Care Partner Confidence and Experiences in Legal Planning for People Living With Dementia: A Mixed-Methods Study

Abstract

Background and Objectives

Care partners of persons living with dementia perform complex legal planning tasks. The purpose of this study was to survey care partners in the United States to understand their confidence and experience in performing legal planning tasks.

Research Design and Methods

This study used a parallel mixed-methods research design. We administered a web-based survey to 318 adults who self-identified as care partners of persons living with dementia. The survey contained Likert scale questions and open-ended questions about legal planning tasks. Multivariate linear regression was used to analyze quantitative data and inductive thematic analysis was used to analyze qualitative data.

Results

Care partners were, on average, 53 years of age and 78% female. The three topics in which participants were least confident were: protecting oneself legally as a care partner; options when legal documents are not in place and a family member is not legally competent; and circumstances when legal documents should be updated or renewed. We observed significant differences in legal planning confidence between newer and more experienced care partners (p < .001); lower- and higher-income care partners (p = .01); and adult child versus spousal care partners (p < .001). Thematic analysis revealed that legal planning challenges include initiating a conversation with the person living with dementia, understanding and using legal materials, and accessing materials that accommodate individual differences.

Discussion and Implications

It is vital to develop legal planning interventions that are tailored to specific subgroups of care partners, and to maximize the clarity, comprehensiveness, and accessibility of available legal planning education.

Care partners of persons living with dementia perform significant and complex legal planning related to their care partner role (National Institute on Aging, 2023). Care partners are family members or trusted friends, typically unpaid, who work with the person living with dementia to assist with activities of daily living (e.g., providing transportation, preparing food, paying bills) and help them to navigate systems, such as healthcare and legal systems (Alzheimer’s Association, 2023a; Feurich, 2021). Legal planning is a key task for care partners in light of the diminishing capacity and competence of the person living with dementia (National Institute on Aging, 2023). Capacity refers to the one’s ability to make medical decisions on their own behalf; it encompasses abilities like cognition, mood, judgment, and insight. Relatedly, competence is a legal term describing one’s ability to participate in legal proceedings or make legal decisions (Libby et al., 2023). The care partner may help the person living with dementia to prepare a will and file advanced directives, which may include recording a do not resuscitate order, or choosing an agent to serve as a legal or healthcare power of attorney (i.e., someone who can make legal or medical decisions on another’s behalf; National Institute on Aging, 2023). The Administration for Community Living’s (ACL) National Strategy to Support Family Caregivers (Administration for Community Living, 2022) highlights that the legal systems, which support family caregivers are “often burdensome, complicated, time-consuming, minimally responsive, and confusing” (p. 43). And yet, if the care partner does not navigate the legal space successfully, end-of-life and postmortem care may deviate from their loved one’s wishes and create additional burden for the care partner.

Although consensus statements and research highlight the importance of legal planning in dementia care, few studies to date have examined the confidence and experiences of care partners in completing legal planning tasks. An international literature review of the ethical issues facing care partners found that they grapple with how to preserve the dignity and autonomy of persons living with dementia, deciding when certain freedoms (e.g., driving, dressing oneself) should be withdrawn, and making end-of-life care decisions on the person’s behalf (Hughes et al., 2002). However, the legal implications of these questions were not explored in that review. Dickinson and colleagues (2013) found that, among English persons living with dementia and their care partners, barriers to legal planning included lack of knowledge as to what advanced care planning entails, reluctance to engage in and document formal decisions, and not knowing who to ask for help. The Alzheimer’s Association (2023b) encourages persons living with dementia and their care partners to focus on identifying an agent to serve as healthcare power of attorney, signing and sharing a living will with healthcare providers, and ensuring that the person designated as an agent under power of attorney (POA) is comfortable carrying out the dying wishes of the person living with dementia. Despite these recommendations, there is insufficient research on American care partners’ legal planning confidence and knowledge gaps to develop and test appropriate interventions.

