • Reduced abdominal obesity Numerous studies have demonstrated the benefits of aerobic exercise in populations of older adults. Recent Moderate evidence studies have demonstrated the ability of older adults, • Lower risk of hip fracture both healthy and with pathology, to increase aerobic • Lower risk of lung cancer capacity with exercise training. Although masters ath- • Lower risk of endometrial cancer letes experience age-related decline in maximal aerobic • Weight maintenance after weight loss capacity, their aerobic performance is better than that of • Increased bone density sedentary older adults.1 Aerobic exercise training is safe • Improved sleep quality and beneficial even with significant chronic disease such as chronic obstructive pulmonary disease, chronic heart (From US Department of Health and Human Services: 2008 Physical activity failure, peripheral artery disease, and stroke, which are guidelines for Americans. ODPHP Publication #U0036 2008:1-76.) common in older adults.16-23 For example, in older patients with chronic obstructive pulmonary disease, speed, visual attention, and cognitive flexibility.24,25 Even 12 weeks of aerobic exercise training combined with a single exercise bout of sufficient intensity may improve resistance exercise training or recreational activities in- cognitive performance in older adults.26 It has also been creased peak aerobic capacity and 6-minute walk test proposed that exercise may modify some of the psycho- distance.16 In older patients with stable chronic heart logical and physiological abnormalities associated with failure, a program of aerobic high-intensity interval Alzheimer's disease.27 Because cognitive decline is preva- training was well tolerated and improved aerobic capac- lent in older adults, ways to prevent or attenuate this are ity, functional status, and quality of life.17 Interestingly, clinically relevant in this population. arm ergometry cycling and treadmill walking exercise training both increased maximal walking distance and PHYSIOLOGY OF AEROBIC CAPACITY pain-free walking distance in older patients with vascu- AND EXERCISE lar claudication.20 Exercise training with lower extrem- ity cycling improved aerobic capacity and functional Aerobic capacity reflects the body’s ability to take up, performance in patients with hemiparesis who were more than 5 months poststroke.21 deliver, and use oxygen. Many processes are required to Interestingly, aerobic exercise training has also been ensure that these three steps occur optimally, and dys- shown to improve cognitive function in adults, in addi- tion to motor function, auditory attention, cognitive function in any part of this oxygen transport system can sinutmerpfetiroenw(Vi·t oh 2a) patient’s aerobic capacity. Oxygen con- is a physiological measure of how much oxygen the body uses at rest or during activity. Oxygen consumption increases in proportion to intensity of ex- ercise/physical activity and will plateau when maximal ability for oxygen delivery is reached, which is called

CHAPTER 12  Impaired Aerobic Capacity/Endurance 231 maximal oxygen consumption (V· o2 max). Maximal ox- Heart rate (bpm) ygen consumption is directly related to aerobic capacity. Increases in maximal oxygen consumption with exercise Untrained training reflect improvement in aerobic capacity. The Fick equation describes the relationship between oxygen Trained consumption as being equivalent to the cardiac output (heart rate 3 stroke volume) 3 arteriovenous oxygen Oxygen consumption (L/min) difference, as illustrated in Figure 12-2.28-30 Dysfunction in one or more of these physiological processes can lead FIGURE 12-3  Heart rate (HR) response to an aerobic exercise bout to impaired aerobic capacity. This chapter will briefly discuss how these key physiological variables respond and adaptation following aerobic exercise training. bpm, beats per acutely during a single aerobic exercise bout, can be al- minute. tered by aging or pathology, and adapt chronically to a period of aerobic exercise training. With aerobic exercise training, heart rate is lower at rest and during submaximal exercise.31,38 Heart rate at Heart Rate rest decreases following aerobic training because of in- creased parasympathetic activity while sympathetic ac- During acute aerobic exercise, there is a linear relation- tivity declines. Exercise training results in a proportion- ship between heart rate and oxygen consumption, as ally lower heart rate at specified submaximal workloads. shown in Figure 12-3. Heart rate increases with increas- Therefore, after a period of exercise training, more work ing workload via two mechanisms. At less than 100 beats can be performed at a lower heart rate. Maximal heart per minute (bpm), heart rate increases via an inhibition rate tends to be very stable within individuals and is not of vagal (parasympathetic) tone. Conversely, as the rate altered by exercise training. Following a period of aero- approaches 100 bpm, heart rate increases primarily by bic training, the heart rate during recovery from exercise stimulation of sympathetic tone. Maximal heart rate is returns to resting levels more quickly.28,31 related primarily to age and is estimated by subtracting age from 220.28-31 Stroke Volume There is an age-related reduction in maximal heart Stroke volume is the difference between the total amount rate that is thought to be due to attenuation of sympa- of blood in the ventricles after completely filling (end- thetic drive or decreases in sensitivity and responsiveness diastolic volume) and the amount of blood left behind of catecholamines.1,32 Pathological processes that reduce after ventricular contraction (end-systolic volume). the rise in heart rate with activity can limit aerobic capac- Stroke volume is often described clinically in terms of ity. Impaired function of the autonomic nervous system ejection fraction, which is stroke volume expressed as a will decrease heart rate response to activity. Interestingly, percentage of end-diastolic volume. Stroke volume dur- autonomic nervous system activity (measured by heart ing acute aerobic exercise increases linearly up to inten- rate variability) decreases with increasing age, especially sities of 40% to 60% of maximal oxygen consumption in frail populations.33 Disruption of the peripheral and then plateaus, as illustrated in Figure 12-4. During autonomic nervous system is a common finding in aerobic exercise, dynamic skeletal muscle contraction older adults with diabetes (autonomic peripheral neu- and sympathetic-mediated vasoconstriction facilitate ropathy)34,35 and also following heart transplantation greater venous return and therefore ventricular filling. (“denervated heart”).36 Interruption of the autonomic In addition, myocyte fiber stretching and sympathetic nervous system can also occur with lesions in the central stimulation increase cardiac contractility and ventricu- nervous system, such as a stroke or cervical spinal cord lar emptying. Both greater ventricular filling and empty- injury. Chronotropic disorders in older adults are com- ing result in increased stroke volume during aerobic monly caused by heart rhythm disturbances such as atrio- exercise.28-31 ventricular blocks and sick sinus syndrome.37 The evidence to determine whether or not stroke V· o2 ϭ Cardiac Arteriovenous volume is reduced with aging is equivocal.32 With (Oxygen output ϫ oxygen consumption) difference Stroke ϫ Heart Arterial Venous volume rate oxygen Ϫ oxygen content content FIGURE 12-2  Parameters that contribute to aerobic capacity as described by the Fick equation.

