Support Dynamics Among Community-Dwelling Live-Alone Persons With Dementia Who Lack Familial Care Options

Abstract

While research steadily demonstrates that family functions as the central component in the provision of care for persons with dementia, little is known about support dynamics among those who reside alone in the community. Even less is known about those who reside alone with dementia and lack familial care options. To address this gap, data were drawn from an interview-based pilot (N = 30) that focused on community-dwelling live-alone persons with dementia. Qualitative descriptive analyses were conducted on the subsample who had no identifiable family and their collaterals (n = 10). Analyses indicated several themes including: (1). transient informal care, (2). consequential peripheral ties, and (3). discordant care preference and care planning. The present study expands on the limited information on those aging at home alone with dementia, providing a lens for understanding the complex intersection of dementia, residing alone, and aging without familial support.

Keywords

living arrangements dementia live-alone caregiving

Introduction

The World Health Organization (2023) reports approximately 55 million individuals worldwide have Alzheimer’s disease or a related dementia (hereafter dementia). Projections estimate more than 100 million may be afflicted by 2050. Roughly 74% of persons with dementia reside in the community (Alzheimer’s Association, 2024). Although the majority of community-dwelling persons with dementia live with family or friends, population-based studies in the US, Canada, and several European countries indicate a substantial segment of this target demographic reside alone (Alzheimer’s Association, 2024; Ebly et al., 1999; Gould et al., 2017; Prescop et al., 1999; van der Roest et al., 2009).

Although demographic data are limited, Crance and Yu’s (2025) recent integrative review indicates that individuals with dementia who reside alone are predominately older, female, unmarried/widowed, and tend to exhibit less cognitive and functional impairment than those living with others. This review synthesized data from 31 studies conducted across the US, Canada, Germany, Australia, England, Scotland, Sweden, Republic of Ireland, and United Kingdom. Like the majority of older adults, many persons with dementia prefer aging at home, even if this means residing alone (de Witt et al., 2010; Harris, 2006; Tuokko et al., 1999). Frequently perceived as a sign of independence and good health, aging at home is often viewed as an important achievement for many older adults (Lawton et al., 1982; Oswald & Wahl, 2005). The ability to age at home has been shown to be especially important for live-alone older adults; the home environment and personal space are largely tied to perceptions of independence (Rubinstein & Kilbride, 1992). However, the progressive cognitive and functional decline associated with dementia creates potential risks for those residing alone. Although findings are mixed with some studies indicating live-alone persons with dementia are not necessarily at increased health risk (Eichler et al., 2016), this population is largely noted as more vulnerable than their co-residing counterparts. Studies suggest this group is prone to the dangers of self-neglect, malnutrition, medication non-adherence, financial exploitation, accidental injury, and isolation (Gould et al., 2017; Miranda-Castillo et al., 2010; National Center on Elder Abuse, 1998; Nourhashemi et al., 2005; Thiruchselvam et al., 2012; Tierney et al., 2004;). In Tierney’s (2004) prospective investigation of Canadian live-alone cognitively impaired older adults (N = 139), 53% avoided a harmful event during an 18-month period. The authors suggest the strict threshold used to operationalize incident harm likely underestimated such events. Linkages between increased health risks and living alone with dementia are notably more marked among those with limited support networks.

Family Caregivers & Dementia

Research steadily demonstrates that familial care options function as the most significant component in the provision of care for persons with dementia. Persons with dementia who reside alone typically have at least one caregiver who provides ongoing assistance (Tuokko et al., 1999) with primary support often stemming from an adult child (Eichler et al., 2016; Gibson & Richardson, 2017; Tuokko et al., 1999). While community residing persons with dementia receive substantial informal support with activities of daily living (Friedman et al., 2015), those who reside alone receive less assistance than co-residing care recipients (Gould et al., 2017; Kasper et al., 2015). Sources suggest separate living arrangements likely make requesting and executing informal care more arduous (Alzheimer’s Association, 2017). Nonetheless, persons with dementia who live alone extensively rely on familial care networks to reside unaccompanied in the community.

While it is clear family plays a critical role in the lives of live-alone persons with dementia, there is often a presumption that everyone has some type of familial support network. Overlooked in the literature is the subpopulation of those with dementia who reside alone but have no identifiable family to provide them care. The term “elder orphan,” among other pejorative designations (e.g., unbefriended elderly), have been applied to this unique subset (Carney et al., 2016; Soniat & Pollack, 1994). Authors note that being an “elder orphan” is often due to circumstance (never marrying, outliving children, childlessness, outliving relatives, geographic dispersion of family) rather than choice (Carney et al., 2016). Health and Retirement Study data suggests nearly a quarter of older adults are at risk of having no identifiable family to provide them care (Carney et al., 2016). While the estimated prevalence of and risks associated with being an individual with dementia without any familial kin are not well documented (Gould et al., 2010), the Alzheimer’s Association (2012) suggests between one-third and one-half of live-alone persons with dementia have no identifiable caregiver.

Notably susceptible to “falling through the cracks,” the needs of live-alone persons with dementia who lack familial support networks often only become apparent when a crisis requiring response from law enforcement, Adult Protective Services, or emergency health care occurs (Gould et al., 2017). Some reports suggest makeshift fictive-kin networks (e.g., neighbors, agencies) serve as important natural support systems for persons with dementia who reside alone in the community without familial kin (Soniat & Pollack, 1994). Chronicled over three decades ago, Soniat and Pollack’s work suggest non-biological relationships may act in a compensatory manner, assuming the role most familial systems traditionally play in dementia care.

