Individuals with intellectual and developmental disabilities (IDD) in the U.S. predominantly live with their family caregivers. As care delivery and support systems vary widely globally, consideration of caregiver outcomes specifically in the U.S. context is needed. A systematic literature review was conducted to identify U.S. family caregiver outcomes and their association with existing services and supports for family caregivers of adults with IDD. Twenty-four articles were compiled using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. Studies report economic, mental, and physical health outcomes from caregiving roles. The need for comprehensive caregiver assessment is discussed. Understanding and responding to the changing needs of family caregivers is vital to the U.S. disability service system to effectively prioritize formal resources and services.
Individuals with intellectual and developmental disabilities (IDD) are experiencing longer life expectancies, and families continue to be the primary providers of care (Factor, Heller, & Janicki, 2012). In 2011, 71% of individuals with IDD lived with a family caregiver (Braddock et al., 2013). Given the growth of the aging U.S. population, the aging adult population with IDD, and the reliance on families to provide a majority of caregiving, it is imperative that support services for families be accessible and effective. The U.S. health and social service systems for individuals with IDD and their families are unique from other countries, creating a necessity to understand U.S. specific outcomes of family caregivers.
Currently, the Home and Community-Based Services (HCBS) waiver program, funded through Medicaid, is the primary funding source for long-term services and support for individuals with IDD and their families (Braddock et al., 2013). The HCBS waiver program was established in 1981 in order to encourage services and support to be provided in the community and to move away from institutional care (Punelli, 2010). Rizzolo, Friedman, Lulinski-Norris, and Braddock (2013) completed a national-level analysis of HCBS waiver services and spending for individuals with IDD and found great variability across states in service definitions and allowable and unallowable costs. The complexity of the U.S. disability service system makes measuring family caregiver outcomes on a national level a complicated endeavor. However, the health and wellbeing of family caregivers is critical to supporting the existing system of care in the U.S. and will only become more critical with the aging of the population in the years to come (Talley & Crews, 2007a).
In recent years, there have been several federal initiatives acknowledging the role of family caregivers. In 2012, the Administration on Intellectual and Developmental Disabilities (AIDD) awarded the National Association of State Directors of Developmental Disability Services (NASDDDS) $1.5 million over five years to expand their National Core Indicators (NCI) effort in more U.S. states (National Core Indicators, 2012a). The NCI's goal is to develop a standard set of performance and outcome measures for states so they can track their performance over time, compare results across states, and develop national quality benchmarks for publicly funded IDD programs (National Core Indicators, 2012a). NCI includes family indicator outcome measures and is a voluntary state-led initiative with 34 participating states (National Core Indicators, 2012b).
The U.S. Department of Health and Human Services, as part of the Affordable Care Act, has released $25 million to expand the Aging and Disability Resource Centers (ADRCs) into every state over the next three years to provide more home- and community-based supports to older adults and people with disabilities (U.S. Department of Health and Human Services, 2012a). ADRCs are designed to be one-stop shops for families to receive counseling on accessing supports and services (U.S. Department of Health and Human Services, 2012a). Also included in Healthy People 2020 are goals to increase the number of health departments completing surveillance of caregivers of people with disabilities and to increase health promotion programs to improve the health and well-being of caregivers of people with disabilities (U.S. Department of Health and Human Services, 2012b). In 2012, the Administration for Community Living (ACL) was created, which merged the Administration on Aging, the Office of Disability, and the Administration on Intellectual and Developmental Disabilities into one agency, to improve policy and program support (Administration for Community Living, 2012). Finally, the Affordable Care Act includes the Community First Choice Option and the Balancing Incentive Program, which are designed to help states move people needing long-term services and support from institutional care to home- and community-based care (The Arc, 2012).
