Exploring the Service and Support Needs of Families With Early-Onset Alzheimer’s Disease

Abstract

Although often cast as a disease of later life, a growing number of people are being diagnosed with Alzheimer’s disease in their 50s and 60s. Early-onset Alzheimer’s disease (EOAD) poses special challenges and needs for individuals and their caregivers, such as employment and access to services. In this cross-sectional study, the researchers surveyed 81 (N = 81) family caregivers to individuals with EOAD to identify service and support usage and need. Descriptive analyses revealed that families utilized a range of formal services (eg, adult day) and informal support from family and friends. In terms of challenges and needs, participants indicated that they struggled most with employment, benefits, and financial issues. Although most caregivers felt that they were coping well, they also indicated that their needs were not well understood by service providers and the public. These findings highlight the need to better understand and respond to the specific issues surrounding EOAD.

Diagnosed before the age of 65, early-onset Alzheimer’s disease (EOAD) accounts for approximately 5% of all cases of Alzheimer’s disease (AD) in the United States. ¹ The estimated 200 000 individuals diagnosed with EOAD and their families face specific challenges, given both the devastating impact and the anachronistic timing of the disease. Employment and access to benefits can be a challenge, as many with EOAD still need to work and have yet to reach an age where retirement benefits are available. Others may be raising children or providing care to their own parents. The strain of EOAD can also have a negative impact on family dynamics and relationships as most are ill-prepared to deal with such an unexpected and burdensome disease. ² Although researchers are beginning to cast a light on families faced with EOAD, few have focused on the families’ perspectives on living with EOAD. This leaves service providers with little information on the specific needs of this group and how to develop and direct services. In this study, the researchers explored the services used by families with EOAD, the support that they receive, their needs and unmet needs, and their perceptions of how others understand their experiences with this disease. The findings should help service provides better understand this population and the particular challenges of living with EOAD.

Research has clearly shown that living with AD and caring for someone diagnosed with AD can impart immense physical, emotional, and social strains. ^3,4 Families with EOAD face many of the same challenges as those with AD, including the physical demands of caregiving, mental health issues (eg, depression and anxiety), and lost opportunities and time for socialization and other activities. ^5,6 Researchers have found that families dealing with EOAD face additional challenges such as a disruption of their active roles in life, loss of future plans, changes in marital relations, and problems related to work and finances (for a review ⁷ ). Such challenges are not unexpected, given the life stage in which EOAD is diagnosed. For many, the 50s and 60s are prime years in terms of family life, career, and future orientation toward retirement. Early, accurate, and definitive diagnoses have also been found to be an important need for families, as a lack of diagnosis can preclude individuals from qualifying for services. ^5,8

The needs of families with EOAD are many, yet services for this population are few. This is primarily a result of their young age, as most services for individuals with dementia and their caregivers are designed for older adults. ^{9 –11} Research has found that individuals with EOAD and their caregivers do not feel like they “fit in” with support programs for older adults and are reluctant to utilize such services. ¹² The Alzheimer’s Association, a leading source of support in the United States, has stated that increasing services to this group is a priority; however, many service providers have yet to develop targeted programs. ¹³ Individuals with EOAD and their caregivers may also have difficulty in finding family members to assist with caregiving. In cases with AD, adult children often assist with caregiving. This may not be the case with EOAD where children are often still young and are not in a position to assist with care. ¹⁴

In addition to the challenges of accessing support and services, many individuals with EOAD encounter difficulties in qualifying for government programs. Some individuals may not be aware that they have EOAD or may have difficulty in obtaining a definitive diagnosis. This may preclude them from seeking benefits. Others may not meet strict requirements to quality for programs such as social security disability insurance, as the condition may not meet the definition for what constitutes a disability. ¹³ Age again plays a factor in qualifying and accessing other programs, such as adult day services and transportation. Individuals with EOAD and their caregivers seem to be caught in a state of limbo—too young for a health care system designed to help older adults.

