Important theorizing in dementia research suggests the crucial role of social psychological factors in determining the level and expression of functional ability . The current study expands on these ideas by showing how the social context of household care mediates individual expressions of functional decline. Studies of social support around decision-making provide a useful foundation for a social process understanding of functional decline. This research examines how family members manage the affected individual’s decisions around medical treatment, end-of-life care, finances, and moves to long-term care facilities . An important dimension of the work characterizes the level of involvement elders and caregivers have in the decision-making process and the effects that different levels of involvement have on caregivers and elders individually and on their relationship. Findings highlight the challenges families face in executing decisions that correspond with the authentic preferences of affected individuals, but do not explicate how management of the decision-making process relates to avoiding risks caused by waning functional ability more generally. Thus, this area of work examines social support around cognitive decline through a narrow strip of behavior that provides limited insight into the larger process occurring across the individual’s natural range of activities. A second, smaller collection of studies offer modest insights into the larger process, especially around familial attempts to help the individual maintain ability-based dimensions of personal and social identities. Linking identity to activity participation, a number of studies, for instance, tie the effort of promoting autonomy to the concern with preserving or protecting the individual’s identity . Perry and O’Connor , for instance, danish trolley describe how caregivers decrease the complexity of the elder’s old activities so that they may still engage in them to some extent and preserve a sense of self identity. In complementary work, Clare identifies the coping strategies that family members and affected individuals collaboratively constructed in order to maintain normality and protect a sense of self.

Relevant to the current study, she highlights how family members “struggled” to find the balance between constructively helping and “taking over in an undermining way” . Finally, the current piece also builds on work explaining how family members engage in “cognitive support work” in order to minimize confusion and disorientation in the elder’s social interactions . This piece identifies the lay health practices that family members develop to minimize the effects of symptoms on everyday life. Whereas that work focuses on attempts to lessen confusion so that the individual can effectively maintain independent lines of conduct, the current piece focuses on attempts to manage involvement in everyday activities to lessen risk of injury to self and others. While the literature offer insights into social support around ability decline, researchers still know little about how family members manage decline in an elder’s natural range of daily activities—such as cooking, driving, shopping, and bathing—over time. Though researchers have developed numerous interventions designed to increase functional autonomy at home , there is little research elucidating how families navigate functional decline within the social context of their own households. This work advances the study of functional decline in dementia by revealing how family members become autonomy management practitioners who develop their own logics of support.This is a three-wave retrospective interview study with individuals who provide caregiving to relatives diagnosed with Alzheimer’s disease. In total, we conducted 45 interviews with 15 individuals over the course of 2 years . We recruited this non-probability sample through the Alzheimer’s Disease Center at the University of California, Davis following IRB approval. Among these participants, 12 were adult-children and 3 were spouses of the affected individual. We utilized a pool of Latina caregivers assembled for a related project investigating the effects of social capital on dementia caregiving.

When the study began, participants ranged in age from 44 to 77 and care recipients ranged in age from 67 to 96. Time since diagnosis ranged from 1 to 12 years with a mean of 3.73 years. Individuals with Alzheimer’s disease about whom participants reported displayed varying degrees of disease advancement at the start of the study. Twelve of the fifteen participants lived with the individual with dementia part time or full time . In these part time living arrangements, participants either stayed part of the week at the affected individual’s home or switched off with a sibling in hosting the individual weekly.The findings were derived from data collected through three waves of in-depth, open-ended interviewing conducted over the course of 2 years. We interviewed participants three times each at six month intervals. In the first interview, we focused our questions on the period from the first signs of the disease until the moment of the interview. In the subsequent two interviews, we focused on the period since the last interview. Interviews typically lasted between an hour-and-a-half and two hours each. They were conducted by phone or in person and in Spanish or English depending on the participant’s preferences. In total, 29 were conducted by phone and 16 were conducted in person. All interviews were digitally recorded and then transcribed verbatim. Each participant received a $40 gift card for participating in each interview. We began the interview process with the understanding that current research does not explain satisfactorily how families deal with the household risks that occur due to cognitive decline. We conducted interviews using an interview guide that we constructed before each wave of interviewing. We designed each interview guide to accomplish two main tasks: to understand the nature of the participant’s relationship to the affected individual over time and to document the participant’s concrete behaviors around the elder’s daily activities over time. We accomplished the first task by asking questions about living arrangements, amount of time spent together, and the types of activities that they engaged in together.

