This scoping review addressed the following questions: (a) What types of caregiver interventions are being done in both aging and developmental disability research? (b) How are these interventions similar and different? (c) What kinds of outcomes do these interventions have? (d) What innovative approaches are these interventions using? and (e) What can each field (developmental disabilities and gerontology) learn from the other based on this review? The disability review spanned 20 years (1992–2012), resulting in 14 studies; the aging review spanned 5 years (2008–2012), resulting in 55 studies. Data from the final selected studies were then extracted and compared on research design, type of intervention (governmental programs, small-group psychosocial, and other), and outcomes. Generally, in both fields, family-support interventions benefited participants' well-being and improved service access and satisfaction. Increased partnership between the fields of aging and developmental disabilities is critical to future scholarship in caregiving for both populations.
By 2030, it is estimated that approximately 20% of the U.S. population will be 65 years or older (U.S. Census Bureau, 2010). As the aged population increases, so does the demand for their care. More than 65 million people, or 29% of the U.S. population, currently serve as caregivers for family members or friends who are chronically ill, have disabilities, or are aged, and it is anticipated this number will continue to grow (Family Caregiver Alliance, 2012). This increasing need for care is the case for both the general population and people with developmental disabilities.
Although research and services for the general aging population and those aging with intellectual and developmental disabilities (IDD) have generally not intersected, their needs will increasingly overlap. Adults with IDD are living longer and have poorer health outcomes, as well as earlier onset of age-related conditions (Bittles et al., 2002; Haveman et al., 2010; Krahn, Hammond, & Turner, 2006) in comparison with the general population. There are an estimated 641,000 adults age 60 and over with IDD; and researchers project this number to double to more than 1.2 million people by 2030, coinciding with the aging of the baby boomers (Factor, Heller, & Janicki, 2012). Hence, the increased lifespan of both people with IDD and caregivers will result in growing numbers of people with IDD living into old age, as well as greater numbers of aged parents providing care for their adult children with disabilities (Factor et al., 2012). About 71% of individuals with IDD live at home; and in 25% of these homes, the family caregiver is over 60 years of age. Families are the largest single provider of care to adults with IDD; about 60% of these individuals reside with family (Braddock et al., 2013; Fujiura, 1998; Lakin, Prouty, & Alba, 2007). Despite research demonstrating positive aspects of caregiving (e.g., Heller, Miller, & Factor, 1997; Ylvén, Björck-Åkesson, & Granlund, 2006), caregivers continue to face many challenges. National Health Interview Survey data indicate higher levels of depressive symptoms and health issues and poorer access to health care for some caregivers of adults with IDD in comparison with other families (Ha, Hong, Seltzer, & Greenberg, 2008; Magana & Smith, 2006; Yamaki, Hsieh, & Heller, 2009). Also, families with a person who has IDD often experience financial hardship because these families may work fewer hours, quit working, or experience high care costs (Ha et al., 2008; Rimmer, Braddock, & Fujiura, 1994). Despite such challenges, there are limited interventions to support these caregivers and their families. As people with IDD become older, these supports and interventions will become increasingly important in helping families access services and avoid institutionalization (Heller, Caldwell, & Factor, 2007).
In the general population, when conditions such as stroke and Alzheimer's impair older adults, their adult offspring, siblings, or spouses are most frequently the primary source of care. Gerontologists have identified that caring for an older adult leads to burden and depression to varying degrees. Two-thirds of caregivers in the United States experience medium-to-high levels of burden (National Alliance for Caregiving & AARP, 2009). Much research on caregiving examines the stresses related to providing care, concerns about the care recipients' health, and uncertainty in the ability to provide adequate care, all of which wears on the physical and mental health of caregivers (Evercare & National Caregiving Alliance, 2006). This stress and burden often contributes to depression as well (Pinquart & Sörensen, 2003). Researchers have created and evaluated interventions to support family caregivers of older adults for decades, as evidenced by various review articles (Acton & Kang, 2001; Cooke, McNally, Mulligan, Harrison, & Newman, 2001). However, the gerontology literature typically does not include aging adults with IDD. For example, a recent American Psychological Association report focused on caregivers and did not mention intellectual and developmental disabilities; caregiving was defined as “providing care to both the aging and chronically ill” (American Psychological Association, 2011). The lack of inclusion of people aging with IDD is a gap in the aging literature that must be addressed.
