Limiting and Promoting Resident Self-Care in Assisted Living

Abstract

Objectives

Assisted living (AL) residents often manage multiple chronic conditions, functional and/or cognitive decline along with their individual needs and preferences for a full life. Although residents participate in their own care, little is known about their self-care activities and how to support them. This analysis focuses on residents’ self-care and theorizing the dynamic, socially embedded process of negotiating self-care.

Methods

We analyze data from a grounded theory study informed by the Convoys of Care model. Participants included 50 focal residents and 169 paid and unpaid convoy members in eight AL homes; each resident convoy was followed up for 2 years. Data collection included participant observation, interviews, and resident record review.

Results

To the extent possible, most AL residents were involved in self-care related to activities of daily living, health promotion, and social, emotional, and mental well-being. Residents and care partners engaged in a dynamic process of limiting and promoting self-care activities. Multiple factors influenced self-care, including residents’ past self-care behaviors, caregiver fear and availability, and the availability of services and supports.

Discussion

Strategies for promoting self-care must involve residents and care partners and include convoy education in collaborative goal-setting, prioritizing care that supports the goals, and putting resources in place to support goal achievement.

As the population ages, finding ways to slow functional decline, support aging in place, and avoid or delay nursing home placement among older adults is critical (Wattmo et al., 2010; Wiles et al., 2011). Older frail individuals living in home- and community-based settings deal with a myriad of challenges associated with functional decline including managing multiple chronic health conditions and discrete health events and organizing the dynamic constellations of unpaid and paid care partners (Osborn et al., 2014; Wolff et al., 2016). In the midst of challenges, frail older adults seek to maximize their quality of life while attempting to meet their care needs. Understanding the role older adults play in their own care, or self-care, is critical to building supports that empower and enable them to live a full life while also avoiding or delaying institutional care.

Assisted living (AL), in the United States, generally offers access to 24-h oversight, housekeeping, meals, social activities, and personal care (Ball & Perkins, 2010). More than half of the residents in AL are older than 85 years, more than half need help with bathing or walking, and at least 42% have dementia including Alzheimer’s disease. AL residents tend to be non-Hispanic White (81%) and female (71%). Due to regulatory changes over the last 20 years and a preference of many older adults to live in the least restrictive environment, acuity levels of residents in AL have risen, leading to increased care complexity, further exacerbated by growing numbers of residents with dementia (Harris-Kojetin et al., 2019). AL communities are aided in resident care by unpaid, mostly family, care partners, and a constellation of external health care providers (Ball et al., 2005). Studying self-care in the context of AL is useful, as it represents a growing sector that has increasingly complex care arrangements and sits squarely at the intersection of traditional institution-based, medically focused long-term care and a community-based social model of care, which is generally preferred by older adults.

Self-care refers to the ways that individuals take care of themselves, including activities related to daily living, health promotion, and management of health conditions (Ball et al., 2005). Self-care can be complicated for those, including AL residents, who are managing multiple chronic conditions. Management requires monitoring symptoms and adhering to medical recommendations and treatments as well as lifestyle changes in order to slow the progression of the disease and improve or maintain quality of life (Bayliss et al., 2007, 2014). Adherence to medical recommendations and lifestyle changes are associated with decreased symptom burden, decreased functional disability, and lower health care costs (Osterberg & Blaschke, 2005). However, in practice, many people do not always adhere to medical recommendations (DiMatteo, 2004). Furthermore, self-care is not strictly related to physical health or functional status. One’s social, emotional, and mental well-being plays an important role in the quality of life.

Individual-level barriers to self-care have been more widely studied and include interconnected factors such as mental health problems, lack of support, low self-efficacy, poor communication between health care providers and older adults, limited financial resources, and the burden of multiple chronic conditions (Bayliss et al., 2007; Jerant et al., 2005; Loeb et al., 2016). Typically, depression and anxiety are common with people with multiple chronic conditions; both can negatively affect diet, education, and medication management (Bayliss et al., 2003; DiMatteo et al., 2000). As people receive more care from others, their own self-care may decrease (Berman & Iris, 1998). Finally, how much self-care one performed in the past affects how much and the type of self-care they continue to perform (Miller & Iris, 2002). Attitudes and behaviors regarding self-care tend to coincide with identity; whether one identifies as healthy or as a person who takes care of themselves (Dill et al., 1995; Miller & Iris, 2002). Comorbid conditions can also hinder making lifestyle changes because the recommendations for different conditions are often incompatible. Furthermore, having adequate financial resources and social support positively affects self-efficacy and positive health behaviors (Callaghan, 2005; Gallant, 2003; Graven & Grant, 2014).