Despite some available evidence, exploration of the experiences of live-alone persons with dementia who lack family care options remains limited. Designed to include persons with dementia as active participants, not as subjects, the present study expands on the limited, qualitative information on those aging at home alone with dementia, providing a lens for understanding the complex intersection of dementia, residing alone, and aging without familial support.

Methods

Data Collection

Data were drawn from the Living Alone with Dementia (LAD) study (N = 30), a dyadic interview-based protocol that explored experiences of aging with dementia in the community from the perspective of informants (persons with dementia) and their collaterals (e.g., individual familiar with the person with dementia’s health). The convenience sample was recruited through community outreach in a mid-Atlantic region of the United States. Collaborations were established with local aging services, home health agencies, and dementia advocacy organizations to identify individuals aged ≥65, diagnosed with dementia, and residing alone in the community. Residing alone was defined as living without a cohabitant in a non-institutional setting. Exclusion criteria included factors likely to hinder participation in in-depth interviewing: profound hearing loss, language barriers, inability to pass a standard evaluation to give consent measure, and severe dementia (MOCA score <11). Collateral eligibility criteria included: aged ≥18, familiarity with the informant’s health, and provide ongoing assistance with everyday tasks on a regular or daily basis.

Under a protocol approved by the Principal Investigator’s Institutional Review Board, eligible participants were invited to participate in a semi-structured interview. With permission, interviews were audio-recorded. Interviews were conducted by trained research staff with background in social work, clinical psychology, and gerontology. All interviewers underwent specialized training in communication techniques designed for engaging with cognitively impaired individuals. Sample interview questions can be found in Appendix 1. Interviews occurred in informant homes, unless otherwise requested, and averaged 74 min in duration.

Analysis

This study employed a qualitative descriptive analytic approach (Sandelowski, 2000). This method is particularly well-suited for research directly exploring experiences by staying close to the data with low inference. Following this approach, transcribed and de-identified interview data were formatted into ATLAS.ti. For this paper, analyses were conducted on the subset (n = 10) of informants who lacked consanguineal and affinal familial care support (n = 5) and their collateral (n = 5). Table 1 presents each informant, detailing their age, reported conditions, relationship to their collateral, and the collateral’s chronological age. The 20 individuals excluded from the larger sample were informants with familial networks (n = 8) and their collateral sources (n = 12).

Table 1.

Informant Details.

Informant	Age	Marital status	Conditions	Collateral relation (age)
George	75	Widowed	Dementia Diabetes, hypertension, hypercholesterolemia	Friend/Neighbor (78)
Helen	78	Widowed	Dementia, arthritis, hypertension	God daughter (53)
Maria	79	Never married	Dementia arthritis, cataracts	Friend (75)
Mary	74	Never married	Dementia, Hx breast cancer	Friend/Neighbor (75)
Thomas	81	Widowed	Dementia, Diabetes Hx of prostate cancer	Friend (83)

Using a qualitative descriptive approach (Sandelowski, 2000), analyses initiated with retrieval of case material (e.g., informant interview, collateral interview, field notes) for those without family, in preparation for within-case examination. Analysis of each case “enables the researcher to understand those aspects of experience that occur not as individual units of meaning but as part of the pattern formed by the confluence of meanings within individual accounts” (Ayres et al., 2003). This iterative process involved immersion in the case material. Each narrative was read to discern what elements comprised the case and the way they come together to characterize the individual (Sandelowski, 2000). In order to capture commonalities of experience across informants, all case material (case summaries, informant interviews, collateral interviews, field notes) underwent line by line coding in ATLAS.ti. To ensure trustworthiness, an audit trail was developed documenting decisions throughout the research process (Ahmed, 2024). Because qualitative descriptive analysis is a low inference technique, consensus was attained through team meetings aimed toward resolving discrepancies. Recurrent patterns in conversational topics and meanings, as presented in direct statements, were organized to formulate three focal themes (Sandelowski, 2000).

Findings

While each interview was unique, thematic commonalities emerged in terms of support dynamics among those in the sample. Themes included: (1). transient informal care, (2). consequential peripheral ties, and (3). discordant care preference and care planning. Selected as exemplars of each theme, the following quotes portray nuanced statements relating to experiences and intersections of living alone, absent familial support networks, and dementia. All names presented are pseudonyms.

Transient Informal Care

Informants described having at least one individual who provided them ongoing informal support. While the type and intensity of care varied, all informants received instrumental, tangible, and emotional support from a non-familial caregiver. However, this support was portrayed as transient. Deteriorating health of informal caregivers, weak relational investments, and/or confines on non-kin ties were cited as primary reasons for care transience.

Deteriorating Health of Informal Caregiver

Thomas, an 81-year-old widower described his friend, Alice, as his only support. For the length of their 12-year friendship, Alice and Thomas maintained separate residences approximately 10 mi apart. Alice visits Thomas 5 days a week and predominantly provides assistance with housecleaning, laundry, meal preparation, and financial management. Although initially hesitant to mention personal care tasks, Alice also noted she occasionally participates in bathing and toileting routines. While able to oversee Thomas’ current needs, he questions Alice’s ability to continue her current caregiving schedule:

. . . her own [health] is not doing well. She’s not getting younger. . . Somethings you keep in the back of your mind, but when you’re not sure, you leave it alone, you leave it alone… She’s older [than he] and I’m not sure it [caregiving routine].. won’t last. . .

