Examining Help Seeking Behavior in People Living Alone with Cognitive Impairment

Abstract

More than 4 million people in the United States live alone with cognitive impairment or early dementia, yet research on their experiences is limited. Previous research has shown this population has higher levels of unmet care needs and lower financial resources than their married peers. By exploring the experiences of people living alone with cognitive impairment, this research examines the successes and barriers within their journey to inform how interventions can improve their quality of life. We conducted qualitative interviews with 15 PLACI (median age 69, 87% white, 80% female) to explore perceptions of future care needs and resources. Through a modified ideal-type analysis, participants’ thought processes and actions regarding help-seeking were mapped to the five stages of the transtheoretical model. These perspectives suggest opportunities such as connecting them to community social work that could help facilitate their understanding of their needs, help them identify resources, and promote proactive aging.

Background

Among adults older than 65 in the US, dementia and mild cognitive impairment (MCI) have an estimated prevalence of 11% (6.2 million) and 22% (12.4 million), respectively (Manly et al., 2022). People with dementia often require informal care which in the US is provided by adult children and spouses 75% of the time (Committee on Family Caregiving for Older Adults et al., 2016). However, approximately 4.3 million people aging with cognitive impairment live independently (Edwards et al., 2020; Profile of Older Americans, 2021). People living alone with cognitive impairment (PLACI), a term first used by Portacolone et al.(2022), are more likely to have difficulty with activities of daily living (i.e., bathing, eating) and instrumental activities of daily living (i.e. medication management, grocery shopping) than their cognitively impaired peers that live with someone else (Yang et al., 2022),. PLACI frequently look to neighbors, friends or extended family to help them with tasks ranging from transportation to personal care, but 72% have unmet needs (Edwards et al., 2020; Taylor et al., 2023). PLACI’s lack of historical reciprocity with potential caregivers and fewer financial resources in comparison to married peers are among many factors that may account for these unmet needs (Call et al., 1999; Lee & Edmonston, 2019).

Informal caregiving represents a cost savings of $350 billion dollars to the American healthcare system and PLACI (Alzheimer’s Association, 2024a). The population of PLACI in the United States is projected to grow in proportion to the population due to many factors including decreasing birth rates, longer lifespans and geographical mobility (Schulz et al., 2016).While older people in the US rely mostly on informal caregiving and private payer services for support later in life (Committee on Family Caregiving for Older Adults et al., 2016; Gibson et al., 2017)), several countries in Europe have more robust public service programs that provide dementia specific home care (Lillo-Crespo et al., 2018; Rosenwohl-Mack et al., 2021). The United States care delivery model poses significant challenges to PLACI as they not only lack in-home support, but also have lower financial resources than their peers (Lee & Edmonston, 2019). While cognitive impairment and living alone increase their potential for moving to a long-term care (LTC) facility, informal caregiving allows for PLACI to live at home for longer (Pimouguet et al., 2016). Professional organizations, such as the American Geriatrics Society, have encouraged public health and healthcare organizations to find ways to identify this vulnerable population earlier to allow for interventions to improve their quality of life (Farrell et al., 2017). In this effort, studies have used nationally collected data to examine characteristics of PLACI in the US finding that they are more likely to be female and greater than 80 years old amongst other characteristics (Gibson et al., 2017).

Portacolone et al. (2018), in a series of qualitative interviews with PLACI, found that they are often uncertain of what do after their initial diagnosis. This is a point in the process during which people with dementia/cognitive impairment with traditional caregivers are able to utilize their caregivers to help them navigate the emotional and logistical challenges associated with this abrupt change (Committee on Family Caregiving for Older Adults et al., 2016). Alternatively, Portacolone et al. (2018) recommends early intervention by connecting PLACI to support services shortly after diagnosis may help bridge this gap. However, in an environment without this system, PLACI are left to navigate their future care, cognitive change and emotional needs on their own. We hope to shed some light on how they navigate this process through these interviews.

