INDEPENDENT CHOICES: A National Symposium on Consumer-Direction and Self-Determination for the Elderly and Persons with Disabilities. Making Hard Choices: Respecting Both Voices

Lynn Friss Feinberg, MSW, Principal Investigator
Family Caregiver Alliance

Carol J. Whitlach, PhD, Co-Principal Investigator
Shandra Tucke, MS, Project Coordinator
The Benjamin Rose Institute
May 2000

EXECUTIVE SUMMARY

Families play a central role in both the decision making and delivery of long-term care to adults with cognitive impairment (e.g., Alzheimer’s disease, stroke, Parkinson’s disease, traumatic brain injury). Losses of cognitive and functional abilities affect the individual and his or her family in profound ways. One of the most difficult problems a family caregiver faces is making decisions in “everyday” long-term care at home for a loved one whose capacity for planning and judgment may be impaired. Often conflicting factors must be weighed: “What is my wife’s potential risk or harm to herself or others?” “How do I weigh her wish not to let anyone in the house to help out, with my need for help because of my increasing exhaustion?” Deciding when to bathe, what to wear, whether to purchase and use support services (e.g., adult day services), or when to accept care from family members are examples of everyday care situations. In practice, it is oftentimes difficult to separate the needs, preferences and best interests of the person with dementia from the needs, preferences and best interests of the family.

This research explored choice and decision making in everyday care for persons with cognitive impairment and their family caregivers. This study differs from previous research on decision making by its focus on: (1) a community-dwelling, cognitively impaired population; (2) the dyad, i.e., the person with cognitive impairment and the family caregiver; and 3) the exploration of values, preferences and decision making for daily care. Given the aging of the population, the concomitant increase in the number of persons with cognitive impairment, the high costs of care, and the trend towards earlier diagnosis and new treatments to delay decline of dementing illnesses, understanding both voices--the person with cognitive impairment and the family caregiver--will advance the state-of-the-art in practice, research and public policy.

Method:

Respondents were 51 persons with cognitive impairment and 51 family caregivers. The respondent pairs or dyads (i.e., adult with cognitive impairment and the family caregiver) were recruited from Family Caregiver Alliance’s (FCA) client lists in the San Francisco Bay Area and outreach to local agencies. To be eligible, family caregivers had to be: (1) the spouse or adult child of the person with cognitive impairment; and (2) the primary caregiver. The person with cognitive impairment (i.e., the care receiver) had to meet the following inclusion criteria: (1) have a confirmed diagnosis from a physician of an adult-onset brain disease/disorder; (2) be living at home (i.e., living in the community rather than an institutional setting); and (3) be mildly to moderately cognitively impaired with scores between 13 to 26 as measured by the Folstein Mini-Mental State Exam (MMSE).

Three in-depth, in-person interviews were conducted per dyad. Experienced and trained research staff interviewed the caregiver and care receiver separately. The interviewing sequence and process was as follows: the person with cognitive impairment was interviewed first. Within one week, the family caregiver was interviewed and the person with cognitive impairment was interviewed a second time. Data collection began in July, 1998 for 10 months through April, 1999 to achieve a final sample of 51 dyads (3 interviews per dyad or 153 total completed interviews).

Sample:

Caregivers (n = 51) were predominantly wives (56.9%) and daughters or daughters in-law (21.5%), followed by husbands (11.8%) and sons (9.8%). Thus, more than two-thirds (68.7%) were spouses and one-third (31.3%) were adult children caring for a parent or parent-in-law. Caregivers were on average 63.5 years (SD = 14.6, range 30-90 years) although over half (51%) were at least 65 years of age or older, and most likely to be female (78.4%). Most caregivers were white (78.4%), married (80.4%) and about one-third were in the labor force employed either full-time (17.6%) or part-time (15.7%). Overall, the educational level of the family caregivers was high, with the large majority having at least some college education (84.3%). Most caregivers (23.5%) reported annual family income between $40,000 and $49,000 a year (1997 dollars). On average caregivers had been caring for their relatives for 3.1 years (SD = 3.4, range 1-23 years) and provided 80 hours of care per week (SD= 50.8, range 7-168 hours).

