Exploring confidence in financial planning topics among care partners of persons living with dementia

Abstract

Objective:

Care partners of persons living with dementia perform significant financial planning in partnership with the person for whom they care. However, research is scarce on care partners’ confidence and experiences with financial planning. The purpose of this study was, first, to quantify care partners’ confidence across different financial planning topics. We sought to understand whether income, education, relationship type, and years of experience are related to care partners’ level of confidence in financial planning. Second, we sought to better understand the reasons for these confidence ratings by examining care partners’ experiences of financial planning.

Methods:

We conducted an online survey that asked a combination of quantitative and qualitative questions to understand care partners’ confidence and experiences with financial planning. Participants were nationally recruited care partners of persons living with dementia. Multivariate linear regression was used to understand different subgroups’ levels of confidence in each financial planning topic. Inductive thematic analysis was used to understand qualitative data.

Results:

The financial planning topics in which participants (N = 318) felt the least confident were: options when there is not enough money to provide care; tax deductions available to cut care costs; and sources of money from government programs for which the care recipient is eligible. Differences in confidence were observed among care partners with lower incomes, less experience, and caring for a parent. Qualitatively, participants described the challenges of care budgeting and protecting personal finances; confusion about long-term care insurance and accessing resources; and, among confident care partners, reasons for this sense of preparedness.

Conclusions:

These results underscore the need for tailored interventions and technologies that increase care partners’ confidence in specific aspects of financial planning, including long-term care insurance, available financial support, and what to do when money runs out.

Introduction

Care partners of persons living with dementia perform significant financial planning in partnership with the person for whom they care. Care partners are defined as family members or friends who join with the person living with dementia to make decisions regarding all aspects of their care. The term “care partner” is used instead of “caregiver” to reflect that the relationship is a partnership in which the person living with dementia plays an important contributing role (Jeste et al., 2021). For care partners, confidence in financial planning refers to the feeling that they can adequately perform the necessary or beneficial financial activities required by their role, such as budgeting for the costs of in-home nursing and long-term care facilities; managing the care recipient’s bank accounts, investment decisions, and personal assets; and seeking out resources on behalf of the care recipient (e.g., Medicare, SSI, and private insurance) to supplement the cost of care (Alzheimer’s Association, 2023). Myriad studies have suggested that confidence in one’s own financial knowledge is predictive of proactive financial decisions such as saving, investing, and having a retirement plan (Chen & Chen, 2023; Van Rooij et al., 2012; Yeh & Ling, 2022). However, research on care partners’ experiences with financial planning on behalf of person living with dementia, as well as the specific financial planning topics with which care partners lack confidence, is in its nascent stage (Fan et al., 2023; Jolliff et al., 2023a; Qiu et al., 2024). Further, little is known about the subgroups of care partners who may need financial planning assistance. Certain types of dementia, as well as specific sociodemographic factors, may influence the need for care partner support (Giannouli et al., 2019; Giannouli & Tsolaki, 2022a, 2022b). Gathering this information is a vital first step to ultimately building, testing, and disseminating interventions that support all care partners in the process of financial planning (U.S. Department of Health and Human Services, n.d).

Previous research has shown that lower-income care partners of persons living with dementia indicate higher distress (Alhasan et al., 2021). For these lower-income care partners, financial planning may be a particularly daunting task. Qualitative research on care partners highlights the significant challenge of finding affordable care (Bernstein et al., 2019; Fan et al., 2023). Budgeting for future costs may feel like an inaccessible or pointless task for those who struggle to cover daily costs and who do not have money to set aside. Further, lower-income care partners may not have access to educational financial planning resources or financial advisors (DaDalt et al., 2016). While government programs like Medicaid may help cover long-term care for care recipients (Alzheimer’s Association, 2023), understanding and navigating program requirements is confusing for care partners (Waymouth et al., 2023). It is vital to understand the degree to which lower-income care partners feel prepared to complete financial planning, as well as the specific financial planning topics with which they need assistance.

In addition to care partners’ level of income, their level of education may also influence confidence in financial planning topics. Previous research demonstrates that higher education levels have been associated with lower care partner burden (Chiao et al., 2015). This may be because education affords care partners greater familiarity with the disease, including what they can realistically expect from care recipients and from themselves as care partners (Hepburn et al., 2001). However, it also may be that the effects attributed to education are better attributed to income, as income and education are positively correlated (National Center for Educational Statistics, 2023). It may be that well-educated care partners are also higher earners, and thereby have more resources at their disposal to reduce burden (Andrén & Elmståhl, 2007). Further, while a negative relationship between education and burden has been identified, little research has examined the effect of education level on care partner confidence with financial planning. Previous research has demonstrated a positive association between education level and financial literacy (Lusardi & Mitchell, 2014; Marcolin & Abraham, 2006). It may be that learning environments, such as high school and college, transmit direct knowledge (e.g., through financial education coursework) or tacit knowledge (e.g., through socialization with peers) that increases individuals’ financial planning confidence (Kaiser & Menkhoff, 2017; Mohammed Esmail Alekam et al., 2018).