PLACI contemplating future care needs balance a desire to maintain independence against the likelihood of requiring external care and a desire not to be a burden. They may reframe care- seeking to make it consistent with their goal of remaining independent (Lowers et al., 2024). The thought processes involved in seeking care from friends, neighbors, or others can be mapped to the Transtheoretical Model for behavioral change (TTM) (Figure 1). TTM posits that behavioral change is a process that is dependent on a person’s underlying willingness to interact and think about the benefits and consequences of making a change (Prochaska et al., 1994). The TTM’s five stages propose that a person goes from not considering making a change (precontemplation), to considering it (contemplating), to preparing to implement it (preparation), to making the change (action) and lastly to continuing behaviors that allow them to maintain the change (maintenance)(Prochaska et al., 1994). The transtheoretical model is widely used in medicine in the form of motivational interviewing to treat substance use disorder, obesity, and other modifiable conditions (Krebs et al., 2018; Prochaska et al., 1994).

Figure 1:

A Graphical Representation of the Transtheoretical Model

In this analysis we use the TTM to characterize the change-related thoughts and behaviors that people living alone with cognitive impairment go through as they consider future care needs.

Methods:

Individuals who met the following criteria were eligible: 1) self-identified as having a diagnosis of mild cognitive impairment (MCI) or early dementia, 2) did not live with a spouse/partner, 3) did not have children or did not have children who lived in the same state, and 4) did not live an assisted living or skilled nursing environment. Participants were recruited from primary care and geriatrics clinics, dementia registries, and social media. Through informed consent participants were made aware of the overall goals of the study, however researchers refrained from discussing academic and personal interests until the interviews were completed. Interviews were completed by three female, team members who had no previous relationships with interviewees (two graduate students, one faculty member). Interviewers used an interview guide that drew from themes in the successful aging model and previous caregiving literature (Gallagher-Thompson et al., 2020; Kahana et al., 2014; Saleebey, 2012). Interviewers met throughout the interview process to discuss their notes running. No repeat interviews were completed and there were no dropouts. Interviews were completed via phone (12), in person (1) or zoom (2) and were audio recorded without third parties present. They were then transcribed and deidentified (Descript) before being coded and analyzed (Nvivo, Lumivero). We conducted a modified ideal type analysis (Stapley et al., 2022) using types pre-specified in the TTM (Prochaska et al., 1994). First, the authors read through each individual transcript to become familiar with the source material. Second, they identified and coded units of meaning and conducted inductive analysis to identify consistent themes in the help seeking process (Lowers et al., 2024). Third, they used iterative inductive and deductive analysis to re- evaluate and group these codes within the stages of TTM (Lönnberg et al., 2020). Fourth, they identified the best representative of each ideal type and summarized their narrative (Table 1). Data saturation was not sought after in this process, instead focusing on impactful themes seen within the dataset. Analysts reflexively assessed how their past experiences as caregivers, health proxies, and family members of people with dementia could bias their analysis and interrogated potential biases during weekly analysis meetings. The university institutional review board approved the recruiting materials, interview guide, and research protocol for this study.

Table 1:

Shared Characteristics of Each Stage with Narrative of Exemplar Participant.