In addition to individual-level factors, social, economic, and environmental factors such as social support, care resources, and location-based resources can all affect one’s self-care. Much of the literature on self-care for older adults focuses on their ability to adhere to medical recommendations, treatments and medication regimens (Bayliss et al., 2007, 2016; Jerant et al., 2005) or health promotion activities, and self-management of chronic disease (Callaghan, 2005; Gallant, 2003; Graven & Grant, 2014; Mingo et al., 2013). The latter literature addresses the importance of both self-efficacy and social support for older adults in managing health-related behaviors and symptoms of chronic disease but is limited in its understanding of how embedded self-care is in social relationships and contexts. Most of these studies acknowledge only two parties—the individual and health care providers.

The gap in the literature regarding the social and community embeddedness of care often ignores family and other unpaid care partners, residential care staff, and a constellation of others such as hospice, physical therapy, volunteers, coresidents, church members, and friends. As Anderson (1990) asserts, self-care should not just be about substitution where empowerment of the individual relieves pressure on the health care system, but where the embeddedness of the individual in social, economic, and historical conditions is understood. Furthermore, a nuanced understanding of self-care acknowledges the expertise of the individual related to their own lifetime of symptoms and promotes the older adult as a full partner in their own care. Self-care is about both independence and control where the individual takes responsibility for their health across a variety of dimensions such as the physical, mental, and spiritual (Kemp et al., 2013; Wilkinson & Whitehead, 2009).

The social embeddedness of care is exemplified in the convoys of care model. This model is informed by the convoy model of social relations (Antonucci et al., 2009), the life course perspective (Elder & Shanahan, 2006), feminist gerontology (Ward-Griffin & Marshall, 2003), the social ecological perspective (Moos, 1979), and rooted in a symbolic interactionist perspective (Strauss et al., 1963). Convoys of care are the evolving collection of individuals who provide formal and informal care to individuals with care needs. Convoys vary in size, composition, and function and are essential to how care is experienced and organized. Drawing on a social ecological framing, care convoys are nested in and influenced by broader social, economic, and political arrangements, regulatory contexts, and the community facility and individual-level factors which all shape the care (Kemp et al., 2013). In AL, care is shared among parties including the resident, informal caregivers, AL staff, and health care providers. Care happens in a context where home-level policies and practices, availability and accessibility of health care services and supports, and personal needs, preferences, and resources of both the informal caregiver(s) and the resident interact. The convoy and the multiple layers of influencing factors for resident self-care are central to resident health care, communication, and quality of life and are negotiated among actors with these heavy constraints of context (Kemp et al., 2018, 2019). This research extends the work of Kemp et al. that underscores the negotiated and dynamic process of convoy maneuvering—together, apart, and at odds—which aligns with three types of care networks identified in the data: cohesive, fragmented, and discordant. The three types are defined as follows: cohesive convoys are the most supportive, where care partners have clearly defined care goals, unified efforts, and negotiate the care process together; fragmented convoys have some consensus about goals but little communication or collaboration; discordant convoys lack agreement about care goals and convoy leadership is either absent, unclear, or contested. The purpose of this study was to use the Convoy of Care model to further conceptualize AL residents’ self-care activities and strategies in the context of resident, family, staff, and community factors.

Method

Data for this analysis were derived from the longitudinal qualitative study, “Convoys of Care: Developing Collaborative Care Partnerships in Assisted Living.” The overarching goal of the study was to learn how to support care convoys in AL in ways that promote residents’ ability to age in place with optimal resident and caregiver quality of life. The design involved collecting data for 2 years in eight AL communities purposively chosen to maximize variation on key dimensions such as size, urban/rural location, ownership, resident characteristics, fee structure, and presence or absence of a dementia care unit (DCU; Kemp et al., 2017). The Georgia State University Institutional Review Board approved the study. For confidentiality reasons, we use pseudonyms for sites and participants.