Another factor that may influence confidence in financial planning is the type of relationship (e.g., spouse, child) to the person living with dementia. Previous research has suggested that those caring for spouse versus a parent do report different experiences of many different aspects of caregiving (Chan et al., 2013; Liu, 2021; Meuser & Marwit, 2001; Rigby et al., 2019). One systematic review found that spousal care partners are at greater risk of grief (Chan et al., 2013). While one study found that care partners of parents report greater burden (Rigby et al., 2019), another suggested that it is spouses who experience greater burden (Liu, 2021). Other research suggests that care partners of parents experience greater denial, and spousal care partners feel more acceptance (Meuser & Marwit, 2001). It is possible that the burden of financial planning in particular is more acute for care partners of parents than spousal care partners (Qiu et al., 2024). Care partners of parents may know less than spousal care partners about the care recipient’s financial history and standings, and may encounter additional hurdles gaining access to their parent’s financial information (e.g. bank accounts, retirement accounts, or insurance policies) (Qiu et al., 2024).

A fourth factor that may influence confidence in financial planning is years of caregiving experience. Previous research has shown that the qualitative experience of caregiving evolves over time (Meuser & Marwit, 2001). The psychological impact of caregiving soon after diagnosis is different from that in the later stages of the disease, as are the caregiving responsibilities (Meuser & Marwit, 2001; Pérez-González et al., 2021). Previous research has shown that those caring for someone in the advanced stages of dementia score higher in grief than those caring for someone in the earlier stages (Meuser & Marwit. 2001). Care partners who have been providing care for longer have also scored more highly on burden (Pérez-González et al., 2021). However, while the emotional impact of caregiving may increase over time, so too might a care partner’s knowledge of and confidence in financial planning (DaDalt et al., 2016). In previous research, care partners described having little background knowledge about financial planning prior to taking on the care partner role, and rather taking a “learn-as-you-go” and “learn from others” approach (Qiu et al., 2024, n.p.). Thus, those with more years of experience may have acquired more knowledge and confidence (Qiu et al., 2024). In order to develop and deliver timely financial planning interventions, is vital to understand the types of financial planning information needed by those earlier versus later in the care partner journey.

While the body of research on care partners’ needs and experiences has grown significantly, literature on care partners’ confidence in and experiences with financial planning is scarce. The purpose of this study was, first, to quantify care partners’ relative confidence across different financial planning topics. We sought to understand whether income, education, relationship type, and years of caregiving experience were related to care partner’ level of confidence with financial planning. We predicted that lower-income, less-educated, and less-experienced care partners would report less financial planning confidence, as would care partners of parents compared to spousal care partners. Second, we sought to better understand the reasons for these confidence ratings by examining care partners’ qualitative experiences of financial planning. Findings from this research may help technologists, community support agencies, and policy makers to better understand the areas in which care partners most need financial planning education and intervention. This goal is consistent with the fourth objective of the Administration for Community Living’s 2022 National Strategy to Support Family Caregivers, which articulates the importance of creating educational tools to support financial security for family care partners (Administration for Community Living, 2022).

Methods

Design and participants

Researchers from Indiana University and University of Wisconsin – Madison partnered with a strategic advisory board to distribute a survey with quantitative and qualitative data elements (Creswell & Plano Clark, 2011). Advisory board members (N = 7) included individuals with expertise in elder law, financial planning, geriatric medicine, caregiving for people living with dementia, adult education, and community outreach for dementia health disparity populations. The research team was multidisciplinary, including experts in human factors engineering, nursing, counseling psychology, dementia caregiving, and dementia care interventions. To our knowledge, there is no existing measure of financial planning confidence for care partners of persons living with dementia. Therefore, the research team collaborated with the advisory board to develop a survey that included both quantitative and qualitative questions pertaining to confidence in financial and legal planning for this specific population. The term “confidence” was used as a proxy for financial self-efficacy and subjective financial literacy, which are shown to be predictive of positive financial planning behaviors and coping well with financial stress (Chen & Chen, 2023; Lown, 2011). Results from the legal planning portion are reported elsewhere (Jolliff et al., 2023b). This design was selected by the team because the combination of quantitative and qualitative data, collected simultaneously, was expected to best meet the research objectives, and one type of data was not expected to outweigh the other in importance. Throughout the study, the team referred to the Mixed Methods Appraisal Tool (Hong et al., 2018) to help ensure methodological quality. This study was approved by the University of Wisconsin - Madison Institutional Review Board.

Participants were people who identified themselves as the care partner of someone living with dementia. Being a care partner was defined for participants as 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. Inclusion criteria included living in the United States, being at least 18 years of age, and speaking English. After participants confirmed that they met inclusion criteria, they were presented with the informed consent document. Consenting participants proceeded with the survey. Participants who completed the survey were automatically redirected to a second survey in which they entered their email address to receive the financial incentive, which was a $20 Amazon gift card.

Data collection

The research team partnered with community organizations to distribute the survey via social media (Twitter, Facebook). Community organizations also reached out to potential participants through their e-mail-based mailing lists. The survey was open to responses between March and June of 2022. Because of the high potential for surveys with financial incentives to be completed by bots or bad actors, response collection was intermittently paused to evaluate data quality (Bybee et al., 2022; Pozzar et al., 2020). See Supplemental Table 1 for steps taken to prevent fraudulent responses and evaluate the quality of data.

Measures

The survey consisted of 12 financial planning topics, developed with the study advisory board, which were translated into survey items. Participants were asked to rate their confidence in financial planning topics, on a scale of 1 (not at all confident) to 5 (extremely confident). One example financial planning question was, “How confident are you in knowing what tax deductions are available to cut care costs?” Another example question was, “How confident are you in knowing the options when there is not enough money to provide care?” In addition, the survey asked two open-ended financial planning questions: “What money, budget, and finance topics do you need the most help with right now?” and “What other money, budget, and finance questions or topics that we have not asked about are important to you?” See Supplemental File 1 for the list of 12 financial planning topics and response options.