Thomas expressed uncertainty whether Alice is capable of providing him care as he ages. He believes her deteriorating health and advanced age will likely prevent her from serving as a caregiving companion later in life. Echoing Thomas’ concerns, Alice states:

I’m not what I was, and I’m starting to see he’s going to need more help than I’ll be able to give. More a physical [assistance], and have my own issues, taking a toll and when his physical needs get worse, it will be hard for me to keep up. . .

Alice acknowledges her own failing health and its anticipated effect on her ability to function as Thomas’ continual caregiver. Within her interview, Alice acknowledged having multiple chronic conditions including diabetes, hypertension, and a degenerative eye disorder. As her diseases progress, particularly her diabetes and eye condition, she too predicts her hands-on caregiving role will be short lived.

Weak Investment

In addition to deteriorating caregiver’s health, weak relational investment also encouraged transient informal support. For instance, Helen, a 78-year-old widow, identified her goddaughter (no biological/marital relation), Maxine, as her primary source of care. Maxine and Helen’s long-term relationship spans over 50 years and includes history of attending secular events (birthdays, holidays) and religious occasions together. As discussion of caregiving arose, Helen questioned the permanence of Maxine’s role in her life: “She’s not my daughter, maybe if she was [biological daughter], I’d have the peace of mind [knowing care would be long-term].” Unbeknownst to Helen, her goddaughter is expecting to relocate across state lines within the coming years. Maxine attests:

It’s something [caregiving] I fell into. We’re most likely going to be moving to be closer to my husband’s family. Haven’t discussed until we know. I’ll help her into [Continuing Care Retirement community (CCRC)] before anything happens. I know this will be a rough one, depending on how she is [physically and cognitively]. . .only so much I can do.

While Helen’s goddaughter currently provides her ongoing assistance, she acknowledges she “fell into” the role and alludes to a weak long-term investment; estimating their caregiver-care recipient relationship will conclude within the coming years as responsibility shifts to a local CCRC. It is important to note that Helen provided extensive hands-on care to her mother, up until her death. Her experiences caring for her mother was described as a combined labor of love as well as a moral obligation to ensure she lived and died peacefully. Physically and emotionally drained from the demands of caring for her mother, Maxine feels unable to provide long-term assistance to another individual: “I was devoted to her [mother], I couldn’t do it with someone else [Helen]. The stress. Haven’t gotten past her [mother’s death].” Maxine acknowledges a deep commitment to her mother’s care, highlighting the strength of their relationship and reluctance to designate similar long-term investments in a more peripheral connection, such as Helen.

Confines of Non-kin Ties

Each collateral functioned as non-kin, that is a friend or neighbor not belonging to the informant’s family (blood or legal). The struggle of navigating boundaries of their non-kin caregiving role was evident within each collateral’s narrative. Lack of biological/legal connection between informant and collateral encouraged transitory care. The question “is it my place?” and notion “that’s a decision for a spouse or child” arose frequently amid discussion of caregiving roles. Leslie, the collateral of Maria, a 79-year-old never married informant, indicated:

She’s been, several acci-, just bumps and bender fenders (sic), or doors opening too far, but I don’t like it’s my place to take her keys or tell her she can’t or shouldn’t do something, that’s where it [caregiving role] you know [hand gesture signaling ends], same goes for body-ish care…

Given her reluctance to oversee Maria’s ability to operate a vehicle, Leslie was asked who may serve in this capacity. Leslie noted “. . .[should] be a husband or family, she doesn’t have that, I don’t know, down the road it may be pol-, legal enforcing involved.” Feeling confined by the absence of blood and legal family connections, Leslie posits that restricting Maria’s autonomy, in any way, is beyond their non-kin relationship and suggests that law enforcement will decide when she is unable to safely drive a vehicle.

In addition to decisions that may limit Maria’s autonomy, Leslie statement also refers to the fact that her caregiving role will not extend to “body-ish care.” Four of the five collaterals articulated that, while they were comfortable facilitating instrumental activities of daily living (e.g., shopping, meal preparation, transportation, housework), they were disinclined to provide ongoing assistance with basic activities of daily living, such as personal hygiene and maintaining continence. In response to inquiries about her role in George’s life, Gretchen noted: “. . .the, appointments, food, I help the best I can. The larger stuff we’re talking about, the bigger decisions, when moving or is it safe, legal, financial ones, dealing with bowel, or incontinence, I don’t feel comfortable.” While Gretchen presently assists with various instrumental activities of daily living, her caregiving role will not extend to what she considers “bigger decision” pertaining to legal, monetary needs, or personal care. This sentiment is echoed by George. When asked if anyone helps with his finances or personal care, he notes: “. . . Gretchen helps, yes, most things. . . she [deceased daughter] helped with accounts, an accountant, she was an accountant. . .no, no, Gretchen doesn’t [assist with banking or toileting], no.” While Gretchen is willing to provide surface-level support, she acknowledges an unwillingness to “entangle herself” within the financial, legal, or personal care elements of her friend’s ongoing care. Similar to other collaterals, Gretchen is opposed to making hard or controversial decisions, a judgment many perceive as reserved for familial relations.