Although we are beginning to learn more about EOAD, there have been relatively few studies that have addressed the services that families use and the needs that exist for this population. For example, a recent review article identified only 17 published articles that addressed the impact of EOAD on caregivers. ⁷ This speaks to the need for additional research on this often overlooked population. The purpose of this study was to gain the caregiver’s perspective on (1) the services and support that is available and utilized by families with EOAD, (2) the needs and unmet needs of families with EOAD; and (3) the degree to which the challenges and needs of families with EOAD are perceived. The findings from this study are important on several levels. They add to the nascent literature on this topic and may serve as a stepping stone for future studies. The findings also afford valuable information for service providers in terms of program development and meeting the specific needs of this group.

Methods

Sample

The population for this cross-sectional study consisted of caregivers for individuals with EOAD. The authors collaborated with 5 chapters of the Alzheimer’s Association in the state of Ohio to contact and recruit participants. Each chapter maintains lists of family caregivers to individuals with EOAD. Packets containing a cover letter, a survey, and a stamped return envelope were mailed to each family caregiver on the lists of each chapter. A total of 315 packets were mailed. Of these, 54 were returned as “undeliverable” due to address changes, leaving 261 delivered packets. A total of 81 family caregivers (N = 81) completed surveys, resulting in a response rate of 31%.

Data Collection and Analysis

A focus group was held with family caregivers and service providers to help develop items for this survey. Three themes emerged from the focus group—(1) the challenges of providing care, (2) the challenges of accessing services and benefits, and (3) the desire for additional services tailored to meet the needs of caregivers and individuals with EOAD. These themes were reflected in the items included in the survey. The survey instrument contained items focused on the following: demographics, caregiving obligations, utilization of services (formal and informal), perceived importance of services, employment status, need for and access to financial services and benefits, and perceived understanding of the experiences of caregivers by the public and by service providers. Given the fact that burden is well understood in caregiving, the authors did not include a burden scale. The authors also intentionally limited the number of items to increase participation and to decrease time demands. Given the relative simplicity of the survey, data analysis consisted of frequencies and descriptive statistics computed using SYSTAT 13.

Results

The final sample consisted of 81 family caregivers (N = 81) to individuals diagnosed with EOAD. As shown in Table 1, family caregivers were primarily female (76.5%), spouses (69.2%), or adult children (20.5%), living in an urban community (88.4%). A slight majority of care recipients were male (53.1%), and the mean age for diagnosis was approximately 56 years of age (M = 56.2; standard deviation = 6.36). The youngest reported diagnosis was 32 years of age.

Table 1.

Demographic Characteristics.^a

Characteristic	%
Gender of caregiver
Female	76.5
Male	23.5
County where caregiver is located
Urban	88.4
Rural	11.6
Caregiver relationship to the care recipient
Spouse or partner	69.2
Adult child	20.5
Other (eg, sibling, parent, friend)	10.3
Caregiver’s current employment status
Employed full time (>32 hours)	40
Employed part time (<32 hours)	11.2
Retired	27.5
Unemployed	21.3
Additional caregiving responsibilities
A child (18 and younger) who lives with me full or part time	16.7
A parent who lives with me	2.6
A parent who does not live with me	11.5
Other	11.5
Gender of care recipient
Female	46.9
Male	53.1
Care recipient has insight into memory impairment
Has insight	78.2
Does not have insight	19.2
Care recipient’s current employment status
Employed full time (>32 hours)	1.3
Employed part time (<32 hours)	3.9
Retired	53.2
Unemployed	41.6
The care recipient currently receives
Private health insurance	50
Medicare	42
Medicaid	14.8
Veteran affairs health insurance	5
Social security income (SSI)	28.4
Social security disability income (SSDI)	49.4
None of the above	2.5

^a N = 81.