232 CHAPTER 12  Impaired Aerobic Capacity/Endurance Stroke volume (mL) Cardiac Output Untrained Cardiac output (L/min)At rest, cardiac output is approximately 5 L/min and with exercise can increase four- to eightfold up to ap- Trained proximately 20 to 40 L/min. The increase in cardiac output with increasing exercise intensity is linear, as il- Oxygen consumption (L/min) lustrated in Figure 12-5. Increases in both stroke volume and heart rate contribute to greater cardiac output dur- FIGURE 12-4  Stroke volume (SV) response to an aerobic exercise ing acute aerobic exercise, because cardiac output is the product of heart rate and stroke volume. Oxygen de- bout and adaptation following aerobic exercise training. mand is the ultimate stimulus for increasing cardiac output during exercise. With increasing skeletal muscle advanced age (.80 years), ejection fraction at maxi- stimulation, more ATP is needed for cross-bridge cycling mal exercise does appear to decline.1 Any pathological and force production. Oxygen is needed for mitochon- process that reduces ventricular filling or emptying will drial oxidation to continue production of ATP. Greater cause a reduction in stroke volume. With less volume cardiac output is needed to increase delivery of oxygen of blood filling the ventricles, there is less volume to the working muscles in order to meet the greater oxy- available to pump out and a reduction in preload on gen demand of heightened cellular energy metabo- the heart. Ventricular filling is reduced when there is a lism.28,31 mechanical barrier present, such as cardiac valve dys- function, heart fibrosis, or hypertrophic myopathy. All With aging, maximal cardiac output declines second- of these problems are associated with chronic heart ary to decreases in heart rate and stroke volume.1 Any failure, which is a major cause of disability in older factor that diminishes heart rate or stroke volume re- adults. Ventricular filling is also impaired when venous sponse during activity can limit aerobic capacity. In older return is reduced, commonly due to loss of active skel- adults, there are a number of pathological processes that etal muscle pump (e.g., extremity paralysis) or im- can contribute to impairments in cardiac output and paired autonomic nervous system function (e.g., pro- therefore aerobic capacity.39 In addition, deconditioning longed bed rest). Ventricular emptying is reduced when and bed rest can profoundly diminish cardiac output and cardiac contractility is impaired (e.g., myocardial in- aerobic capacity.31 farction) or the pressure that the heart has to pump against, or afterload, is elevated (e.g., hypertension). With aerobic exercise training, cardiac output at rest All of these cardiac problems are common in older and during submaximal exercise does not change signifi- adults and therefore often contribute to impaired aero- cantly. Because cardiac output is directly related to meta- bic capacity. bolic demand, it remains similar under those conditions before and after exercise training. But at maximal work- With aerobic exercise training, stroke volume in- loads, cardiac output increases significantly following a creases at rest as well as during submaximal and maxi- mal exercise. Following aerobic exercise training, ven- Untrained tricular filling (end-diastolic volume) increases due to an Trained increase in plasma blood volume and also more compli- ant ventricular walls. In addition, ventricular emptying Oxygen consumption (L/min) is greater (end-systolic volume) following aerobic exer- cise training. Ventricular emptying is facilitated by the FIGURE 12-5  C​ ardiac output (CO) response to an aerobic exercise greater cardiac contractility secondary to enhanced myo- cyte fiber stretching that occurs during ventricular filling bout and adaptation following aerobic exercise training. and greater myocyte force production secondary to intrinsic changes and hypertrophy.28-31

CHAPTER 12  Impaired Aerobic Capacity/Endurance 233 period of exercise training. This is the result of increases Venous Oxygen Content in stroke volume, because heart rate at maximal work- loads remains relatively constant. After exercise training, Venous oxygen content is determined by oxygen deliv- metabolic work capacity (maximal oxygen consump- ery, uptake, and use in the peripheral tissues. Oxygen is tion) is much greater primarily because of a greater car- required for continued regeneration of ATP through diac output.1,28-31 oxidative metabolism. Without adequate oxygen, energy production from glucose and fats is severely limited. Arterial Oxygen Content When limited energy production occurs from inadequate oxygen, the energy for skeletal muscle cross-bridge Arterial oxygen content is determined by the oxygen- cycling/muscle contraction must come primarily from carrying capacity of the blood (hemoglobin concentra- anaerobic metabolism of glucose (glycolysis) and very tion and red blood cell count) and oxygen loading in the limited use of fat as an energy substrate, leading to lungs. Gas exchange at the alveolar–capillary interface is the rapid onset of fatigue and impaired aerobic capacity. influenced by the time it takes a red blood cell to pass During aerobic exercise, the lower venous oxygen from one end of a capillary to the other end (transit content is primarily due to greater oxygen demand of the time) and the time it takes for complete saturation of working skeletal muscle and diversion of blood to those hemoglobin with oxygen in the pulmonary capillary capillaries. The other factor that reduces venous oxygen (equilibrium time). Pulmonary capillary transit time at content during exercise is the shunting of blood rest and during exercise normally exceeds equilibrium flow away from nonmetabolically active tissues resulting time, which allows for complete hemoglobin saturation. in greater oxygen extraction from those capillary During aerobic exercise, transit time shortens because beds.28,42 blood flow rate increases. The pulmonary arterioles nor- mally vasodilate during exercise in order to accommo- Peripheral oxygen utilization with aging is often im- date the increased cardiac output and maintain adequate paired by a variety of mechanisms. Pathology that inter- time for oxygen loading.40 feres with blood flow, either on a macrovascular level (e.g., peripheral arterial disease) or a microvascular level Oxygen loading in the lungs is fairly well preserved (e.g., diabetes), can reduce oxygen utilization by periph- during early aging but decreased oxygen saturation can eral tissues. Also, cellular changes, such as decreased be seen in the oldest-old (more than age 85 years).1 myoglobin and mitochondrial density, can impair use With pathology, equilibrium time can become greater of oxygen for energy production in skeletal muscle. than transit time, leading to oxygen desaturation. This Impaired aerobic capacity because of the loss of skeletal can be due to slowed oxygen diffusion (increased equi- muscle oxidative capacity is common with decreased librium time) or less time for oxygen loading (decreased use, including deconditioning (e.g., bed rest), immobili- transit time) across the alveolar–capillary interface.41 zation (e.g., extremity casting), peripheral nerve lesions This occurs in diseases that cause thickening of the al- (e.g., nerve entrapment syndromes), and central nervous veolar–capillary membrane (e.g., chronic obstructive system pathology (e.g., spinal cord injury).42,43 pulmonary disease) and low partial pressure of alveolar oxygen (e.g., restrictive pulmonary disease). Decreased Following a period of aerobic exercise training, ve- transit time