Although informants extensively discussed various informal care relationships as well their importance to daily functioning, these non-kin care relationships were shadowed with reference to their transitory nature. The nuanced cause of transitory informal care relationships was complex but largely discussed in relation to declining health of the caregiver, weak long-term investment in the caregiver-recipient dyad, and perceived confines to non-kin caregiving relationships.

Consequential Peripheral Ties

Despite the absence of familial relations and the expressed transience of available informal care networks, informant’s narratives were laden with discussion of peripheral relationships, consequential to their daily functioning. These ties consisted of in-person (e.g., local service professionals, local merchants) as well as virtual connections (e.g., online support groups).

In-Person Connections

Mary, a 74-year-old widow took pleasure in daily interactions with her mail carrier. Over the course of several years, Mary engaged in a ritual of sitting on her front porch while awaiting her postal carrier. Although carriers shifted over time, Mary described the “visits” fondly, even calling her most recent carrier “a friend.” Dorothy, Mary’s childhood friend, noted “she regularly doesn’t have any mail, but the one will still stop by, it’s a nice part of her day, checks on her, if she’s not sitting out there, she’ll know that somethings going on with Miss Mary.” As seen from Dorothy’s statement, Mary’s frequent interactions with her postwomen provide a consistent and meaningful social exchange as well as a daily wellness check.

In addition to social connectedness, the routine interactions provided Mary a sense of self-worth. When discussing her interactions with the mail carriers, Mary appeared to take great pride in her position as a known entity to postal employees, proudly stating, “they know about me, they do, they visit me.” Regular interactions with mail carriers served as a consequential social connection important to her sense of self and daily functioning.

Like Mary, George, a 75-year-old widower and retired member of the local fire department, also established significant peripheral relationships with local community service professionals. After a series of falls, George came to the attention of the local police precinct. When discussing the origin of his relationship with one of the local officers, George stated, “I met him [Ken], came out here, was a book left there [points toward staircase], fell down those, and my [late] wife called em’ out. . .comes on to see how I am when, when he’s around. . . he’s great.” While George does not interact with Ken daily, he described their relationship as an extended brotherhood, founded on similar professional backgrounds and mutual experiences. George attributes the officers vested interest in his life as being rooted in their shared experiences of witnessing traumatic events, noting, “[I’m] one of them.”

George’s collateral, friend, and neighbor, Gretchen, stated that his relationship with the local police provides her peace of mind and some assurance he is supervised:

. . .makes me feel a little better knowing others care about his safety. . . it’s not like they’re inviting him over for holidays, but they care. . .it’s funny because when people see his car [police vehicle] in front of the house they start talking, by now they know it’s friendly, not serious. . .

Gretchen articulates the ongoing and supportive nature of the relationship between George and the officer but highlights a noteworthy component of such peripheral connections is that interactions do not extend to more substantial activities like holidays. Notably, Gretchen reports that Ken’s visits provide additional supervision and informal appraisal of George’s functioning at home alone.

Virtual Connections

In addition to real-life peripheral ties such as those established with local service workers, the importance of virtual connections also emerged from interview narratives. With professional background in engineering, use of social networking sites was described as a natural extension of Thomas’ vocational experiences with electronic communications. The social media platform, Facebook, was particularly important within his account: “. . .I mean, I mean, I have Alice, but it’s a great technology, talk to people when you want, far. . .near, people haven’t seen since growing up.” Virtual exchange platforms allowed Thomas to connect with others, regardless of location, creating opportunities to engage with friends or even newly developed acquaintances. Utilization of Facebook groups, a virtual community for people who share common interests, provided Thomas an opportunity to engage with persons coping with similar experiences as he. Following the unexpected death of his wife, Thomas discussed joining a grief-specific Facebook group to seek counsel stating, “. . .met some contacts through, Mona [wife] died. . . they’re, they’ve been a blessing. . . No one should go through, it’s an unmarable [sic] pain. . . you live with.” Similar to Thomas’ depiction, his collateral, Alice, also expressed the important role supportive virtual mediums play in his life. When questioned about social outlets, Alice immediately mentioned that, over the past 10 years, Thomas has spent hours interacting with old colleagues and friends on Facebook on a daily basis:

…well, it’s interesting because he’s retained a lot in some matters, able to interact and work the computer, we leave it up, which helps, so there is no logging in repeated times, the messages are right there. . . many are aware [of cognitive decline] and they make sure to send him a note to see how he feeling. . . will be a great loss, great loss, if he’s unable to interact [on Facebook].

Informational exchanges, such as Facebook, were noted as providing a source of support, knowledge, and engagement as well as a forum for reporting personal experiences. As seen in the above quotations, the virtual exchange platforms offered Thomas significant emotional support, guidance, and an interactive medium to express his emotions.

Discrepant Planning

Each informant expressed a strong desire to age in their own home. All five informants noted that while they intended to live at home unaccompanied for the remainder of their life, each acknowledged they neither had the support necessary nor engaged in activities required to make such aspirations a reality. When questioned what type of advanced care planning Mary engaged in, Dorothy, her collateral, noted:

. . .nothing, she didn’t expect this [dementia diagnosis]. She has, has been tip top most her life. . .No one, I mean nobody would have said she wouldn’t be taking care of herself until you know [death]. . . no planning and not enough people.

