“How do you take time that much time for one person’s life?” Experiences of dementia caregivers who are not immediate family

Abstract

One in three people with Alzheimer’s or other dementias lives alone, without a spouse/partner or nearby children (i.e., is aging solo), yet most dementia caregiving research has focused solely on spouses or children. This study examined the experiences of friends, neighbors, siblings and others providing unpaid care for someone with dementia. We conducted semi-structured interviews with 14 caregivers (100% female; age 54–85, mean 71; 93% white, 7% black; 29% friend, 29% sibling or in-law, 21% neighbor, 21% church congregant). Participants balanced three priorities: the person living with dementia’s quality of life, the person’s safety and well-being, and the caregiver’s resources. Caregivers described tensions when these priorities conflicted, such as the person with dementia’s goal to live alone vs. risks to their physical safety. These findings and future research can inform policies and programs to support non-family dementia caregiving.

Background

People living with dementia (PLWD) require increasing help with household, medical, and other care as their disease progresses. Approximately 3.5 million community-dwelling people with dementia receive help with at least one self-care activity; spouses, adult children, and children’s spouses account for 76% of older adults’ caregivers (National Academies of Sciences, 2016). However, decreasing family size, divorce, and geographic dispersal of families is changing the availability and composition of caregiving: One in three people with cognitive impairment lives alone, and by 2060 one in four will lack immediate family (neither spouse nor children) (Carney et al., 2016; Edwards et al., 2020; Favreault et al., 2023; Kasper et al., 2015; National Academies of Sciences, 2016; Roofeh et al., 2020).

Adults aging solo (without a spouse/partner or nearby children) rely on friends, neighbors, and other family members for care-related tasks and are more likely than peers with immediate family to use paid help (Lowers et al., 2022). However, help from these care networks often falls short of PLWDs’ needs. Analysis of Health and Retirement Survey data found that half of adults living with dementia or cognitive impairment needed help with at least one activity of daily living (I/ADL), such as shopping, managing medication, or dressing; one in three received help with at least one task (Edwards et al., 2020).

Unpaid caregivers, meanwhile, experience high rates of physical and mental health strain, including higher rates of depression and anxiety than in non-caregiving peers (Ma et al., 2018). Further, dementia caregiving is associated with longer and more intense caregiving than non-dementia care (Parker et al., 2022; Reckrey et al., 2021). Yet, family caregivers also report benefits from caregiving, including a sense of self-efficacy, mutuality, and purpose. (Wang et al., 2022; Yu et al., 2018). Gallagher-Thompson et al proposed a conceptual framework of dementia caregiving in which caregivers’ roles, responsibilities and burden increase over the course of dementia progression as PLWDs’ physical and mental health and overall dependence change (Gallagher-Thompson et al., 2020), but it is unknown how non-family caregivers experience this trajectory.

The scant data on caregivers who are not immediate family suggests they are less likely to live with the care recipient and less likely to report caregiving burden than close kin (Wiegelmann et al., 2021). A study of 114 non-family caregivers for older adults (not dementia-specific) found that a personal history of volunteering, religious beliefs, and seeing an unaddressed need motivated caregivers, who reported feeling good (27%) or friendship (20%) as the reward for giving care to a non-relative (Barker, 2002). Identifying motivation and emotional experience are important for developing interventions to promote and support caregiving relationships, but no research to date has explored how caregivers who are not immediate family navigate the changes in responsibility and dependency that accompany dementia progression. We designed a qualitative interview study to explore the question: What are the experiences of dementia caregivers who are not a spouse or child? We sought to identify motivations to start and continue caregiving, perceived limits to caregiving scope, barriers and facilitators to caregiving, and strategies for determining what care to provide. This study is part of a larger investigation of caregiving negotiation between people aging solo with dementia and caregivers. Initial results of the companion study of people with dementia have been published (Lowers et al., 2024).