Recent reviews in the literature of HCBS waivers have called for an increased focus on the characteristics and needs of family caregivers while acknowledging the need for policy makers to have cost-effective information on the HCBS waiver services (Borrayo, Salmon, Polivka, & Dunlop, 2004; Lakin, Prouty, & Coucouvanis, 2007). With increasing demand for resources due to the aging U.S. population, there is also a need for more family support services (Parish & Lutwick, 2005; Seltzer & Krauss, 2001). The changing demographics of the U.S. population means that future research agendas need to capture more demographic data on family caregivers while also encouraging the evaluation of family support services across the disability and aging networks (Heller & Factor, 2008). Hodapp (2007) indicated few studies report on the impact of formal support services on family members. The purpose of this review is to report family caregiver outcomes that have been identified with existing services and supports for family caregivers of adults with IDD in the U.S. Our primary interest is to review physical health, mental health, and economic hardships that have been associated with caregivers of adults with IDD. Drawing upon the results of the literature review, we then propose domains that should be considered in caregiver assessment for research, service delivery, and policy.
A systematic literature review was conducted using the PubMed, Web of Knowledge, PsychInfo, and CINAHL databases. These databases were chosen to give full coverage of all disciplines whose academic journals are likely to include caregiving research. A broad variety of search terms were incorporated in several combinations in order to encapsulate the diverse range of caregiving terms, etiology of IDD, and terminology used to describe family support over the last three decades. Search terms included: family caregivers, adults, intellectual disabilities, developmental disabilities, autism, Down syndrome, cerebral palsy, family outcomes, family supports, family quality of life, family centered care, caregiver health, caregiver quality of life, managed care, HCBS waiver, and long term services and supports. We applied the search terms to keywords, article titles, and abstracts. We also included physical, mental, and economic as search terms/filters in order to further delineate relevant empirical studies. We adopted this liberal approach to search terms in recognition of the diverse population base that IDD can cover and changes in terminology over the years.
Inclusion criteria included studies using U.S.-based samples for their participants that reported outcomes of family caregivers of adults with IDD and were published between the years 1982–2013. This date range was chosen to coincide with the implementation of the HCBS waiver. Exclusion criteria included population samples from outside the U.S., articles that addressed outcomes of family caregivers of children with IDD, and articles that addressed outcomes of family caregivers of individuals with other disabilities (not IDD). A total of 103 articles were initially identified, which was reduced to 22 after applying the inclusion criteria. We also reviewed reference lists and citations from the identified articles as well as examining references from previous literature reviews. Using this method, we identified two further articles also meeting all inclusion criteria.
Twenty-four studies met all our criteria for review and are summarized in Appendix A. Several articles reported multiple outcomes across the physical health, mental health, and economic domains. Table 1 presents the focal areas of the caregiver outcomes reported in each study.
Mental Health Outcomes
Family caregiver mental health outcomes are related to the diagnosis of the adult with IDD, the varying level of needs of the individual with IDD, and the length of caregiving role. Seltzer, Krauss, and Tsunematsu (1993) found that maternal caregivers of adults with Down syndrome report less burden compared to mothers of adults with other IDD. The Down syndrome behavioral phenotype was found to predict lower caregiver pessimism about the future and better life satisfaction among mothers of adults with Down syndrome (Esbensen & Seltzer, 2011). However, life satisfaction is lower if the adult with Down syndrome has more behavior problems (Esbensen & Seltzer, 2011). The greater the severity of the disability and the more complex the needs are related to higher caregiver stress and burden (Black, Cohn, Smull, & Crites, 1985; Heller, Miller, & Factor, 1997). Seltzer and Krauss (1989) found that maternal burden was higher when the adult with IDD had poorer physical health. However, if the adult with IDD is providing support to the caregiver, then the level of caregiver burden is lower (Heller et al., 1997).
Demographic differences among caregivers were found to influence caregiver mental health outcomes. In comparing Latina and Anglo mothers of adults with IDD, Latina mothers had higher self-reported depressive symptoms and lower optimism than Anglo mothers (Blacher & McIntyre, 2006). Parental role also has an influence on caregiver mental health. Fathers are more pessimistic about the future and less likely to use coping strategies to reduce stress than mothers (Essex, Seltzer, & Krauss, 1999). Among mothers of adults with Down syndrome, maternal age at time of birth influenced caregiver burden with an older maternal age being associated with less burden (Esbensen & Seltzer, 2011). Caregivers less than 55 years of age were found to experience more burden than caregivers older than 55 years of age (Hayden & Heller, 1997). Chen, Ryan-Henry, Heller, and Chen (2001) found that maternal caregivers ages 55 and older had similar or better self-reported mental health than the comparative general population.