Sample

The sample of AL communities for this analysis includes (a) a family-owned AL in a rural setting, licensed for 11 residents (Hillside); (b) a family-owned AL situated in a small town with a separate DCU, licensed for 52 residents (Garden House); (c) a foundation-run home catering to a Jewish clientele in a suburban area, licensed for 46 residents (Feld Home); (d) a corporately owned home in an urban setting licensed for 74 residents and housing a largely African American population (Oakridge Manor), (e) a small urban personal care home licensed for three residents (Camelia’s Cottage), an urban AL licensed for 19 residents (Magnolia Manor), a suburban dementia-only AL/memory care licensed for 48 (Riverview Estates), and finally a small urban personal care home licensed for five residents (Thames Place).

We enrolled 50 residents and their corresponding convoy members, including 10 AL executive directors, 39 AL staff members, 29 care workers external to the AL community, and 91 unpaid, informal caregivers. Residents were chosen to maximize variation in convoy composition, functional status, and personal characteristics (e.g., age, marital status, and family ties). They ranged in age from 57 to 96 with a mean age of 82. The sample had good variability in terms of gender composition (58% female, 42% male), racial composition (30% African American, 68% White, European descent), and marital status (58% widowed, 14% married, 28% divorced or never married). Education reflected the higher socioeconomic status common in AL residents with 22% with graduate education, 32% with some college or a college degree, 40% with a high school education, and only 4% with less than high school education.

Data Collection Procedures

During data collection, a 5-year period, investigator-led teams of trained gerontology and sociology researchers conducted interviews, participant observation, and resident record review in each of the sites. This project utilized a large research team that includes five PhD investigators, a project manager, and a research associate in addition to 10 graduate research assistants. Four highly experienced qualitative researchers served as team leads who coordinated visits, reviewed fieldnotes and interviewing, resident and home profile writing, and later coding and analysis related to their homes and then in collaboration with the full team (for additional information see Kemp et al., 2017). We used the National Institutes of Health (2009) guidelines to assess residents’ ability to provide informed consent. For those unable to consent, we used proxy consent from legally authorized representatives and assent procedures (Black et al., 2010). In-depth interviews with residents and care convoy members asked about residents’ social and health history, care needs, self-care activities, and the composition and contributions of their care convoys. Convoy members were selected based on their involvement in and knowledge of resident care. These included unpaid informal caregivers, such as adult children, spouses, friends, and coresidents, as well as paid formal caregivers, such as AL staff, home health professionals, hospice workers, and primary care providers. Weekly visits generally ranged from 1 to 3, depending on home size, for a total of 1,561 visits and 2,738 h of observation resulting in more than 4,500 pages of fieldnotes. Resident record review provided information about health conditions, care plans, service agreements, treatment regimens, including medications and home health orders, and adverse events (see Table 1 for a summary).

Table 1.

Number and Type of Interview Participants and Observation Activities

	Total
Number of interviews	219
Focal residents	50
With cognitive impairment	29
Without cognitive impairment	21
Informal caregivers	91
Administrators	10
Facility direct care workers	39
External care workers	29
Number of field visits	1,561
Number of observation hours	3,738

Analysis

The analysis was iterative using a modified grounded theory methodology which is useful for building theory inductively (Corbin & Strauss, 2014). Coding was conducted in two phases, broad a priori subject codes organized according to the aims of the overall study and line-by-line coding within the subject codes that focused on identifying factors related to resident self-care. These secondary codes reflected the breadth of ways residents were involved in care in AL. Subject coding was conducted by all team members, including investigators and trained graduate assistants. Authors of the present study engaged in line-by-line coding of fieldnotes, interviews, and memos, within the a priori codes relevant to self-care. During axial coding, we identified factors that influenced each resident’s self-care across key dimensions (e.g., resident, convoy, facility, regulatory). We developed analysis charts that arrayed resident data by secondary codes (multilevel self-care influencing factors) to further our understanding of the contexts and conditions surrounding self-care using the convoy of care model to sensitize us to the multiple layers of influences on residents. Finally, we identified our core category, “limiting and promoting self-care,” which is central to the negotiation of resident self-care in AL. Data from interviews and fieldnotes were stored, coded, and managed using NVivo 10.