In terms of caregiving responsibilities, 33.4% of participants stated that they were caring for another individual in addition to the individual with EOAD. For instance, 16.7% reported that they were also caring for a child below the age of 18. Others were caring for a parent who was either living with them (2.6%) or living elsewhere (11.5%). Some (11.5%) participants were providing care for other family members (eg, brother and sister) or a close friend. In a few cases, participants reported that they were simultaneously providing care for the individual with EOAD, a child, and an aging parent.

Caregivers were asked about the services that they used and the degree to which such services were important. Adult day services was the most commonly used service (26.9%), followed by home health care services (19.5%), skilled nursing care in a long-term care facility (18.0), and nonmedical home services (15.4%). Fewer caregivers reported using transportation services (11.5%), meal services such as Meals-on-Wheels (9.0%), assisted living facilities (7.8%), and short-term emergency respite (3.9%). Interestingly, only 11.5% of family caregivers reported the use of support programs specific to EOAD. It is also important to note that the majority (67.9%) of respondents reported that they did not currently use any type of formal support service. When asked about importance of services, caregivers responded that respite care (56.4% felt it was very important), printed (51.3% felt it was very important), and online materials (46.2% felt it was very important) were the most relevant supports in helping their family in coping with the disease. Respondents also recognized financial planning (60.3% felt it was very important) and legal planning (59.0% felt it was very important) as beneficial resources to their family. However, individual counseling (24.4% felt it was not important at all) and group/family counseling (37.2% felt it was not important at all) were valued as less importance resources to supporting their family.

Caregivers were also asked about informal support. Caregivers indicated that informal support came from a number of people, most commonly family members (35.8%), friends (24.7%), and adult children (17.3%). Looking more closely at the family members who provided support, 17.3% of caregivers reported that they were receiving support from adult children and 9.9% were receiving support from their elderly parents. When asked about the importance of this informal support, caregivers responded that support from family (79.0%) and friends (61.7%) was most valued of all of their resources. Interestingly, a substantial percentage (32.1%) of caregivers also received informal support from paid professionals, such as home health aides.

In looking at the employment and financial situation for caregivers, the majority were employed either full time (40.0%) or part time (11.2%). The remainder of the caregivers was either retired (27.5%) or unemployed and actively seeking employment (21.3%). Financial support came from a variety of sources, most commonly from private health insurance (50.0%), social security disability insurance (SSDI; 49.4%), Medicare (42.0%), social security income (28.4%), and Medicaid (14.8%). In most cases, families were multiple sources of financial support to cobble together a safety net. Despite the existence of this financial support, 60.1% of families covered at least some costs of care “out-of-pocket” and 85.2% agreed that privately paying for services can be a burden for the family. Over half (53.1%) of the caregivers indicated that there was not adequate assistance available in obtaining financial benefits.

Finally, caregivers were prompted to reflect on whether the needs of families with EOAD were adequately understood by service providers and the general public. Almost half (45.7%) of the caregivers felt that service providers did not adequately understand their needs and a vast majority (84.0%) felt that the general public did not adequately understand their needs. Despite this fact, 86.3% of caregivers felt that they were coping well with their circumstances.

Discussion

In this study, the researchers surveyed family caregivers to individuals with EOAD to gain a better understanding of the services that they utilized, the needs and challenges that they faced, and the degree to which their needs were understood and met. The findings both reflected what has been found in previous studies and also revealed new information on the lived experiences of families faced with EOAD. These findings have implications for the development of targeted services for families with EOAD and a better understanding of the needs and challenges that this group faces.