The survey also requested demographic information (six questions) and information pertaining to caregiving (seven questions). Care partners were asked about their gender, age, race, ethnicity, education level, zip code (to determine rurality), household income, and relationship to the person living with dementia. Care partners also reported whether they or someone else identify as the primary care partner; the number of other people who help them care for the person living with dementia; the number of years that they had spent caregiving for any person with dementia; and the care recipient’s stage of dementia (early, middle, or late). The Alzheimer’s Association’s definitions of each dementia stage were provided to help care partners answer this question (Alzheimer’s Association, 2023).

Data analysis

Quantitative analyses were performed with Python 3.8 (Van Rossum & Drake, 2009,van Rossum & Drake, 2009). Descriptive statistics were used to summarize the demographic characteristics of the sample and to ascertain mean confidence ratings for each financial planning topic. Rural-Urban Commuting Area Codes (RUCA codes) were used to determine whether a participant lived in an urban or more rural area. The U.S. Census Bureau’s 2021 report of income in the United States was used to divide participants into thirds representative of the US population (<40k, 40k–100k, >100k). Education level was divided into three categories: high school or less; college, technical, or vocational school; and post-graduate education. Relationship to the person living with dementia was also divided into three categories: care partners caring for a parent, those caring for a spouse or partner, and a third category to represent any other type of relationship (grandparent, other type of relative, friend, or “other”). Time spent caregiving was divided into <2 years, 2–4 years, and >4 years. p-values below 0.05 were considered statistically significant.

For each predictor variable, including income, education, relationship to the person living with dementia, and years of caregiving experience, the Kruskal Wallis test was first used to determine if there was a statistically significant difference between the three levels. Where a significant difference was found, the Conover-Iman test with Holm adjustment was used to determine the pairwise p-values (Ohlendorf et al., 2017).

Multivariate linear regression was used to understand the relationship between the predictor variables and confidence in each financial planning topic, while controlling for the other predictor variables and the following characteristics: gender, age, race, stage of dementia, number of people helping the care partner, and rurality. Multivariate linear regression was selected because there were multiple independent variables, and the sample size was not large enough to train multiple discrete models. Because each predictor variable was categorical, the following reference variables were selected: <40k for income; high school or less for education; care partners of parents for relationship type; and <2 years for years of experience.

The multidisciplinary data analytic team performed a qualitative, inductive thematic analysis (Perski et al., 2017). All text-based responses relating to the study purpose of understanding reasons for confidence (or lack thereof) in financial planning were coded. Two coders (AJ, AD) separately familiarized themselves with the data and began to identify initial concepts, or codes. Coders then met to discuss their initial codes and build the codebook. These codes were then retroactively applied to the data analyzed thus far, and then applied in all coding going forward. The two coders continued to meet weekly throughout data analysis to discuss emergent codes and to refine codebook. The two coders then organized the codes into themes, which cut across groups of codes. The codebook and cross-cutting themes were discussed and refined with two senior research team members (NW, BF). Disagreements were resolved through consensus discussion until agreement on final themes was reached. Last, one coder reviewed the dataset for deviant cases or cases that contradicted identified themes (Mays & Pope, 2000). Because all participant data were collected anonymously, member checking was not possible. The intermediary codebook used to develop final themes can be accessed in Supplemental File 3, Table 2.

Table 2.

Average confidence scores for each financial topic overall, by income, education, relationship type, and by years of caregiving experience.