Legal planning among care partners of persons living with dementia may be particularly challenging for care partners with certain backgrounds or sociodemographic identities. In the present study, we hypothesized that lower-income care partners would report less confidence than their higher-income counterparts, given that attorneys and other sources of legal planning education may be cost-prohibitive (Hipp, 2023). Second, we hypothesized that care partners with fewer years of caregiving experience would report less confidence than their more experienced counterparts, given that less-experienced care partners may have devoted less time to seeking out and understanding legal planning requirements, or may consider legal planning to be a task for later in their caregiving journey (Dickinson et al., 2013). Third and finally, we hypothesized that care partners caring for a parent or parent-in-law (adult child care partners) would report different levels of legal planning confidence than those caring for a partner or spouse (spousal care partners). Although no research exists comparing the legal planning confidence of adult child versus spousal care partners, previous caregiving research has identified differences in stress, burden, and reward experienced by these groups (Penning & Wu, 2016; Pinquart & Sörensen, 2011; Raschick & Ingersoll‐Dayton, 2004; Reed et al., 2014; Young & Kahana, 1989).

The objective of this study was, first, to survey care partners of persons living with dementia in the United States to understand their confidence in performing a range of legal planning tasks, as well as to understand differences between care partner subgroups. The second objective of this study was to understand the subjective nature of care partners’ experiences with legal planning, and to use these experiences to shed light on the confidence ratings found in the first objective. Information gleaned from this study can be used to develop and test interventions that increase care partners’ confidence in performing specific legal planning tasks. These interventions can help bolster partnerships and engagement with legal systems, a desired outcome of the National Strategy to Support Family Caregivers (Administration for Community Living, 2022).

Method

Design and Rationale

The study team selected a parallel mixed-methods research design (Creswell & Plano Clark, 2011). We convened and collaborated with a stakeholder advisory board to create an online survey consisting of both closed (quantitative) and open-ended (qualitative) questions on the confidence and experience with financial and legal planning among care partners of persons living with dementia. This design was selected because the quantitative and qualitative data were expected to be equally important to furthering understanding. The synthesis of quantitative and qualitative data was predicted to yield the most comprehensive explanation of the phenomenon in question. Although the quantitative component enabled participants to rank their confidence in known legal planning topics, the qualitative open-ended questions enabled participants to expand upon the legal planning topic with which they needed the most help and to raise topics unaddressed by the survey.

This article focuses on the legal planning results. The Mixed-Methods Appraisal Tool (Hong et al., 2018) was used to ensure the methodological quality of this study. Ethics approval was approved by the Institutional Review Board at the University of Wisconsin—Madison (IRB 2022-0181).

Survey Development

We convened an advisory board that included experts in financial planning, elder law, geriatrics, dementia caregiving, dementia-related community outreach for historically marginalized populations, and adult education. The advisory board meetings lasted for 60 min via videoconferencing platform. Prior to the first meeting, advisory board members were sent a questionnaire asking them to generate the financial and legal planning topics most important for care partners of persons living with dementia. Results were summarized and presented at the first meeting for discussion and additional topics were generated through discussion. Topics were refined in the second advisory board meeting and then further confirmed by two groups of five care partners through 60-min video meetings. The topics were used to create survey questions, with one question per topic. One research team member drafted questions and questions were refined across three research meetings through team-based consensus discussion. The survey draft was brought to a subsequent advisory board meeting for further review and refinement. Next, the survey was vetted by experts at the university survey center for further refinement.

Measure

The final survey consisted of questions assessing sociodemographic characteristics and 11 legal topics. Sociodemographic characteristics were captured for both care partners and the person living with dementia including gender, age, race and ethnicity, education, marital status, work situation, living environment (e.g., house, assisted living, and so on), zip code, and total combined household income. Care partners were also asked about their caregiving role, including their relationship to the person living with dementia (e.g., mother, spouse, friend); if and from whom they receive help with care; whether they or someone else identifies as the primary care partner, or if care is equally shared; and the total time in years they have spent caring for any person living with dementia. Last, care partners were asked about the person’s current stage of dementia. Answer choices were early, middle, and late, and the definitions provided to participants were consistent with those of the Alzheimer’s Association (2023c).

To measure confidence and experiences in legal planning tasks, the survey consisted of both Likert scale and two open-ended legal questions, the development of which is described in the Survey Development section. An example Likert scale question is, “Rate your confidence in knowing where a family member’s current legal documents are located from 1 (not at all confident) to 5 (extremely confident).” The open-ended questions were, “What legal topics do you need the most help with right now?” and “What other legal questions or topics that we have not asked about are important to you?” All legal planning questions are available in Section 1 of Supplementary Material.

