“It shouldn’t be like this”: Family Caregivers Navigating Insurance for Family Members with Dementia

Abstract

Background:

The almost 11.3 million family caregivers of people with dementia must navigate the health insurance landscape to meet the complex medical and long-term care needs of their family members. This study explores factors that influence family caregivers’ decisions about insurance and how these choices affect the care and support people with dementia receive.

Methods:

Semi-structured interviews were conducted from June 2022-January 2023 with 15 family caregivers of people with dementia dual eligible for Medicaid and Medicare and enrolled in home-based primary care in New York City. A set of open-ended questions were asked exploring caregivers’ perspectives on navigating insurance plans. Interviews were recorded, transcribed, and analyzed using thematic analysis with both deductive and inductive coding.

Results:

Analysis revealed three major themes: 1) challenges of Medicaid enrollment, 2) making do with existing insurance, and 3) mistrust of the insurance system. Initial enrollment in Medicaid compounded the stress of adjusting to caregiving. The enrollment process was impacted by clinical factors, financial factors, and input from providers and social workers, however caregivers could not identify a centralized system for obtaining insurance information and support. Once Medicaid was in place, participants described advocating on behalf of their family member within the constraints of their current insurance plans (Medicare and Medicaid) and ensuring they had the necessary knowledge to understand their family member’s coverage. Participants voiced a need for ongoing vigilance to ensure their family members received needed care and support.

Conclusion:

The challenges family caregivers experience when navigating insurance for their family members with dementia contribute to caregiver burden. Robust and centralized professional support for family members both immediately after a family member’s dementia diagnosis and as the disease progresses could increase caregivers’ capacity to make insurance decisions that best support their family members with dementia.

Background

For the almost 11.3 million family caregivers (i.e. unpaid family members, friends, and others) in America who care for people with dementia living at home,¹ navigating the health insurance landscape is essential to ensuring that the person they care for has access to quality medical and long-term care. While almost all people with dementia qualify for Medicare due to their age, Medicare does not cover long-term home care, which often is the most impoverishing aspect of care.^2,3 Previous research has shown that the average out-of-pocket cost to patients with dementia and their families is significantly greater than for any other disease,¹ with the greatest cost burden falling on already marginalized populations.^2,4 Medicaid-funded home and community-based services provide crucial funding for long-term home care. However, many individuals do not qualify for Medicaid at the time of dementia diagnosis due to their income and must exhaust their existing financial resources to become eligible for needed Medicaid home-care services.⁵

Families of dual-eligible people with dementia (i.e., people who qualify for both Medicaid and Medicare insurance) then face a varied insurance landscape that may include options for Managed Medicaid programs and plans with variable integration between Medicare and Medicaid coverage.⁶ It is not surprising that older adults, and specifically dual-eligible beneficiaries, experience challenges navigating health insurance and demonstrate low health literacy about coverage benefits.^7–12 While family caregivers of individuals with dementia (who typically experience high levels of caregiver burden)^13–15 must take on the additional responsibility of navigating insurance coverage for their family member, little is known about their lived experiences.

In this study, we conducted interviews with family caregivers of dual-eligible people with advanced dementia to better understand how they navigate health insurance for their family member over time (Supplementary Table S1).

Methods

Setting and Participants

Family caregivers of people with dementia were recruited via a large, interdisciplinary home-based primary care program in New York City.¹⁶ Physicians were asked to identify patients who 1) had moderate to severe dementia (defined as a 2 or 3 on the Clinical Dementia Rating Scale)¹⁷, 2) had an adult primary family caregiver who spoke either English or Spanish, and 3) were dual eligible for Medicare and Medicaid. After sending letters introducing the study, we approached each family caregiver by phone about participation. All participants provided verbal informed consent and participants were compensated $20 for their time. All study protocols were approved by the Mount Sinai Institutional Review Board.

Data Collection

MGW and JMR developed an interview guide based on the existing literature and themes of perceived benefit, barriers, and self-efficacy of the Health Belief Model. We hypothesized that navigating insurance is a health behavior influenced by various factors including perceived benefit of obtaining adequate insurance for the person with dementia’s health, barriers to this goal, and caregivers’ self-efficacy to engage with the insurance landscape.¹⁸ After asking participants about sociodemographic, functional, and caregiving characteristics for both the family caregiver and the person with dementia, family caregivers were asked to describe: (1) barriers and supports for assessing available health insurance options, (2) resources utilized for health insurance decision-making, (3) navigation of existing insurance plans, and (4) how insurance choices impact the care and support people with dementia receive. The interview guide was piloted with two family caregivers not enrolled in the study and the guide was iteratively refined during piloting and initial interviews.