Characteristic	Q1	Q2	Q3	Q4	Q5	Q6	Q7	Q8	Q9	Q10	Q11	Q12	Overall mean	Overall SD
Mean confidence	2.88	4.07	3.86	2.69	2.86	2.05	2.51	2.82	3.25	2.88	2.33	2.72	2.91	.58
Standard deviation	1.33	1.17	1.37	1.41	1.41	1.27	1.31	1.43	1.35	1.33	1.37	1.35	1.34
Care partner annual income (in thousands of USD)
<40	2.48	3.90	3.44	2.71	2.94	1.96	2.58	2.52	3.04	2.67	2.06	2.52	2.73	0.54
40 – 100	2.93	4.00	3.76	2.63	2.81	2.15	2.55	2.88	3.21	2.94	2.36	2.84	2.92	0.53
>100	3.13	4.29	4.21	2.99	3.13	2.01	2.54	3.07	3.57	3.01	2.60	2.79	3.11	0.66
No answer	2.76	4.16	4.22	2.41	2.43	1.81	2.19	2.49	3.03	2.68	2.00	2.32	2.71	0.76
Kruskal-Wallis p-value	0.02*	0.15	0.02*	0.21	0.28	0.63	0.94	0.12	0.05	0.35	0.19	0.34	0.16
Difference between <40 and 40–100	0.45	0.10	0.32	−0.08	−0.13	0.19	−0.03	0.36	0.17	0.27	0.30	0.32	0.19
Difference between 40–100 and >100	0.20	0.29	0.45	0.36	0.32	−0.14	−0.01	0.19	0.36	0.08	0.24	−0.05	0.19
Difference between <40 and >100	0.65*	0.40	0.77*	0.28	0.19	0.06	−0.04	0.55	0.53	0.35	0.53	0.27	0.38
Years of caregiving experience
<2	2.74	3.73	3.35	2.51	2.58	2.06	2.35	2.48	2.90	2.47	2.20	2.52	2.6564	0.47
2–4	3.00	3.93	3.79	2.76	3.03	2.09	2.46	2.81	3.38	3.06	2.23	2.63	2.9292	0.57
>4	2.90	4.32	4.17	2.76	2.91	2.03	2.62	3.01	3.36	3.01	2.45	2.88	3.0334	0.65
Kruskal-Wallis p-value	0.45	0.00***	0.00***	0.46	0.11	0.71	0.41	0.03*	0.02*	0.00**	0.50	0.16	0.01*
Difference between <2 and 2–4	0.26	0.20	0.44	0.26	0.44	0.03	0.12	0.33	0.47*	0.59*	0.03	0.11	0.27
Difference between 2–4 and >4	−0.10	0.39*	0.38	0.00	−0.11	−0.06	0.16	0.19	−0.02	−0.06	0.22	0.25	0.10
Difference between <2 and >4	0.16	0.59***	0.83***	0.25	0.33	−0.04	0.28	0.52*	0.46*	0.54*	0.25	0.36	0.38*
Relationship to person living with dementia
Child CP	2.94	3.84	3.78	2.68	2.84	1.98	2.41	2.66	3.10	2.70	2.34	2.60	2.82
Spousal CP	2.69	4.56	4.25	2.57	2.83	1.95	2.51	3.01	3.54	3.06	2.09	2.79	2.99
Other	3.15	3.83	3.23	3.08	3.00	2.60	2.95	3.05	3.15	3.23	2.90	3.10	3.10
Kruskal-Wallis p-value	0.12	0.00***	0.00***	0.14	0.78	0.02*	0.07	0.11	0.02*	0.02*	0.01*	0.1088	0.2511
Difference between care partner of parent versus spouse	−0.25	0.72***	0.47**	−0.11	0.00	−0.03	0.10	0.35	0.44	0.35	−0.25	0.20	0.16
Difference between care partners of spouse versus other	−0.46	0.73***	1.03***	−0.51	−0.17	−0.65*	−0.44	−0.04	0.39	−0.17	−0.81*	−0.31	−0.12
Difference between care partners of parent versus other	−0.21	0.02	0.56*	−0.39	−0.16	−0.62*	−0.54	−0.39	−0.05	−0.52	−0.56	−0.50	−0.28
Education
High school diploma or less	2.55	4.68	4.00	2.58	3.10	1.97	2.35	3.13	3.13	2.94	2.32	2.74	2.96	0.75
4-year college	2.93	3.88	3.74	2.66	2.82	2.11	2.60	2.78	3.22	2.88	2.39	2.80	2.90	0.51
Post-college	2.90	4.27	4.09	2.80	2.85	1.96	2.38	2.81	3.33	2.87	2.20	2.56	2.92	0.69
Kruskal Wallace p-value	0.34	0.00***	0.06	0.67	0.63	0.56	0.29	0.45	0.71	0.97	0.55	0.36	0.94	0.34
Difference between high school and college	0.38	−0.80***	−0.26	0.08	−0.28	0.14	0.25	−0.35	0.09	−0.05	0.07	0.06	−0.06
Difference between college and post-college	−0.02	0.39*	0.35	0.13	0.03	−0.15	−0.22	0.03	0.11	−0.01	−0.19	−0.23	0.02
Difference between high school and post-college	0.36	−0.41	0.09	0.22	−0.25	−0.01	0.03	−0.32	0.20	−0.06	−0.12	−0.18	−0.04

^{- *}p < .05, two-tailed.

^{- **}p < .01, two-tailed.

^{- ***}p < .001, two-tailed.

- Note. Response options were 1 (not at all confident); 2 (slightly confident); 3 (somewhat confident); 4 (fairly confident) to 5 (extremely confident).

- Survey items were as follows.

- Q1: if there will be enough money to provide care.

- Q2: the location of a family member’s financial accounts.

- Q3: if a family member has been working with a financial planner or other financial professional.

- Q4: if family members or friends can be paid for caregiving.

- Q5: how caregiving may impact your own finances.

- Q6: what tax deductions are available to cut care costs.

- Q7: about sources of money from government programs that a family member is eligible for such as Veterans Affairs and Military Benefits, Social Security Disability, etc.

- Q8: about sources of money from life and long term care insurance policies.

- Q9: about sources of money from retirement accounts.

- Q10: about care budgeting and planning.

- Q11: the options when there is not enough money to provide care.

- Q12: the differences between Medicare, Medicare Advantage, and Medicaid programs (eligibility, benefits, providers, costs, etc.).

Results

Sample characteristics

A total of 318 care partners completed the survey. Care partners were 78% female, an average of 53 years old (SD = 15.3), 21% rural, and 66% had obtained at least a four-year college degree. Care partners were 81% white, 7% Hispanic or Latino, and 7% Black or African American, 3% Asian, 1% Native American or American Indian, less than 1% Native Hawaiian or Pacific Islander, and 1% identified with an unspecified race. The majority (74%) of care partners identified as the care recipient’s primary care partner, and about half (51%) had been a care partner for four years or fewer. Fifty-six percent of care recipients were parents (42% mother, 14% father), 32% were partners (9% wife, 23% husband), and 12.6% were someone else (e.g. friend, grandparent, or other relative). Table 1 provides descriptive statistics for the care partners and care recipients.

Table 1.