occurs when blood flow rate is elevated. nous oxygen levels remain similar to levels measured at This can occur when there is either inadequate vasodi- rest. At maximal exercise intensities, venous oxygen con- lation or an increase in cardiac output or both. Fast tent may decrease slightly. Lower venous oxygen content pulmonary arterial flow rates can be due to destruction with training is due to greater oxygen extraction at the of pulmonary capillaries (e.g., emphysema), a func- tissue level and more effective distribution of cardiac tional reduction in arterial conduits (e.g., pulmonary output due to increased skeletal muscle capillary density. emboli), or increased cardiac output (e.g., renal Skeletal muscle extraction and utilization of oxygen is failure).28,41 facilitated by many adaptations such as increased skele- tal muscle capillary density, mitochondrial proliferation, Aerobic exercise training does not normally change and increased skeletal muscle myoglobin concentra- oxygen loading in the lungs, which is typically at full tions.42,43 capacity. Some studies suggest that highly trained ath- letes have such a large cardiac output that oxygen Arteriovenous Oxygen Difference saturation may drop during maximal exercise. This phenomenon has been attributed to an inability of the Gas exchange in the peripheral tissues is reflected in the ar- pulmonary vasculature to dilate enough to accommo- teriovenous oxygen difference, the difference between arte- date the increase in cardiac output resulting in a very rial and venous content of oxygen. Blood leaving the lungs high flow rate and decreased transit time28,31; how- normally has an oxygen content of 16 to 24 mL/100 mL ever, this phenomenon is not likely to occur in most blood and an oxygen saturation of approximately 95% to older adults or limit aerobic capacity, even in masters 98%. The arteriovenous oxygen difference at rest is athletes.1 approximately 5 mL/100 mL blood (25%). During acute

234 CHAPTER 12  Impaired Aerobic Capacity/Endurance aerobic exercise, oxygen extraction increases to approxi- defined in Table 12-1, serves many purposes, including mately 15 to 20 mL/100 mL blood (75%-100%), as illus- determining need for referrals to other professionals, trated in Figure 12-6. The arteriovenous oxygen difference selecting specific tests and measures, establishing the is greater during exercise, normally resulting from lower prognosis, and developing a plan of care.13 History and venous oxygen content in the presence of stable arterial screening determine if a patient has experienced any oxygen content.28-30 signs or symptoms highly suggestive of significant car- diovascular or pulmonary disease. These signs and With aging, sedentary people show a decline in arte- symptoms include shortness of breath at rest or with riovenous oxygen difference during aerobic exercise.42 A mild exertion, pain, discomfort (or other anginal equiva- number of pathological processes can contribute to im- lent) in the chest, neck, jaw, arms, or other areas that pairments in oxygen delivery and use (arteriovenous may result from cardiac ischemia, orthopnea, paroxys- difference) and therefore aerobic capacity.39 In addition, mal nocturnal dyspnea, bilateral ankle edema, palpita- deconditioning and bed rest can profoundly diminish tions, tachycardia, intermittent leg claudication, known oxygen use in skeletal muscle and therefore aerobic heart murmur, and undue fatigue with usual activities.13 capacity.42,43 Systems Review Following a period of aerobic exercise training, the arteriovenous oxygen difference remains similar at rest. The examination of a patient with impaired aerobic ca- At maximal exercise intensities, the arteriovenous oxy- pacity should include a systems review of the anatomic gen difference may increase slightly. This increase in and physiological status of the four primary Practice arteriovenous oxygen difference is the result of lower Pattern systems, in addition to communication ability, venous oxygen content without a change in arterial oxy- affect, cognition, language, and learning style.14 With gen content. Interestingly, older women show an in- aerobic capacity impairment, screening of the integu- crease in arteriovenous difference during exercise after mentary, musculoskeletal, and neuromuscular systems aerobic training but older men do not.44 provides invaluable information for patient evaluation, diagnosis, prognosis, and intervention planning. Assess- PHYSICAL THERAPY EXAMINATION ment of heart rate, respiratory rate, blood pressure, and edema is recommended for cardiovascular and pulmo- History nary system screening. Integumentary system screening includes assessment of skin integrity, skin color, and A comprehensive history of a patient with impaired presence of scar. Musculoskeletal system screening in- aerobic capacity helps to elucidate contributory factors cludes assessment of body symmetry, joint range of and to determine appropriate interventions. In addition, motion, muscle strength, height, and weight. Neuromus- it is important to identify risk factors for cardiovascular cular system screening includes assessment of balance, disease and appropriate interventions based on risk and locomotion, transfers, and motor control.14 patient setting. Screening for cardiovascular risk factors, a-vO2diff (mL/dL) Tests and Measures Untrained Signs and Symptoms in Response to Increased Trained Oxygen Demand.  Assessment of a patient’s cardiovas- cular and pulmonary response to functional activity/ Oxygen consumption (L/min) aerobic exercise can provide important information about any aerobic capacity impairments, and factors FIGURE 12-6  A​ rteriovenous oxygen difference (a-vO2diff) re- contributing to it. Baseline measurement of resting vital signs, including heart rate, blood pressure, respiratory sponse to an aerobic exercise bout and adaptation following aero- rate, and oxygen saturation provides valuable informa- bic exercise training. tion regarding the patient’s physiological state. Measur- ing these vital signs during aerobic exercise and compar- ing them to the patient’s resting values can be used to evaluate aerobic capacity. As discussed in the first part of this chapter, aerobic exercise or activity stresses the oxy- gen delivery system and produces predictable changes in vital signs. Heart rate should increase proportionately to the metabolic demand placed on the body. Systolic blood pressure reflects cardiac output and therefore should also go up in proportion to the metabolic demand of the