Stage and Participants with Demographics1	Definition of Stage	Shared Characteristics/ideas/beliefs	Exemplar of Participant in Stage
Precontemplation 3: 60, M, B, Y 13: 64 F, B, Y	Participants in this stage are not aware of current or future care needs	1) No expectation that health status will change in the future 2) Inability, disinterest, or reluctance to think about the future	Participant 3 lives at home by himself with his dog who he has difficulty caring for on his own. He believes he has no current needs for help and that when he does his daughter who does not live locally will take care of him. He has not spoken to her about this plan.
Contemplation 4: 73, F, W, N 5: 71, F, W, Y 9: 59, F, W, N 12: 78, F, W, Y 14: 48, F, W, N	Participants in this stage are considering their current or future care needs and weighing the pros and cons of seeking help. In this stage they are not actively identifying potential sources of care.	1) Able to comprehend concept of present/future needs. 2) Consider how acquiring help will affect their identity/autonomy/lifestyle 3) Limited planning for the future with the expectation that they will solve new problems/needs when they arise.	Participant 5 lives in a condo complex with a small group of friends who check in on each other and help with small tasks. She understands that her health will decline and require further help. She has not identified what form that help will take, but she prioritizes interpersonal connection with a caregiver and preserving her autonomy.
Preparation 7: 79, M, W, Y 8: 73, F, W, Y 10: 74, F, W, Y 15: 61, F, W, Y	Participants in this stage are actively evaluating potential sources of care and working towards creating a manageable needs request.	1) Recognize their current needs and/or their potential future needs. 2) Identify caregivers within their social context that appear to be available to provide care. 3) Consolidate their care needs to make care ask more manageable.	Participant 10 has lived in the same city for over 50 years and trades errands with a similar-aged friend who lives nearby; her daughter lives in another state. She has identified several services including transportation, paid caregivers, younger friends and her daughter as sources of help in the future.
Action 6: 65, M, W, N 11 72, F, W, N	Participants in this stage are acquiring help from caregivers, paid care and social services.	1) Negotiating onset of care/expectations with formal/informal caregivers. 2) Use available social services. 3) Actively evaluating additional sources of care.	Participant 11 lives in a continuum of care community. She receives some day-to-day support from her ex-husband and his wife and is in the process of making her friend her medical decision maker. She remains actively searching for someone who will be a trustworthy caregiver that will allow her to maintain her identity through her disease progression.
Maintenance 1: 78, F, W, Y 2: 81, F, W, Y	Participants in this stage are currently receiving care and looking to maintain their care relationships through increasing reciprocity, diversifying care, and engaging in the relationship with their caregiver.	1) Actively planning how to maintain their care as their care needs evolve. 2) Considering how to maintain their care and decision making as dementia progresses.	Participant 1 has a daughter in another state; she receives most of her caregiving from people in her pottery community. She uses resources such as a local senior transportation service to reduce the burden on them. She actively engages in her relationships with her caregivers through helping them in the pottery studio and offering them organic produce from her farm subscription.

¹Demographics represented with each participant are age, gender, race (B=black, W=white), and Children (yes or no)

Results

We recruited 15 participants with a median age of 69.1 years old. Interviews lasted an average 57 minutes (range 31–88). Participants were 87% white, 80% female and 60% reported some level of college education. Marital status included 20% single/never married, 60% divorced/separated, 7% married but estranged and 13% widowed. (See Lowers et al for full demographics). We categorized participants’ descriptions of their thoughts, beliefs, and actions related to planning and seeking future care according to Prochaska’s TTM. The shared themes and exemplars are presented below. While we identified which stage each participant was in at the time of the interview (Table 1), the interviews often led to discussion of their thought processes and actions in previous stages. Therefore, some examples below are from participants who were past that stage at the time of interviews.

Precontemplation

Participants in precontemplation were unwilling or unable (due to disease progression) to consider the possibility of future caregiving needs. Some had determined that they could not fulfill their eventual care needs, either because they lacked resources or because help-seeking conflicted with their identity as an independent adult.

1. Participants currently do not perceive any needs due to their illness.

“So I don’t, right now, I don’t think I can foresee things changing. I think the way things are now is the way it’s going to be until the end.”

-Participant 4, age 74, female, divorced

Participants described understanding that they had been diagnosed with dementia but perceived that their current functional status didn’t require any care and might never require any care; dementia-related cognitive deficits may have contributed to this perception.

2. Participant’s identity prevents them from considering outside help as an option.

“I don’t want anybody have to take care of me. And that is part of my ancient psychological problem. As I am right now, I would prefer to stay here and die quietly in my bed.”

-Participant 2, age 81, female, divorced

Many participants had spent large portions of their life living alone, and their strong independent identity was challenged by the concept of needing help. Some rejected the idea of help-seeking outright; others were concerned that outside help would decrease their autonomy and sense of personal identity.

Contemplation

Participants in contemplation actively considered their current or future care needs. During contemplation, participants’ thought processes focused specifically on themselves, when they thought they would need care, what type of care they would be willing to accept, and how accepting that care would interact with their autonomy and sense of self.

1. Participants consider what their current needs for help are and/or identify future help needs.

“I suppose right now I’ve keeping up with medical things and there’s been quite a few of them just recently but I probably will need some help and that help is available [in an independent living community]. I just have to arrange for drives. I haven’t done that, but I suppose I’ll need to use that sometime.”