Interviews were conducted by MGW (English) and SP (Spanish) via telephone or HIPAA-compliant Zoom between June 2022 and January 2023. Interviewers completed an analytic memo after each interview to record reflections and emergent themes. Interviews lasted on average 36 minutes and were recorded and professionally translated and/or transcribed; MGW reviewed each transcript for accuracy. Each interview and its accompanying analytic memo were discussed individually during biweekly meetings between JMR and MGW and interviews were continued until additional interviews did not yield new themes.¹⁹

Analysis

Data were analyzed using thematic analysis with combined inductive and deductive approaches.¹⁹ MGW and JR reviewed several transcripts and analytic memos to develop a preliminary coding scheme that included both a priori codes related to the Health Belief Model and emergent codes based on interview content. The codes were refined as they were applied to subsequent transcripts and previous transcripts were then reviewed to ensure consistent coding. All transcripts were coded by two reviewers (MGW + JR or MGW + DW) and discrepancies in coded text were few and resolved by discussion. Finally, the research team had a series of meetings to discuss coded data, identify themes, and interpret our overall findings. Dedoose qualitative software was used to facilitate analysis. ²⁰

Results

We interviewed 15 family caregivers of people with dementia (Table 1). People living with dementia were on average 88 years old and all but one required assistance with all basic activities of daily living. Family caregivers were on average 60 years old and had been caring for their family member with dementia for 8 years; 7 of 15 identified as White/Hispanic and 14 of 15 were adult children. Analysis revealed three major themes (Figure 1): 1) challenges of Medicaid enrollment, 2) making do with existing insurance, and 3) mistrust of the insurance system. Each theme had several associated subthemes (Table 2).

Table 1.

Characteristics of People with Dementia and their Family Caregivers

People with Dementia (n=15)
Age, mean (range)	88 (72–97)
Female, n	14
Hispanic or Latino/a, n	10
Years since first dementia diagnosis, mean (range)	8 (1–25)
Requiring assistance in all Activities of Daily Living, n	13
Receives homecare from agency or Consumer Directed Personal Assistance Program, n	15
Receives 24/7 homecare, n	11
Enrolled in Medicaid, n	15
Enrolled in Traditional Medicare, n	8
Enrolled in Medicare Advantage, n	7
Family caregivers (n=15)
Age, mean (range)	60 (33–78)
Female, n	12
Hispanic or Latino/a, n	8
Primary language Spanish, n	1
Child of person with dementia, n	14
Spouse of person with dementia, n	1
Providing care for 5+ years, n	10
Lives with patient, n	6
Works outside the home for pay, n	8

Figure 1.

Family caregivers of individuals with dementia highlighted how as their loved one’s dementia progressed and home care needs increased, they first experienced insurance navigation as the challenges of Medicaid enrollment (Theme 1). Later, once Medicaid was established, caregivers described making do with existing insurance rather than changing plans (Theme 2). Throughout the duration of their experience, caregivers expressed mistrust of the insurance system (Theme 3).

Table 2.