Results

Resident Self-Care

The majority of residents participated in self-care across three domains identified in data: (a) functional health comprised of activities of daily living (ADLs), which include bathing, dressing, ambulation, toileting, grooming, and eating and instrumental activities of daily living (IADLs), such as transportation, shopping, and money management and medication management; (b) health promotion activities, including participation in formal health care activities, monitoring key health information (i.e., blood sugar, weight), and following treatment regimens; and (c) social, emotional, and mental health care such as activity or support from family, spiritual or religious practice, and engaging in meaningful activities.

Most residents participated to some extent in ADLs but received help with the majority of IADLs. Residents ranged from being almost totally independent to making only basic choices about their care. One AL staff member commented on 84-year-old Mrs. Fox’s (Oakridge Manor) self-care independence saying,

She gives her own, self-medicates herself. She is capable of doing that. We do a self-assessment every six months, so she just got hers done last month, and she’s still good to administer her own medication. She does care for herself. We do go in there at night, however, and roll the back of her hair, but that’s about it.

At the other extreme, 94-year-old Mrs. Johnson (Garden House), with advanced dementia, participated little in her own care but directed staff in some areas. Her daughter explained:

I think she puts some of her makeup on, the little bit she wears. I mean, since she’s been back in memory care, they’re dressing her now … The staff did tell me she has opinions about what she wants to wear. If they bring out something, she can say “yes” or “no.” I’m glad she cares what she wants to wear.

Residents who could not perform activities independently could still participate to varying degrees using a variety of strategies to enhance self-care, including (a) collaborating—helping to complete and teaching others how to perform tasks; (b) managing—organizing care activities directly by making arrangements or indirectly through delegation; and (c) communicating and advocating—communicating preferences and priorities and any changes in physical, socioemotional, or mental health and related care needs. For example, 64-year-old Mrs. Lansing (Oakridge Manor) had a significant physical impairment, prohibiting her from completing most ADL tasks without assistance. Yet staff considered her to be one of the more independent residents because she tells them what she wants and how she wants things done. According to Sierra, a care worker, “Ms. Lansing is semi-independent. She wants you to know that she’s independent.”

Resident Factors

Overlaying physical health and functional status, resident factors such as identity, past behaviors, attitudes, beliefs, values, communication styles in addition to fear, depression, anxiety, and mood influenced self-care activities. For example, long-held eating habits influenced health promotion activities. Eighty-six-year-old Ms. Thorpe’s (Oakridge Manor) sister-in-law noted, “She takes good care of herself. She doesn’t put junk in her body. She insists that they give her a salad at every meal. She just doesn’t eat junk. She has always been like that.” Long-held attitudes and behaviors regarding food choices, exercise, medications, weight tracking, symptom monitoring (e.g., blood sugar, swelling), oral care, hygiene, and perceived appropriate style of dress/self-presentation (e.g., dinner jackets, make-up, hair) had a lasting influence on the amount and type of self-care the residents engage in or direct others to perform.

Communication beliefs, preferences, and styles also played an important role in self-care. Effective communication kept convoy members apprised of needs and preferences for care and of any changes in health status, function, and health indicators. For example, 83-year-old Mrs. Thompson (Garden House) had to advocate to take her medications at a time that worked for her. She preferred receiving her morning medication at night so she could leave it by her bedside to take it when she wakes up. Doing so helped to get the day started and get moving without waiting on the med tech. Some of the care staff would not accommodate her preference until she involved the executive director. Mrs. Thompson was willing and able to advocate for her care preferences and needs. The opposite was also seen. AL staff note that 90-year-old Ms. Finch (Feld House) believed that she was bothering staff when she asked for help. One staff member reported that after, Ms. Finch fell because she does not want to bother others for help.

Health knowledge, beliefs about medications/treatments, and knowledge of one’s own reaction to medications/treatments affect how self-care and medical compliance are experienced. From the fieldnotes of a research team member interacting with 84-year-old Dr. White (Oakridge Manor),

While we were talking a med tech … came in and gave Dr. White her pills and took her blood pressure. After the med tech left, I watched Dr. White take two of several pills she was given and place the medicine cup behind a picture on her nightstand. I asked her if she planned to take the rest of the pills. She said that some are just vitamins and some pills upset her stomach and make her “regurgitate.” She said that she always takes two that she knows are important and often chooses not to take the other pills.