Care receivers (n = 51) were most typically husbands (58.8%), followed by mothers or mothers-in-law (21.5%), fathers (9.8%) and wives (9.8%). The average age of the care receivers was 75.6 years (SD = 10.0, range 39-89 years) although nearly nine out of ten (88%) were at least 65 years of age. The majority of care receivers were male (68.7%) and married (78.4%). The most commonly diagnosed brain disease/disorder was Alzheimer’s disease (51%) followed by other dementias such as Frontal Lobe, Lewy Body or Vascular dementia (13.7%), stroke (11.8%), non-specific dementia (9.8%), Parkinson’s disease (7.8%), non-degenerative brain disorders such as Anoxia (3.9%) and traumatic brain injury (2%). The average MMSE score of care receivers was 20.8 (SD = 4.06, range 13-26), with two-thirds (67%) considered mildly cognitively impaired (MMSE scores 20-26) and one-third (33%) moderately cognitively impaired (MMSE scores 13-19). Care receivers also had a high educational level with most (68.6%) having at least some college education.

Key Findings:

Are persons with cognitive impairment able to communicate their preferences for the care they are currently receiving or will need in the future?

  • Persons with cognitive impairment were able to answer questions about demographics, general preferences, and involvement in everyday care with a high degree of reliability (i.e., at two points in time) and validity (i.e., accuracy).

  • Similar results were found when care receivers were split into three groups based on high, medium and low MMSE scores with very few exceptions.

What is the decision-making process between adults with cognitive impairment and their family caregivers?

  • Care receivers were able to choose a person, most commonly the family caregiver, to make a variety of decisions for them should they no longer be able to make decisions for themselves in six areas: health care, finances, personal care, social activities, living arrangements, and the possibility of living in a nursing home.

  • Care receivers reported discussing their daily care wishes more than their nursing home wishes with their family caregivers, yet also felt their caregivers knew their wishes for daily and nursing home care equally well.

  • Caregivers felt they had discussed the care receiver’s wishes equally for both daily and nursing home care, yet also felt they knew the care receiver’s wishes for daily care better.

How does the availability and use of information and services, as well as the quality and cost of care, facilitate and/or impede family decision making related to the cognitively impaired adults’ everyday care?

  • The majority of the caregivers (84.3%) reported having used some type of paid service provider since the care receiver had been diagnosed with memory problems.

  • The three services most utilized by caregivers were information about the care receiver’s illness (65%), caregiver support groups (55%), and help with housework, shopping, laundry or cooking (53%). The three least utilized services were the Internet (14%), education classes for the caregiver (20%), and help with managing financial or legal matters (22%).

  • Service availability, affordability, and satisfaction were unrelated to the amount of discussion between the caregiver and care receiver about daily care wishes. However, the more satisfied a caregiver was with formal service usage, the less likely s/he was to have discussed nursing home care with care receiver.

  • Overall, family caregivers reported low levels of financial strain and believed they had enough money at the present time to cover the costs of care. However, more than one-third (38%) of the caregivers either said they had “just enough” or “not enough” money to make ends meet at the end of the month.

  • Care receivers with family caregivers who had higher financial strain reported feeling that their caregivers did not know their wishes for daily care.

  • The care receivers’ five top ranked values and preferences in aspects of daily life were related to the environment/safety and family caregiver issues: “Have a comfortable place to live” (Environment/Safety), “Have caregiver be the one to help out” (Family Caregiver issues), “Live in own home” (Environment/Safety), “Feel safe in home, even if it restricts activities” (Environment/Safety), and “Caregiver not put life on hold” (Family Caregiver Issues).

  • The majority of the persons with cognitive impairment said that it was very important to them to remain at home (78%) and not to live in a nursing home (73%).

  • Caregivers were fairly inaccurate in their perceptions of the importance of the care receiver’s values and preferences. Significant differences were found for 20 of the 36 values and preferences. Typically when there were significant differences, the care receiver placed greater importance on the item than the caregiver thought they did. For example, persons with cognitive impairment felt that “feel safe in home, even if it restricts activities” was significantly more important than caregivers felt it was to the care receiver.

  • The highest ranked values and preferences subscale for both the care receiver and the caregiver was Family Caregiver Issues, followed by Environment/Safety.

  • Care receivers and caregivers were congruent in their responses that the domain of Environment/Social Interactions (e.g., have a comfortable place to live, be with family or friends) was most important and significantly more important than the domain of Autonomy/Self Identity (e.g., do things for self, maintain dignity).

