Proactive Care-Seeking Strategies Among Adults Aging Solo With Early Dementia: A Qualitative Study

Abstract

Objectives

People living with dementia need increasing care over time, but 1 in 3 adults with cognitive impairment lives alone. The goal of this study was to explore the self-identified strengths and resources for future care needs of adults aging solo with early dementia.

Methods

Semistructured interviews with 15 adults not living with a partner and with no children in the same state, who self-identified as having early dementia or mild cognitive impairment; hybrid inductive/deductive reflexive thematic analysis using a successful aging framework.

Results

Participants placed a high value on maintaining independence and expressed concerns about preserving selfhood and becoming a burden to others. These values influenced how participants appraised financial and social resources available to address future care needs and strategies to preempt or respond to needs such as transportation, help with finances, or activities of daily living.

Discussion

Adults without close family are heterogeneous and have variable resources available to address care needs associated with dementia progression. Common values of retaining independence and minimizing burden to others may be helpful in motivating adults aging solo to undertake planning and help-seeking early.

Background

People living with early dementia will need increasing help with daily tasks as the disease progresses, including managing medication, transportation, and activities of daily living (Black et al., 2013; Edwards et al., 2020). Typically, this care comes from close family—spouses/partners and adult children (Gallagher-Thompson et al., 2020; Wiegelmann et al., 2021). However, approximately 23% of U.S. residents will not have spouses or adult children available as caregivers (Carney et al., 2016; Roofeh et al., 2020), and one in three adults with cognitive impairment lives alone (Edwards et al., 2020). Various terminology and definitions have been applied to the population of older adults without family caregivers, including “kinless” (Plick et al., 2021) and “elder orphans” (Carney et al., 2016; Roofeh et al., 2020), which incorporate physical and social isolation, or those not residing with a prospective caregiver: “older adults living alone with cognitive impairment” (Portacolone et al., 2023). In this study and previous work, we define adults “aging solo” as individuals who do not live with a spouse or partner and do not have adult children living in the same state. We include people in independent living communities but exclude assisted living, group homes, and long-term care facilities where assistance with daily activities would be provided (Lowers et al., 2022). This definition focuses on the presence and proximity of the most common caregiving relationships but could in theory include people who live with roommates, tenants, or others. We omit the requirement of isolation in order to focus on the role of broader social networks in caregiving.

Outside of traditional dyads, caregiving may fall to distant family, friends, or neighbors who, like close family, may have health challenges or other caregiving responsibilities of their own (Talley & Crews, 2007). Older adults with dementia who use paid care services remain living in the community longer than peers who do not use such services (Oh et al., 2019; Roche-Dean et al., 2022), but only 26% of community-dwelling adults with dementia receive paid care (Reckrey et al., 2020).

People living alone with a diagnosis of mild cognitive impairment or Alzheimer’s disease report having difficulty with daily tasks more often than those living with others (Edwards et al., 2020; Miranda-Castillo et al., 2010; Yang et al., 2022). They also report distress about the possible disease trajectory, a desire to remain independent, the need to self-manage their condition, and a lack of available services (Portacolone et al., 2018, 2019). Further, adults without spouses or children are heterogeneous, encompassing individuals who are widowed, divorced, or never married (Lowers et al., 2022; Taylor et al., 2023), and those who lack close family and are physically or socially isolated are more likely to be in the lowest income brackets (Roofeh et al., 2020). Adults living alone with cognitive impairment or dementia are more likely have unmet care needs than peers with close family (Edwards et al., 2020), yet our previous research suggests they may have more diverse social and care networks on which to draw (Lowers et al., 2022). There is therefore a need to identify strategies to help adults aging solo with early dementia take steps to preserve independence and prepare for future care needs.