CHAPTER 12  Impaired Aerobic Capacity/Endurance 235 TA B L E 1 2 - 1 Cardiovascular Disease Risk Factors Positive Risk Factors Defining Criteria Age Men ages 45 years or older; women ages 55 years or older Family history Myocardial infarction, coronary revascularization, or sudden death before age 55 years in father or other male Cigarette smoking Sedentary lifestyle first-degree relative, or before age 65 years in mother or other female first-degree relative Obesity* Current cigarette smoker or those who quit within the previous 6 months or exposure to environmental tobacco Hypertension Dyslipidemia smoke Not participating in at least 30 minutes of moderate intensity (40% to 60% VO2R) physical activity on at least Prediabetes 3 days of the week for at least 3 months Negative Risk Factors Body mass index 30 kg/m2 or waist girth .102 cm (40 in.) for men and .88 cm (35 in.) for women High serum HDL Systolic blood pressure (BP) 140 mmHg and/or diastolic BP 90 mmHg, confirmed by measurements on at cholesterol† least two separate occasions, or on antihypertensive medication Low-density lipoprotein (LDL-C) cholesterol 130 mg/dL (3.37 mmol/L) or high-density lipoprotein (HDL-C) cholesterol ,40 mg/dL (1.04 mmol/L) or on lipid-lowering medication. If total serum cholesterol is all that is available, use 200 mg/dL (5.18 mmol/L) Impaired fasting glucose (IFG) 5 fasting plasma glucose 100 mg/dL (5.50 mmol/L) but ,126 mg/dL (6.93 mmol/L) or impaired glucose tolerance (IGT) 5 2-hour values in oral glucose tolerance test (OGTT) 140 mg/dL (7.70 mmol/L) but ,200 mg/dL (11.00 mmol/L) confirmed by measurements on at least two separate occasions Defining Criteria 60 mg/dL (1.55 mmol/L) *Professional opinions vary regarding the most appropriate markers and thresholds for obesity; therefore, allied health professionals should use clinical judgment when evaluating this risk factor. †Note: It is common to sum risk factors in making clinical judgments. If HDL is high, subtract one risk factor from the sum of positive risk factors, because high HDL decreases CVD risk. (Adapted from Thompson WR, Gordon NF, Pescatello LS, editors: ACSM’s guidelines for exercise testing and prescription. Philadelphia, PA, 2010, Wolters Kluwer/Lippincott Williams & Wilkins.) exercise or activity. Diastolic blood pressure reflects total endurance/aerobic capacity and functional activities that peripheral resistance, which remains relatively stable in require household and community ambulation. Cooper most people during aerobic exercise. Respiratory rate originally described a 12-minute run test in 1968, which increases with mild- to moderate-intensity aerobic exer- was subsequently modified to a 12-minute walk test and cise and then plateaus as exercise intensity continues to then to both 2- and 6-minute walk tests.45,46 Walk tests increase. Oxygen saturation should remain stable with are very inexpensive to administer because they require aerobic exercise because arterial oxygen content should minimal equipment, facility space, expertise, and time. not change under normal conditions. They can be used for a wide variety of patients and prac- tice settings.47-52 Walk tests are particularly useful for Patient symptoms can also be used to assess aerobic patients that require use of an assistive device for ambu- capacity. Onset of symptoms such as fatigue, shortness lation or that have very low exercise tolerance. In addi- of breath, and weakness during exercise are often too tion, walk tests pose very little risk to patients because ubiquitous and nonspecific to provide clinically useful the exercise intensity is completely controlled by the information. However, several established symptom patient and rest intervals can be taken as necessary. Dis- scales can be used to objectively ascertain patient symp- tance is the primary outcome measured with walk tests. toms such as dyspnea, angina, claudication, and per- Patients are instructed to walk as far as possible in the ceived exertion (Box 12-2). In addition, assessment of designated amount of time (2, 6, or 12 minutes) on an pain can help to differentiate among competing hypoth- established, standardized pathway. It is important that eses about the genesis of an activity limitation that might the patients’ self-selected walking speed not be altered by also be due to impaired aerobic capacity. Patient symp- obstacles or traffic in the pathway, others walking along- toms during aerobic exercise can also provide informa- side them, or the therapist guarding/assisting.53,54 Stan- tion regarding central perfusion (e.g., syncope, light- dardization of walk test procedures is crucial for optimal headedness, or change in mental status) and peripheral reliability, sensitivity, and interpretation of results. It is perfusion (e.g., extremity tingling, numbness, or cold- important to provide consistent verbal encouragement ness). during walk tests, choosing either no feedback or similar 6-Minute Walk Test.  W​ alk tests are commonly verbal phrases at each administration. Guyatt et al55 used clinically to measure aerobic capacity in older found that verbal encouragement during a 6-minute adults. Walk tests provide information about patient

236 CHAPTER 12  Impaired Aerobic Capacity/Endurance BO X 1 2 - 2 Commonly Used Symptom Scales adults when completing the 6-minute walk test once under typical clinical conditions, including use of an as- Angina Scale sistive device as needed.61 She found that 60- to 69-year- 1 Mild, barely noticeable old subjects (men and women combined) walked 420.4 2 Moderate, bothersome m  105.4 m during the 6-minute walk test and 80- to 3 Moderately severe, very uncomfortable 89-year-olds walked 292.1  112.7 m. Steffen et al62 4 Most severe or intense pain ever experienced evaluated community-dwelling older adults but elimi- nated subjects requiring use of assistive devices. She ob- Dyspnea Scale tained scores more similar to Gibbons’s for 60- to 1 Light, barely noticeable 69-year-olds (572  92 m for males; 538  92 m for 2 Moderate, bothersome females), and for 80- to 89-year-olds (417  73 m for 3 Moderately severe, very uncomfortable males; 392  85 m for females). 4 Most severe or intense dyspnea ever experienced Graded Exercise Testing.  G​ raded exercise testing can be used to assess aerobic capacity objectively Claudication Scale and has been used extensively in the past but is not as 1 Definite discomfort or pain, but only at initial or modest levels widely used now because of its time/cost burden and indirect relationship to functional ability. Briefly, graded (established, but minimal) exercise testing can be used to (1) diagnose cardiovascu- 2 Moderate discomfort or pain from which the patient’s attention lar and/or pulmonary disease, (2) determine disease severity/risk stratification, (3) evaluate functional abil- can be diverted (e.g., by conversation) ity, (4) establish baseline for exercise prescription or 3 Intense pain (short of grade 4) from which the patient’s attention disease progress, and (5) evaluate intervention effective- ness. Data collection during graded exercise testing cannot be diverted often includes measurement of heart rate, electrocardio- 4 Excruciating and unbearable pain graphic (ECG) information, oxygen saturation, blood pressure, rating of perceived exertion (RPE), and signs Rating of Perceived Exertion (RPE) and symptoms. Graded exercise test modes include 0 5 Nothing at all treadmill walking/running, leg cycle ergometry, arm 1 5 Very light cycle ergometry, and stair stepping. Recently, Men- 2 5 Fairly light delsohn et al63 described the validity of a graded exer- 3 5 Moderate cise test as good to excellent using reciprocal upper and 4 5 Some what hard lower body forward and backward exercise using a 5 5 Hard NuStep in frail older adults. Graded exercise tests most 6 often employ continuous protocols consisting of pro- 7 5 Very hard gressive preset stages of increasing work intensities with 8 no rest intervals. Graded exercise tests can be submaxi- 9 mal (i.e., stopped at a preset exercise intensity), symp- 10 5 Very, very hard tom limited (i.e., stopped when a specified contraindica- tion presents), or maximal (i.e., patient exercises to walk test improved performance and increased within- volitional exhaustion). Outcomes of a graded exercise person variability in patients with chronic airflow limita- test include oxygen consumption, heart rate, RPE, and tion and heart failure. Although multiple trials of a walk sign/symptom threshold. Oxygen consumption can be test are ideal to minimize the effects of learning,54,56-59 directly measured if metabolic instrumentation is avail- this is often not feasible in a clinical setting, especially able, but more commonly it is estimated using estab- with older