Methods

We recruited past or current caregivers broadly through social and print media, dementia support groups, and research registries over 12 months. Caregivers were eligible if they provided unpaid care (including transportation or activities of daily living) for at least one year to a person with dementia who did not live with a spouse/partner or have adult children in the same state; caregivers could not be the spouse or child of the PLWD. We specified at least one year of caregiving to identify situations in which the caregiver had ongoing engagement and potential to see signs of dementia progression. We included past and present caregivers to capture a range of experience with early, moderate, and advanced dementia. We included caregivers who were siblings because they are unlikely to live with the PLWD and are not usually a primary caregiver unless a spouse or child is unavailable (Wiegelmann et al., 2021). Because the overall study is exploratory with limited prior data available, we set 15 caregivers and 15 PLWD (Lowers et al., 2024) as a pragmatic recruiting goal: likely to facilitate a preliminary understanding of the breadth of experiences in each group without an expectation of saturation (Braun & Clarke, 2019b), yet likely to be achievable with vigorous recruiting.

Study staff explained the study goals during the recruiting and verbal informed consent process and supplied a written copy of the consent form. Participants had opportunities to ask about the study during recruitment and before and after interviews; none withdrew. We conducted single interviews by phone (7), Zoom (6), or in person (2); audio recordings were transcribed verbatim and deidentified; interviewers completed post-interview memos. (See interview guide in supplementary material.) Participants received a $50 gift card. Three female interviewers (one PhD-trained researcher experienced in qualitative research, two public health masters’ students) conducted and transcribed all interviews, changing names and other identifying details; a coding team (faculty researcher, one MPH student, one medical student) first read transcripts to identify and define code categories relevant to the research question, then coded transcripts independently (Nvivo 14, Lumivero), meeting weekly to achieve consensus on selecting and applying codes on each transcript. Interviewers and coders disclosed personal experiences and influences that could affect interpretation and actively discussed those influences during study meetings. Potential influences included family history with dementia, personal history with caregiving, and clinical training. The overall study was approved by the Emory University Institutional Review Board and is reported in accordance with the COREQ statement (Tong et al., 2007).

Using a social constructionist orientation, we performed hybrid inductive/deductive reflexive thematic analysis, (Braun & Clarke, 2019a) incorporating stress-coping and social exchange theories, to construct themes. Consistent with reflexive thematic analysis, rather than setting a threshold of saturation we interrogated themes for salience across participants. We did not perform member-checking. We include narrative summaries, consistent with the MIRACLE narrative framework for thick description (Younas et al., 2023). These brief case summaries are presented in italics. Names and identifying details have been changed.

Results

Fifteen past or current caregivers completed one-on-one interviews (mean 59 minutes, range 29–81); one was excluded because the relationship (foster mother/son) was akin to a biological parent/child relationship. Among included caregivers, mean age was 71 (range 54–85); all caregivers were female, and 93% were white. For 93% of caregivers, the person receiving care was female; for 11 caregivers, the person receiving care was alive at the time of the interview; all three care recipient deaths had occurred within two years of the interview. Relationships between the caregivers and PLWD included sibling/sibling in-law (29%), friend (29%), neighbor (21%) and fellow church member (21%). Care activities included transportation, managing finances, medical care, long-term care placement, bathing and household chores.

We identified six interwoven themes (Table 1 and Figure 1). Three foundational themes address what caregivers perceive as goals for PLWD well-being and the resources caregivers have available to meet those goals:

Table 1:

Themes and Code Groups

Base codes	Group codes	Themes
Promoting independent choices Living at home	Preserving independence	Preserving PLWD quality of life
Social engagement Sense of purpose Connection to family	Role fulfilment
Physical activity Food	Physical health
Medical decision making Legal decision making Financial decision making	Decision-making authority	Health and safety
Giving up driving Safe living environment Moving to long term care Hygiene	Changes in independence
Physical proximity Caregiver’s personal resources and responsibilities Past relationship to PLWD Past caregiving experience Empathy for PLWD Altruism Whether PLWD and caregiver are related	Facilitators of caregiving	Defining the caregiving ecosystem
Communication among caregivers and/or family Identifying a team lead Clear role definition	Care team coordination
Defer to the family	Family should take charge
The family should take care of the PLWD PLWD’s children should take the lead
Poor nutrition Driving Safe living environment Substance abuse	Physical safety/unsafe behaviors	Safety vs autonomy
Impaired decision-making Respecting autonomy Convenience for PLWD vs caregiver	Respecting autonomy
(Dis)comfort with aspects of care Caregiving for non-family is voluntary	Caregivers can set limits	Establishing boundaries
Caregiver personal resources and responsibilities Physical proximity Caregiver quality of life	Caregiver personal resources and responsibilities
Family should handle finances Family should provide intimate care Family should handle end-of-life/medical decision making	The family should take charge
PLWD hostility Substance abuse	Caregiver safety
Avoiding conflicts Negotiating limits with a PLWD	Maintaining a positive relationship with PLWD
Limits of non-family legal power Fear of accusations of abuse	Protecting the PLWD and caregiver	Negotiating authority
Enlisting help from physicians, lawyers or clergy	Invoking authority
Deferring to family Establishing a caregiver hierarchy	Assigning responsibility
Disagreements with PLWD or within care team about PLWD health and safety

Figure 1.

Intersection of Primary and Secondary Themes

1. Preserving PLWD quality of life

2. Health and safety

3. Defining the caregiving ecosystem

   Where those themes come into conflict, we identified three connecting themes that illustrate these tensions (Figure 1):

4. Safety vs autonomy (tensions between PLWD quality of life and health and safety)

5. Establishing boundaries (tensions between PLWD quality of life and the caregiving ecosystem)

6. Negotiating authority (tensions between the caregiving ecosystem and health and safety)

1. Preserving PLWD quality of life

All caregivers prioritized helping PLWD preserve what the caregivers identified as key markers of quality of life: maintaining independence (or the appearance of independence) as long as possible, social connections, and physical health.

Case example: After she had a major car accident, members of Linda’s church encouraged her to stop driving. Several offered rides to worship services or took her grocery shopping. Others coordinated rides to Linda’s weekly shift at the church thrift shop. Over time, Linda lost the ability to help sort donated clothes; other volunteers watched to make sure she didn’t wander away. They coordinated efforts to enable her to keep volunteering because they agreed it was important for her to feel useful and have social connections.

Caregivers consistently referenced quality of life, including living independently and social engagement, as a priority in helping a PLWD. For example, many caregivers described giving rides to someone who lived independently but could no longer drive. A ride to the grocery store prolonged the chance to live independently; to church, the chance for social interaction; to a volunteer role, the chance to fulfill a social role and find purpose. Members of Peggy’s pottery collective adjusted her responsibilities so she could retain the social and identify benefits of volunteering even as her capabilities decreased:

“Everyone in this co-op has to work in the [ceramics] gallery. You have to work there two or three times a month, and everybody has to be able to do the computer. Well, a long time ago we eliminated that for Peggy because she didn’t have the cognition. We have one really busy day once a month. She’s always scheduled to work on that day so she can help. She wraps [sold pieces], she feels good about that.”

(CG05)

As PLWDs’ functional abilities deteriorated, help tasks grew in complexity and time commitment. Caregivers often tried to preserve the appearance of independence for a PLWD who was unaware of receiving help. Ellen monitored Claudette’s medications stealthily.

“So, at this point I’m going down to Claudette’s house twice a day, every day. I got two pill dispensers and we set up her morning pills in one and her evening pills in another. And sometimes pills were gone from [the wrong day]. And that’s a little hard, me coming in and saying, ‘Hi, how are you? I just have to check your pills.’ So, I try finding different ways to do it. ‘Hey, I brought you my paper. I’m done with it, here you go.’ And while she’d start looking at it, then I could just pop over and [check the pill boxes].”