Strengths-based approaches have been widely used to help individuals make the most of personal and community resources to preserve autonomy and compensate for changing function (Saleebey, 2002). The Comprehensive Preventive Corrective Proactive (CPCP) model of successful aging (Kahana et al., 2014; Figure 1) is one such approach. It combines processes (behavioral adaptations) and outcomes (individually identified markers of quality of life) to propose how older adults evaluate and adapt to aging-related challenges. The model considers the overall context of the adult’s life (e.g., demographics, living environment) and the role of both recent stressors (e.g., illness) and cumulative life stressors. The model proposes that older adults address aging-related needs through accumulated lifetime resources—both external, such as social networks and financial assets, and internal, such as self-esteem and a future-oriented outlook. Older adults may tap these resources to prevent or adapt to changing stressors—for example, moving to a location with better aging services or engaging in activities to preserve and enhance cognitive function. Kahana et al. (2014) suggest that positive quality-of-life outcomes, while subjective, include psychological well-being, life satisfaction, meaning in life, and being able to participate in valued activities.

Figure 1.

Comprehensive Preventive Corrective Proactive (CPCP), summarized from Kahana et al. (2014). QOL = quality of life.

The CPCP model centers an older adult’s proactive evaluation of their experiences, resources, goals, and perceptions of cumulative life stressors, making it a useful lens for this inquiry. However, the successful aging paradigm (Rowe & Kahn, 1997) has been critiqued for its emphasis on “healthy” or “active” aging, and in the process devaluing disability, dementia, and frailty (Sandberg & Marshall, 2017) and for placing agency on the individual for achieving “success” without considering the lifetime accumulation of social inequities (Katz & Calasanti, 2015; Rubinstein & de Medeiros, 2015). The purpose of this study was to understand how adults aging solo with early dementia proactively conceptualize their own strengths, assets, and vulnerabilities in terms of future care needs and their future quality of life goals. We use the CPCP framework to parse how study participants think about these assets and their priorities, but we do not presuppose that participants have a particular definition of successful aging or uniform goals for quality of life.

Method

This qualitative study comprised single, semistructured interviews with adults who (1) were community-dwelling (including independent living within a continuum of care community), (2) self-identified as having been diagnosed with mild cognitive impairment or early dementia, (3) did not live with a spouse/partner, and (4) did not have children, or did not have children living in the same state. We employed a broad, snowball sampling strategy because medical records often contain incomplete information about social support (Hendrix et al., 2023). Recruiting channels included primary care and geriatrics clinics, social media, newspaper advertising, and dementia research registries. Most participants were recruited through the Alzheimer’s Prevention Registry; social media posts yielded primarily imposter applicants who were rejected in screening (Ridge et al., 2023). Interested and eligible participants who completed the interview received a $50 gift card; participants could withdraw up to 2 weeks after the interview. The interview guide was developed using theories of successful aging and dementia caregiving (Gallagher-Thompson et al., 2020; Kahana et al., 2014; Saleebey, 2002; see Supplementary Material: Questions). Interviews were conducted in person (1), by phone (12), or Zoom (2), audio recorded, and transcribed verbatim using cloud-based software (Descript.com). The interview team (all female, two graduate students and one faculty) met regularly throughout data collection to share observations and identify potential biases. Transcripts were deidentified; two team members coded transcripts independently, meeting weekly to reach consensus on codes. Reflexive thematic analysis in NVivo (QSR International) used deductive codes based on the CPCP framework (e.g., internal resources, stressors; Kahana et al., 2014) and inductive codes developed by the interviewers and analysts (e.g., identity, barriers to seeking help; see Supplementary Material: Codebook). The coinvestigators developed protothemes during analysis by assessing how inductive codes overlapped with deductive codes from the CPCP framework. To address the primary research question of how people aging solo with dementia think about preserving independence and planning for future care needs, we focused analysis on codes for which the intersection of a dementia diagnosis and aging solo seemed fundamental to participants’ assessment of future needs, goals, and resources. For example, CPCP defines internal resources as dispositional factors such as optimism or an orientation toward the future; we evaluated how text coded as “internal resources” was co-coded with other concepts such as attitude toward help-seeking. We built protothemes based on both what participants identified as internal resources and how they deployed them—for example, help-seeking could be facilitated by a proactive mindset or by a strong dispositional desire to live independently and therefore accept some help toward that end. We constructed our final themes by identifying commonalities among protothemes that crossed multiple parts of the CPCP framework: how participants related to themselves, their diagnosis, and other people. Consistent with reflexive thematic analysis, we did not pursue data saturation but constructed themes salient across participants. The research protocol, interview guide, and recruiting materials were approved by the university Institutional Review Board.