In good health most her life, Dorothy notes that Mary did not actively plan for long-term care because it was presumed, she would sufficiently care for herself until her passing. Likewise, Dorothy also acknowledges that Mary has not developed sufficient social supports (e.g., “not enough people”) to ensure she can age at home. While Mary did not actively plan for the time period where she would require immediate and consistent support, she has accumulated enough wealth to afford various long-term care settings:

She has money saved, but to live at your home, the home-care stuff, it takes more than [hand gesture for cash]. . .oversight, someone has to supervise what’s happening, make decisions, payments, plans, hire, fire. . .like a full-time job. Who wouldn’t want to stay in your place? . . . she’ll go to the nursing home where the floor, stairs… and that is, that meets her [needs].

Despite available monetary resources to finance in-home services, Mary does not have the necessary social support to execute this type of assistance at home. Instead, Dorothy predicts Mary will spend her remaining years in a nursing home rather than her current residence.

Similar to Mary, Thomas also articulated a desire to age in his home, but acknowledged he failed to plan for such an occurrence and had not developed the necessary supports to make it a reality, “No I didn’t, nothing done.” In pursuit of a long-term solution for Thomas’ gradual cognitive and physical decline, Alice has begun researching the prospect of homecare services. While this solution is noted as ideal for contending with Thomas’ future care needs, she believes such in-home assistance may not be financially achievable. Alice explains that neither Thomas nor his late wife took active steps to prepare for future care costs. Instead, they relied on the assumption that his late wife would outlive Thomas and manage his affairs (health, financial, social, etc.). Illustrating her point, Alice states:

. . .relied on her for everything. . .THAT was their plan. It’s something that worries me, every day. I don’t want him to be alone, but it’s almost too little too late to stay here forever, the whole thing makes me ill, makes me feel ill, wish there was a better way…I feel, I feel drained. . .

The uncertainty of Thomas’ future care and lack of planning on his and his late wife’s part causes Alice great anguish. While she intends to investigate home-care services for Thomas, she recognizes that, “yes, he wants to stay home, maybe I don’t want to admit it, but he’ll be in a place like Winter Woods [memory care unit]. . .there isn’t anyone who can make it work.”

While each informant expressed a strong desire to age in place, none engaged in the planning necessary to reside in their home should they require a more advanced level of care. Echoing this, each collateral acknowledged that the care needs of individuals living with dementia were complex, and that informant’s wishes were incongruent with their degree of long-term care planning and available support.

Discussion

Dementia caregiving research has predominately focused on familial ties, particularly care relations among spousal or child-parent dyads. Nonfamily ties are rarely explored, as research suggests only a small segment of literature has focused on unpaid, nonprofessional, nonkin caregivers (Fingerman & Hay, 2002; Wenger, 1990). Even less is known about those who reside alone with dementia and lack familial care options. To address this knowledge gap, the present study explored support relationships among live-alone persons with dementia who lacked familial care options.

Within our sample, non-familial relationships appeared to act in a compensatory manner, assuming the role kin systems traditionally play in dementia-care. As noted in previous literature, makeshift fictive-skin networks (e.g., neighbors) can serve as important organic support systems for persons with dementia who reside alone in the community (Soniat & Pollack, 1994). However, these non-kin ties were described as temporary. Such transient care mimics Soniat and Pollack’s (1994) earlier research, however; findings from the present study expand prior work by identifying three central explanations for why transient care may occur. First, collaterals cited their own deteriorating health as grounds for inability to provide long-term support. While collaterals were free from cognitive challenges, their advanced age (M = 72.8) and own physical ailments (M = 3 comorbid conditions) poorly positioned them to function beyond ephemeral caregiving. Each collateral acknowledged the progressive nature of dementia, noting that while informant’s immediate care needs were within the scope of their supportive abilities, further functional and cognitive deterioration would require a more advanced level of care that would exceed their caregiving threshold. This notion is consistent with prior literature showing that when the level of required assistance exceeds non-kin’s own capacities, they are compelled to remove themselves from the caregiving equation and delegate care responsibilities to formal services (Kieninger et al., 2022). Second, although each informant actively provided ongoing assistance, accounts were laden with discussion of weak investments and anticipated transience. Friends and neighbors are voluntary associations, not bound by filial obligations. Informal, non-kin relations are nurtured by reciprocity, but live-alone persons with dementia may be unable to reciprocate within the relationship (Gove et al., 2017). When such weak non-kin caregiving relationships exist and reciprocity is absent, care relationships likely end at the convenience of the individual providing care (Pettersen & Hem, 2011). This suggests that friends and neighbors may be a fragile foundation for late-life assistance among live-alone persons with dementia. Third, the perceived confines of non-familial relations were also cited as a cause of transitory care. While collaterals provided a variety of support, they described reluctance to engage in actions that involved limiting the informant’s autonomy (e.g., restricting driving liberties), financial/legal determinations, or activities that entailed intimate elements of personal care (e.g., showering, toileting). Using data from an Austrian sample, Kieninger et al. (2022) found that non-kin caregivers supporting older adults living alone often set boundaries around personal care tasks, such as bathing or assisting with hygiene. Reluctance to engage in such behaviors may result from the ambivalence and tension inherent when non-kin act in caregiving roles, where such activities may be interpreted as exploitative of a vulnerable adult. Lack of anticipated long-term involvement and commitment leaves concern regarding whether live-alone persons with dementia will receive appropriate services as they age at home unaccompanied. However, as some studies have shown, availability of kin caregivers (e.g., spousal carers) and larger households, do not necessarily predict better or more reliable care (Gillespie & Treas, 2019).