Characteristics of care partners and persons living with dementia.

Characteristics		No. (%) or mean (SD)
Gender	Female	248 (78.0)
	Male	67 (21.1)
	Other	0
	Don’t wish to answer	3 (0.9)
Age		53.3 (15.3)
Relationship of person living with dementia	Mother or mother-in-law	133 (41.8)
	Father or father-in-law	43 (13.5)
	Wife/partner	29 (9.1)
	Husband/partner	73 (23.0)
	Grandparent	18 (5.7)
	Other relative	10 (3.1)
	Friend	7 (2.2)
	Other	5 (1.6)
Stage of person living with dementiaa	Early	69 (21.7)
	Middle	161 (50.6)
	Late	88 (27.7)
Location of person living with dementia (time taken by care partner to drive to their house)	In house	191 (60.0)
	<20 min	79 (24.8)
	20–60 min	30 (9.4)
	1–2 hours	9 (2.8)
	>2 hours	9 (2.8)
Race/Ethnicityb	White	257 (80.8)
	Hispanic or Latinx	23 (7.2)
	Black or African American	21 (6.6)
	Asian	9 (2.8)
	Native American or American Indian	4 (1.3)
	Native Hawaiian or Pacific Islander	1 (0.3)
	Other	3 (0.9)
Education	4-year college	115 (36.2)
	Post-college	94 (30.0)
	Technical school, vocational training, community college	78 (24.5)
	High school diploma or equivalent	30 (9.4)
	None or some high school	1 (0.3)
Location	Rural	68 (21.4)
	Urban	247 (77.7)
	Erroneous	3 (0.01)
Annual income (in thousands of USD)	<20	8 (2.5)
	20–39	40 (12.5)
	40–59	47 (14.8)
	60–79	58 (18.2)
	80–99	56 (17.6)
	>100	72 (22.6)
	No answer	37 (11.6)
Primary care partner	I Am	236 (74.2)
	Someone else	46 (14.5)
	Shared equally	36 (11.3)
Number of care partners		1.49 (1.61)
Years caregiving		5.81 (5.75)
Years caregiving	<=2	81 (25.4)
	2–4	80 (25.2)
	>4	157 (49.4)

^aParticipants were provided definitions of each stage consistent with those of the Alzheimer’s Association (2023).

^bParticipants could select more than one race or ethnicity.

Quantitative results

Confidence in financial planning topics.

The three topics in which participants overall felt most confident were: the location of a family member’s financial accounts (M = 4.07, SD = 1.17); whether a family member has been working with a financial planner or other financial professional (M = 3.86, SD = 1.37); and about sources of money from retirement accounts (M = 3.25, SD = 1.35). In contrast, the three topics in which participants felt the least confident were: what tax deductions are available to cut care costs (M = 2.05, SD = 1.27); the options when there is not enough money to provide care (M = 2.33, SD = 1.37); and about sources of money from government programs for which a family member is eligible (M = 2.51, SD = 1.31). Table 2 displays the average confidence rating for all financial planning topics.

Relationship between financial planning confidence and care partner income.

Multivariate linear regression demonstrated significant differences in financial planning confidence based on income. For the topic “if there will be enough money to provide care,” the results of the regression indicated the 22 predictors explained 8.36% of the variance (R² = .08, F (295) = 1.22, p = .23). Lower-income care partners reported less confidence than their middle income (β = .45, p < .05) and higher income (β = .65, p < .05) counterparts. For the topic “about sources of money from life and long-term care insurance policies,” 22 predictors explained 9.26% of the variance (R² = .09, F (295) = 1.37, p = .13). For “the options when there is not enough money to provide care,” 22 predictors explained 12.75% of the variance (R² = .13, F (295) = 1.96, p < .05). For both topics, lower-income care partners reported less confidence than their higher income counterparts (β = .57, p < .05; β = .69, p < .05, respectively). Table 2 provides comparisons of the mean confidence for each financial planning topic across the three levels of income.

Relationship between financial planning confidence and care partner education.

For the topic, “the location of a family member’s financial accounts,” 22 predictors explained 24.79% of the variance (R² = .25, F (295) = 4.42, p < .001). People with lower education reported significantly higher confidence than their moderate-education peers (β = .49, p < .05). No further differences based on education were found. Table 2 provides comparisons of the mean confidence for each financial planning topic across the three levels of education.

Relationship between financial planning confidence and relationship to care recipient.

Multivariate linear regression revealed differences in financial planning confidence between care partners of parents and spousal care partners. For the topic, “about sources of money from government programs that a family member is eligible for,” 22 predictors explained 10.53% of the variance (R² = .11, F (295) = 1.58,p = .05). For this topic, care partners of parents were less confident than spousal care partners (2.41 vs. 2.51, β = .47, p < .05). For the topics, “what tax deductions are available to cut care costs,” “about care budgeting and planning,” “the options when there is not enough money to provide care,” and “the differences between Medicare, Medicare Advantage, and the Medicaid programs,” 22 predictors explained 19.11%, 13.34%, 12.75%, and 12.61% of the variance, respectively (R² = .19, F (295) = 3.17, p < .001; R² = .12, F (295) = 2.06, p < .001; R² = .13, F (295) = 1.96, p < .05; and R² = .13, F (295) = 1.93, p < .05). For each of these four topics, care partners of parents were less confident than those with an “other” relationship to the person living with dementia (β = .53, p < .05; β = .59, p < .05; β = .53, p < .05; β = .56, p < .05). Table 2 provides comparisons of the mean confidence for each financial planning topic across the three relationship types.