Reflexivity requires acknowledging the research team’s roles, experiences, and perspectives as active participants in knowledge production. Team members shared these explicitly in debrief sessions during data collection and in analysis discussions. Team members’ relevant experiences include caregiving or serving as health proxy for nonfamily, family experience with dementia, and training in dementia research. This transparency facilitated the team’s interrogation of its themes and discussion text.

Results

Fifteen adults with mild cognitive impairment or early dementia (Table 1) completed the interviews, which lasted a mean 57 min (range 31–88). Participants were predominantly White and female, with a median age of 72, and recruited from across the United States. Overall, 67% of participants were divorced or separated and 67% had a bachelor or advanced degree.

Table 1.

Participant Characteristics (N = 15)

Characteristic	Median (range)	%
Age	72 (48–81)
Race
White		87
Black		13
Gender
Female		80
Education
Some college		33
College		27
Advanced degree		40
Marital status
Never married		20
Divorced/separated		67
Widowed		13
Has living childrena		60
Employment
Retired		80
Disabled		13
Unemployed		7

Note:

^aParticipants were eligible only if children lived in another state.

We constructed three overarching themes related to self-perceived strengths of adults aging solo with early dementia, described below and in Table 2 with reference to the CPCP model:

Table 2.

Intersection of Themes and Comprehensive Preventive Corrective Proactive (CPCP) Model of Successful Aging

CPCP model components	Themes
	A lifetime of independence	Preserving selfhood	Not wanting to be a burden
Context (sociodemographics, location)	Self-identification as self-reliant, independent, and capable Whether the living environment facilitates or hinders aging in place
Stressors (recent and cumulative)	Weighing safety and accessibility vs independence (e.g., driving, moving out of house)	Anticipated loss of ability to self-advocate because of dementia progression	Lack of reliable sources of care; limits of available supportive services; expected increase in care needs over time
External resources (social, financial)	Lifetime savings facilitates staying in home with paid help	Long-standing, close relationships with friends/family who understand patient’s values and preferences	Large social support networks diffuse caregiving burden over more people
Internal resources (disposition)	Reframing help-seeking as means to preserving ability to live independently	Proactive disposition toward planning and documenting priorities	Reframing help-seeking as opportunity for others to feel satisfaction from helping
Behavioral adaptations (proactive or reactive)	Activities to preserve physical and cognitive function (e.g., exercise, puzzles, memory aids) Reciprocal help tasks in social network Moving to assisted living Advance care and legal planning Identifying services (e.g., public transit) or social contacts who can help
Quality-of-life outcomes	Living independently as long as possible Having one’s values and preferences represented Personal safety

• Theme 1: A lifetime of independence (relationship to self)

• Theme 2: Preserving selfhood (relationship to dementia diagnosis)

• Theme 3: Not wanting to be a burden (relationship to others)

These themes are grounded in a common context (identity associated with aging solo, a diagnosis of early dementia, and the physical environment) and inform the adaptations participants undertook to prepare for the future as well as their future quality of life goals. The overall context is presented first; goals and adaptations are described after the themes, below.

Context

Participants self-identified as self-reliant, independent, and capable. For many, aging solo was an active choice that had enabled them to prioritize careers, enjoy travel, or move to a new city. More than half of participants had adult children living in another state or country, but few expected or wanted children or other family to play an active role in their future care:

I’ve never been close to any of [my family] where I could feel comfortable calling them up and saying, “Oh, I need some help,” besides the fact that, you know, they have their own issues going on with health and where they live. We’re very spread out, so it just wouldn’t be possible for any of them to just drop what they’re doing and come up here and help me.