Is there congruence between the preferences of the adult with cognitive impairment and the needs and practices of the caregiver?

  • Care receivers were asked who they would like to help them (i.e.,family/friends, service providers, no preference) with specific tasks (i.e., shopping and cooking, laundry and housecleaning, getting up and dressing, bathing and toilet care). For all tasks, the care receivers preferred help from family/friends to paid services.

  • Caregivers were asked whether or not they were using paid help for the specific tasks (i.e., shopping and cooking). For each task, the majority of the caregivers’ needs and practices were congruent with the care receivers’ preferences. Caregivers had not used services when the care receiver preferred help from family/friends. Similarly, the caregivers had used services available in the community when the care receivers preferred help from service providers.

  • There was no association between how much the dyad had discussed the care receiver’s wishes for daily care and the level of congruence between the care receiver’s preferences and the caregiver’s needs and practices.

When there is a lack of congruence, whose wishes prevail and how does this influence service use patterns?

  • Care receivers and caregivers were asked to rate the importance of their own and their relative’s best interests when thinking about making daily care decisions in the future. Both the person with cognitive impairment and the family caregiver felt it was more important to consider the best interests of the other member of the dyad above their own best interests.

  • When all the questions about “best interests” were combined, however, the best interests of the person with cognitive impairment was considered more important than the best interests of the family caregiver.

  • The more important the care receiver considered his/her own best interests, the better the caregiver knew his/her wishes for daily care. This was particularly apparent in dyads with adult child caregivers. For these dyads, the more importance the care receiver placed on his/her own best interests, the more the adult child knew about their parent’s wishes for daily care.

  • The more a dyad disagreed on whether or not to use support services, the fewer services the caregiver actually used.

Discussion:

The most salient findings of this study indicate that persons with mild to moderate cognitive impairment are able to: (1) state consistent preferences and choices; (2) provide valid responses to questions about demographics and their own involvement in everyday care; (3) participate in care decisions; and (4) express life long values and wishes regarding care they are currently receiving or will need in the future.

Many of the questions asked of the persons with cognitive impairment requested that they provide the name of the specific person(s) they would like to make decisions for them if they were no longer able in the areas of health care, finances, personal care, social activities, living arrangements, and the possibility of living in a nursing home. The care receivers overwhelmingly preferred to pass decision-making responsibilities on to family members. In almost all cases (93%), the identified person was the family caregiver or another family member.

Results suggest that caregivers and care receivers are discussing the care receiver’s wishes for both daily and nursing home care. However, there are more discussions about daily care, likely because these families are dealing with the day-to-day challenges of caring for a person with mild to moderate cognitive impairment. But as our findings indicate, more frequent discussions do not necessarily translate into a better understanding of or agreement with the care receiver’s preferences for all types of everyday care.

Service availability, affordability and satisfaction with service use were found to be unrelated to the amount of discussion between the caregiver and care receiver about daily care wishes. However, the more satisfied a caregiver was with home and community-based services, the less likely s/he was to have discussed nursing home care with the care receiver. Conversely, if caregivers were unsatisfied with services, they appeared more likely to move to discussions about nursing home placement. Thus, our findings support the importance of an accessible, affordable and quality home and community-based system to meet the long-term care needs of people with chronic degenerative diseases.

Study results reveal the potentially negative effects of financial strain on the dyad’s level of congruence on both knowledge of and agreement with the care receiver’s daily care wishes. Although caregivers reported low levels of financial strain overall and believed they had enough money currently to cover the cost of care, those who experienced higher financial strain were less likely to know the care receiver’s wishes for daily care. Families experiencing the multiple and long-term stressors of caregiving may find that discussions about the care receiver’s daily care wishes are not a priority. Instead, they are worrying about how they are going to get through each day. Care receivers who feel their caregiver is experiencing financial strain may not want to “make matters worse” or more stressful for the caregiver so they do not make their preferences known. Unfortunately, if these issues are not discussed then the dyad will not be able to do advance planning, which, in the long run, could cause increased strain and impoverishment for the family.

Lastly, in this study the MMSE was not found to be a sensitive measure of competency relating to decision making. While the MMSE is widely used to screen for cognitive function, it does not determine decisional capacity. In discussing the interviewing experience with the research interviewers, they felt that some of the care receivers who screened out on the MMSE because of low scores would have been able to participate in this study and express valid and consistent preferences.