Relationship between financial planning confidence and years of experience.

For the topic, “if a family member has been working with a financial planner or other financial professional,” the results of the regression indicated that 22 predictors explained 21.28% of the variance (R² = .21, F (295) = 3.60), p=<.001). For five financial planning topics, less experienced care partners (<2 years) were significantly less confident than their highly experienced counterparts (>4 years): “if a family member has been working with a financial planner or other professional” (β = .16; p < .05); “about sources of money from government programs that a family member is eligible for” (β = .15, p < .05); “about sources of money from life and long-term care insurance policies” (β = .1; p < .05); the options when there is not enough money to provide care (β = .14, p < .05); and “the differences between Medicare, Medicare Advantage, and the Medicaid programs” (β = .16, p < .05). For the topics “how caregiving may impact your own finances” and “about care budgeting and planning,” the 22 predictors explained 10.20% and 13.34% of the variance, respectively (R² = .10, F (295) = 1.52, p = .06; R² = .13, F (295) = 2.06, p < .001). For these topics, less experienced care partners were less confident than moderately experienced care partners (β = .28, p < .05; β = .35, p < .01) and highly experienced care partners (β = .15; p < .05; β = .21, p= <.01). Table 2 provides comparisons of the mean confidence for each financial planning topic across the three levels of experience.

Qualitative results

Qualitative analyses of participants’ free-text responses yielded five themes that helped to explain confidence (and lack thereof) in financial planning: uncertainty in budgeting for care; confusion around long-term care insurance; challenge of protecting personal finances; ambiguity about additional resources; and feeling prepared for the future. Themes are described below with illustrative quotes from the data. Supplemental Table 3 integrates and interprets the quantitative and qualitative data, highlighting their points of convergence and divergence (Hong et al., 2018).

Theme 1: Uncertainty in budgeting for care.

Participants expressed uncertainty over how to budget for care, including how to best use the remaining resources of the person living with dementia. One participant shared that budgeting was a top concern due to the care recipient’s anxieties: “Money is not a problem, but my dad worries about running out… I need someone to be able to budget with him.” In contrast, for other participants, fear of running out of money was warranted. Care partners noted how quickly long-term care facilities can “eat up” retirement savings and commented that these facilities “are not forthcoming on what they cost.” For some participants, the budgeting dilemma outlasted the care recipient’s life. One participant, whose father had borrowed against his life insurance policy, wondered, “Will we have anything to bury him with?” Care partners wondered how to simultaneously budget for the care recipient and save enough money for their own long-term care needs.

Theme 2: confusion around long-term care insurance.

Participants were confused by many aspects of long-term care insurance. They wondered about whether to buy it, when to buy it, how to buy it, and when to use it. One participant described the dilemma of choosing an insurance option: “How to differentiate between the various disadvantage [sic] of each health insurance.” Participants who had already selected a long-term care policy did not know whether they could or should use it for in-home care. One care partner described the conundrum as such: “Knowing when to implement the Long Term Care policy, and whether to use it for in-home care or save it for residential care if that time comes.” Another participant, caring for a parent, wondered if they could use long term care insurance to reimburse themselves for care: “I would like to know if we are able to be reimbursed for some significant and ongoing caregiving expenses through my Mom’s long term care insurance.” Participants with long-term care insurance wondered how much of the care recipient’s care would be covered: “What if there is not enough long term care [insurance] available financially to care for the person. Suppose it runs out – then what?”

Theme 3: Challenge of protecting personal finances.

Care partners were aware that caring for the person living with dementia could affect them financially, but they lacked confidence in how to protect their own finances. Many spousal care partners wondered whether they could set aside resources for their own care in the future, or whether all resources must go towards the care recipient. One participant, who lived with and cared for her mother, found that her income had significantly reduced due to care responsibilities, and wondered whether she would have enough money to retire. According to this care partner, “I haven’t been able to work more than part-time due to all of my responsibilities with [my mother]. I constantly worry about how this is going to affect me since I can’t save anything or contribute to Social Security like I did while working full-time.” Other participants were aware that some care partners are paid (e.g., by a grant or by the care recipient) to provide care but were unsure how to actualize that arrangement for themselves. Said one care partner, “I take [the care recipient] to all doctors, etc. because she can no longer drive. I am disabled and low income, is it ok for me to have her pay for a tank of gas once in a while?”

Theme 4: Ambiguity of additional resources.

Care partners were often aware that resources existed, but they were unsure how to access them. For example, many participants had heard that tax credits and tax deductions are available for care partners but lacked any further knowledge. The following participant summed up this frequent quandary: “What types of governmental assistance is [sic] out there to help compensate family care partners?” Medicaid – including whether to apply, how to apply, and what it covers – was also a source of confusion. One care partner was aware that their state had a community-based Medicaid program “that would cover Adult Day Care and Respite expenses,” but they were unsure “if and how to apply.” Another care partner, whose spouse was a veteran, described both the general dilemma of determining eligibility and the peculiarities of navigating the Veterans Benefits administration: “VA benefits have been a challenge. Still trying to figure out if my member qualifies.” Another participant described the considerable emotional toll of searching for additional resources: “Resources are out there. At times they are hard to find. Once you do find them you get so excited and then the let down come [sic]; you find out that really know one [sic] can help.”

Theme 5: Feeling prepared for the future.