Co-residence is also found to be associated with family caregiver mental health outcomes. Co-residing maternal caregivers of adults with autism spectrum disorder rate their situation more negatively compared to those not co-residing (Krauss, Seltzer, & Jacobson, 2005). In comparing parents of adults with IDD to parents of adults without a disability, by early old age (i.e. mid-60s) those who still co-resided with an adult with IDD reported lower marital stability, reduced leisure time, higher limitations in parental activities of daily living (ADLs), and lower health related quality of life (Seltzer, Floyd, Song, Greenberg, & Hong, 2011). Seltzer and colleagues also noted that the parents of adults with IDD had overall poorer mental health compared to parents of adults without a disability.
The literature indicates that the family caregivers' relationships with services and supports are also associated with caregiver mental health. Over time, family caregivers of adults with IDD are more likely to use respite if they report higher caregiver burden (Freedman, Griffiths, Krauss, & Seltzer, 1999). Older family caregivers were less likely to report having unmet service needs than younger caregivers (Hayden & Heller, 1997). Caregivers who report more unmet service needs or needing a greater amount of services experience higher caregiver burden and stress (Hayden & Goldman, 1996; Heller & Factor, 1993). Neely-Barnes, Graff, Marcenko, and Weber (2008) noted that families who are highly involved in coordinating services receive more services, report better perceptions of provider competence, and have more family satisfaction. Comparing caregivers of adults with IDD receiving consumer-directed services to those on a waiting list, caregivers receiving consumer-directed services have less caregiver burden, and lower income families had significantly better mental health compared to lower income families on the waiting list (Caldwell, 2006; Caldwell & Heller, 2007).
The mental health of the family caregiver and the expansion of their caregiving role are related to their desire for out-of-home placement. Greater caregiver stress and burden can result in an increased desire for out-of-home placement (Black et al., 1985; Heller & Factor, 1991). Being a lifelong caregiver to an adult with IDD does not prevent the possibility of becoming a caregiver to other family members (Perkins & Haley, 2010). Perkins and Haley (2010) describe this as “compound caregiving” due to the “compounded” duties for multiple care recipients, and found that many caregivers are either currently, have previously been, or anticipate becoming a compound caregiver. Perkins and Haley (2010) found that caregivers who had become compound caregivers expressed an increased desire to place their adult son or daughter with an IDD into residential care. Caregiver wellbeing has also been found to be compromised when undertaking multiple caregiving roles and is associated with higher levels of depression (Ghosh, Greenberg, & Seltzer, 2012).
Physical Health Outcomes
There are mixed results of physical health outcomes associated with caregiving in the literature. Female caregivers of adults with IDD living in the family home compared to the females in the general U.S. population perceived their health to be better (Yamaki, Hsieh, & Heller, 2009). However, among these same female caregivers of adults with IDD, it was found that they had higher prevalence of arthritis, high blood pressure, obesity, and limitations in activities (Yamaki et al., 2009). Mothers ages 55–64 in a caregiving role to adults with IDD rated their physical health better than the general population (Chen et al. 2001). However, Seltzer et al. (2011) found that parental caregivers of individuals with IDD compared to parents of individuals without any disability experienced poorer physical health as they age. Worsening caregiver physical health can result in increased preference for out-of-home placement (Essex, Seltzer, & Krauss, 1997).
The health status and diagnosis of the care recipient may or may not influence caregiver physical health. Seltzer and Krauss (1989) found that the worse the physical health of the adult with IDD, the worse the caregiver physical health. Caregivers of older adults with Down syndrome did not report any caregiving health-related problems regardless of whether their care recipient had developed mild to moderate dementia (Janicki, Zendell, & DeHaven, 2010), suggesting an ability to adapt to changing caregiving demands. Comparing maternal caregivers of adults with Down syndrome to maternal caregivers of adults with other IDD, the physical health was similar between groups (Seltzer et al., 1993).