patients who have low aerobic capacity. Fi- lished equations.13 nally, the length and shape of the walking course influ- ences distance covered on a walk; therefore, it is impor- Graded exercise testing may be administered by a tant to standardize the walking course for comparison of physical therapist in some circumstances, such as when repeated measurements (i.e., initial and discharge tests). trying to determine whether a patient’s maximal aerobic Shorter courses produce shorter walk test distances than capacity is limiting function. For example, when a pa- longer courses, and linear courses produce shorter walk tient wants to return to a specific occupational or recre- test distance than circular and rectangular courses.53 ational activity, it is often important to determine if the associated aerobic demands are safe. Graded exercise Walk test distance can be evaluated by comparing the testing may also be used to determine symptom thresh- patient’s distance to reference values. When used as old. For example, in patients with claudication, tread- an outcome measure, change in walk test distance re- mill walking at a specific speed and grade frequently will flects change in aerobic capacity with intervention. provoke leg pain. Graded exercise testing can also be Gibbons et al60 reported 6-minute walk test distances for used when a walk test is not feasible. For example, in multiple repetitions in healthy subjects between the ages of 20 and 80 years. Their normative data for subjects between ages 60 and 80 years were 688.8  89.3 m for men and 584  53 m for women. Lusardi et al61 identi- fied normative distances for community-dwelling older

CHAPTER 12  Impaired Aerobic Capacity/Endurance 237 patients with lower extremity paralysis testing with an available rely on concurrent symptoms such as angina upper body ergometer is most feasible. (Seattle Angina Questionnaire), dyspnea (Minnesota Self-Report Measures.  ​Self-report assessment mea- Living with Heart Failure Questionnaire, Kansas City sures can be useful in reflecting the functional impact of Cardiomyopathy Questionnaire), or pain (Heart Surgery impaired aerobic capacity on physical activity level, par- Symptom Inventory), which limits their use to specific ticipation, and health-related quality of life in older populations of older patients.70-73 The Duke Activity adults. Self-report assessments require patients to an- Status Index74 is a self-report measure of aerobic capacity swer questions and rate statements regarding subjective as it relates to functional activities. Although the Duke perception of their functional ability. Self-report instru- Activity Status Index is a disease-specific instrument, it ments are ideal for measuring patient perception of con- was developed for patients with cardiovascular disease, structs, such as pain, difficulty, and depression, espe- which is very prevalent in older adults, affecting 73% of cially in home and community environments in addition those between the ages of 60 and 79 years. The Duke to clinical settings. Functional ability is often measured Activity Status Index measures functional capacity using using generic, self-report quality of life instruments. A 12 questions regarding the ability to perform specific primary disadvantage of generic health-related self- tasks. The questions are answered on a nominal scale report instruments is they may not be as sensitive to (yes/no) and scores are weighted relative to the metabolic change as disease-specific health-related self-report demand of the task (Table 12-3). The summary score instruments.64-66 generated from the Duke Activity Status Index reflects an estimation of the patient’s maximal oxygen consumption; Generic health-related quality of life instruments, therefore, higher scores indicate better aerobic capacity such as the Medical Outcomes Study Short Form 36 than lower scores with a maximal possible score of Health Survey (SF-36) or RAND 36-Items Health Sur- 65.7.75,76 The Duke Activity Status Index has been used in vey, are commonly used in older adults. These instru- numerous populations of older patients to quantify aero- ments have been used extensively to study health-related bic capacity.77-79 quality of life in patients with impaired aerobic capacity secondary to cardiopulmonary problems since they have The Physical Activity Scale for the Elderly (PASE) is a well-documented degrees of reliability, validity, and sen- 10-item self-report questionnaire designed to assess sitivity.64,67-69 Ten of the twelve items of the Physical leisure, household, and occupational activity in adults. Function subscale of this instrument reflect aerobic ca- This instrument measures physical activity participation pacity (Table 12-2). To improve time efficiency and re- involving tasks beyond activities of daily living. The duce response burden, this subscale can be used indepen- PASE has been used to assess activity level in a variety of dent from the entire instrument. study designs ranging from retrospective to epidemio- logic, and patient populations with chronic heart failure, Disease-specific self-report instruments also reflect pulmonary disease, and coronary heart disease.80-82 In a patient aerobic capacity and often are more sensitive to study with 277 subjects, the PASE test–retest reliability change than generic self-report instruments. But many of coefficient was 0.75.80 The PASE validity was examined the cardiovascular and pulmonary self-report instruments TA B L E 1 2 - 2 Items in the Physical Function Subscale of the RAND-36 Item Health Survey and the SF-36 The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how? (Circle One Number on Each Line) Yes, limited a lot Yes, limited a little No, not limited at all 3. Vigorous activities, such as running, lifting heavy 1 2 3 objects, participating in strenuous sports 1 2 3 4. Moderate activities, such as moving a table, pushing 1 2 3 a vacuum cleaner, bowling, or playing golf 1 2 3 5. Lifting or carrying groceries 1 2 3 6. Climbing several flights of stairs 1 2 3 7. Climbing one flight of stairs 1 2 3 8. Bending, kneeling, or stooping 1 2 3 9. Walking more than a mile 1 2 3 10. Walking several blocks 1 2 3 1 1. Walking one block 1 2. Bathing or dressing yourself (From Hays RD, Sherbourne CD, Mazel RM: The RAND-36-Item health survey 1.0. Health Econ 2:217-227, 1993.)

238 CHAPTER 12  Impaired Aerobic Capacity/Endurance TA B L E 1 2 - 3 Duke Activity Status Index Weighted score Can you... 2.75 1.75 1. take care of yourself, that is, eating, dressing, bathing, or using the toilet? 2.75 2. walk indoors, such as around your house? 5.50 3. walk a block or two on level ground? 8.00 4. climb a flight of stairs or walk up a hill? 2.70 5. run a short distance? 3.50 6. do light work around the house, such as dusting or washing dishes? 8.00 7. do moderate work around the house, such as vacuuming, sweeping floors, or carrying groceries? 4.50 8. do heavy work around the house, such as scrubbing floors, or lifting or moving heavy furniture? 5.25 9. do yard work, such as raking leaves, weeding, or pushing a power mower? 6.00 1 0. have sexual relations? 1 1. participate in moderate-intensity recreational activities, such as golf, bowling, dancing, doubles tennis, or 7.50 throwing a baseball or football? 