Sample

We aimed to recruit participants aged 18 and older who self-identified as a care partner of a person living with dementia, lived in the United States, and could read English. Specifically, participants were asked if they were “providing unpaid care and/or support to a relative, partner, or friend to help them take care of themselves because of a memory challenge related to Alzheimer’s Disease or related dementias.” To reach a diverse range of care partners, we used a multipronged recruitment strategy to recruit care partners nationally including Alzheimer’s and dementia-focused nonprofit organizations, area agencies on aging, social media influencers focused on dementia care, and multiple older adult and care partner recruitment registries. Recruitment mechanisms included emails, newsletters, and posts on social media that included a direct link to the survey.

Data Collection

Participants anonymously and voluntarily provided self-reported data for both quantitative and qualitative portions of the one-time online survey. The survey was distributed by the research team and community partners via e-mail and social media accounts. Prior to completing the survey, participants were presented with the informed consent document and provided informed consent. After completing the survey, participants were automatically redirected to a form in which they could provide their e-mail address for compensation in the form of a $20 gift card.

The survey was open from March to June of 2022, with frequent temporary pauses to evaluate data quality. Because this was a paid survey spread through social media, there was high potential to receive responses from bots or bad actors. We used a multilevel approach to detect bots or bad actors prior to allowing access to the survey. See Supplementary Table 1 for the criteria used to clean data of suspicious responses.

Data Analysis

Descriptive statistics were used to describe the sociodemographic attributes of care partners and summarize the confidence for each question. Rural–urban commuting area codes were used to determine whether a given zip code was rural or urban (Economic Research Service, 2010). Although the terms “high” and “low” income are highly dependent on geographic location and household size, in this study we defined “high income” as families earning over 100k (the top third of family incomes in the United States, according to the U.S. Census Bureau) and “low income” as families earning less than 40k (the bottom third of family incomes; 2022). The Mann–Whitney U test was used to assess univariate differences in confidence scores between high- versus low-income care partners and between child versus spousal care partners. Multivariate linear regression was then used to assess differences in confidence among subgroups of care partners while controlling for care partner sociodemographic characteristics. For the third subanalysis of care partners (care partners with <2, 2–4, and >4 years of experience), the Kruskal–Wallis test was used to determine if the three categories were from different distributions, followed by the Conover–Iman test with Holm adjustment to compute the pairwise p values while correcting for the bias introduced with multiple tests. An alpha level of .05 was used for statistical significance. Quantitative analyses were performed using Python 3.8 (Van Rossum & Drake, 2009). One participant was missing a response for Q11, so this response was removed when computing mean confidence overall, mean confidence and significance for Q11, and the regression analysis for Q11.Three people reported invalid zip codes. They were assumed to be “urban” in regression analyses as the majority of respondents were urban.

Qualitative data were exported into and analyzed in Microsoft Excel. We used an inductive thematic analysis approach; there were no a priori codes (Braun & Clarke, 2006). Two coders (A. Jolliff and A. Dudek) separately read through each open-ended response. The following research question was used to guide the identification of overarching themes and subthemes from codes: “What drives care partners’ confidence, or lack of confidence, in legal planning?” Each time a new factor influencing confidence was observed, a code was added. A single open-ended response was the unit of analysis and could receive multiple codes. The two coders then met to compare separate coding schemes and reach consensus on a list of common codes. Definitions of common codes and example quotations were documented in a codebook and brought to the third and fourth members of the research team (N. Werner and B. Fields) for discussion and refinement. Due to the anonymity of participants, member checking was not possible.

Results

A total of 318 care partners completed the survey. Participants completed the survey in a median of 17.58 minutes. Table 1 provides sociodemographic characteristics for the care partners. On average, care partners were 53 years of age, 78% female, 81% White, 66% had either a 4-year college or postcollege degree, and 21% lived in a rural location. The majority (74%) of respondents were the primary care partner, the average care team size was 1.5 members, and the average number of years of caregiving experience was 5.8. The majority (60%) of respondents lived with the person living with dementia, 56% of respondents were adult child care partners (42% caring for a mother, 14% for a father), and 32% were spousal care partners (9% caring for a wife, 23% for a husband).