To more clearly comprehend the way caregiving is researched and understood in these two discrete populations, a distinction must be made. The disability community infrequently uses the term “caregiving” and offers the term “family support” instead. Family support is defined as comprising the following:
A comprehensive and coordinated set of strategies that are designed to ensure that families who are assisting family members with [IDD] have access to person-centered and family-centered resources, supports, services, and other assistance. These strategies are directed to the family unit, but ultimately benefit the individual with [IDD]. (Hecht, Reynolds, Agosta, McGinley, & Moseley, 2011)
This distinction in terminology highlights the differences in how both fields approach interventions. Family support interventions represent a philosophy of assisting the entire family unit. Conversely, caregiving may imply a unidirectional relationship between the caregiver and care recipient, and so caregiving interventions often focus more on the caregiver than the recipient or dyad (i.e., caregiver and care recipient). The terminology used by each field is also influenced by the differences in populations. Families providing care for people with disabilities are often younger, and have a different relationship to the care recipient. Additionally, developmental disabilities are life-long; whereas aging caregiving transforms over time and is more related to the onset of age-related conditions.
The present scoping review addressed the following questions: (a1) What types of interventions for caregivers are being done in both aging and developmental disability research? (b) How are these interventions similar and different? (c) What kinds of outcomes do these interventions have? (d) What innovative approaches are these interventions using? and (e) What can each field (developmental disabilities and gerontology) learn from the other based on this review of caregiver interventions?
In the present study, we first scoped the disability literature on family support interventions for adults with developmental disabilities, and then reviewed the general aging literature on interventions for caregivers of older adults. The disability review spanned 20 years of research to fully survey the landscape of this smaller field, whereas the aging review limited the scope to 5 years to identify emerging ideas and themes in this more broadly researched area.
This review takes a bidirectional approach to aging and disability caregiving research. One of our primary goals in conducting the present review was to explore how the fields of gerontology and developmental disabilities can inform one another. Due to the aging of adults with IDD, efforts to close the gap that exists between the two broad areas of aging and disability research have the potential to advance both fields, and improve the lives of people aging with long-term disabilities and their caregivers.
Scoping reviews identify and analyze key findings and patterns (Arksey & O'Malley, 2005; Levac, Colquhoun, & O'Brien, 2010). This study used Arksey and O'Malley's (2005) five stage methodological framework: (a) identifying the research question; (b) identifying relevant studies; (c) study selection; (d) charting the data; and (e) collating, summarizing, and reporting results. To retrieve the most consistent results across aging and developmental disability research, we searched the same databases: PsychInfo, Medline, CINAHL, and Google Scholar. The searches were limited to peer reviewed, empirical intervention studies in English that examined programs to support family caregivers of people with either a developmental disability in the disability literature or an age-related condition in the gerontological literature. Both quantitative and qualitative studies were included. Due to the interest in empirical studies of caregiving interventions, reviews or theoretical articles were excluded.
Interventions targeting care recipients were included if they also measured outcomes about the caregiver. Articles were reviewed systematically and were excluded for not meeting the inclusion criteria at two different stages in the scoping review process: at the abstract level and after full review of the article (see Figure 1). The data from the final selected studies were then charted and extracted. A thematic analysis was used (Levac et al., 2010) to compare the research study designs, types of intervention, and outcomes. Two reviewers extracted the data, categorized them separately, and then came to a resolution on discrepancies. If a resolution between the two reviewers could not be reached, a third reviewer was consulted; and the research team had a discussion until an agreement was reached. Table 1 contains the results of this data extraction, which compares the findings from the two reviews of developmental disability and aging caregiver interventions.
The developmental disability review spanned 20 years, 1992–2012. The following additional search terms were used: caregivers, respite, caregiving psychology, psychosocial, and caregiver interventions, cognitive disabilities, intellectual disabilities, and family support. Other terms included mental retardation, developmental disabilities, mental handicap, and learning disabilities, autism, chromosomal abnormality, Fragile X, cerebral palsy, Down syndrome, and spina bifida. As previously discussed, the developmental disability professional community does not use the term “caregiver” as often as the aging community does and thus family support yielded more results. Only studies in which the person with the disability was an adult (18 years and over) were included. Studies focusing on caregiving for children with IDD were excluded due to the desire to compare studies that include adult participants in both the aging and IDD literatures. The search yielded 1,245 articles about families of people with disabilities. Scanning titles lessened the records to 43. After a review of the abstracts, the number was reduced to 21 articles; an additional seven were eliminated on reading the full text for not fitting the criteria. The remaining articles totaled 14 records (see Figure 1).
The aging search examined studies of an aged target population (where the caregiver's age averaged 50 years and above) for the years 2008–2012. The aging literature was restricted to 2008–2012 to make the analysis and comparisons between fields more manageable. Search terms specific to this topic area included caregivers, family support, respite, caregiving psychology, psychosocial, and caregiver interventions, aging, aged, older adults, dementia, stroke, and cancer. The initial search yielded 3,367 studies. Reviewing titles to remove articles based on the criteria reduced that number to 143. Reviewing abstracts limited the articles to 93. Full text review further eliminated articles that were not empirical studies or otherwise did not meet the criteria, which reduced the number of articles to 55 (see Figure 1).