Not all care partners lacked confidence in financial planning. One participant noted that, despite the high cost of future care, they felt prepared to manage it: “We’re in good shape because we lived below our means and saved money.” Some participants felt more confident because the person living with dementia had told them directly how their finances ought to be managed. According to one care partner, the care recipient “shared all info with family so all are aware what money she had, where, and her wishes related to this.” Care partners who had not been prepared in this way by the person living with dementia sometimes taught themselves via online research and consultation with dementia care specialists. One care partner’s confidence in financial planning came through their profession, but they empathized with those without the same background: “I worked for the county in aging and disability. I feel for those without knowledge trying to manage the system…It is a nightmare.”

Discussion

The present study combined quantitative and qualitative data to understand the perspectives of care partners of persons living with dementia on financial planning. Care partners overall felt the least confident in knowing what tax deductions are available to them, sources of money from government programs, and what to do when there is not enough money to provide care. As hypothesized, we found that, for certain financial planning topics, care partners at lower income levels and with fewer years of caregiving experience reported less confidence than their higher-income and more-experienced peers. Further, care partner confidence varied based on relationship to the person living with dementia. Contrary to our hypotheses, care partners with less education expressed higher confidence than their moderately-educated peers regarding the location of a family member’s financial accounts. Reasons for this effect are unknown and may require additional investigation. The qualitative data shed light on some of the reasons that care partners feel confident in certain financial planning topics, including uncertainty in budgeting for care; confusion around long-term care insurance; the challenge of protecting personal finances; and the ambiguity of available resources. Other care partners described contributors to their feelings of confidence in financial planning. Combined, these findings may be used to develop interventions and technologies that increase care partners’ access to and confidence in financial planning (Administration for Community Living, 2022).

Participants in the present study attributed their confidence in financial planning to actions taken by the person living with dementia to share with them relevant financial information. This is consistent with previous research on care partners, which affirms the importance of being proactive in financial planning (DaDalt et al., 2016) and getting financial affairs in order while the person living with dementia still has capacity to participate in that process (Shafir et al., 2022). Our quantitative results demonstrate that care partners overall had higher confidence in information such as the location of financial and retirement accounts and whether the family member has consulted with a financial professional. However, for the latter topic, lower-income and less-experienced care partners were less confident than their peers, which aligns with existing findings that these subgroups of care partners may require intervention (Alhasan et al., 2021; DaDalt et al., 2016). Given the higher average confidence among care partners overall for this topic, it is possible that information such as whether the care recipient has been working with a financial professional is relatively easy to procure, and interventions for at-risk care partners may wish to target this topic.

Findings from the present study elucidate the broad range of financial planning topics with which care partners are confused and the subgroups of care partners who lack confidence. Our findings align with recent research that has documented care partners’ challenges with paying for dementia care (Fan et al., 2023) and shows that people find both the costs of care and the process of budgeting to be ambiguous (DaDalt et al., 2016). In our qualitative findings, participants were confused by every aspect of long-term care insurance, from whether to purchase it to when to use it to what to do if it ran out. In the quantitative findings, lower-income care partners and less-experienced care partners also reported less confidence about sources of money from long-term care insurance policies. Less experienced care partners were less confident in knowing how caregiving could impact their own finances. Care partners overall, but especially those who were lower-income, less experienced, or caring for parents, lacked confidence in knowing what their options would be if there was not enough money to provide care. These findings align with previous research suggesting that these subgroups of care partners require emotional (Alhasan et al., 2021; Meuser & Marwit, 2001; Rigby et al., 2019) and financial planning intervention (DaDalt et al., 2016; Qiu et al., 2024). The work of Hirschman and colleagues (2008) suggests that avoidance, both passive and active, may be a key reason for the uncertainty around the personal financial toll of caregiving or what to do if there is not enough money to provide care. In the present study, the prospect of running out of money may have been too troublesome for care partners to deeply consider; however, this avoidance precludes finding the answers that might build financial planning confidence and alleviate distress (Houston et al., 2019).

The present study added to what is known about the difficulties associated with accessing financial planning resources. Barriers identified in previous research were financial, geographic, and linguistic in nature (Alhasan et al., 2021). In the qualitative component of the present study, care partners emphasized the complexity of knowing what financial resources are available, to whom, and how to access them. In the quantitative component, care partners overall lacked confidence in knowing what tax deductions were available to cut care costs and sources of money from government programs. Care partners of parents and less experienced care partners lacked confidence regarding eligibility for government programs. Less experienced care partners also lacked confidence in knowing the differences between government programs, echoing previous research on the need for further education of this care partner subgroup (DaDalt et al., 2016). It may be that care partners of parents know less about government programs such as Medicare because they are younger, not yet eligible, and thus have not yet researched the Medicare program (Greenwald et al., 2006). Similarly, it may be that less-experienced care partners have had less time and opportunities to learn on the care recipient’s behalf about sources of money from government programs (Qiu et al., 2024).

Implications for intervention development

The findings of the present study have implications for intervention development. First, interventions targeted at care partners should prioritize sharing financial accounts and contact information of relevant professionals as “low-hanging fruit,” or actions that are relatively easy to do and have a big impact when done early in the care partner journey (Lankford, 2022). Second, interventions should clearly list care partners’ options when the person living with dementia can no longer afford their care, to address the common fear of running out of money. Third, interventions should provide support for planning for a financial future, including clear education on the costs and benefits of long-term care insurance, as it may be instrumental to avoiding the outcome of running out of money and protecting the care partner’s personal finances. Fourth, educational materials are needed that clearly state the resources available (e.g. state and federal tax breaks, grants), eligibility criteria, and the application process. Relatedly, it is imperative to increase the quantity, accessibility, and preparedness of care team navigators, state-level public benefits specialists, and other “point people” who can direct care partners towards programs for which they are eligible (Marani et al., 2023; Merrilees et al., 2020).