- Participant 2, age 81, female, divorced

Some participants endorsed needing help with IADLs such as transportation, taking medication, shopping and finances. While few spoke about current ADL needs, many were able to envision a future where they existed. This was often influenced by experience caring for others and/or previous experience with family members with dementia. Many participants considered LTC facilities to be a part of their future plan but weren’t sure how or when they would get there.

2. Participants weigh the consequences of how receiving help will affect their identity and autonomy.

“I’m not ready to have someone just take over and do everything for me. Washing my dishes, that’s fine. I like to wash my own clothes. There are certain things that I want to do it my way if I can. If I’m physically or mentally able. And if I’m not then it is a case-by- case basis. So, the person [helping me], their personality would have to be agreeable to step back.”

- Participant 5, age 71, female, separated

In this process participants considered how accepting care would impact their sense of self and daily routine, including their ability to continue making decisions on their own and to live at home.

3. Participants identify specific markers that will indicate they must reach out for care.

“I’ll have to move in with someone or into a community where there are people who can check on you regularly. I don’t feel like I’m there yet, but I’m sure everyone in this situation feels that I’m okay but, I have friends that will be good enough to say, you’re not okay. It’s time to step in.”

- Participant 5, age 71, female, separated

Participants in contemplation often described a particular event or realization that would signify their need for more continuous care. While some identified memory loss as a sign, others identified trouble driving, difficulty with their finances, or a traumatic injury as a marker that they would need to reach out for care. Some participants alternatively identified a strong support network who would be able to tell them when this moment came.

4. Participants consider what type of care they would be comfortable receiving.

“I wouldn’t want to feel like I’m imposing on [my neighbors]. Every now and then needing help or this or that to maybe go to a store. That’s not bad. But on a regular basis I wouldn’t want to do that. And like I said, we know each other, but they’re not the type that you would want really up in your business helping you pay bills or figuring out that sort of thing.”

-Participant 9, age 59, female, divorced

Participants considered which types of care they would be comfortable or uncomfortable receiving, such as finance management or personal care, and whether that care was more palatable from a close friend or a paid aide. Additionally, part of this process involved considering what they would be comfortable asking of others.

Preparation

During the preparation stage participants transitioned from considering what care they would need to identifying and evaluating the resources available to fulfill those needs. Participants identified friends, neighbors, distant family, and other loose ties as possible sources of care. Additionally, participants considered and often began adjusting their own lifestyle to minimize future care needs.

1. Participants assess potential caregivers’ availability, proximity, and trustworthiness.

There’s some people, like the one group of girls I have, they’re like sisters, you know, so they’re not going anywhere. They just are very busy working. One lives in [city] and one lives here, but between grandchildren and two husbands,… The other one is single and works really hard.

- Participant 15, age 61, female, divorced

In this step participants identified people they trusted in their social network and assessed how available they might be to provide caregiving support, examining factors including employment, family obligations, proximity, and health. Participants often identified several people who they felt would be trustworthy as caregivers but often concluded that those individuals would be unable to provide care because of their own responsibilities.

2. Participants identify what care they would be comfortable receiving from each potential caregiver.

“I wouldn’t feel comfortable because I don’t trust my ex-husband with being able to help handle my finances.”

- Participant 11, age 71, female, separated

Participants identified, based on their level of trust and personal history with each potential caregiver, what types of care they would be willing to receive. Participants reserved more intimate care, such as personal care and financial management, from people they trusted highly. Additionally, participants preferred to reserve time-intensive or repeating tasks for people with whom they had longstanding relationships.

3. Participants simplify their care needs to make caregiving less burdensome.

“If I tend to details, if I can downsize this house, if I can get rid of some of the junk, if I can do things that will help my daughter. See there again, it’s that feeling of she’s gonna be responsible to deal with all the stuff that I’ve done here, and I would like to make it easier on her.

- Participant 10, age 74, female, divorced

In this step participants looked to minimize the amount of future care needed from social connections by organizing their house, completing advanced directives, and finding outside resources such as senior transit services and food delivery services.