Compliance with treatment regimens, such as physical therapy and diet, was also influenced by residents’ self-care attitudes and beliefs. For example, for 84-year-old Mrs. Fox (Oakridge Manor), among the most independent residents, self-care meant not just performing routine ADLs, but working hard to maintain them. After hospitalization, she went from being able to walk independently to using a wheelchair. She diligently worked with a physical therapist, following all orders until she could walk again.

Fear, depression, anxiety, and mood also played dynamic roles in residents’ self-care activities. Fear was a factor most often related to falling and often limited exercise or physical therapy practice. Initially, 87-year-old Mr. Doyle (Hillside) walked with a walker to the bathroom and back to his recliner or bed. He dressed himself and regularly joined other residents in the dining rooms. After his friend, a coresident died, he struggled with both fear of falling and depressive symptoms, stopped going on outings, and could only be cajoled to attend one meal per day in the dining room. Lack of practice made him even less steady on his feet and eventually management moved him to a room with more staff oversight.

AL Factors

Home-level factors included risk tolerance and policies, availability and use of rehabilitation professionals, staff training, staffing levels, and physical resources. Policies about what residents can and cannot do affect the ability of residents to do what they prefer to do. For example, no alcohol policies impeded residents from enjoying an occasional adult beverage. Policies and practices interacted with resident-specific behavioral risk factors that served to support or worsen chronic conditions or lead to or prevent falls. At Hillside, residents could walk around the neighborhood and get the bus to the senior center, this supported residents’ ability to get exercise and engage in activities in the community. Decisions about whether or not to support resident self-care also related to staffing levels, scheduling, and availability of time. One physical therapist explained:

If they’re capable—it depends on that, but definitely I would promote—we try to promote [self-care], and sometimes in these facilities the workers are on the schedule so they don’t try to—and the residents are much slower so they kind of try to speed them up. It hinders their—we’ve seen that because we have one lady right now I have one lady who said, “I can’t even stay in the bathroom for 15 minutes,” because she’s real slow. The caregiver coming in, “We got to go. We got to get to work.” That’s reality. In the real world, that’s what it is. In theory, it would be nice for them to do as much as they can.

The availability of informal caregivers and volunteers at the AL community appears to mitigate some of this time crunch for residents who have access to support for practicing self-care. Having exercise equipment, exercise classes, or accessible spaces for walking had an impact on whether residents were physically active.

A Negotiated Process—Limiting and Promoting Self-Care

Self-care is a process negotiated between residents and their convoys and is embedded in the context of the AL community. Negotiations are shaped by the aforementioned factors and serve to both limit and promote resident self-care. Resident self-care was influenced by the size, composition, and function of the care convoy. For example, the extent to which a resident’s care goals aligned with those of their convoy influenced support for achieving a resident’s goals. The negotiation of goals and subsequent care influenced whether the needs and preferences of the resident were met. As Figure 1 illustrates, “limiting and promoting self-care” depicts the tension in the negotiated process, determining whether self-care aligned with the goals of the resident. This negotiated process was influenced by the communication, functioning, and care goals of the convoy. This model reflects the tension between the resident’s daily goals and preferences and those of the informal caregivers’, which are also embedded in the context of the resources available to the resident from the convoy and from the AL context.

Figure 1.

Limiting and promoting self-care in assisted living.

In order to illustrate the negotiation process within the convoy, influential resident and AL factors, and outcomes, we offer three case examples selected to illustrate the complex and dynamic process across three convoy types.

Sylvia, Feld Home

Sylvia, a 95-year-old White Jewish woman, was widowed and attended, but did not graduate from, college. She was gregarious and loved people, but did not mince words. She was able to transfer from her wheelchair to her chair or bed with difficulty and move around her room with her wheelchair but needed someone to take her to meals and activities and assist her to walk with her walker. She was dependent on staff for help with ADLs and was mentally sharp. Sylvia’s socioemotional self-care goals took priority. Her values regarding her health, predominantly mental health, were oriented toward food, socializing, intellectual pursuits, and her Jewish identity. She had physical therapy but was negligent with her treatment regimen and blamed herself for not walking more with her walker.

Sylvia’s convoy was fragmented. Although generally unified in care goals, care partners made independent contributions, with limited collaboration. Sylvia received mixed support for promoting functional health and socioemotional care. Her son, a physician, helped financially and with medical issues but provided limited socioemotional support. Her daughters were more socioemotionally supportive. Sylvia reported, “We try to get together once a week. Sometimes we eat out a meal at night. Every holiday, every Jewish holiday that’s important.”

