Abstract
The stress of providing long-term care to a relative with a cognitive impairment (eg, dementia) is often compounded by the difficulties encountered when making care decisions on behalf of the individual (ie, care receiver). This article describes research within culturally diverse families that explores decision making in everyday care from the perspective of both the caregiver and the care receiver. Our findings suggest that persons with cognitive impairments are able to express preferences for care, that family caregivers do not always understand their relative's preferences for care, and that there are more similarities than differences across culturally diverse families.
Your {questions} helped me a lot. I haven't thought about myself in awhile. I thought I had lost it.
55-year-old man with vascular dementia
The whole thing has been hard to describe. It's amazing when I think about the many years with all the fun and games, all the wonderful experiences I've had, and I don't know how much is left. No one talks about what is in the future. I would like someone to tell me what's in store.
79-year-old man with Alzheimer's disease
Early diagnosis of Alzheimer's disease and related dementias is allowing persons with cognitive impairment to talk about the disease, discuss their preferences for daily living with family members, and make care decisions before the ability to communicate significantly deteriorates. Despite the trend toward earlier diagnosis, there is very little research about the interaction between the person with cognitive impairment (ie, the care receiver) and the family caregiver in general, and few studies exist that examine the decision-making process for everyday care when cognitive impairment is present. Examples of everyday care situations include when to eat, whether to use support services (eg, in-home care, adult day services), or when to accept care from family members.
Exploration of the decision-making process from the perspective of both the person with cognitive impairment and the family caregiver is a necessary component in long-term care research and practice. Understanding the dynamic interaction of the decision-making process in everyday care, and identifying the preferences and choices of the person with cognitive impairment are critical factors in developing strategies in consumer direction and empowering persons with dementia.
Loss of cognitive and functional abilities affects the individual and his or her family in profound ways. For example, balancing the needs and preferences of a person with cognitive impairment with the needs and preferences of the family caregiver can be exceedingly complex. Often at great personal sacrifice, families strive to keep a loved one at home, avoiding institutional care at all costs. One of the most difficult problems a family caregiver faces is making decisions 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 with her care because of my increasing exhaustion?" There are no simple answers to these questions. In practice, it is often difficult to separate the needs, preferences, and best interests of the person with dementia from the needs, preferences, and best interests of the family. 1
Given the trend toward earlier diagnosis as well as greater public awareness of memory loss and dementia, the focus in both dementia care and research is shifting to include the person with dementia in decision making. 2-4 Maintaining independence and control in decision making through consumer-directed care are issues of utmost concern to persons with disabilities and frail elders. The concept of consumer direction in home and community care is based on the key elements of choice and control, and the philosophy that informed consumers make choices about the services they receive. 5 While the consumer should be presumed competent to make choices, "the presumption of competence also means that consumer's decision to delegate responsibility for directing certain aspects of service provision to other persons can be a consumer-directed choice, under the right circumstances: for example, where a person with cognitive impairment has a family member acting as a consumer on his or her behalf." 5 Indeed, our own earlier work suggests that persons with mild-to-moderate cognitive impairment are able to answer questions about preferences, choices, their own demographics, as well as their own involvement in daily living with a high degree of accuracy and reliability. 6 Better understanding of the preferences of persons with cognitive impairment regarding practical, everyday care is essential to enhance the autonomy of these individuals and improve their quality of life.
It is now widely accepted that families provide the majority of care to persons with cognitive impairment. The family's role in long-term care is complex when the person being cared for has cognitive impairment because, frequently, the family becomes both the decision maker and the service provider. 7 Family members provide an important link to lifestyle preferences, particularly in situations where older persons are no longer capable of making their own decisions. 8 Research has consistently shown that older persons prefer having family members make health-related decisions for them if they are no longer able to make decisions on their own. 9,10 Moreover, in practice, health and social service practitioners also often rely on family members for an assessment of the care receiver to make daily care decisions. 11,12
Etzioni 13 contends that most choices in daily life "are made on the basis of emotional involvement and value commitments." These emotional and value-based factors are critical in examining decision making. As well, some researchers suggest that family surrogate decision-making when properly used, can function as an extension of an older person's autonomy in that "individual autonomy, fully understood, is interdependent with family autonomy." 10
Although researchers have examined at length caregiving practices and consequences for families, little is known about the potentially stressful nature of making care-related decisions and the context in which these decisions are made. 14 Recent research suggests that when caregivers are not satisfied with the decision-making processes in the family, they are more likely to experience depression. 15 Smerglia and Deimling 14 suggest that in the case of spouse caregivers, decisions may be "merely an extension of lifelong marital processes." For adult children, however, decision making about care for a parent may represent a "reversal of lifelong patterns of responsibility, a change that can produce tension and conflict." 14
A major shortcoming of many of the studies described above is that the findings are based on predominantly white and/or European American caregiving samples. Limited research suggests that cultural and/or socioeconomic differences exist in the areas of mental health outcomes, chronic diseases, functional impairments, service use patterns, support from family and friends, and reliance on emergency room use. 16-21 To date, few studies have explored care-related decision-making within caregiver-care receiver dyads. Moreover, no studies have examined these issues across samples that are culturally different.
This study, undertaken in 2 diverse communities, examines decision making for persons with cognitive impairment and their family caregivers. This article is the third in a series to report on findings from a larger study of family caregiver and care receiver dyads that examined choice, decision making, values, preferences, and practices in everyday care for community-dwelling persons with cognitive impairment and their family caregivers. In the present study we examine the process of decision making about everyday care focusing on cultural differences. We ask the following 4 research questions: (1) Are persons with mild-to-moderate cognitive impairment, regardless of cultural background, able to answer questions about their preferences for their own daily care? (2) Who do persons with mild-to-moderate cognitive impairment choose to make decisions for themselves if they are unable to do so? (3) Have the care receivers discussed their wishes for daily care with their family caregivers, and do family caregivers know and agree with their relative's wishes for daily care? and (4) Whose best interests do caregivers and care receivers consider when making daily care decisions?