Quantitative Responses

Summary of confidence

Figures 1 and 2 display the rating distribution for all 11 legal planning questions. Figure 1 displays the six questions with the highest average confidence rating, and Figure 2 displays the rating distribution for the remaining five questions with the lowest average confidence rating. The three topics in which care partners were most confident were: where a family member’s current legal documents are located (4.06 ± 1.16); how to honor end-of-life wishes for a family member (3.81 ± 1.19); and how to have a conversation with a family member about their medical care choices (3.72 ± 1.08). The three topics in which care partners were least confident were: how to protect yourself legally as a care partner (2.71 ± 1.29); the options when legal documents are not in place and a family member is not legally competent (2.84 ± 1.34); and the circumstances when legal documents should be updated or renewed (3.06 ± 1.27).

Table 2 provides the average overall confidence scores for each question and is broken down by care partner income, years of caregiving experience, and relationship to the person living with dementia.

Influence of care partner experience on confidence

Care partners with less than 2 years of experience and with greater than 4 years of experience reported overall average confidence scores of 3.01 (0.27) and 3.64 (0.54), respectively (difference = 0.63, p < .001). For comparisons of care partners with >2 and <4 years of experience, see Table 2.

Eight questions had a difference in average confidence between new (less than 2 years) and experienced (greater than 4 years) care partners that was statistically significant (at a significance level of at most .05). The three questions with the largest difference in confidence between new and experienced care partners were: how to honor end-of-life wishes for a family member (3.16 vs 4.16, difference = 1.00, p < .001), what legal documents are necessary to act on behalf of a family member for their medical care (3.12 vs 4.09, difference = 0.97, p < .001), and where a family member’s current legal documents are located (3.47 vs 4.32, difference = 0.86, p < .001).

For each question, we ran a multivariate linear regression that controlled for gender, age, race or ethnicity, education, stage of dementia, relationship to the person living with dementia, and the number of care partners. These models further reinforce the univariate results: the same eight questions had a difference in average confidence between new and experienced care partners that was statistically significant. The difference in average confidence for the top three questions was slightly reduced after accounting for covariates: how to honor end-of-life wishes for a family member (difference = 0.84, p < .001), what legal documents are necessary to act on behalf of a family member for their medical care (difference = 0.70, p < .001), and where a family member’s current legal documents are located (difference = 0.60, p < .001).

Three questions had a difference in average confidence between new (less than 2 years) and experienced (greater than 4 years) care partners that was not statistically significant: how to protect yourself legally as a care partner (2.57 vs 2.73, p = .16), the options when legal documents are not in place and a family member is not legally competent (2.68 vs 2.90, p = .10), and if you are legally responsible for care recipient expenses (2.83 vs 3.17, p = .26).

Relationship between confidence and care partner income

We observed differences in average confidence as a function of care partner income: care partner with an annual income less than $40,000 reported an overall confidence of 3.16 (0.51), whereas care partners with an annual income of more than $100,000 reported an overall confidence of 3.67 (0.52) (difference = .51, p = .01).

Five questions had a difference in average confidence between low-income (less than $40,000) and high-income (greater than $100,000) care partners that was statistically significant: what legal documents are necessary to manage a family member’s finances (3.06 vs 3.93, difference = 0.87, p < .001), how to use the legal documents to act on behalf of a family member’s medical care or manage finances (3.06 vs 3.81, difference = 0.74, p = .003), where a family member’s current legal documents are located (3.58 vs 4.32, difference = 0.74, p = .004), what legal documents are necessary to act on behalf of a family member for their medical care (3.40 vs 4.01, difference = 0.62, p = .004), the circumstances when legal documents should be updated or renewed (2.83 vs 3.33, difference = 0.50, p = .04).

After accounting for covariates and using a multivariate linear regression for each feature, only three questions remained statistically significant with reduced differences: what legal documents are necessary to manage a family member’s finances (difference = 0.63, p = .01), how to use the legal documents to act on behalf of a family member’s medical care or manage finances (difference = 0.56, p = .01), and where a family member’s current legal documents are located (difference = 0.46, p = .03).