Many participants had spent years planning for aging solo, having never married, or having divorced or been widowed some years previously. Four specified being estranged from a spouse, sibling, or adult child who might otherwise have been expected to be a primary caregiver or advocate. Others, however, found themselves without reliable support from a close relation because of unforeseen events, like an adult child’s health deterioration. Beth, a divorced, retired minister, had two adult daughters. One daughter had serious mental health diagnoses and was estranged; Beth had intended to entrust care and decision making to the second daughter, but the daughter was diagnosed with a rapidly progressing neurological condition. Beth’s revised plans for herself focused on her long-term care insurance policy; she anticipated eventually moving to residential care when her own abilities deteriorated:

I’m worried about who takes care of me when I’m in an emergency. My daughter who is in the memory care, she’s the one I thought would take care of me when I got to that point, and she is no longer able to.

Local resources, particularly transportation and social services, also shaped participants’ perceptions of how they might address future needs. Several noted living near public transit lines that would enable them to retain independence when they can no longer drive, while those living in rural areas worried about how to adapt to loss of driving.

Theme 1: A Lifetime of Independence (Relationship to Self)

Participants’ high value on independence framed how they approached future care needs relative to dementia. Living independently as long as possible was a priority for most, yet participants anticipated that changes in cognitive and executive function would reduce their ability to perform the activities essential to independence and jeopardize their safety over time. A primary stressor for many participants, therefore, was determining when the potential harms of independence would require intervention, whether in the form of asking for help for once-routine tasks such as driving or moving to a living environment with more support.

Participants’ calculus for how to preserve independence varied. For some, financial resources offered the potential to extend independent at-home living with paid help or buy into independent living facilities that would offer increasing levels of care as needed. For others, accepting limited help, such as rides to medical appointments or shopping, was an acceptable trade-off: giving up the independent activity of driving to prolong a more important marker of independence—living alone. Some participants specifically noted cultivating a positive attitude toward help-seeking, whether out of pragmatism or altruism. Many participants relied on loose social ties with neighbors for mutual aid, assisting each other with errands and proactively checking on each other’s safety—acts they viewed as mutually supporting of each other’s independence:

There’s five of us that live right next to each other. We’re all single ladies. And we just look after each other.

Some participants had neither social nor financial resources to draw upon and described independence as both a preference and a necessity, including one who was estranged from her biological family and an abusive spouse:

I have nobody in my life that would like say, “Hey, live here,” or, “Hey, I’ll live close and I’ll help you out,” or anything like that. … I have no savings, so I have no retirement, all that kind of stuff. I want to live at least until my cat passes away because I promised him that I would take care of him.

Theme 2: Preserving Selfhood (Relationship to Dementia Diagnosis)

For adults aging solo, dementia’s potential to erode cognitive, linguistic, and social functioning was both an existential and practical threat. Many participants’ value for self-reliance aligned with self-perception as intellectually curious, creative, or outgoing, and they expressed fears about losing those essential parts of themselves. Many participants had been caregivers to family members with dementia in the past and recognized caregivers’ role in championing not just patients’ physical well-being but their identity. Close, long-standing relationships such as children in another state offered continuity for some participants. Yet kinship or marriage did not necessarily equate to a safety net; multiple participants had children, siblings, or estranged spouses they considered unreliable or unable to handle decision making. For others, lifelong friends knew patients’ priorities the best but lived too far away to play an active role in addressing future needs or had health issues of their own. One participant, estranged from her husband, moved into a continuum of care retirement community and was uncertain who could represent her in the future:

I’m very afraid that at some point somebody will notice something’s wrong or I’ll start a fire or something, and then everything that I’ve known and I’m comfortable with will be taken away from me. … What I fear now is that because I don’t have a me [a family caregiver] in my life, that I won’t be a me anymore. I’ll just be a person. If I’m even a person. I might just be, you know, a number. … So I’m kind of hoping a truck will hit me and that’ll be that.

Participants drew on their self-reliance to proactively plan for future health, financial, and legal needs, but recognized that these resources offered finite protection. One participant reported having no close friends and a tenuous relationship with a brother in another state; the participant considered petitioning early for state guardianship so that he would have an advocate when he lost decision-making capacity.