In looking at the services used by families, it appears that families with EOAD have access to and have utilized the “traditional” spectrum of care used by families with AD, such as adult day, skilled nursing care, and home health. However, the percentages for those who used these services were quite low. Interestingly, some of these percentages are comparable to service use reported in a much earlier study in the United Kingdom. In that study, 23% of families used adult day services and 13% home health services. ¹⁵ Further, researchers found that families with EOAD used informal care 3 times higher than formal care services. ¹⁶ In the current study, a relatively high percentage of family caregivers also reported that they currently do not use any formal services or support. There are a few possible rationales that may help explain this lack of service use. Families may not qualify for programs that would pay for such services. For instance, adult day services in Ohio are paid through the Pre-Admission Screening Providing Options and Resources Today (PASSPORT) Medicaid waiver program and applicants must be aged 60 and older to qualify for benefits. ¹⁷ Other families may not be aware that services exist. Many families with AD are referred to services in the United States through their contact with Area Agencies on Aging. This important resource is not available to younger families. Finally, families may simply feel that they do not “fit in” with the services that exist and, therefore, don’t use these resources. The services are tailored toward older adults and may not meet the specific needs of this group, such as assistance with employment and financial planning. This notion has been echoed throughout the literature on EOAD. ¹² Only 11.5% of families used EOAD-specific services in the current study. Although this may speak to the fact that few EOAD-specific services exist, additional research is needed to parse out whether services don’t exist or families simply don’t use existing services.

Informal support emerged as an important and highly valued resource for families in this study. This finding was not unanticipated, given the lack of formal service use in this sample and the powerful impact that informal support from families and friends can have on coping with disease such as AD. ¹⁸ Previous research on family caregivers to individuals with EOAD echoes the importance of informal support such that a lack of support from family and friends can be problematic for caregivers. ¹⁹ As with other significant illnesses (eg, cancer), EOAD appears to be a “family disease” that activates a caring network of family and friends. Relying upon family and friends for support can also help alleviate some of the temporal strains and feelings of role captivity and missed opportunity—a significant source of burden for caregivers of individuals with EOAD. ²⁰ Interventions that enhance support networks, such as those that have been found to be effective with AD caregivers, ²¹ appear to hold promise in reducing burden for EOAD caregivers.

A substantial number of family caregivers reported that they encountered challenges with employment, benefits, and finances. Alarmingly, 21.3% of caregivers reported that they were unemployed and actively seeking employment. This figure is over 3 times the rate of unemployment for the state of Ohio. Although the researchers did not expand on the cause of unemployment, one could speculate that caregiving responsibilities had a negative impact on both employment and job searching. Previous studies have consistently found that loss of income for both the individual and the caregiver was a significant stressor for families with EOAD. ^9,22,23 Fortunately, the majority of families were receiving benefits to help defray the costs of care. Almost half of the sample was receiving SSDI, which may be reflective of a recent initiative by the Social Security Administration to support individuals and families with EOAD. ²⁴ Despite this expanded coverage, families appear to struggle to afford care and many still pay out of pocket. It would appear that families would benefit from assistance in finding employment and securing benefits; yet, most families indicated that such assistance was not adequate.

The findings from this study have implications that resonate with the findings from previous research—families with EOAD need specialized services to meet their specific needs. Unfortunately, this call has yet to be answered as most families in this study indicated that their needs were not well understood by service providers or by society at large. As pointed out in review of the needs of families with EOAD, person-centered care may be the key to serving this population effectively. This includes interagency collaboration that addresses care needs, formal and informal social and emotional support, and assistance with financial planning, employment, and benefits. ¹⁰ Until such services and approaches are developed and implemented, it appears that families dealing with EOAD will remain “between a rock and a hard place.” ²⁵

Limitations

This study has several limitations that should be considered when interpreting the findings. First, the sample size for this study was relatively small and geographic and demographic homogeneity may limit the generalizability of the findings. Second, participants were recruited from lists of people who had previous contact with the Alzheimer’s Association. These participants had received services in the past or were possibly receiving services at the time of the survey from the Alzheimer’s Association. This may have overrepresented families who have been and continue to be receiving formal services. In actuality, there may be far more families who are not engaged with formal systems of care and, as a result, are not faring as well as the families in the current study. Finally, the study design was cross-sectional, and the survey instrument was limited in scope. Future studies should expand our knowledge from the “what” question to the “why” question in terms of the service use and needs of families with EOAD.