Relationship between confidence and care partner relationship

We observed differences in average confidence as a function of care partner relationship to the person living with dementia: adult child care partners reported an overall confidence of 3.29 (0.47), whereas spousal care partners reported an overall confidence of 3.69 (0.47) (difference = .40, p < .001).

Nine questions had a difference in average confidence between adult child versus spousal care partners. The three questions with the largest difference in confidence were: how to protect yourself legally as a caregiver (2.49 vs 2.98, difference = 0.49, p = .003); if you are legally responsible for care recipient expenses (2.88 vs 3.48, difference = .61, p < .001); and what legal documents are necessary to manage a family member’s finances (3.42 vs 3.98, difference = .56, p < .001).

After accounting for covariates and using a multivariate linear regression for each feature, only three questions were statistically significant with slightly reduced differences. Spousal care partners were more confident than adult child care partners in how to protect themselves legally as a caregiver (difference = 0.41, p = .04) and if they are legally responsible for care recipient expenses (difference = .48, p = .02). Regarding whether funeral arrangements have been made and if they are prepaid, adult child care partners reported more confidence than spousal care partners (difference = .56, p = .02).

Qualitative Responses

Analysis of the care partner participants’ open-ended responses yielded six subthemes that were grouped into three themes. Descriptions of each theme and subtheme are presented below along with illustrative quotes. Supplementary Table 2 integrates quantitative and qualitative results.

Initiating a conversation with the person living with dementia

Diagnosis and capacity

Participants expressed uncertainty around when and how to have a conversation with the person living with dementia around their legal choices. Many participants wondered when it could be said that their loved one no longer had the capacity to make their own decisions, and who was responsible for making this determination. One participant summarized this dilemma as “knowing when to step in,” whereas another wondered, “Who gets to determine that they are no longer capable of making decisions for themselves?” Even care partners who were confident that the person living with dementia could no longer make decisions for themselves wondered how to step in. One participant reported being unsure of “how to talk to family member newly diagnosed with dementia … if they are not believing their diagnosis and angry about getting help.” Another participant reported, “We would like to eventually have [the person living with dementia] move into a memory care community and don’t have any legal documents if she refuses.”

Understanding, preparing, and using legal materials

Legal liability

Another factor that drove participants’ lack of confidence was the question of legal liability. Participants wondered whether legal action could be taken against them related to their caregiving role. For example, one care partner asked, “Am I responsible if my mom falls and hurts herself while she is living alone? Knowing that she is a fall risk but trying to respect her desire for independence is tricky.” Other participants also questioned what would happen if the person living with dementia inflicted harm on someone else, or if they would become legally responsible for costs their loved one incurred.

Information overload

Many participants reported difficulty with another aspect of understanding legal information: information overload. One care partner was overwhelmed by the amount of information available: “We needed to do very much research to find the materials available. There are so many materials available, but sometimes they are in many locations, and sometimes the materials cover portions of information that we need, but not all.” Another participant affirmed that it was challenging to work through the vast demands: “The legal system is confusing. I hope that we have covered everything we need to.”

Process ambiguity

Participants noted that the different steps involved in legal planning were ambiguous. One care partner found that merely starting was hard: “Where do I start? I often feel overwhelmed and do not know where to start, who to ask, or even what questions to ask.” Others described challenges of knowing when and what kind of professional help is needed. One participant, who was providing care at a distance, explained, “I don’t know where to go for legal help. What type of attorney do we need? Which state?” Another questioned, “Which tasks require the assistance of a lawyer and what can I do on my own?” Other participants expressed not knowing what legal documents were needed for different purposes, and when to update them. For example, one participant needed the most help with “determining which legal documents need updating and for what purposes. What documents are needed when making funeral arrangements?” Another participant reported having necessary legal documents in place but did not know how to use those documents to effect change, such as how to exercise agency as a designated power of attorney and how to ensure that advanced directives are followed: “We … have the legal documents we need. It’s the practical details of when to use what that I need more insight on.”