12. participate in strenuous sports, such as swimming, single tennis, football, basketball, or skiing? Total (Modified from Hlatky MA, Boineau RE, Higginbotham MB, et al: A brief self-administered questionnaire to determine functional capacity (The Duke Activity Status Index). Am J Cardiol 64:651-654, 1989.) by comparison with accelerometry data (r 5 0.49). The (skin atrophic changes, absent dorsal pedal and poste- PASE was significantly correlated with strength, resting rior tibial pulses, onset of calf pain with walking heart rate, systolic blood pressure, peak oxygen uptake, and relief with rest, etc.), it would be appropriate and quality of life (P , 0.05, r 5 |0.13 – 0.42|).80 Al- to refer the patient for medical follow-up. Also though the PASE does not directly measure aerobic ca- consider an older patient with known hypertension pacity, the level of daily physical activity parameters as- being treated with antihypertensive medication sociated with aerobic capacity are directly related. who presents to physical therapy with a blood pres- sure of 212/116 mmHg. This patient should be EVALUATION, DIAGNOSIS, referred back to the physician before beginning physi- AND PROGNOSIS cal therapy intervention that involves exercise or sub- stantial physical activity. Next, screening for cardio- The evaluation, diagnosis, and prognosis of older adults vascular disease risk is completed by utilizing with aerobic capacity impairment require integration of information obtained in the patient examination, oxygen uptake, transport, delivery and utilization sys- including history of known disease, signs and symp- tems knowledge, physical therapy management strate- toms, and presence of risk factors. This information gies, and patient history and examination findings. can then be used to determine appropriate referral Evaluation of older adults with aerobic capacity impair- to a physician, if it has not already taken place ment should include screening for referral, identification (i.e., Direct-access), exercise testing, and exercise of contributing pathologies with concomitant impair- intervention. Physical therapists often detect currently ments, activity limitations, participation restrictions and undiagnosed abnormalities in the cardiovascular and disability, and differential diagnosis of cause(s). Lastly, pulmonary systems in older adults because assessment anticipated prognosis related to improvement in aerobic involves physical activity. Lastly, the presence of capacity and the expected outcomes of remediating poor contraindications for exercise participation and indi- aerobic capacity should be determined. cations for stopping exercise should be determined, as outlined in Box 12-3.13 Decisions to Refer Evaluation of Vital Signs Evaluation of the older patient with an aerobic capac- ity impairment first requires that the physical thera- Evaluation of the patient’s vital signs at rest can provide pist identify any history, signs, or symptoms sugges- insight on factors contributing to aerobic impairment tive of major medical issues that are undiagnosed based on the oxygen delivery model. Resting bradycar- or poorly managed. For example, if an older patient dia in older adults is most often due to medications (i.e., is referred to physical therapy with a diagnosis of b-blockers) or a cardiac dysrhythmia such as atrioven- bilateral knee osteoarthritis, but other examination tricular block or sick sinus syndrome.37 Resting tachy- findings highly suggest peripheral arterial disease cardia in older adults may be due to hypotension, atrial

CHAPTER 12  Impaired Aerobic Capacity/Endurance 239 B O X 1 2 - 3 Aerobic Exercise Contraindications and Stopping Points Absolute Exercise Contraindications • Unstable angina • Uncontrolled cardiac dysrhythmias causing symptoms of hemodynamic compromise • Uncontrolled symptomatic heart failure • Acute or suspected major cardiovascular event (including severe aortic stenosis, pulmonary embolus or infarction, myocarditis, pericarditis, or dissecting aneurysm) • Acute systemic infection, accompanied by fever, body aches, or swollen lymph glands • A recent significant change in resting ECG suggestive of ischemia, myocardial infarction, or other acute cardiac event* Relative† Exercise Contraindications • Known significant cardiac disease (including left main coronary stenosis, moderate stenotic valvular disease, hypertrophic cardiomyopathy, high-degree atrioventricular block,* ventricular aneurysm) • Severe arterial hypertension (systolic BP of .200 mmHg or a diastolic BP of .110 mmHg) at rest • Tachydysrhythmia or bradydysrhythmia* • Electrolyte abnormalities • Uncontrolled metabolic disease • Chronic infectious disease • Mental or physical impairment leading to inability to exercise safely Absolute Indications for Terminating Exercise • Drop in systolic BP of .10 mmHg from baseline despite an increase in workload when accompanied by other evidence of ischemia • Moderately severe angina (.2/4) • Increasing nervous system symptoms • Signs of poor perfusion • Subject’s desire to stop • Technical difficulty with monitoring equipment • Sustained ventricular tachycardia* • ST elevation (11.0 mm) in leads without diagnostic Q-waves* Relative Indications for Terminating Exercise • Drop in systolic BP of .10 mmHg from baseline despite an increase in workload in the absence of other evidence of ischemia • Increasing chest pain • Hypertensive response (systolic BP of .250 mmHg or diastolic BP of . 115 mmHg) • Fatigue, shortness of breath/wheezing, leg cramps, or claudication • ST or QRS changes such as excessive ST depression (.2 mm ST-segment depression)* • Arrhythmias other than sustained ventricular tachycardia (including multifocal premature ventricular contractions (PVCs), triplets of PVCs, supraventricular tachycardia, heart blocks, or bradyarrhythmias)* • Development of bundle-branch block or intraventricular conduction delay that cannot be distinguished from ventricular tachycardia* *Assume that ECG monitoring is available. †Relative contraindications can be superseded if there are benefits. (Adapted from Thompson WR, Gordon NF, Pescatello LS, editors: ACSM’s guidelines for exercise testing and prescription. Philadelphia, PA, 2010, Wolters Kluwer/ Lippincott Williams & Wilkins.) fibrillation or flutter, cardiac autonomic disruption, or Vital sign response during aerobic activity can help to ventricular tachycardia. Systolic hypertension at rest in elucidate causes of aerobic capacity impairment. When older adults is most often due to uncontrolled essential physiological response to aerobic exercise is abnormal, hypertension.74 Systolic hypotension at rest occurs when the underlying cause of impaired oxygen delivery may be cardiac output is low, such as with orthostatic hypoten- determined. Both a decrease in or a failure to increase sion, atrial fibrillation/flutter, heart failure, or volume heart rate or systolic blood pressure with exercise suggest depletion/dehydration. Oxygen desaturation at rest oc- that the heart is unable to respond to increased oxygen curs when there is impaired oxygen diffusion between demand. A rise in diastolic blood pressure during aerobic the alveolar capillary membrane. This phenomenon can exercise may indicate coronary artery disease and poses occur when diffusion is slowed as a result of low oxygen a dangerous threat to patient safety because it reduces concentrations in the alveoli or thickening of the inter- coronary perfusion. Oxygen desaturation during exercise face. In addition, oxygen desaturation can also occur in older adults often occurs when increased pulmonary when blood flow through the pulmonary capillaries is capillary flow reduces time for oxygen uptake in the pres- increased, reducing time for oxygen exchange. Normal ence of impaired diffusion. Oxygen desaturation during vital sign ranges at rest and implications are summarized aerobic exercise does not reflect increased oxygen de- in Table 12-4. mand in the peripheral tissues, that is, skeletal muscles.