Sylvia did not mind asking for help, but AL staff were often hurried and did not encourage using the walker because the wheelchair was quicker. When asked about additional help she wanted, she said, “Just to get me to walk. I think … I don’t know if I need more therapy or what … They make me go in the wheel chair because it is easier and faster.” Although one daughter assisted her with walking on weekly visits, the daughters generally preferred she not walk without support because of worry about falls.

Sylvia’s self-care was both limited and promoted at multiple levels. Her family recognizes that her socioemotional goals take priority but lack collaboration. Her daughters are glad she is in a home with social opportunities but are also relieved not have to worry about her walking. Limited AL-level resources, namely staffing levels, curtailed Sylvia’s independence and goals relating to ADLs. When asked about overall life satisfaction, she said: “Well I am not totally satisfied with my life. I am very limited. It would be more satisfactory if I could walk and be more independent. I could get away and do other things other than sit here and talk to you.”

Benjamin, Garden House

Benjamin is a 90-year-old White Christian man. When the study began he and his wife Clara had recently moved into AL but Clara passed away early in the study. They have three children. Benjamin loves to talk and tell stories, sometimes stretching reality to improve a tale. Benjamin was mostly independent, needing some help with bathing, and was in fairly good health. He had macular degeneration, for which he received monthly shots at the Veterans Administration Clinic, and experienced some mild cognitive impairment. Initially, Benjamin moved quickly and with good agility, but after a fall, he spent some time using a walker, later switching to a cane, and became frailer. Although he worked hard to rebuild his strength and health, he no longer drove but still went on social outings.

Benjamin had multiple self-care goals, especially for physical and socioemotional health. He was almost obsessively concerned about his weight and often skipped meals, a concern of his children, and he is very thin. He expressed that nutrition and exercise are key issues for older adults. He walked daily, attended Garden House’s exercise activities, and exercised for 10 min in his room every morning, which he said was helping him feel better. After falling, he received physical therapy and followed the prescribed exercise program, soon graduating to using a cane around his room and a walker in other areas.

Benjamin’s convoy was fragmented with discordant episodes. He was very close to his family, despite occasional tension. During most of the study, he was the center of his convoy, directing and controlling communications. He was in frequent contact with his children and sometimes with grandchildren. He was socially active in his church, veterans’ groups, and Toastmasters. By the study’s end, a key convoy member was his friend and Garden House volunteer, Rebecca. Garden House provided opportunities for walks outside and exercise activities. Benjamin noted that the food was good; Garden House was the only one of the four locations that used fresh vegetables, which was important to Benjamin.

Benjamin experienced factors that both limited and promoted his self-care. The AL community provided the environment for him to meet his health promotion goals related to both nutrition and exercise, and his convoy was generally supportive of these goals, though they thought he was too thin. He was limited, however, in meeting his socioemotional needs and in his relationship with a volunteer, who became a central member of his care convoy despite the disapproval of his children.

Charlie, Riverview Estates

Charlie is an 82-year-old married White man with a high school degree. Charlie worked in construction for most of his life building his family home, which included a barn, fence, and pool. Charlie had gradually progressing dementia until he had a head injury that required a hospital stay which prompted the move to Riverview Estates. Charlie uses a walker and has fear and anxiety along with memory loss.

Charlie has a cohesive convoy. His wife leads the convoy, one daughter handles a lot of the planning and paperwork, a son-in-law helps with financial planning, and the family is described as “close-knit.” Charlie’s wife organizes the family so that someone visits Charlie every day. Self-care is promoted by a family who is in agreement about his care needs. They have a daily presence in the home and continue to provide hands-on care. Additionally, they make their priorities known to the care staff. The way that they encourage maintaining independence through self-care is through cueing. Although Charlie can still accomplish most ADLs, he needs reminding. He can eat independently but needs help showering and some cueing for dressing. His wife reports,

As far as eating goes, he’s fine feeding himself and everything. Sometimes he has to have help you know with meat or things like that he will need some assistance. And I am always have to tell him, finish what’s in your mouth, chew your food, swallow, don’t put more in, just those kinds of things.