Family Caregiver Experience Navigating Insurance: Relevant Subthemes

Theme 1: Challenges of Medicaid Enrollment
Subtheme 1a: Clinical and financial needs drive need for Medicaid enrollment	I went to the doctor’s office with him for a check-up… They realized that I needed 12 hours a day because I could no longer lift him out of bed, into the walker, or into the wheelchair, get him up from the chair into the wheelchair… They said they would help me apply for Medicaid for him. (Caregiver 15)
Subtheme 1b: Caregivers rely on external support and information to navigate enrollment	If not actually for the social worker at the doctor’s office, we wouldn’t have been able to do anything…. Because it was a geriatric practice, [the social worker] was like, “Well, this is what I do all day and this is what we need to do. (Caregiver 3)
Subtheme 1c: Insurance decision-making supports lacked centralization	It probably took, no kidding, maybe like a good five to six months before Medicaid… It was a lot of people involved in the process but It felt like no one really knew what they were doing. The follow-up was not good. The response, if we would try to contact people, the call back or the return calls were - you were lucky if you got one. It’s like the left hand and the right hand were never speaking to each other. (Caregiver 4)
Subtheme 1d: Caregivers capacity to advocate was central	I mean, there are no two ways about it. I think about all these [older] people who don’t have family who can advocate for them on their behalf and they end up in these horrible conditions. (Caregiver 8)
Theme 2: Making Do with Existing Insurance
Subtheme 2a: Acquiring only enough knowledge to support family member	As things come up and we’ve encountered different problems… we get the knowledge that we get… At first, I knew nothing. Now I do know a little bit more, but I know there’s a whole lot more that I need to know. As time goes on and things start to change for my mother that’s when we’ll get involved with that. (Caregiver 13)
Subtheme 2b: Caregivers maintain insurance plans through passive upkeep	I personally talk to the representative…once every six weeks… They call to check in to see whether my mother has fallen in the last month. Has she had any ER visits? Any changes in her medical issues and doctor appointments, et cetera? (Caregiver 8)
Subtheme 2c: Specific issues complicate maintenance of insurance	I am trying to place the appeal for [more homecare hours] the third time. It is very annoying when in reality they should have a person for each patient who has a similar situation, like a guider, that guides you step by step. (Caregiver 9)
Theme 3: Mistrust of the Insurance System
Subtheme 3a: Perceived misalignment between insurance system profit and quality care	I’ll tell you, insurance - now, a lot of these people die because they don’t have kids that are willing to do all of this… If you don’t fight it, the insurance is always looking to pay as little as possible and I get it…Again, it shouldn’t be like this… You should have someone that you should be able to turn to… (Caregiver 1)
Subtheme 3b: Lack of insurance company accountability heeds mistrust	I think it’s ad salesmanship where you get [insurance] and then it’s like, “Oh, I’m sorry but we don’t [cover that]”.. Like you buy the refrigerator from the store and the person that sends it to you is a whole different company, and if it’s broken, you call the [store] up and they say, “Well, I’m sorry. We just sell them, but you have to call the transport company.” Now, I think that’s what happens with the insurance companies (Caregiver 17).

Theme 1: Challenges of Medicaid Enrollment

Most family caregivers described enrolling their family member in Medicaid to meet dementia long-term care needs as a key event and as a significant source of stress; only 2 family caregivers cared for someone who was enrolled in Medicaid prior to the family member taking on caregiving responsibilities. In this difficult moment, caregivers discussed not immediately knowing that Medicaid was an option for their family member, finding the ‘Medicaid Excess Income’ or ‘Spenddown’ program and other aspects of proving Medicaid eligibility to be convoluted, and not knowing how to correctly fill out necessary paperwork. Family caregivers described the process of enrolling in Medicaid as “horrific,” “brutal,” and “overwhelming” (Caregivers 11, 8, 4 respectively).

Both clinical status changes (e.g., decline in function) and financial factors (e.g., insufficient money to pay privately for needed care) precipitated the need for family caregivers to enroll their family members in Medicaid (subtheme 1a). Caregivers relied on external support (subtheme 1b) from people like social workers or physicians to help them navigate Medicaid enrollment. Yet, almost all caregivers recognized that centralized supports to help with this were extremely limited (subtheme 1c) and suggested that a more streamlined approach that leveraged social workers to help with Medicaid enrollment was needed. Finally, caregivers acknowledged their capacity to advocate for their family member with dementia as key to getting their insurance needs met (subtheme 1d).

Theme 2: Making Do with Existing Insurance

Caregivers viewed navigating the occasional problems that inevitably arose with existing insurance to be a manageable burden, especially after the stress many experienced when enrolling their family member in Medicaid. Rather than exploring other insurance plans, such as alternative Medicaid managed plans, dual-eligible special needs plans (D-SNPs), or Medicare Advantage, family caregivers described making do with existing insurance coverage.

Family members described accruing only enough knowledge to adequately support their family member’s care (subtheme 2a). The caregivers discussed that passive upkeep of their family member’s insurance plans (e.g., filling out annual forms) was made easier when insurance coordinators and managers remained consistent over time (subtheme 2b). Several family caregivers, however, described challenges when needed care (such as greater home care hours or more supplies) was denied (subtheme 2c). Many paid privately (if they could afford it) to avoid the complicated and frustrating insurance appeal process; even after appeals, needed care frequently remained denied. Denials were seen as stemming from a significant lack of flexibility within insurance plans to accommodate specific care needs and family caregivers felt unsupported navigating this system.