Theme 3: Not Wanting to be a Burden (Relationship to Others)

The idea of receiving help was uncomfortable for many participants, not only because it conflicted with their high value of independence but because they perceived caregiving as burdensome for others. The desire to avoid being a burden shaped participants’ internal and external strategies for addressing future care needs. Some participants took steps to minimize their own potential to create burden by completing legal paperwork and downsizing possessions well in advance. When feasible, participants accessed community services such as senior ride services or chose housing with easy access to public transit. Buying into continuum of care communities offered participants with financial means the opportunity to use paid help rather than impose a perceived burden on friends or relatives. Not all participants had access to such infrastructure, and some had no social network to ask for help. But for many participants, thinking about future care needs meant finding ways to mitigate burden. One participant lives alone in a remote, rural community where she perceives that younger neighbors are friendly but have demands from work and family. Her strategies include relying on deliveries, timing her errands to coincide with neighbors’, and diluting requests for help across multiple parties:

Maybe asking one to help with this one time and another, a different time, or one maybe to help pick up groceries and another one that might do something else for me where it wasn’t on one person all the time. … That would make me feel better if I had several different ones that I could ask for that kind of help.

A few participants reframed the issue of help-seeking more positively, identifying ways in which caregiving could be a reciprocal act between themselves and a care partner, reducing the perceived burden. Others drew on their own experiences of volunteering or caregiving in the past to approach it altruistically. One participant had a long history of volunteering until health issues forced her to scale back and reach out to friends for rides to medical appointments and shopping. She described actively reframing how she thought about asking for help:

I used to want to help people but didn’t want to ask anyone to help me. And the reason I wanted to help people is because it made me feel good. And when I started asking other people for help, I realized that they wanted to help me, they want to help other people just like I used to.

She used senior transit services regularly to reduce the number of rides needed from friends, divided shopping, medical, and other trips among several friends who had offered to help and offered them produce from her farm subscription box as a token of thanks.

The three themes informed participants’ goals for quality of life and the adaptations they undertook to achieve those goals.

Proactive Adaptations

To forestall cognitive and functional losses associated with dementia progression, participants reported a range of behavioral adaptations, including moving, or planning to move, to assisted living; completing health and legal directives; and identifying formal (e.g., transportation services for seniors) and informal (e.g., friends) sources of help for tasks that were becoming difficult or unsafe, such as driving. Many also reported engaging in physical and mental exercises to preserve function and adapting their living environment or daily habits to reduce the risk of losing or forgetting things. These proactive adaptations aligned with participants’ high value of independence and their desire to preserve their selfhood and avoid reliance on others as much as possible. Participants noted that the structural preparations they could make, such as drafting a power of attorney or advance directive, could address bodily care or financial assets, but did little to address quality of life or personhood.

Quality-of-Life Outcomes

Living at home as long as possible was a primary goal for most participants, both because it aligned with their priority of independence and, in some cases, because alternatives were limited or undesirable. While a few participants with children predicted they would one day live with or near a child, many expected to use at-home care or assisted living to preserve their independence and avoid burdening their children.

Many participants also expressed worries about how dementia and frailty might jeopardize their safety, either because of accidents or falls or because it could increase their susceptibility to violence or abuse, with no close caregiver to safeguard them:

A few people had just singled me out and said, “You know what? I’m gonna mess with her because she doesn’t have anybody.”

Discussion

This analysis elucidates the personal resources and strategies that people aging solo with early dementia use to address current and future caregiving needs. Many of their priorities, such as maintaining autonomy, mirror those of people with dementia who have close caregivers (Sellars et al., 2019), but people aging solo describe a need to advocate for themselves early because they anticipate that no one else will. These priorities hold true even for many of the participants who had children or siblings who theoretically could play a role in future care. Aging solo as a construct, therefore, encompasses not only individuals who have no close kin nearby but those whose personal or familial prioritization of independence overrides common social constructions of who can or should provide care (Taylor et al., 2023).