Despite the absence of familial relations and the expressed transience of available informal care, informant’s narratives were laden with discussion of peripheral relationships, consequential to their daily lives. Peripheral ties consisted of both in-person (e.g., local service professionals, local merchants) as well as virtual connections (e.g., online support groups). Peripheral ties require less time and effort to sustain and can provide functions (e.g., novelty, diversion) that close caregiving relationships may not (Fingerman, 2009). While peripheral connections were widely described as beneficial to the informant’s functioning, it is important to note that individuals within each peripheral network did not know one another and therefore did not engage in efforts to coordinate care. When multiple informal supports are involved in the care of an individual, but they lack communication/familiarity, the continuity and quality of support can be compromised (Tang et al., 2018). Without such mechanisms in place, the risk of fragmented care and adverse outcomes (e.g., medication overdose) can increase (Gil-Hernández et al., 2024; Harvey et al., 2022). Nonetheless, this finding points to the importance of peripheral ties and their role in the daily lives of those who reside alone in the community with dementia.

In addition to peripheral in-person ties, virtual connections, such as Facebook were also important components of expressed networks. Technologies in modern life have precipitated a surge in peripheral relationships as internet communication is largely distance independent. Such distant independent connections may support positive interactions of persons with dementia with a greater number of spatially dispersed individuals with whom they would previously be unable to engage. Talbot et al. (2025) found that social media platforms facilitated meaningful connections between individuals with dementia, fostering a sense of community and accessibility to social resources that assisted coping with their cognitive decline. Likewise, in their scoping review, Gunnes et al. (2024) found that use of social networking sites reduced social isolation and loneliness among community-dwelling older adults. The asynchronous nature of Facebook where senders and receivers of messages do not have to be online simultaneously may support interactions at great distances and among persons with dementia who find language (e.g., word finding) a difficult component of their disease. Although negative aspects of virtual exchange platforms were not found in the present study, many sources suggest persons with cognitive impairment hold a higher risk of being victims of scams, deceptive advertising, and internet fraud (Boyle et al., 2019; Han et al., 2015; Mentis et al., 2019; Ueno et al., 2021). While eliminating access to virtual exchange platforms may exacerbate adverse outcomes such as social isolation (Sen et al., 2022), enabling individuals with dementia to engage in such platforms with appropriate safeguards in place likely offers a more balanced and supportive approach (Talbot et al., 2025).

Anticipating and preparing for health and personal care needs are widely advocated by public and private experts and deemed to support well-being among persons with dementia who complete such planning (Dixon et al., 2018; Wendrich-van Dael et al., 2020). While general populations of persons with dementia show varying degrees of long-term care planning (Sussman et al., 2021; Wendrich-van Dael et al., 2020), the present study’s live-alone sample indicated a sole desire to age at home, however, none engaged in activities necessary to make such aspirations a reality. Lack of planning stemmed from overconfidence in previous health status and long-standing assumptions that designated late kin would manage future care options. The unforeseen possibility of dementia left many overconfident in their health status and without appropriate preparation for a future that would require ongoing assistance. Carney et al. (2016) suggest “as independent individuals, they [adults without familial support] have functioned sufficiently well on their own and thus do not actively plan for their medical future. As they age and decline, they realize, often too late, that they can no longer complete many of the tasks that they were previously able to do.” These findings highlight an incongruence between a desire to age at home and the degree of planning necessary to execute such a preference. Such contradictions suggest that live-alone individuals with dementia may require additional support and guidance to ensure adequate preparation for a future of progressive decline.

Methodological Considerations

This analysis only reports findings from interviews with non-Hispanic white men and women who were recruited from one general geographic area. Although the study was properly composed to explore experiences among a small mid-Atlantic sample, the generalizability of the findings across diverse geographical populations may be limited. Future research could extend these findings by exploring care dynamics among black and Latino populations and informants residing beyond the mid-Atlantic United States. Likewise, because the study was designed to focus on dyadic perspectives (e.g., both informant and collateral viewpoints), the study excluded persons with dementia who lacked a collateral (e.g., study partner). While inclusion of this group was beyond the scope of the present study, future research should consider integrating live-alone persons with dementia who lack a study partner into forthcoming caregiving studies. Such inclusion would help determine how such a markedly vulnerable group navigates dementia care.

Conclusion

This study contributes to the limited body of research on individuals with dementia who live alone without familial support, highlighting the complexity of their care experiences. Findings underscore the fragile and fluctuating nature of non-kin care networks, significance of peripheral social connections, and the tensions between personal care preferences and formal care planning within this population. As the number of older adults living alone continues to grow, it is increasingly important to consider models of support that recognize diverse aging trajectories beyond traditional family-centered models of care. Future efforts should consider prioritizing the development of inclusive, community-based care frameworks that recognize the unique vulnerabilities of this group.

Footnotes

Appendix 1 Acknowledgements

We are grateful to our participants for their willingness to share their experiences and the research staff for their contributions to this project.