In terms of socioemotional care, in order to manage fear and anxiety, they work to keep him connected to the things he used to enjoy and to make sure he gets time outside. His daughter says,

I have these old car magazines that he likes and I will take a magazine to him every time I go. Or I will take him a, a magazine is something that I know he likes. He likes National Geographic and farm books and stuff so I will take him something like that that gives him something to look at. My sister and I both have done picture albums for him of different things.

Because his identity is centered on working with his hands, some of the caregivers ask him for help with things, like moving boxes. The facility had an outdoor space that he enjoys and seems to calm him.

The cohesiveness of the convoy and their involvement means that Charlie’s self-care is generally promoted and not limited. His wife organizes the care convoy and they collaborate to make sure he is cued daily to maximize independence in activities of daily living and also engaged by personalized activities. These activities are reinforced by staff who work in collaboration with the family.

Discussion

Self-care is an important component of resident independence and autonomy. For most, but not all residents, retaining control over and carrying out care tasks to the extent possible affects well-being, quality of life, and can influence aging in place in AL. Maintaining the ability for self-care is influenced by being able to practice self-care so strength, balance, endurance, and cognitive health are maintained or decline is slowed. Independence and autonomy are central to how residents feel about the self-care. However, how self-care is limited or promoted by convoys of formal and informal care partners is often what is thought or assumed to be best for residents, not necessarily what residents choose as important to their quality of life.

This analysis extends patterns by illustrating how self-care is embedded in the convoy and influenced by the convoy type (Kemp, Ball, & Morgan, 2018). Cohesive convoys, where goals are shared and leadership is evident, are generally better at promoting self-care and work together with AL staff and context to meet care goals and maximize the quality of life. Fragmented and discordant convoys suffer from a lack of consensus and leadership to varying degrees and this often ends up limiting at least some aspect of self-care for residents. Goals are sometimes at odds between residents, families, and AL staff, and consensus is neither sought after nor achieved without leadership from residents or informal care partners. Residents, we find, are sometimes limited unintentionally by low staffing or well-meaning family members who may choose safety over risk or expediency over cueing without involving the resident, when possible, in that decision-making process.

This article draws attention to how care convoys negotiate among residents, informal and formal care providers, and the context of care in ways that influence resident self-care activities, which in turn affect care outcomes. As residents become more impaired, they become increasingly acted upon and “equal” partnerships begin to erode. It often becomes the caregiver’s role to limit or promote a resident to be an active participant in their own care over time. This responsibility could be shared across the convoy if there were more structures (e.g., regular communication, regular assessment of goals related to self-care) in place to support self-care activities. Structuring of goal elaboration and communication could be supported by the AL community as part of person-centered care planning and quality improvement processes (Kemp, Ball, & Perkins, 2018, 2019; Molony et al., 2018).

Caregiver and staff fear and risk tolerance could also be a place for intervention. Resident, caregiver, and staff education around health promotion and person-centered care planning would help the convoy prioritize activities that are meaningful and that promote the maintenance of self-care activities that maintain resident quality of life. Explicitly identifying what is meaningful to the older adult allows caregivers and staff to prioritize what little staff/caregiver time is available. Education that helps increase caregiver and AL staff awareness, knowledge, and provides concrete communication strategies would be useful for many of the situations we witnessed. Consistent assignment and increased staff in AL would also support communication within the convoy, knowledge of the resident to support self-care, and staff time to support ADL practice and cueing (Caspar et al., 2020).

The structure and function of the convoy of care for residents in AL are of clear importance to supporting self-care and resident quality of life and well-being. This is particularly true for the most vulnerable residents, including those living with dementia. Collaboration, consensus, and knowing the resident as a person are the cornerstones of person-centered dementia care. Care that taps all the resources of the resident, including their convoy, will likely improve resident outcomes (Fazio et al., 2018).

This research has both strengths and limitations. This study was conducted in one geographical area which limits transferability. Georgia is a rich context because of the variability and diversity of homes and residents in terms of resident demographics, economic resources, size, rurality, and corporate ownership which generally reflects that national data. The longitudinal and largely qualitative design is a strength as following residents overtime and interviewing a large proportion of convoy members provide rich contextual data. Further research is needed to understand how and if these patterns apply to more diverse groups of residents and families and different community contexts.

Funding

This work was supported by the National Institute for Aging at the National Institutes for Health (grant R01AG044368). Contents are the authors’ responsibility and do not necessarily represent NIH views.

Conflict of Interest

None declared.