Caregivers report financial impacts including an overall lower socioeconomic status among early old age co-residing parents (Seltzer et al., 2011). Receiving support services is an important factor in reducing family out-of-pocket disability-related expense (Caldwell, 2006). Among households including an adult son/daughter with IDD, lower income households report a higher proportion of out-of-pocket disability supports spending (Fujiura, Roccoforte, & Braddock, 1994). Family caregivers of adults with IDD with lower income in later life report lower overall mental health (Chen et al., 2001).
Discussion and Implications
The U.S. disability system with its emphasis for prioritizing home- and community-based care over institutional care automatically results in greater reliance upon family caregivers. The existing research demonstrates physical health outcomes, mental health outcomes, and economic impacts due to the lifelong caregiving of a family member with an IDD. Family caregivers who experience physical and mental health setbacks or take on multiple caregiving roles could be more apt to seek out-of-home placements for their son or daughter with IDD. Tailoring support to consider caregiver challenges, as well as availability of informal supports may prevent unwanted transfer to out-of-home placements, and more equitably prioritize support. Better understanding the needs of family caregivers can be accomplished through caregiver assessments that consider the diverse challenges, supports, and resources each caregiver may access. Furthermore, it is crucial that family support services frequently update such caregiver assessments in order that they continue to remain responsive and adapt to the changing and evolving circumstances experienced by many caregivers.
Caregiver assessment tools are available for families of individuals with IDD that can be found in the literature. The Family Quality of Life (FQOL) Survey and the Beach Center FQOL Scale are designed to evaluate the needs of family caregiver of individuals with IDD (Hoffman, Marquis, Poston, Summers, & Turnbull, 2006; Samuel, Hobden, Leroy, & Lacey, 2012). However, this systematic review did not reveal any U.S-based study that has utilized either FQOL assessments with caregivers of adults with IDD. The Family Caregiver Alliance (2006) has developed a toolkit titled, “Caregivers Count Too! A Toolkit to Help Practitioners Assess the Needs of Family Caregivers,” but this is not specific to adults with IDD and their caregivers. The American Psychological Association (2013) provides guidance on caregiver assessment methodology and recommended domains of caregiver assessment in their “Caregiver Briefcase” for practicing psychologists.
In a systematic review on measuring family outcomes for families with a member with an IDD, Turnbull, Summers, Lee, and Kyzar (2007) found that the maternal role was emphasized most often and a single family member's perspective was utilized to reflect family level outcomes. Park et al. (2003) developed and are still validating a FQOL survey for families of individuals with IDD in the U.S. Increasing clinician awareness of the changing roles and demands upon caregivers, while also encouraging interdisciplinary assessment processes, are both needed (Bailey et al., 2012; Perkins & Haley, 2010; Phelps, Hodgson, McCammon, & Lamson, 2009).
Grant, Ramcharan, and Flynn (2007) recommended that caregiver assessments for this population should capture caregiver resilience by addressing their strengths while respecting their expertise, norms, and expectations. Perkins (2011) discussed the need for caregiver assessments to be responsive to the changing support needs of caregivers, which vary over time due to changing caregiver circumstances. While the primary caregiver is the main focus of this review, the entire family can be affected by caregiving decisions present and future. With the aging U.S. population, the role of siblings in providing care is likely to increase (Heller & Kramer, 2009). Arnold, Heller, and Kramer (2012) found adult siblings of people with DD report wanting more acknowledgement of their caregiving role from disability services and supports system. Due to their potential to become future caregivers, it will become increasingly more important to include siblings in caregiver assessments. Overall, identifying assessment tools and domains that are most appropriate for assessing aging family caregivers of adults with IDD is still a work in progress.