Although participants vary widely in financial resources and social networks, their common independent identity appears to motivate and catalyze strategies such as planning for the future and reframing help-seeking. Interventions to help adults aging solo plan for the future may therefore leverage preserving independence to motivate people aging solo to engage in early planning and building internal resources, such as a positive attitude toward asking for help. Likewise, the nature of dementia itself, specifically its capacity to erode core aspects of personality and self-advocacy, was particularly salient for adults aging solo. While structural needs such as financial management and physical care were common concerns, so was the need to preserve their personhood. People with dementia report preserving personhood through ongoing relationships, by retaining social roles, and through advocacy for one’s preferences and self-image (Hennelly et al., 2021). For adults aging solo, long-standing relationships with family or friends are important resources for both structural and existential needs (Perkins et al., 2013).

At the level of individual intervention, such as in a clinical setting, these findings highlight specific opportunities to leverage common concerns for people aging solo with early dementia as motivation to assess their structural and social assets and make concrete plans to address likely future needs. However, while some adults aging solo have abundant social, financial and other resources, many do not, limiting the potential impact of interventions targeting individual behavior.

Participants’ strategies for aging solo with dementia are constrained by the limits of services and policies that support aging in general and dementia in particular: Limits on Medicaid eligibility for home- and community-based services or long-term care, the out-of-pocket cost of assisted living, a shortage of trained health aides, and service fragmentation all are barriers for people aging solo with dementia trying to prepare for disease progression (Kreider & Werner, 2023; Portacolone et al., 2022). Public transportation may not be available or extensive enough to offer an alternative to driving, particularly in rural areas. Reforms suggested by Portacolone et al. include early identification and intervention with people aging solo with dementia, and coordination and expansion of services such as home-based supports. While the individual preparation strategies described in this paper could help empower people aging solo early, those individuals can only access services that exist and are financially in reach.

Limitations

This study illuminates the care strategies of an overlooked population, but it has several important limitations. Participants self-identified as having mild cognitive impairment or early dementia and were interested in talking about their future needs and care options; they were predominantly White, female, and highly educated. Their perspectives and self-identified resources may not be transferable across the broader population of people aging solo with early dementia; however, they broadly align with other research on people with dementia (Sellars et al., 2019). Participants may have incomplete or inaccurate conceptions of the types of care they will need in the future; analysis of Health and Retirement Survey and other data for people living alone with cognitive impairment indicates common challenges with activities of daily living, such as dressing and mobility, in addition to the help with shopping, finances, and medication management identified by participants in this study (Edwards et al., 2020; Taylor et al., 2023). However, one of the goals for this study was to identify care-seeking strategies that people aging solo identified as important. Prioritizing these care needs in future skill-building interventions may help motivate adults aging solo to prepare more broadly.

Finally, the prioritization of personal independence, while prevalent in the United States and core to the definition of successful aging (Rowe & Kahn, 1997), is not universal (Lamb, 2014). Norms, policies, and programs that emphasize lifelong independence risk implicitly devaluing those who need help (Sandberg & Marshall, 2017) and those who provide it (Buch, 2018).

Conclusion

People aging solo with early dementia or cognitive impairment draw on a variety of structural, social, and internal strategies to prepare for future caregiving needs. By examining these personal strategies against the backdrop of U.S. cultural beliefs about “successful” aging and social and policy structures that rely on family-based caregiving, this paper sheds light on the limitations faced by people aging solo with dementia. While strengths-based approaches may inform individual-level intervention, broader policy changes are needed to support equitable care for this growing population.

Funding

This work was supported by a pilot grant from the Emory Woodruff Health Sciences Center for Health in Aging and the Emory Roybal Center for Dementia Family Caregiving Mastery, funded by the National Institute on Aging of the National Institutes of Health (P30 AG064200).

Conflict of Interest

None.

Author Contributions

J. Lowers planned the study, collected, and analyzed data, and wrote the paper. I. Datcher collected and analyzed data. D. Kavalieratos, K. Hepburn, and M. M. Perkins helped plan the study and revise the manuscript.