(CG11)

2. Health and safety

As dementia progressed, caregivers increasingly worried about fundamental needs such as decision-making for legal, financial, and medical matters, and the PLWD’s basic personal safety.

Case example: Peggy gave up driving as her vision and cognitive abilities deteriorated, relying on senior transit services and a network of friends for rides to the grocery store and medical appointments. Her daughter visits a few times a year to check in. Peggy’s friends worry about her living alone. They believe she needs more help than she realizes, but they are reluctant to reach out to the daughter behind Peggy’s back.

Caregivers reported being vigilant for safety risks that might indicate a PLWD was losing the capacity to live independently, such as household hazards or deterioration in grooming. These fundamental needs were distinct from quality of life in that they related to threats to health and safety that the PLWD might not recognize. Caregivers sometimes struggled with how to mitigate these risks and how long to let a potentially dangerous situation persist.

“I think it’s totally dangerous. He’s living by himself. When his son was down here, he unplugged the stove so [Jake] couldn’t use the stove and then of course [Jake] calls me up and says, ‘I don’t know why the stove’s not working.’ So, any food that I take to him I always make sure he can either use the toaster oven or the microwave.”

(CG04)

3. Defining the caregiving ecosystem

Caregivers appraised the human and institutional resources available for meeting PLWDs’ needs. This ecosystem might include the primary caregiver, the PLWD’s other friends or acquaintances, any children or other relatives, and health and social service providers. Caregivers’ definition of the ecosystem included not only what resources were available, but what the limits of those resources might be.

Case example: Ellen and Claudette, both widowed, were friends and neighbors at a golf resort. As Claudette’s cognitive capabilities decreased, Ellen began accompanying her to medical appointments and managing Claudette’s medications. Other neighbors checked on Claudette daily and notified Ellen if anything was wrong. Claudette’s children lived in other states and declined to participate in Claudette’s care. Eventually, Ellen took the lead on finding a long-term care facility for Claudette, advocating for her care, and organizing her funeral and estate after her death.

Caregivers reappraised their own capacity to provide ongoing help as PLWD needs changed. Caregivers were motivated by one or more of the following: previous caregiving experience, a long and close relationship with the PLWD, and empathy for the PLWD’s vulnerability.

“It was evident that she didn’t have any family, or anybody that stood up as family at that time to really help her. And I don’t know, for me, it was just sad. Because I come from people who take care of people. And so, to meet somebody who didn’t have anybody just right across the street from me, just, you know, it’s kind of…”

(CG03)

Siblings worried that changes in their own health or financial situation would leave them less able to look out for the PLWD. Non-family caregivers, by contrast, said their lack of familial obligation to the PLWD made helping a choice, and therefore less overwhelming:

“The difference is I can call her daughter and say, ‘I can’t do this anymore. Your mom asked me to do this’ and I can offload some of the responsibility.”

(CG05)

Not all PLWD had biological family, but non-family caregivers expected that family members, if any existed, should and would take charge as the PLWD’s capacity deteriorated. Family members who were unwilling to help prompted frustration and resentment from nonfamily:

“I know his kids live a long way away and everything, but to allow him to live in the current situation is just unsafe. They come here for three or four days and think they’ve got everything solved, and then they leave and nothing’s solved.”

(CG04)

Connecting Themes

4. Safety vs. autonomy (intersection of PLWD quality of life and health and safety)

Caregivers described tension and uncertainty where key elements of PLWD quality of life, such as living and making decisions independently, conflicted with fundamental needs, such as physical and legal safety.

Case example: Jake’s temper and alcohol use left him estranged from his children and in limited contact with his nearby brothers. When his wife moved to a nursing home, his sister-in-law began bringing over food and grew concerned about Jake’s weight loss, lack of hygiene, and erratic behavior. Jake’s children found a care facility willing to admit him but acceded when Jake refused to move. Jake denied needing help and could be violent; his health and living environment continued to deteriorate. His brothers and sister-in-law were at a loss for ways to address his apparent self neglect.