240 CHAPTER 12  Impaired Aerobic Capacity/Endurance TABLE 12-4 Summary of Vital Sign Interpretation Vital Sign Heart rate Normal Range (resting) Implications dBP 60-100 bpm ,60 bpm ➔ no action if asymptomatic and normal ECG sBP 70-90 mmHg refer to physician if symptomatic 100-140 mmHg refer to physician if no ECG available and there is no history of dys- SpO2 90% rhythmia or chronotropic medication use 120-150 bpm ➔ precaution to initiating activity/exercise refer to physician .150 bpm ➔ contraindication to initiating activity/exercise refer to physician immediately With exercise/activity ➔ increases in proportion to workload significant drop is an indication to stop exercise ,70 mmHg ➔ no action if asymptomatic refer to physician if symptomatic .115 mmHg ➔ contraindication to initiating activity/exercise refer to physician With exercise/activity ➔ remains similar to resting or may drop slightly increase .115 is an indication to stop exercise ,100 mmHg ➔ no action if asymptomatic refer to physician if symptomatic .200 mmHg ➔ contraindication to initiating activity/exercise refer to physician With exercise/activity ➔ increases in proportion to workload .250 mmHg is an indication to stop exercise 86%-89% ➔ consider adding or increasing supplemental oxygen refer to physician if previously undiagnosed #85% ➔ add or increase supplemental oxygen contraindication to initiating activity/exercise refer to physician if remains ,90% With exercise/activity ➔ should remain 90% 86%-89% relative indication to stop exercise #85% absolute indication to stop exercise Oxygen Consumption, Saturation is maintained higher than 90%, suggesting no limitation and Energy Expenditure in pulmonary gas exchange. But when pathology affects oxygen loading across the alveolar–capillary interface, In most adults, including older adults, maximal cardiac exercise may cause oxygen desaturation and therefore be output is the physiological variable that limits maximal a limiting factor in maximal aerobic capacity. Limita- oxygen consumption and therefore aerobic capacity. tions in skeletal muscle oxygen extraction/utilization are During maximal aerobic exercise, the capacity for in- not thought to normally limit aerobic capacity but can creasing ventilation is much greater than the capacity for be regarded as contributory factors. Sometimes a pa- increasing cardiac output.28,31 Also there is a strong cor- tient’s apparent impaired aerobic capacity is not limited relation between cardiac output and aerobic capacity at all by oxygen delivery and utilization but rather by an measured by maximal oxygen consumption. Even dur- adverse symptom such as pain or fear of falling.83 ing maximal exercise of older adults, oxygen saturation

CHAPTER 12  Impaired Aerobic Capacity/Endurance 241 Sometimes older patients may present with what BOX 12-4 Factors That Influence Prognosis appears initially to be an impairment in aerobic capacity, of a Patient with Impaired Aerobic but is actually a high energy expenditure for physical Capacity activity. One common clinical example of high energy expenditure during physical activity is the increased • Accessibility and availability of resources metabolic demand during movement associated with • Adherence to the intervention program obesity. Another cause of high energy expenditure dur- • Age ing activity, particularly walking, is decreased movement • Anatomic and physiological changes related to growth and economy (i.e., greater oxygen consumption than normal is required for a particular workload). Reduced econ- development omy can occur whenever movement coordination is • Caregiver consistency or expertise altered, for example, with hemiparesis or lower extrem- • Chronicity or severity of the current condition ity amputation. Although aerobic capacity may not be • Cognitive status significantly impaired under these conditions, older • Comorbidities, complications, or secondary impairments patients are performing functional activities at a higher • Concurrent medical, surgical, and therapeutic interventions percentage of their maximal aerobic capacity that can • Decline in functional independence contribute to onset of fatigue. • Level of impairment • Level of physical function Diagnostic Classification • Living environment • Multisite or multisystem involvement The Guide to Physical Therapist Practice classifications • Nutritional status used most often for patients with impaired aerobic ca- • Overall health status pacity are the Cardiovascular/Pulmonary Preferred Prac- • Potential discharge destinations tice Patterns. Pattern B: Impaired Aerobic Capacity/ • Premorbid conditions Endurance Associated with Deconditioning may include • Probability of prolonged impairment, functional limitation, or the following exam findings: decreased endurance, in- creased cardiovascular or pulmonary response to low- disability level workloads, increased perceived exertion with func- • Psychological and socioeconomic factors tional activities, and inability to perform routine work • Psychomotor abilities tasks as a result of shortness of breath. Pathologies that • Social support may be included under this practice pattern are acquired • Stability of the condition immune deficiency syndrome, cancer, cardiovascular dis- orders, chronic system failure, musculoskeletal disor- (Data from American Physical Therapy Association: Guide to physical ders, neuromuscular disorders, and pulmonary disor- therapist practice, ed 2. Phys Ther, 81:9-744, 2001.) ders. Some of the anticipated outcomes of physical therapy intervention for older adults with impaired secondary to inactivity/bed rest and increased habitual aerobic capacity include the following: (1) symptoms as- activity level have a dose-response effect. The greater the sociated with increased oxygen demand are decreased; change in activity level, the greater the degree of physi- (2) tissue perfusion and oxygenation are enhanced; ological adaptation that will occur. Consider the exam- (3) endurance is increased; (4) energy expenditure per ple of an older patient with New York Heart Association unit of work is decreased; (5) ability to perform physical class III heart failure (dyspnea with ordinary activities). tasks is improved; and (6) ability to resume roles in self- A prognosis for moderate improvement in aerobic care, home management, work, community, and leisure capacity sufficient to increase household ambulation is improved. Improvements in risk reduction/prevention distances would be reasonable for this patient. In con- and health status are anticipated outcomes for older trast, a reasonable prognosis for improvement in aerobic patients with impaired aerobic capacity as well.14 capacity for an older adult who was previously healthy but now diagnosed with pneumonia severe enough to Factors Affecting Prognosis require hospitalization and ventilatory support (e.g., bilevel positive-airway pressure) for 6 days, would be The prognosis for improving aerobic capacity in older full return to previous activities. adults is multifactorial and depends on the patient’s prior level of physical inactivity, degree of pathology PLAN OF CARE INTERVENTIONS affecting the oxygen transport system, and activity re- strictions that impede habitual activity level and partici- Therapeutic exercise, functional training, and prescrip- pation in aerobic exercise. Factors that influence progno- tion of assistive, adaptive, or supportive devices are the sis of a patient with impaired aerobic capacity are listed most frequently used interventions to improve aerobic in Box 12-4. The physiological adaptations that occur capacity in older adults with aerobic capacity limita- tions. Other types of procedural interventions are ap- propriate when they address secondary issues that may be limiting aerobic capacity or ability to participate in therapeutic exercise or functional training. For example, use of airway clearance techniques would be appropriate

242 CHAPTER 12  Impaired Aerobic Capacity/Endurance to improve oxygen loading and therefore aerobic capac- be predicted from age or determined by maximal graded ity for patients with pulmonary mucus retention. exercise test. The most commonly used equation to predict maximal heart rate is the Karvonen, HRmax 5 Exercise 220 – age, but some studies have suggested that this over- estimates in adults older than age 40 years and underesti- Therapeutic exercise is the cornerstone for treating older mates in adults age 40 years and younger.13,85,86 As an patients with impaired aerobic capacity. When prescrib- alternative, maximal heart rate can be calculated using a ing exercise for older adults to improve aerobic capacity, formula developed by Gellish et al, HRmax 5 206.9 – the general principles of exercise should be considered. (0.67 3 age).13,87 Exercise intensity has also been defined The overload principle of exercise training states that qualitatively as moderate (physical activity that noticeably increases in habitual aerobic workload above that nor- increases breathing, sweating, and heart rate) or vigorous mally experienced will cause adaptations that improve (physical activity that substantially increases breathing, maximal aerobic capacity. Conversely, the reversibility sweating, and heart rate).88 principle of training indicates that restrictions in habit- ual aerobic workload below that normally experienced Aerobic exercise