ORCID iD

Laura Girling

Ethical Considerations

This study was approved by the Principal Investigator’s Institution’s Institutional Review Board.

Consent to Participate

All informants provided informed consent.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

Ahmed

S. K.

(2024). The pillars of trustworthiness in qualitative research. Journal of Medicine, Surgery, and Public Health, 2, 100051.

Alzheimer’s Association. (2024). Alzheimer’s disease facts and figures. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf

Alzheimer’s Association. (2017). Alzheimer’s disease facts and figures. https://www.alz.org/media/images/2017-facts-and-figures.pdf

Alzheimer’s Association. (2012). Alzheimer’s disease facts and figures Alzheimer’s Association. https://pubmed.ncbi.nlm.nih.gov/22404854/

Ayres

Kavanaugh

Knafl

K. A.

(2003). Within-case and across-case approaches to qualitative data analysis. Qualitative Health Research, 13(6), 871–883.

Boyle

P. A.

Schneider

J. A.

Wilson

R. S.

Bennett

D. A.

(2019) Scam awareness related to incident Alzheimer dementia and mild cognitive impairment: A prospective cohort study. Annals of Internal Medicine, 170(10),702–709.

Carney

M. T.

Fujiwara

Emmert

J. R.

Liberman

B. E.

Paris

T. A. B.

(2016). Elder orphans hiding in plain sight: A growing vulnerable population. Current Gerontology and Geriatrics Research, 2016(1), 4723250.

Crance

S. J.

(2025). Characteristics, needs, and perspectives of individuals living alone with dementia: An integrative review. Health science reports, 8(1), e70348.

de Witt

Ploeg

Black

(2010). Living alone with dementia: An interpretive phenomenological study with older women. Journal of Advanced Nursing, 66(8), 1698–1707.

10.

Dixon

Karagiannidou

Knapp

(2018). The effectiveness of advance care planning in improving end-of-life outcomes for people with dementia and their carers: A systematic review and critical discussion. Journal of Pain and Symptom Management, 55(1), 132–150.e1.

11.

Ebly

E. M.

Hogan

D. B.

Rockwood

(1999). Living alone with dementia. Dementia and Geriatric Cognitive Disorders, 10(6), 541–548.

12.

Eichler

Hoffmann

Hertel

Richter

Wucherer

Michalowsky

Dreier

Thyrian

J. R.

(2016). Living alone with dementia: Prevalence, correlates and the utilization of health and nursing care services. Journal of Alzheimer’s Disease, 52(2), 619–629.

13.

Fingerman

K. L.

(2009). Consequential strangers and peripheral ties: The importance of unimportant relationships. Journal of Family Theory & Review, 1, 69–86.

14.

Fingerman

K. L.

Hay

E. L.

(2002). Searching under the streetlight? Age biases in the personal and family relationships literature. Personal Relationships, 9(4), 415–433.

15.

Friedman

E. M.

Shih

R. A.

Langa

K. M.

Hurd

M. D.

(2015). US prevalence and predictors of informal caregiving for dementia. Health Affairs, 34(10), 1637–1641.

16.

Gibson

A. K.

Richardson

V. E.

(2017). Living alone with cognitive impairment: Findings from the national health and aging trends study. American Journal of Alzheimer’s Disease and Other Dementias, 32(1), 56–62.

17.

Gil-Hernández

Ballester

Guilabert

Sánchez-García

García-Torres

Astier-Peña

M. P.

Gea-Velázquez de Castro

M. T.

Cobos-Vargas

Á.

Pérez-Pérez

Carrillo

Fernández-Navascués

A. M.

Mira

J. J.

(2024). Enhancing safe medication use in home care: Insights from informal caregivers. Frontiers of Medicine, 11, 1494771.

18.

Gillespie

B. J.

Treas

(2019). Perceived reliability of assistance among American older adults: A study of kin and non-kin help. International Journal of Care and Caring, 3(2), 183–202.

19.

Gould

Knowles

Lepore

Maslow

(2017). Serving individuals with dementia who live alone. Generations, http://viewer.epageview.com/Viewer.aspx?docid=7105eba4-7097-4def-8391-a7e500c0bc31

20.

Gould

Maslow

Yuen

Wiener

J. M.

(2010). Providing services for people with dementia who live alone. https://www.advancingstates.org/sites/nasuad/files/hcbs/files/211/10515/IssueBrief-PWDLivingAlone.pdf

21.

Gove

Small

Downs

Vernooij-Dassen

(2017). General practitioners’ perceptions of the stigma of dementia and the role of reciprocity. Dementia, 16(7), 948–964.

22.

Gunnes

Løe

I. C.

Kalseth

(2024). Exploring the impact of information and communication technologies on loneliness and social isolation in community-dwelling older adults: A scoping review of reviews. BMC Geriatrics, 24(1), 215.

23.

Han

S. D.

Boyle

P. A.

James

B. D.

Bennett

D. A.

(2015). Mild cognitive impairment and susceptibility to scams in old age. Journal of Alzheimer’s Disease, 49(3), 845–851.

24.

Harvey

Faw

M. H.

Parks

E. S.

(2022). Health and relational outcomes for informal caregivers and care-recipients. In Thompson

T. L.

Harrington

N. G.

(Eds.), The Routledge handbook of health communication (3rd ed., pp. 91–104). Routledge/Taylor & Francis Group.