Practice Implications:

The study results suggest that persons with early to moderate cognitive impairment may well possess the capacity to express daily preferences for care, and should be encouraged to discuss their values and preferences with their family caregiver. In turn, this would assist family members by helping them to better understand the wishes and preferences of their loved ones earlier in the disease process before they, the family caregivers, inevitably must make difficult and often agonizing day-to-day long-term care decisions.

The findings suggest the need for incorporating a values assessment as part of interventions to improve education and enhance communication between the care receiver and the family caregiver around the issues of daily care preferences at home, as well as residential and nursing home settings. Caregivers do not fully understand the care preferences of their relative and often have inaccurate perceptions of the care receiver’s preferences and choices for everyday care. Thus, it may be helpful in counseling sessions, for example, to enhance the family’s decision-making skills by identifying and encouraging early conversations about the care receivers’ values and preferences for current and future daily living which are mutually acceptable to the family caregiver.

Our findings on values and preferences suggest that the primacy of personal autonomy may not be of critical importance to the person with cognitive impairment. Rather, the reciprocal nature of daily care decisions fosters interdependence within the family. This view of autonomy acknowledges a consumer-directed focus whereby the care receiver decides who they want to make and carry out activities in their place.

The assessment of values and care preferences and discussions about decision making are, practically speaking, difficult and challenging for families to undertake. Yet, ignoring the decision-making process between the caregiver and care receiver, and postponing discussions about the values and preferences of the person with cognitive impairment could have negative consequences for both members of the dyad over time. For many family members, knowing their loved ones’ wishes for daily care could reduce the strain in developing and implementing a plan for future long-term care services.

Policy Implications:

The findings of this study support the policy direction of utilizing a family systems approach whereby the person with cognitive impairment and the family caregiver are considered legitimate “consumers” of long-term care. A family systems approach would expand current practice by assessing: (1) the care receiver’s values and preferences for everyday care, rather than relying solely on information from the “proxy” or “surrogate,” who typically, is the family caregiver; and (2) the family caregiver’s situation, well-being, and need for targeted support services (e.g., respite, counseling).

Long-term care systems development, therefore, should incorporate the concept of family caregiving, rather than focusing exclusively on the care receiver when cognitive impairment is an issue. Few programs adequately address this critical policy area of supporting family caregivers to maintain their own quality of life.

Lastly, in this study, the person with cognitive impairment or “consumer” was able to answer questions that reflected an ability to delegate responsibility for directing aspects of care when he or she is no longer able to do so. In other words, the care receiver was able to make a consumer-directed choice to have a family member acting as a “consumer” on his or her behalf. This is particularly important in home and community-based programs where the goal of practitioners, for example, may be to maintain the well-being of the family caregiver so that they can continue to provide care to the person with cognitive impairment and honor the care receiver’s preferences to live in their own home.

Conclusion:

This study aimed to recognize the roles of both persons with cognitive impairment and their family caregivers with regard to everyday care preferences and decisions. Our research adds to the growing body of evidence that persons with early to moderate cognitive impairment are able to articulate values, preferences and choices for themselves, and be valid and reliable in their responses.

The challenge is to educate policymakers, practitioners and researchers to take into account the views and preferences of the person with cognitive impairment and the needs and situation of the family caregiver. How to balance divergent perspectives will continue to be a challenge for those who work with persons with cognitive impairment and their family caregivers. By recognizing and respecting both voices--the care receiver and caregiver--we can enhance future research and practice, foster the development of consumer direction in long-term care and advance public policy to support caregiving families.

Increased understanding of the preferences of the person with cognitive impairment will improve the decision-making process, lead to more informed decisions, and reduce the strain on family caregivers and associated health costs. It is, after all, family caregivers, who are today and will continue to be in the foreseeable future, the major providers of long-term care and who will, ultimately, be left with the experience of implementing these challenging and difficult everyday care decisions.

The report is available from Family Caregiver Alliance, 690 Market Street, Suite 600, San Francisco, CA 94104, Tel: 415-434-3388, Fax: 415-434-3508, E-mail: info@caregiver.org, Web site: http://www.caregiver.org/publicationsC.html.