Honoring wishes

Some participants expressed a lack of confidence in honoring their loved one’s end-of-life wishes. In some cases, the participant was not designated as an agent under healthcare POA; in others, the participant was an agent, but was concerned that others (e.g., medical professionals, family members, institutional care facilities) would not honor the participant’s authority to make decisions congruent with the wishes of the person living with dementia. Indeed, one participant conveyed, “I don’t have POA over my grandparents and I am worried that their wishes won’t be carried out because my grandma refuses to sign voluntarily.” Others expressed concern over the quality of institutional care. Explicitly, a participant said, “At this time our family’s questions all revolve around nursing home care … what can we legally demand of the nursing home, what specifically is the nursing home responsible for, who is ultimately accountable at the nursing home, and what kinds of recourse does family have to resolve issues at the nursing home?”

Accessing appropriate resources

Cultural and individual differences

Several participants left comments about the need for appropriately tailored resources for legal planning. Namely, participants noted that resources do not address cultural differences and nuances that affect caregiving. One participant shared, “It is extremely hard navigating all of this as a child of immigrants.” Another participant expressed concern about eligibility criteria of resources and knowing whether legal action could be taken, “With Alzheimer’s considered a disease of the elderly, it was extremely challenging and confusing figuring things out with my husband [the person living with dementia] being in his 40s and early 50s and our children being minors. We just didn’t qualify for many supports.”

Discussion

This study was the first mixed-methods study to explore the confidence and experience of care partners of persons living with dementia in performing a range of legal planning tasks. We found that care partners were most confident in knowing where a family member’s current legal documents are located, how to honor end-of-life wishes for a family member, and how to have a conversation with a family member about their medical care choices. Care partners were least confident in knowing how to protect themselves legally as a care partner, the options when legal documents are not in place and a family member is not legally competent, and the circumstances when legal documents should be updated or renewed. Further, care partners with limited caregiving experience and lower-income care partners were less confident in performing certain legal planning tasks. Spousal and adult child care partners also differed from each other in confidence, with spousal care partners reporting significantly greater confidence than adult child care partners in two legal planning topics, but less confidence than adult child care partners in a third. Explanations for lacking confidence in these areas, as offered by the qualitative data, included difficulties with knowing when and how to initiate conversations, challenges with comprehending and using legal materials, and trouble accessing appropriate resources for legal planning. These results provide a foundation to inform the design of strengths-based educational interventions, which have been found to be effective for care partners of persons living with dementia (Judge et al., 2010). Researchers and technology developers can design interventions that begin where care partners already feel confident, and gradually scaffold toward legal planning topics in which they lack confidence.

Previous research examining care partner preparedness found that care partners lack confidence in navigating “care systems and resources,” among them the legal system (Mroz et al., 2023). Research has also found that care partners struggle to balance their loved one’s desire for autonomy (e.g., driving) with the need to keep them and those around them safe (Hughes et al., 2002). However, little research has examined the specific questions of legal liability facing care partners. Care partners, particularly adult child care partners, were unsure of the legal implications should the person living with dementia hurt themselves or others and lacked confidence in how to protect themselves legally. Adult child care partners also wondered if they were legally responsible for expenses incurred by their loved one. This fear of liability may lead care partners to unnecessarily restrict the activities of the person living with dementia or to consider transitioning to long-term care sooner than they otherwise would have (Miron et al., 2023). Care partner interventions should acknowledge and, when appropriate, assuage fears surrounding legal liability, providing straightforward and location-specific education on when a care partner is and is not legally liable for their loved one’s actions.

Our quantitative results suggest that, overall, care partners are relatively confident around honoring end-of-life wishes. However, quantitative analyses of participant subgroups, as well as the qualitative analyses, yielded a more nuanced understanding of care partner confidence in end-of-life planning. In our quantitative analyses, new care partners were less confident than experienced care partners regarding end-of-life wishes. Further, spousal care partners were less confident than adult child care partners regarding whether funeral arrangements had been made. It is possible that new and spousal care partners find it more psychologically painful to consider planning for the end of their loved one’s life, and therefore avoid or postpone it (Pinquart & Sörensen, 2011). In our qualitative analyses, participants shed light on additional doubts surrounding end-of-life wishes. Even when they were designated as the agent under POA and knew of their loved one’s end-of-life wishes, some participants doubted whether the relevant systems (healthcare and family) would cooperate to carry these wishes out. Thus, it is important for legal planning interventions to provide guidance on end-of-life planning with the person living with dementia, normalize feelings of grief associated with end-of-life planning, and provide explicit instructions regarding how a person designated as an agent under POA can make their loved one’s wishes known to others.