To complete the second task, we asked questions about the participant’s perception of the affected individual’s abilities in his or her common daily activities over time and about the participant’s behaviors around the elder during these activity involvements. We asked participants to describe the step-by-step details of how specific events and situations had occurred in their households and discouraged participants from speaking in generalizations and abstractions . Because trust is a crucial interpersonal achievement when seeking to gain insight into a stigmatized health condition like Alzheimer’s, we made rapport-building a cornerstone of our research design. First, we used a multi-wave interview protocol to increase the likelihood of building trust and facilitating participant disclosure of emotionally-difficult occurrences . Second, we selected an interviewer that shared a racial-ethnic background and language fluency with our participant sample and relied on her to conduct each interview.The analysis consisted of a modified grounded theory procedure that entailed engaging directly with the research literature related to functional decline during the coding process . Each author engaged in line-byline coding of the complete set of interview transcripts unassisted by qualitative coding software. This approach helped us identify a common substantive interest and establish inter-coder reliability. The topic of autonomy management around functional decline emerged out of the first round of coding. Through this phase of analysis we learned that family members exhibited substantial concern with the risks of household injury and with how much influence they should exert over their mom, dad, or spouse in everyday activities.In a subsequent phase of coding, we identified the techniques and management practices that family members used to influence the elder’s activity involvements and placed them in typological categories. In a final phase of analysis, we examined these practices for discernible trends and turning points from the onset of the disease until the final interview. To facilitate this process, vertical aeroponic tower garden we developed summary timelines that visually depicted each participant’s shifts in management behavior over time. We compared these timelines and identified the common stages between them. This analytic technique revealed that participants began shifting from collaborative to unilateral autonomy management techniques when they detected the elder’s waning deficit awareness. The research team met regularly to discuss this ongoing analytic work and to resolve interpretive discrepancies through a consensus building process. Interpretive discrepancies typically occurred when determining if a family member’s response to an elder’s behavior fit within a category we had previously identified.The findings show that family members managed the elder’s involvement in daily activities across three stages of support: a collaborative, transition, and unilateral stage. The collaborative stage began early on in the disease trajectory when elders drew on family members for support in pursuing their decades-old activities. Support entered a transition period when family members began to perceive that the elder was exhibiting diminishing deficit awareness with a corresponding increase in risk of self-harm around everyday activities.

With a loss of confidence in the elder’s ability to regulate his or her activities to avoid these risks, family members employed unilateral practices to manage the elder’s autonomy around his or her activity involvements. In sum, all participants had at least entered the transition period and five had entered strictly into the unilateral stage of support.Family members reported that as elders lost cognitive ability, interest in decades-old activities and routines did not wane substantially. A majority of elders from this study’s sample continued to display pre-symptomatic activity preferences, sometimes for many years after diagnosis. One man, for instance, continued to drive his truck around an adjacent orchard and frequently expressed a desire to drive it in the nearby town as he had done for many decades even though he had gotten lost a number of times in recent months and had a minor accident. A woman continued to prepare food in her kitchen even though her creations were seen as sometimes un-edible by her family members. Another woman took regular walks to the grocery store though she frequently showed signs of confusion in everyday tasks and her daughter had taken to monitoring her walks from the front yard. These cases conform to a larger pattern of family member reports indicating that as mental acuity declined for elders, desire to engage in familiar activities largely remained.Early on in the disease trajectory, family members reported that elders exhibited awareness of their own ability decline through direct acknowledgment of their deficits or indirectly through their efforts to work collaboratively to avoid the problems they could cause. One family member noted that her mother showed awareness of her cognitive decline by drawing on a light bulb as a metaphor for describing her intermittent cognitive failings.This study charts the way families attempted to manage an individual’s growing incompetence in daily activities across the disease trajectory. It shows the role family members have in shaping the form that functional decline takes and thus, makes the larger point that dementia’s symptoms do not have a pure form that exists outside of social context. Rather, dementia’s expression as a disease entity always takes shape within a particular social context that constrains individuals to see it in a particular light and respond to it in particular ways. Early on in the disease progression, elders continued to seek engagement in decades-old activity preferences despite growing impairment . At this stage, elders were generally perceived as having awareness of their growing deficits, working collaboratively with family members to maintain functional ability in certain activities. As time passed, family members began to notice the elder’s declining awareness of these deficits. Through lay awareness tests and deliberation with other family members, they determined that the elder sometimes reverted back to a pre-disease conception of his/her own abilities and sought to engage in activities that he or she could no longer manage independently. Perception of declining deficit awareness by family members acted as a key turning point in how they related to elders and managed the disease, spurring them to modify their conception of the elder as a self-directed agent and develop a greater vigilance around the elder’s activity choices. Family members developed their own idiosyncratic techniques that assisted and restricted the elder’s autonomy to minimize risks. We describe the effort to use these techniques as autonomy management work. Within the larger effort to manage symptoms, family members treated autonomy management work as a last line of defense against the symptoms of declining competence and deficit awareness. When these symptoms occurred despite using some combination of pharmacological and lay efforts to manage them, family members relied on autonomy management techniques to minimize the dangerous impact that they could have. In this way, autonomy management techniques complemented other symptom management measures, providing a buffer between elders and unsafe activities when symptom control proved impossible.