Limitations

This study had limitations. First, the majority of our sample (81%) identified as White. The needs of African American dementia care partners and Latino care partners, for example, are unique, driven both by cultural values (e.g., privacy, multigenerational living) and systemic racism (e.g., less access to community resources and health literacy, poor treatment in healthcare settings) (Bonds Johnson et al., 2022; Brewster et al., 2020; Rote et al., 2019; Samson et al., 2016; Wu et al., 2016). Future research may wish to measure cultural values and exposure to racism to better understand the relationship between race and financial planning confidence among care partners. Future studies should also use recruitment strategies that garner trust with groups previously mistreated in research settings in order to mitigate this barrier to participation (Shea et al., 2022). Second, for the predictor variable of years spent caregiving, the cutoff points (<2 years, 2–4 years, and >4 years) were selected arbitrarily. Third, although we used multiple supported strategies to clean the data of suspicious responses, we cannot be sure that the sample was free of bad actors (Bybee et al., 2022). Fourth, our survey asked about financial planning confidence, which may not reflect objective financial planning knowledge. Further, ours was not a validated and reliable measure of financial planning confidence for care partners, and to our knowledge no such measure exists. However, findings from this study could contribute to the development of a future measure. It will be important to distribute future measures of financial planning confidence among less-understood groups of care partners, including those caring for someone other than a spouse or parent; those who cohabitate with the care recipient, especially in contrast with those for whom the care recipient lives in a long-term care facility; those who identify as a secondary or tertiary care partner; and those care partners for whom the care recipient is not eligible for Medicaid or other government services.

Conclusion

The present study contributes to a small but growing body of literature on financial planning among care partners of persons living with dementia. We identified specific financial planning topics in which care partners overall feel less confident, including tax deductions available to them, sources of money from government programs, and what to do if money runs out, as well as specific concerns for care partners who are lower-income, less-experienced, and caring for parents. The quantitative and qualitative data both underscore the need for interventions that improve care partner understanding of long-term care insurance, forthrightly address the concern of running out of money, and help care partners to sift through any financial support that is available to them.

Supplementary Material

Supplemental material for this article is available online.

Biographies

Anna Jolliff, MS, LMHC, Anna Jolliff is a practicing licensed mental health counselor in the state of Washington, and a research coordinator in the Department of Health & Wellness Design at Indiana University – Bloomington. The focus of Anna’s research is to understand the experiences of care partners, including those caring for people living with dementia and those caring for children with medical complexity. Anna’s goal is to disseminate information about care partners’ strengths, strategies, and unmet needs.

Beth Fields, PhD, OTR/L, BCG, Beth Fields is an occupational therapist, assistant professor in the Department of Kinesiology, and affiliate faculty member in the Center for Aging Research and Education and Wisconsin Alzheimer’s Disease Research Center at the University of Wisconsin–Madison. Her research interests include caregiving, implementation of evidence-based programs, geriatric health services, aging in place and chronic conditions.

Justin Boutilier, PhD, Justin J. Boutilier is the Charles Ringrose Assistant Professor in the Department of Industrial and Systems Engineering at the University of Wisconsin-Madison. His research focuses on developing and applying actionable analytics to solve health and humanitarian problems. Justin received a B.Sc. in Mathematics and Statistics from Acadia University and a Ph.D. in Operations Research from the University of Toronto. Prior to joining the University of Wisconsin, he was a postdoctoral associate with the Humanitarian Supply Chain Lab and the Center for Transportation and Logistics at MIT.

Alex Dudek, MPH, RN, BSN (they/them), Alex Dudek is a public health nurse with experience using mixed methods in research related to dementia care, health communications, and systems engineering for patient safety.

Christian Elliott, BS, Christian Elliott specializes in creating better lives for family caregivers through the use of evidence-based technology. He is the Founder and CEO of CareVirtue, a caregiver support technology that enables the exchange of information, support, and education within family caregiver networks.

Matthew Zuraw, MBA, BS, Matthew Zuraw is an experienced business leader, researcher, and advocate for Alzheimer’s Disease (AD) and AD-Related Dementias. He has lived experience as a caregiver for his father who is living with AD. Matthew’s research expertise is in health and wellness design for caregivers of people living with AD/ADRD. He has a Lean Six Sigma Greenbelt Certification and has contributed to research in published articles in Journal of the American Medical Informatics Association and the Journal of Medical internet Research. He is the Chief Caregiving Officer for CareVirtue.

Nicole E. Werner, PhD, Nicole E. Werner is an associate professor in the Department of Health & Wellness Design at Indiana University – Bloomington. She is committed to transforming the health journey through human-centered sociotechnical system design to improve the health and well-being of older and vulnerable populations and their care partners. Her research program applies systems engineering principles to conduct research aimed at the human-centered discovery, design, evaluation, and implementation of translation-ready technology interventions. This work has included developing innovative approaches to user-centered design in community settings; employing novel concepts of care distribution; and engaging end-user representatives such as older adults, care partners, and community resource providers as active members of the design team.