Early in a PLWD’s disease course, caregivers might be only peripherally involved in quality of life-related tasks and unaware of threats to the PLWD’s health and safety. Providing support that made the PLWD happy was often easier than raising concerns that might make the PLWD defensive. For example, Linda’s caregivers expressed concern to each other about her unhealthy meals but abetted her by taking her to the grocery store so she could choose her own food. Caregivers often continued this status quo until crisis events such as a car accident, fall, or financial fraud sharpened the focus on safety and the need for increasing care.

5. Negotiating boundaries (Intersection of PLWD quality of life and caregiver ecosystem)

Where PLWD needs conflicted with or overwhelmed caregiver resources, caregivers described tension over whether and how to establish boundaries about what care they would provide. Caregivers weighed the magnitude of PLWD needs, the PLWD’s awareness of the situation, and the bond between PLWD and caregiver against the caregiver’s own resources and the availability of other people or institutions who could help.

Case example: Charlotte’s only living relative is her twin sister, Emily, who lives in another state. When Emily’s health deteriorated, Charlotte spent six months living with her sister and organizing her medical and financial needs. Charlotte worries that her own health or finances may limit her ability to travel to Emily in the future. Emily has no local friends but doesn’t want to move. Emily also lives in a state with favorable Medicaid benefits and better long-term care facilities. Charlotte is torn between honoring Emily’s preferences and making decisions that would make it easier for her to care for Emily in the future.

Some caregivers set limits based on their comfort with certain tasks, such as bodily care, or their own work and family responsibilities. Others had concerns about their own safety. Jake’s sister-in-law was reluctant to visit him alone after Jake verbally accosted her. She pressed her husband to join her on visits in case Jake had been drinking.

“Evidently, he got the neighbor to go buy liquor for him. And if I ever find the alcohol in the house again, that’s it. I’ll never step foot in the house again. And if he ever yells at me the way he did that time, I will never set foot in that house again.”

(CG04)

Uniformly, caregivers expected family members, if any were available, to take charge as PLWDs’ needs grew. Several caregivers described establishing back channels of communication directly with PLWDs’ geographically distant children, informing them about concerns the PLWD might not want or think to share. Assurance that a relative would eventually move the PLWD to a safer living environment gave some caregivers confidence that they would never be asked to provide care beyond their comfort level. Family members who didn’t step up to provide care, by contrast, were a source of frustration for caregivers who took the lead in researching living facilities or monitoring a PLWD’s health. Ellen found herself managing Claudette’s medical care after Claudette fell in her home. When Claudette’s daughter declined to take over decision-making, Ellen took on Claudette’s long-term care planning as well. Ellen felt a responsibility to keep Claudette’s daughter informed and involved in decisions and was frustrated by the lack of family engagement.

“I called the daughter while I’m waiting for the ambulance. And [her] first words were, ‘Well, I can’t get down there before next weekend because we have a vet visit for the dog and I have a doctor’s.’ I am just stunned. I like dogs, but moms are maybe a little more important.”

(CG14)

Caregivers worried that being too firm or pressing for something a PLWD disliked, such as moving to long-term care, would cause the PLWD to reject the caregiver’s help. Maintaining trust and goodwill was therefore an important tool to protect the PLWD’s overall safety. Caregivers also worried that intervening when behaviors were not directly dangerous could also mean committing to additional ongoing care or a difficult negotiation with the PLWD. Linda’s primary caregiver found herself weighing whether to take steps to improve Linda’s personal hygiene, such as telling her to bathe or hiring a bath aide. She worried that Linda would feel judged and reject her help; she also calculated that focusing on Linda’s medical and legal needs was the bigger priority.