25.

Harris

P. B.

(2006). The experience of living alone with early stages Alzheimer’s disease: What are the person’s concerns? Alzheimer’s Care Quarterly, 7, 84–94.

26.

Kasper

J. D.

Freedman

V. A.

Spillman

B. C.

Wolff

J. L.

(2015). The disproportionate impact of dementia on family and unpaid caregiving to older adults. Health Affairs, 34(10), 1642–1649.

27.

Kieninger

Wosko

Pleschberger

(2022). Support towards the end of life and beyond: Non-kin care commitment for older people living alone in Austria. Health & Social Care in the Community, 30(6), e5196–e5203.

28.

Lawton

M. P.

Windley

P. G.

Byerts

T. O.

(1982). Aging and the environment: Theoretical approaches (No. 7). New York, NY: Springer Publications Company.

29.

Mentis

H. M.

Madjaroff

Massey

A. K.

(2019). Upside and downside risk in online security for older adults with mild cognitive impairment. In: Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems, pp.1–13.

30.

Miranda-Castillo

Woods

Orrell

(2010). People with dementia living alone: What are their needs and what kind of support are they receiving? International Psychogeriatrics, 22(4), 607–617.

31.

National Center on Elder Abuse. (1998). The national elder abuse incidence study: final report 1-1. https://www.acl.gov/sites/default/files/programs/2016-09/AbuseReport_Full.pdf

32.

Nourhashemi

Amouyal-Barkate

Gillette-Guyonnet

Cantet

Vellas

(2005). Living alone with Alzheimer’s disease: Cross-sectional and longitudinal analysis in the real: FR study. Journal of Nutrition Health & Aging, 9(2), 117–120.

33.

Oswald

Wahl

H. W.

(2005). Dimensions of the meaning of home. In Rowles

G. D.

Chaudhury

(Eds.), Home and identity in late life: International perspectives (pp. 21–45). Springer.

34.

Pettersen

Hem

M. H.

(2011). Mature care and reciprocity: Two cases from acute psychiatry. Nursing Ethics, 18(2), 217–231.

35.

Prescop

K. L.

Dodge

H. H.

Ganguli

Morycz

R. K.

Schulz

R. M.

(1999). Elders with dementia living in the community with and without caregivers: An epidemiological study. International Psychogeriatrics, 11(3), 235–250.

36.

Rubinstein

R. L.

Kilbride

J. C.

(1992). Elders living alone: Frailty and the perception of choice. Transaction Publishers.

37.

Sandelowski

(2000). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340.

38.

Sen

Prybutok

(2022). The use of digital technology for social wellbeing reduces social isolation in older adults: A systematic review. SSM - Population Health, 17, 101020.

39.

Soniat

Pollack

(1994). Elderly orphans with Alzheimer’s disease: Non-traditional support systems. Clinical Gerontologist, 14(1), 33–44.

40.

Sussman

Pimienta

Hayward

(2021). Engaging persons with dementia in advance care planning: Challenges and opportunities. Dementia, 20(6), 1859–1874.

41.

Talbot

C. V.

Roe

Brunner

(2025). Navigating who I was and who I am online: How people with dementia use social media platforms to support identity. Dementia, 24(4), 647–665.

42.

Tang

Chen

Cheng

Ngo

Mattison

J. E.

(2018). Awareness and handoffs in home care: Coordination among informal caregivers. Behaviour & Information Technology, 37(1), 66–86.

43.

Thiruchselvam

Naglie

Moineddin

Charles

Orlando

Jaglal

Snow

Tierney

M.C.

(2012). Risk factors for medication nonadherence in older adults with cognitive impairment who live alone. International Journal of Geriatric Psychiatry, 27(12), 1275–1282.

44.

Tierney

M. C.

Charles

Naglie

Jaglal

Kiss

Fisher

R. H.

(2004). Risk factors for harm in cognitively impaired seniors who live alone: A prospective study. Journal of the American Geriatrics Society, 52(9), 1435–1441.

45.

Tuokko

MacCourt

Heath

(1999). Home alone with dementia. Aging & Mental Health, 3(1), 21–27.

46.

Ueno

Daiku

Eguchi

Iwata

Amano

Ayani

Nakamura

Kato

Matsuoka

Narumoto

(2021). Mild cognitive decline is a risk factor for scam vulnerability in older adults. Frontiers in Psychiatry, 12, 685451.

47.

van der Roest

H. G.

Meiland

F. J. M.

Comijs

H. C.

Derksen

Jansen

A. P. D.

van Hout

H. P. J.

Jonker

Dröes

R. M.

(2009). What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics, 21(5), 949–965.

48.

Wendrich-van Dael

Bunn

Lynch

Pivodic

Van Den Block

Goodman

(2020). Advance care planning for people living with dementia: An umbrella review of effectiveness and experiences. International Journal of Nursing Studies, 107, 103576. https://doi.org/10.1016/j.ijnurstu.2020.103576

49.

Wenger

G. C.

(1990). Elderly carers: The need for appropriate intervention. Ageing & Society, 10(2), 197–219.

50.

World Health Organization. (2023, March 15). Dementia. https://www.who.int/news-room/factsheets/detail/dementia#:~:text=Key%20facts,injuries%20that%20affect%20the%20brain