Theme 3: Mistrust of the Insurance System

Family caregivers expressed mistrust of the insurance system that was not designed to meet the needs of older adults with functional impairment. They perceived insurance companies as focused on reducing costs rather than ensuring quality care for individuals living with dementia. Family caregivers felt they had to remain vigilant to prevent insurance companies from taking advantage of their family member with dementia (subtheme 3a). This mistrust was bolstered by what caregivers viewed as insurance companies’ lack of sense of accountability when there were issues with coverage (subtheme 3b).

Discussion

Our study of family caregivers who care for dual-eligible people with dementia highlights how navigating health insurance is an additional challenge for already-burdened family caregivers. Results also suggest important ways to support family caregivers with this difficult task.

The challenging period of taking on a caregiving role²¹ was made more difficult for family caregivers because of the need to initiate Medicaid coverage. Family caregivers perceived that, during this time, they did not have a central way to gather information or obtain support. Medicaid coverage of home-based long-term care varies widely by state, and state of residence may affect the challenges faced by family caregivers navigating insurance policies and processes.²² However, our findings highlight the general importance of proactive, universal insurance navigation support and ensuring that families can access established community programs (e.g., Medicaid departments, community services provided as part of the Older Americans Act). This may be particularly essential for family members of people with newly diagnosed dementia.

While we initially hypothesized that family caregivers would make ongoing insurance decisions based on perceived benefits, barriers, and self-efficacy as described in the Health Belief Model, the family caregivers in our study described considering insurance changes rarely and only in response to specific issues. This was fueled by a hesitancy to engage with the complexity of the insurance system, especially given the perceived lack of supports during Medicaid enrollment. While new insurance products like Dual-Eligible Special Needs Plans (D-SNPS) may improve coordination and quality of care to complex patients like those cared for in our study^23,24, our findings suggest that people with dementia are unlikely to actively seek them out without additional support or systems to facilitate enrollment in appropriate plans (e.g., in New York State new Medicare enrollees with existing Medicaid coverage are automatically enrolled in D-SNPs). Any outreach or education about insurance should specifically consider family caregivers of people with dementia and ensure that information is accessible and digestible.^4,23,24

While all family caregivers of people with dementia need support to navigate the complex insurance system, our findings suggest that this is particularly essential for the under resourced population of people with dementia who become Medicaid eligible due to long-term care needs and expenses.²³ The mistrust of the insurance system described by caregivers in our study is consistent with existing research about marginalized groups’ mistrust of the health care system.^25,26 As family caregivers in the study voiced the importance of considering the unique and complex needs of each person with dementia living at home and their family, an individualized approach that provides proactive, ongoing, and personalized supports may be an important way to reduce racial/ethnic disparities in caregiver strain.

Our study has several limitations. First, our sample of family caregivers were primarily adult children already connected to a high touch, interdisciplinary primary care program. While this may not reflect the experiences of all dementia caregivers (e.g., spouse caregivers), participating family caregivers had years of experience engaging the healthcare system and acted as key informants to describe their journey navigating insurance. Second, our study occurred in New York where Medicaid-funded home care is expansive and options for insurance programs like DSNPs are available to dual-eligible people. While many other states do not currently have this level of Medicaid-funded home care, the nationwide rebalancing of Medicaid long-term care spending from institutional to home-based care means that the experience in New York is relevant as other states’ care models shift into the home.²⁷ Finally, while we appreciate that our sample size may be considered small, there was clear consensus about the themes described.

Family caregivers need additional support both as they enroll in Medicaid and over time as they navigate their family member’s existing insurance to ensure individuals with dementia can live safely at home.

Key Points:

• The stressful transition to caregiving for family members of people with dementia is made more challenging by the need to navigate insurance coverage for long-term homecare needs.

• Family caregivers of people with dementia lack centralized or standard support to gather needed information about insurance options, which contribute to making do with existing insurance coverage rather than actively seeking out alternative options.

• The provision of proactive insurance navigation support for family caregivers of people with dementia is essential for supporting caregivers.

Why does this matter?

This research matters because both the number of individuals caring for family members with dementia in the United States and the insurance options available to cover the costs of care are growing. Yet the perspectives of caregivers navigating this increasingly complex insurance landscape for their family members with dementia has not been examined.