In particular, caregivers struggled to set boundaries when a PLWD had no one else available to help. They felt responsibility for reducing the PLWD’s risk of a health or safety crisis even as the effort of supporting the PLWD grew to exceed the caregiving ecosystem’s resources. Over time, addressing Linda’s medical, social, and daily care needs became a full-time job for one church member with help from many others.

“It is overwhelming for everybody, not just me. Everybody’s busy. And how do you take time that much time for one person’s life? I’m talking about these eight to 10 people that have stepped in and done a lot.”

(CG10)

6. Establishing authority (Intersection of health and safety and caregiver ecosystem)

Tension between PLWD health and safety and caregiver capacity came into focus when legal, financial, housing or medical decisions were at stake. Having a clear decision maker offered reassurance, though caregivers sometimes disagreed with decisions.

Case example: The pastoral care committee at Linda’s church became increasingly involved in Linda’s daily life as her needs grew. Rides to the doctor and grocery store were soon supplemented with organizing legal help, medical visits, and social interaction for Linda. One parishioner eventually took on the full-time task of managing Linda’s medical care, finances, and coordination for her daily needs. When Linda’s siblings formally relinquished responsibility for her care, the church caregivers sought appointment of a state-appointed guardian and conservator.

When no immediate family was available or willing to take these decisions on, caregivers worried about making the right decision and about their own authority to do so. In particular they worried that authorities, other caregivers, or the PLWD’s family members would accuse them of endangering the PLWD’s health and safety.

“It is hard not being a family member because I have to be careful of legally what I can and can’t do. I mean, she trusts me, and I feel like she’s letting me do things just because I’m a friend and that is going okay. But legally I think that has been my biggest concern. You know, if I do this, am I going to get in trouble with somebody or not?”

(CG10)

In the absence of a predetermined decision-maker, caregivers turned to authority figures, including physicians and clergy, to help make decisions and communicate decisions about PLWD safety. Ellen relied on Claudette’s neurologist to explain that Claudette should no longer drive. Linda’s most engaged caregivers strategized about who could talk to Linda about the need for guardianship without risking that she would reject their help in the interim.

“Somebody had to petition to appoint a guardian and conservator. Iris took that role, and the minister and Stella were the ones who came over to Linda’s apartment and sat down with her and explained what was happening and what it meant for her, that everyone felt it was the best thing. And fortunately, Linda adored that minister.”

(CG11)

The three sibling caregivers in the study expressed more comfort with taking on PLWDs’ health and safety needs than did caregivers who were not related, citing a high level of trust between themselves and their sibling. This finding, one of the few instances in differences in response between kin and non-kin participants, underscores the durability of caregivers’ perception that these issues are the domain of family.

Discussion

This qualitative investigation is among the first to shed light on the experiences of caregivers of adults with dementia who are not immediate family. The disease trajectory and accompanying needs of people aging solo with dementia mirror those of peers with spouse or child caregivers, but caregivers who fall outside those roles have unique challenges in addressing those needs. Societal norms about the role of family in late-life caregiving influence both what care caregivers who are not immediate family provide and the legal environment in which they do so.

Caregivers in this study consistently expressed the expectation that the PLWD’s family (e.g., children), if any existed, would and should take on decision-making and care tasks related to safety, particularly in late dementia. This expectation appeared to offer two mechanisms to reduce caregiving-related stress: 1) caregivers could focus primarily on PLWD quality of life, and 2) caregivers viewed caring for someone who was not immediate family as a choice that could be rescinded. Altruism and empathy influenced caregivers’ decision to help, consistent with previous, not dementia-specific work (Barker, 2002). While these motivators have been identified in spouse or child family caregivers as well, caregivers in this study did not describe aspects of social exchange commonly identified in family caregiving research (Daley et al., 2019; Silverstein et al., 2002). These distinctions in motivation could inform future development and testing of interventions specifically tailored to encourage and maintain caregiving for PLWD by people who are not immediate family.