Previous research has suggested that care partners of early-stage persons living with dementia experience greater burden and personal sacrifice than middle-aged care partners (Adams & Sanders, 2004). Other research has shown that having caregiving experience is a double-edged sword, leading to increased confidence in some caregivers but impeded confidence in others (Mroz et al., 2023). Our own results highlight that newer care partners (i.e., care partners with less than 2 years of caregiving experience) reported less confidence than more experienced care partners (i.e., care partners with more than 4 years of experience). Care partners with less experience were less confident in knowing what legal documents are necessary to act on behalf of a family member for their medical care, and where a family member’s current legal documents are located. We posit that new care partners may have not yet realized their need for education on legal topics, and even those that realize the need may not know where and how to initiate their education. In other words, new care partners may be particularly affected by the subthemes of information overload and process ambiguity observed in qualitative responses. Participants wondered where to go for legal help, what questions to ask, and how to activate the legal documents that they had in place. Participants who did find educational materials noted that many were dense, difficult to read, and sometimes incomplete, meaning that they provided some but not all the legal information needed. It is vital that legal planning interventions target those who are relatively early in their care partner journey to alleviate this experience of confusion and overwhelm.

Previous research has indicated that lower-income care partners experience higher burden (Andrén & Elmståhl, 2007). Our results build on this research by suggesting that lower-income care partners (i.e., earning less than $40,000 annually) may be less confident in legal planning than higher-income care partners (earning more than $100,000 annually). Lower-income care partners were significantly less confident in knowing where a family member’s current legal documents are located, what legal documents are necessary to manage a family member’s finances, and how to use the legal documents to act on behalf of a family member’s medical care or manage finances. It is possible that these differences occur because lower-income care partners are unable to afford professional legal help. Working with an elder law attorney, for example, can cost thousands of dollars (Hipp, 2023). Further, given that people tend to live near others of the same financial status (Fry & Taylor, 2012), lower-income care partners may have less access to informal education on legal planning (i.e., education from family or friends). It is thus especially important to make legal planning support available for little or no cost, so that it is accessible to care partners at all income levels. There is currently an opportunity and a need for digital educational interventions for care partners of persons living with dementia (Folder et al., 2023). Low-cost, digital legal interventions may take the form of mobile applications that offer location-specific legal planning education and support for legal action (Jolliff et al., 2023). Further, aging and disability resource centers already facilitate access to practical and emotional support for care partners; state and federal dollars should be directed toward equipping centers like these with legal planning information that they can disseminate at no cost to care partners (Greenfield, 2012).

Last, our qualitative results highlight the need for legal planning interventions to meet the needs of care partners with different sociocultural identities. This aligns with the ACL’s National Strategy to Support Family Caregivers (2022), which emphasizes providing culturally competent services. Culturally competent services may be, for example, provided in the recipient’s native language, directed toward the type of family caregiver common within a community or culture, and aligned with cultural values. In the present study, one care partner noted that legal planning was “extremely hard” because she was the child of immigrants. Her father, for whom she was the care partner, was presumably less familiar with the United States legal system, and therefore may not have accessed or understood location-specific legal planning tasks. Another care partner noted that most legal planning materials target older care partners and persons living with dementia. Meanwhile, her husband had been diagnosed with Alzheimer’s disease in his 40s. This care partner likely faced the problem of less informal education, as her same-aged peers were less likely to be involved in legal planning. It is vital for existing legal planning education to be tested for fit and relevance among diverse groups of care partners.