4. Participants consider what resources they have available to fulfill any caregiving needs.

“I can always find a friend to come in. There are all kinds of people around who are willing to help.”

- Participant 1, age 78, female, divorced

In this process participants inventoried the financial and social resources that could be directed to future care. While some participants’ financial resources could accommodate residence in a continuum of care community, others anticipated that their eventual care needs would deplete their assets and require enrolling in Medicaid for nursing home care. Participants in the preparation stage considered care from friends and neighbors as a strategy to live independently, with fewer costs, for longer.

Action

In the action phase participants implemented the options identified during the preparation stage, engaging their social and financial resources to do so.

1. Participants use financial capital to fulfill care needs.

“I think now my monthly fee [in a continuum-of-care community] is my whole social security check, then I have a slightly less amount from my work at the college. So I’m okay for now. I’ve always lived sort of lower middle-class wages and I’m just used to not having that much money. I’m good at making things work.”

- Participant 2, age 81, female, divorced, with adult children

Participants had varying levels of financial resources in this study. They often used their financial resources to preserve independence (e.g., grocery delivery services) and prepare for future increases in care needs (e.g., buying into a senior living community that would allow them to make transitions to higher levels of care). Some participants identified that didn’t have the financial resources necessary to move into LTC facilities and were uncertain what the future would look like.

2. Participants use social capital to fulfill care needs.

“A lot of people feel they lose their independence when they quit driving. But, you know, independence is a state of mind. I started relying on other people then, and it was a little bit hard to start with, but everybody that I asked for help was so giving and really wanted tohelp me that, you know, I let that go.”

- Participant 1, age 78, female, divorced, with adult children

Participants negotiated with members of their social network to fulfill a variety of needs, most commonly transportation. Participants who were plugged into communities with shared interests such as hobbies and neighborhood groups were often able to utilize these networks to obtain care.

Maintenance

During the maintenance stage participants looked to continue their care through creating a lasting, equitable relationship with a person or a system that they trust. Without the historical reciprocity typically seen in a familial caregiving relationship, subjects felt the need to provide real time value to their caregiver to balance the care they’re receiving. This equity is in the eye of the beholder and can come from things like maintaining a meaningful relationship to providing food gifts.

1. Participants look to reduce self-perceived burden through increasing reciprocity, increasing convenience, and finding multiple sources of care.

“I have a lot of doctors’ appointments and Edith would take me to doctor’s appointments and I decided that that was asking a lot. So I discovered [mobile program].”

- Participant 1, age 78, female, divorced, with adult children

Like their drive to simplify their care needs during preparation, participants looked to adapt specifically to their ongoing care environment to reduce self-perceived burden. Participants often did this through increasing convenience via combining trips to the store and matching their errands to their caregiver’s schedule. Several participants believed that a single person would be overwhelmed by all their care needs, so they sought to spread tasks across multiple caregivers. To achieve a sense of equity in their relationship participants sought to provide value to their caregivers through gifts, developing a meaningful relationship, and exchanging help tasks that were within their ability.

Inattention

Although negotiating care is a stepwise process from precontemplation to maintenance, there remains a possibility at any point for PLACI to no longer be able to complete thought processes or actions that were key to a stage they were previously in secondary to cognitive change. In some cases, PLACI may transition from action to contemplation when they identify new needs that exceed their available resources. In other cases, cognitive change from dementia progression likely leads to a transition back to precontemplation; however, in single interviews we are unable to confirm this (Lim et al., 2022).

Discussion

This study is the first to elucidate the internal negotiation that PLACI undertake when seeking help for future caregiving needs. By matching this process with the familiar TTM, public health organizations and policy makers can address the barriers identified in these interviews with tailored interventions towards PLACI. These findings complement existing literature on PLACI through shedding a light on their internal monologue that’s ongoing as they seek care.