The United States Senate Commission on Long Term Care (2013) recommended that the existing assessment requirements should be expanded to include the needs of the family caregiver. In practice, Collins and Swartz (2011) have encouraged primary care physicians to complete caregiver assessments to identify caregiver needs and resources. In addition, Ganz (2007) recommended financial counseling to parents of adults with IDD. In order to control Medicare and Medicaid expenditures, family assessments to guide family support services have also been recommended (Feinberg, 2007). Unfortunately, only a third of states include family caregiver assessment as part of their Medicaid HCBS waiver evaluations (Kelly, Wolfe, Gibson & Feinberg, 2013).
Understanding and responding to the needs of family caregivers is a public health issue, and therefore it has been strongly advocated that additional funding should go to support caregiver resources (Collins & Swartz, 2011; Talley & Crews 2007a). Public health systems need a strategy to address caregiving, and the Caregiver Module added to the Behavioral Risk Factor Surveillance System (BRFSS) in 2009 was a welcome first step for public health surveillance of caregiver outcomes (Talley & Crews, 2007b). However, the BRFSS Caregiver Module was only implemented in 2009 and 2010 and in only a small sample of states (Centers for Disease Control and Prevention [CDC], 2013). In 2008, the CDC produced a monograph titled “Assuring Healthy Caregivers, A Public Health Approach to Translating Research into Practice: The RE-AIM Framework,” to guide a public health response to caregiving needs (CDC, 2008). However, the CDC caregiver monograph is specific to the aging population requiring caregiving and not the IDD population.
As our society becomes more diverse, a holistic approach is needed in the design and implementation of needed caregiver programs and policies so they are meaningful (Lee, 2007). Eckenwiler (2007) proposed using the ecological model to inform caregiver research, policy, and practice given the complexity of the caregiving role. The ecological model allows for a more holistic view of the caregiving role, acknowledging the intertwined relationships between the caregiver, their immediate social network, community, and larger systems of care (Eckenwiler, 2007). In Table 2 we propose a list of critical domains to include in a comprehensive caregiver assessment using the ecological model. A caregiver assessment that addresses all the domains we highlight will ensure that the caregiver's own needs, support needs, the needs of the care recipient, and both current and anticipated needs will be considered, while upholding guiding philosophies of service delivery including self-determination, and respect for family partnerships.
Recent federal initiatives hold much promise to providing much needed resources for family caregivers, and their care recipients with IDD. As the disability service system relies more on home- and community-based services, evaluating how existing and new initiatives help to improve quality of life for family caregivers will be vital to their success.
This review indicates that the needs of family caregivers are complex and varied depending on diagnosis, characteristics of the family situation, and changing caregiving roles. This literature review found mental health, physical health, and economic outcomes that could be identified though caregiver assessments and addressed with interventions. Economic challenges are being addressed through several mechanisms including paying family caregivers, enhancing labor policies to provide more flexibility for family caregivers, providing economic counseling, and providing tax incentives. The complexity and variability of the U.S. disability service system makes implementation of evaluation measures challenging. However, the aging U.S. population, aging population of adults with IDD, and emphasis on home- and community-based services means understanding the needs of family caregivers is critical. In addition, recent estimates from 2009 indicate that 221,898 individuals with IDD in the U.S. are currently on a wait list to receive HCBS waiver services relying on natural supports with no assistance from formal services and supports (Kaiser Family Foundation, 2011). Comprehensive assessment of formal and informal caregiver needs and supports available and/or accessible can help prioritize formal resources and services more effectively.
For Dr. Perkins, this project was supported by a grant awarded to the Florida Center for Inclusive Communities, A University Center for Excellence in Developmental Disabilities Education, Research, and Services (#90-DD-0668) by the Administration on Intellectual and Developmental Disabilities, Administration for Community Living, Department of Health and Human Services.
Heather J. Williamson (e-mail: email@example.com), University of South Florida, College of Public Health, Department of Community and Family Health, 13201 Bruce B. Downs Blvd., MDC0056, Tampa, FL 33612, USA; Elizabeth A. Perkins, Florida Center for Inclusive Communities/UCEDD, University of South Florida.