Strengths and Limitations

The mixed-methods nature of this study is a strength. The quantitative data point to some of the legal planning topics in which care partners felt most and least confident, whereas the qualitative data provide a more nuanced understanding of legal planning dilemmas. However, this study also had limitations. First, the nature of our recruitment strategy meant that a response rate was not possible to determine; more research is needed into how to meaningfully calculate a response rate when using social media-based recruitment. Second, our questions inquired about care partners’ confidence in performing legal planning tasks. Confidence is similar but not identical to care partner skill or knowledge, which may be another important measure to inform legal planning interventions. Third, one survey item asked about care partners’ confidence in “where a family member’s current legal documents are located,” which presupposes that legal documents had been filled out. Care partners who had not completed legal documents may have been unsure as to how to rank their confidence in the location of legal documents, and thus results associated with this item should be interpreted with caution. Fourth, our question regarding the stage of dementia, and the definitions of each stage provided, were not based on a validated clinical scale. Future work should incorporate validated assessments of dementia stage to enhance accuracy of reporting and conclusions drawn (Olde Rikkert et al., 2011). Fifth, and perhaps most importantly, our data may not be generalizable to all care partners (Family Caregiver Alliance, 2016). We did not inquire about sexual orientation, and our sample was disproportionately White. Our screening materials asked participants if they were “providing unpaid care … because of a memory challenge related to Alzheimer’s Disease or related dementias.” This phrasing may have left out people who demonstrate dementia symptoms but have not been diagnosed, a position that disproportionately affects Black and Latino care partners in the United States (Amjad et al., 2018; Gianattasio et al., 2019). Future dementia research may wish to screen participants based on symptoms (e.g., memory loss, confusion, mood changes) rather than diagnosis to avoid a disproportionately White sample. Although we uncovered differences related to experience, income, and relationship to the person living with dementia, there are other sociocultural factors that may affect confidence in legal planning, such as being in romantic partnership with a person living with dementia as a sexual or gender minority (Poteat et al., 2023).

Conclusions

Despite the substantial body of research on caregiving for persons living with dementia (Gilhooly et al., 2016), the present study was among the first to examine care partners’ confidence in legal planning—a commonly overlooked but crucial task. We identified specific legal planning tasks in which our sample felt more confident, as well as areas in which care partners felt less confident. We also identified legal planning tasks that are particularly unfamiliar to newer and lower-income care partners. These results represent “Stage 0” of the National Institutes of Health’s stage model of behavioral intervention development, in that they lay a foundation for better understanding legal confidence among care partners (National Institute on Aging, n.d). This foundation can be used to inform stages 1A and 1B, in which legal planning interventions may be developed and tested. Future “Stage 0” research should work to better understand the knowledge gaps of newer and lower-income care partners, as well as those of other care partners with unique sociocultural identities. Further, organizations that serve as care partners of persons living with dementia should work to maximize the clarity and comprehensiveness of legal planning education.

Funding

This work was supported by the National Institute on Aging of the National Institutes of Health [grant number R44AG074128]. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Conflict of Interest

C. Elliott is the CEO and Founder of Whiplash Technology and developed CareVirtue. M. Zuraw is the Caregiver Support Officer for Whiplash Technology and supported development of CareVirtue. M. Zuraw is also an Associate for HFC, which is a 501c3 with the mission of Bringing Light to Alzheimer’s, and is a member of the Alzheimer’s Impact Movement, which is an advocacy affiliate of the Alzheimer’s Association.

Data Availability

The study reported in this manuscript was not preregistered, and the data that support the findings are not openly available due to reasons of sensitivity. Data are located on a securely controlled platform at the University of Wisconsin–Madison and are available from the corresponding author upon reasonable request. The analysis plan described in this research was not preregistered with an independent, institutional registry. Sharing of these data is not approved by the relevant IRB. However, to inquire about other materials, please e-mail the corresponding author at [email protected]

Acknowledgments

The authors would like to gratefully acknowledge the care partners who participated in this study and the organizations that supported recruitment.

Author Contributions

Anna Jolliff (Formal analysis [Equal], Writing – original draft [Lead]), Beth Fields (Conceptualization [Equal], Writing – original draft [Supporting], Writing – review & editing [Equal]), Justin Boutilier (Formal analysis [Equal], Writing – review & editing [Equal]), Alex Dudek (Formal analysis [Equal]), Christian Elliott (Conceptualization [Equal], Funding acquisition [Equal], Writing – review & editing [Supporting]), Matthew Zuraw (Conceptualization [Equal], Funding acquisition [Equal], Writing – review & editing [Supporting]), and Nicole Werner (Conceptualization [Equal], Funding acquisition [Equal], Writing – review & editing [Equal]).

References