Previous studies have shown that after their initial diagnosis PLACI are often left with strong sense of uncertainty about what to do next (Portacolone et al., 2018).This sense of uncertainty is seen throughout these interviews especially in time periods when PLACI feel their needs outstretch their resources, i.e., attempting to identify informal care sources, determining what they will do when they can no longer live at home. Several organizations have attempted to solve this problem through providing guides to help PLACI predict their future needs and provide strategies for ways to address them. However, these guides are frequently targeted at caregivers and propose solutions that are most feasible for people with informal caregivers or significant financial resources (Alzheimer’s Society of Canada, 2024). More patient-centered guides and interventions, such as the Alzheimer’s Associations guide on how to assemble a care team, are needed to address the challenges that PLACI face in addressing their future care (Alzheimer’s Association, 2024b.).

Interventions targeted at helping PLACI move from precontemplation to contemplation, such as connection shortly after diagnosis to community social workers and support groups that discuss common issues and resources, may help PLACI consider their short and long-term care goals while they have minimal cognitive deficits. Several participants identified concerns for how they would continue to make goal-aligned decisions when they began to face significant cognitive decline. In facing this challenge, they identified alternative methods such as LTC facilities with multiple levels of care or help from longstanding friends as ways to maintain their values and identity after they no longer had the cognition for complex decision making. As these scenarios point out, PLACI need to consider not only current but future needs during the contemplation and preparation stages to allow third parties to make identity-congruent decisions on their behalf as dementia progresses. Advanced care planning (ACP), including identification of a proxy decision-maker, could play a key part in promoting patients’ consideration of their care goals.

The Alzheimer’s Association recommends that people begin completing ACP shortly after they are diagnosed with dementia, (Alzheimer’s Association, 2024c.) enabling them to make decisions about their future care before significant cognitive decline. In 2018, Medicare introduced reimbursement for dementia-related care planning services that allowed providers to bill for these time intensive planning visits (Alzheimer’s Association, 2024c.). This process focuses on establishing a care plan for the years ahead, but may not incorporate conversations about what people believe will continue to provide value and meaning to their life as they age(Lum et al., 2015). Documenting preferences for care through ACP could help alleviate PLACI’s concerns about maintaining their identity and a sense of autonomy as their disease progresses, themes seen both from the perspective of people living with cognitive impairment and physicians (Chung et al., 2017; Milte et al., 2016; Portacolone et al., 2023).

This study has several important limitations. The sample population was primarily white, female, and college educated and therefore not demographically representative of adults aging solo (Carney et al., 2016; Lowers et al. 2024; Roofeh et al., 2020). While the study made significant efforts to recruit a diverse study population, future studies might look to improve diversity through working with organizations within underrepresented communities such as geriatrics clinics and community health/social workers during the recruitment process. Future studies, if large enough, may benefit from subgroup analysis (race, gender, ability, etc.) to determine whether tailored approaches in this help seeking process would be beneficial. By definition, participants also were individuals aware of their diagnosis and interested in speaking about their future care needs. Conclusions derived from their experience may have limited applicability to individuals who don’t wish to engage in planning or whose cognition has deteriorated severely. Nonetheless, applying the TTM offers opportunities to engage with PLACI at any stage. Future research could refine methods to identify PLACI early to maximize their potential to plan, and test interventions geared toward people without close family.

Conclusion

Help-seeking behavior in PLACI is a process that closely follows Prochaska’s TTM and suggests opportunities to help this vulnerable population improve their quality of life through promoting recognition of their needs and exploration of their care environment. After an initial dementia/MCI diagnosis direct connection to wrap-around services could promote proactive aging behaviors and expedite the process of PLACI’s understanding their current/future needs such as from “I don’t think I can foresee things changing” to “I probably will need some help and that help is available”. Additionally, after diagnosis an evaluation of a person’s support networks could help PLACI identify their resources and potential caregivers.

What this paper adds.

• PLACI may have difficulty identifying future care needs and people or resources to provide that care.

• PLACI are constantly evaluating how receiving help for their current and future care needs will align with their identity and values.

• The evaluation and decision process PLACI undertake to identify and address care needs closely follows the TTM.

Application of study findings.

• Interventions targeted at helping PLACI understand their future care needs could help PLACI consider their future care plans before further cognitive decline occurs.

• PLACI have difficulty identifying care resources. Future research could test interventions to help PLACI evaluate previously overlooked social resources.