When PLWDs’ families did not take on caregiving, or simply did not exist, non-kin caregivers described unique tensions that escalated as dementia progressed. Not all caregivers had a longstanding relationship with the PLWD, yet they made decisions about what the PLWD would eat, wear, or do. Few caregivers in this study were the PLWD’s named medical or legal decision-makers yet many managed medications, appointments, or finances. Caregivers reported fearing both being accused of elder abuse and leaving the PLWD vulnerable to abuse by others. Caregivers’ concerns about non-family roles in decision-making are matched by a lack of clear policies to support care for people aging solo. State and territorial laws on legal guardianship and surrogate medical decision vary widely in who can make decisions and to what extent (DeMartino et al., 2017) (Cohen et al., 2015). Non-family caregivers likewise may be ineligible for Medicaid waiver programs that pay caregivers who co-reside with eligible PLWD (Kaye, 2022). These challenges have repercussions in health care as well, where health and social services professionals report difficulty coordinating services and supports for PLWD who lack a primary advocate (Portacolone et al., 2023).

Limitations

Caregiver perspectives were captured at a single point in time; their level of involvement and perceptions of caregiving may have shifted over time. However, by interviewing both current and former caregivers, the study captured the range of early to late dementia and after death. Study participants self-selected in responding to study announcements; results from this preliminary work could inform surveys of larger populations of non-kin dementia caregivers.

Implications for Policy and Practice

As findings from this study suggest, caregivers who are not spouses or children play crucial roles in helping people with dementia maintain their ability to live independently, but they may not be eligible for the same resources and supports as immediate family caregivers. Revising policies to address the needs of people aging solo with dementia and their currently underrecognized care partners would facilitate health, legal, and financial security for an estimated 20% of adults with dementia (Kasper et al., 2015; Roofeh et al., 2020). The recently released final regulations for the Older Americans Act, for example, defines family caregiver to include unmarried partners, friends, and neighbors (Older Americans Act, 2024), which could increase access to caregiver support services for non-kin. Some Medicaid waiver programs for older adults, for example, offer respite access to any primary caregiver (Hodges et al., 2023).

Adults aging solo, meanwhile, are at risk generally for becoming legally unrepresented – not having a decision maker in the event that they are incapacitated (Farrell et al., 2017; Roofeh et al., 2020). Establishing court-ordered guardianship is a time- and resource-intensive process that can result in lengthy hospital stays while appropriate care environments, such as nursing homes, are identified (Marcum et al., 2017). Caregivers who are not immediate family therefore represent an important asset for health and social care workers and for aligning care, costs, and individual preferences. Strategies to better screen people at risk of aging solo with a new dementia diagnosis and identify and engage with potential caregivers and decision-makers could improve continuity of care and reduce stresses identified here, such as fears of inadvertent elder abuse, (Farrell et al., 2017; Portacolone et al., 2018; Portacolone et al., 2023; Portacolone et al., 2022).

Conclusion

Friends, neighbors, siblings and others who look after people aging solo with dementia face the common challenges of caregiving for someone with progressive cognitive impairment, including balancing the PLWD’s health, safety, and personal autonomy. They also face uncertainty about how far they can or should go to care for someone who is not immediate family without violating that person’s trust, privacy, or autonomy. As changes in demographics and family structures lead to more older adults living alone, (Freedman & Wolff, 2020; Verdery et al., 2019) these informal supports are an underrecognized but crucial resource in helping people with dementia live independently longer. Changes to policy and practice that acknowledge and support the diversity of social roles engaged in dementia caregiving could enhance quality of life for adults aging solo with dementia and those who care for them.

What this paper adds:

• Caregivers of people aging solo with dementia who are not immediate family experience tension over how to safeguard the person’s well-being without having authority to make decisions about living arrangements or finances.

• Not being immediate family may have a protective effect against dementia caregiving stress, as caregivers view their role as voluntary.

Applications of study findings:

• Policies and programs that support dementia caregivers could include provisions for caregivers who are not immediate family.