duration equal to 20 to 60 minutes will cause adaptations that impair maximal aerobic ca- of continuous activity is generally recommended for pacity. The greatest degree of improvement in aerobic disease risk reduction. However, discontinuous activity capacity will occur during activities that are most similar can be used in very deconditioned patients when initiat- to the training stimulus/activity (aka specificity of train- ing aerobic exercise. Patients with functional capacities ing). Conversely, some degree of improvement in aerobic of less than 3 to 5 metabolic equivalents (METs) benefit capacity will occur even during activities that are dis- from multiple (i.e., 2 to 4 times per day) and short similar to the training stimulus/activity (aka generality of (i.e., total sum of 20 to 30 minutes) exercise sessions. training principle).13 Recommended aerobic exercise frequency is “on most days,” but even exercising with limited frequency is bet- Traditionally, the four components of an aerobic ex- ter than no exercise at all.13,88 It is important to note that ercise prescription are mode, intensity, duration, and these recommended thresholds for aerobic exercise are frequency. The greatest improvements in aerobic capac- based on epidemiologic evidence for obtaining health ity occur when the mode of exercise involves the use benefits. of large muscle groups contracting rhythmically over prolonged periods of time. Aerobic exercise modes can Newer physical activity guidelines intertwine aspects be categorized into weight-bearing (high- and low- of intensity, duration, and frequency. The Physical Activ- impact) and non–weight-bearing activities. Examples of ity Guidelines for Americans recommend that older aerobic exercise modes in each category are provided in adults participate in 150 minutes a week of moderate- Box 12-5. When selecting a mode of aerobic exercise for intensity or 75 minutes a week of vigorous-intensity a patient, physical therapists should also consider risk of aerobic exercise.88,89 Furthermore, aerobic exercise injury, likelihood of adherence, and unique vocational/ should preferably be performed in episodes of at least recreational objectives. It is important to select a mode 10 minutes and spread throughout the week. It is also of exercise that is not too metabolically demanding so acknowledged that additional health benefits are pro- that it can be continued for a period of time long enough vided by greater amounts of aerobic activity.88,89 Moder- to stimulate aerobic adaptation. ate-intensity exercise is defined as increases in energy expenditure by 3.0 to 5.9 times more than the energy Aerobic exercise intensity can be based on heart rate expended at rest (aka METs) or a perceived exertion of (10 to 20 bpm below onset of adverse signs or symptoms 5 to 6 of 10. Vigorous-intensity exercise is defined as or 60% to 90% of maximal heart rate) or on the indi- increases in energy expenditure by 6.0 or greater times vidual’s RPE (4 to 6 on a 10-point scale; or 12 to 16 on a more than the energy expended at rest (METs) or a per- 19-point scale).13,14,84 Maximal heart rate (HRmax) can ceived exertion of 7 to 8 of 10.88,89 B O X 1 2 - 5 Example Modes of Aerobic Exercise Weight-Bearing, Weight-Bearing, Non–Weight-Bearing, High Impact Low Impact Nonimpact Jogging Walking Swimming Aerobic dancing (with Leg cycle ergometry Pool “cycling”/ “kicking” Aerobic dancing (without Arm cycle ergometry jumping) Rowing Stepping (remove feet) jumping) Chair aerobics Jumping rope Stepping (stationary feet) Calisthenics Cross-country skiing Pool aerobics/walking

CHAPTER 12  Impaired Aerobic Capacity/Endurance 243 Progression of aerobic exercise in older patients supported the efficacy of using pedometers to increase should be individualized and based on the patient’s physical activity and decrease body mass index and sys- anticipated goals and expected outcomes. Often the tolic blood pressure. Interestingly, this decrease in body initial phase of an aerobic exercise program progres- mass index was associated with older age and having an sion is aimed at attaining the minimum intensity, dura- identified step goal.98 In addition, evidence suggests that tion, and frequency for a specific mode of exercise. The there is an inverse relationship between body weight improvement phase of an aerobic exercise program and physical activity. However, there is also a dose-re- progression utilizes a combination of adjustments in sponse effect of physical activity on weight, with higher mode, intensity, duration, or frequency of exercise to doses capable of providing greater weight loss. Guide- reach a specific exercise capacity goal. For example, lines for prevention of weight gain are 150 to 250 min- often to reach functional milestones, such as walking utes per week of moderately vigorous physical activity 150 feet without rest, it is more important to increase with an energy equivalent of approximately 1200 to the duration rather than the intensity of aerobic capac- 2000 kcal/week.99 ity training. The exercise prescription parameters that optimally increase aerobic capacity have not been Functional Training fully elucidated and most likely vary with patient char- acteristics. For example, Sisson et al90 found that the Functional training and physical activity can also be volume of aerobic exercise was the most important used for older patients with impaired aerobic capacity.83 predictor of improved aerobic capacity in sedentary, Improvement in functional ability often leads to more postmenopausal women. In addition, Bocalini et al38 physical activity, which in turn further improves aerobic found greater improvement in aerobic capacity in older capacity. Improvements in balance ability may also con- women participating in water-based versus land-based tribute to increased aerobic capacity, because fear of programs. Whereas both low- and high-intensity aero- falling is related to activity restriction and more seden- bic exercise training lowered systolic blood pressure in tary behaviors. In some patients with impaired aerobic older adults, only high-intensity exercise training re- capacity (e.g., end-stage respiratory failure), improve- duced weight and improved lipid profile.91 Interest- ment may not be possible, but using strategies that allow ingly, Kruger et al92 reported that often the prescribed optimal function with a deficit in aerobic capacity can be dose of aerobic exercise used in research trials was employed. These energy conservation strategies mini- lower than what is currently recommended. mize the energy demand of functional tasks by modifica- tion, organization, and prioritization. For example, tasks The maintenance phase of an aerobic exercise pro- performed in sitting versus standing expend less energy gram involves indefinite continuation of a specified exer- (e.g., preparing food sitting at a table instead of standing cise mode, intensity, duration, and frequency to preserve at a counter). Another strategy is to plan daily activities the existing aerobic exercise capacity. Many factors, to minimize redundancies in movement (e.g., organize a such as lack of time, fear of injury, or level of importance shopping list in the order that items are found in the placed on exercise may influence older patients’ ability store). Also, individuals should be encouraged to priori- to engage in continued exercise.93,94 Some studies suggest tize activities that are most important for them to do that older adults actually have greater self-efficacy (con- before the onset of fatigue (e.g., finish a woodworking fidence) for symptom management, exercise participa- project for a grandchild’s birthday), or delegate tasks tion, and physical activity than younger adults.83,95 It is that are less important (e.g., ask someone else to fix a possible that age brings experience in coping with health broken cabinet door). Box 12-6 provides examples of problems, and in turn, these coping skills better prepare energy conservation techniques that patients with low older adults to engage in physical activity. Over time, aerobic capacity can employ. older adults may acquire self-management skills for ex- ercise participation despite experiencing symptoms re- Device Prescription lated to chronic conditions.96,97 Prescription of a supportive or assistive device can help Physical Activity to improve aerobic capacity in some older patients. Oxy- gen therapy can help improve oxygen delivery in patients Another strategy for improving aerobic capacity and who have decreased arterial oxygen saturation. Al- health is to increase total energy expended during daily though physical therapists do not prescribe supplemen- physical activity. Physical activity includes both struc- tal oxygen, they often identify patients who would ben- tured exercise and nonstructured lifestyle activities efit from it and help patients optimize its use especially (physical activity not performed with the intention during activity. Many types of assistive devices may help to constitute a structured period of exercise). Use of to improve function and minimize disability in patients pedometers to promote increased physical activity with impaired aerobic capacity. For example, four- through walking has gained popularity because they are wheeled walkers with a seat (“Rollators”) are often used inexpensive and easy to use. Research studies have