The results of the thematic analysis of the articles included in the scoping review were extracted for comparison. Table 1 shows the result of the extractions categorized by care recipient population (i.e., dementia, terminal illness, stroke, general older adult, IDD, and other), research design (i.e., randomized control trial, quasi-experimental, no comparison group/multiple observations, cross-sectional, and other), type of intervention (i.e., psychosocial (support and counseling or education and training), government programs (care coordination and support services or financial aid and home supports), and other), and the types of outcomes (i.e., mental health, caregiving appraisal, out-of-home placement, health, employment and productivity, future planning, access to supports, care recipient outcomes, and other). Both positive and negative outcomes were explored. For instance, caregiving appraisal included both caregiver burden and caregiver satisfaction.
Developmental Disabilities Interventions and Outcomes
The articles reviewed were categorized into two broad intervention categories: government programs (71.4%) and small-group psychosocial interventions (28.6%). Government programs were further divided into care coordination (21.4%) and home and financial supports (50%). Psychosocial programs were broken into two categories: education and training (14.3%) and support and therapy (14.3%). The study designs included randomized control (7.1%), single group pre-post-test design (21.4%), cross-sectional (21.4%), and post-intervention evaluation and other designs (42.9%). Outcomes included mental health (57.1%), caregiving appraisal (71.4%), out-of-home placement (7.1%), employment and productivity (14.3%), future planning (50.0%), access to supports (42.9%), and care recipient outcomes (64.3%). (See Table 1.)
Government programs: Care coordination
Interventions involving care coordination streamlined the processes of organizing care for individuals with disabilities and also ensured that families had options in order to make the most appropriate choices for their specific situations. The outcomes in these studies demonstrated that these interventions benefited family caregivers, as well as the family members with disabilities.
Bigby, Ozanne, and Gordon (2002) evaluated two pilot case management programs called “Options for Older Families,” through which older caregivers received intensive case management and access to discretionary funds. Successful case management with older caregivers of people with IDD included implementing crisis prevention, providing support workers and respite care, and holding community education sessions. Families reported being better able to make plans and decisions about their future, increased access to formal services, greater trust in formal services, and improved case management. Additionally, people with IDD had increased access to community-based recreational activities and programs. Bigby and Ozanne (2004) also compared the “Options for Older Families” intervention to a mainstream disability case coordination program. Although few significant differences existed between the programs, outcomes demonstrated that the “Options for Older Families” program uniquely provided community education, and their case managers were more likely to coordinate activities outside of the home.
Government programs: Home and financial supports
Interventions that provided home and financial supports were the most common type of intervention in the developmental disabilities literature. Studies in this category examined the effect of consumer direction in family support services. Consumer-directed (also termed “self-directed”) services and supports allow participants to manage their service delivery using a person-centered planning process. A series of studies examined Illinois' Home-Based Support Services Program, a waiver program that included funding for a variety of family and individual support services, including home health aides, personal care, day programs, transportation, and assistive technology.
Generally, home and financial support programs facilitated better access to supports and services for the family and care recipient. Families experienced decreased unmet service needs and increased service satisfaction (Caldwell & Heller, 2007; Heller, Miller, & Hsieh, 1999) and fewer out-of-pocket expenses related to their family member's disability (Caldwell, 2006). Positive outcomes were also found for caregivers, such as improved access to health care, increased social engagement, and greater satisfaction with leisure opportunities (Caldwell, 2006). Interventions in this category also reported improved outcomes for the individuals with disabilities, such as increased likelihood of remaining at home (versus moving to an institution) (Heller & Caldwell, 2005) and improved community participation (Caldwell & Heller, 2007; Heller et al., 1999).
Family support governmental interventions also included respite programs, which provide short-term care to the care recipient so the caregiver gets a reprieve in duties. A respite-based intervention noted improvement in the caregivers' mental state (stress and burden), as well as overall social support and life satisfaction (Chou, Tzou, Pu, Kröger, & Lee, 2008).
Psychosocial: Education and training
These interventions included group programs through which participating families received education and training on topics such as future planning, accessing supports, managing finances, and legalities. One of many families' primary concerns is the future safety and security of their relative with disabilities. Future planning interventions target this need by helping aging families plan to avoid crisis and ensure quality care for the coming years.
Outcomes for these interventions benefitted both caregivers and care recipients in numerous ways. For instance, the Rehabilitation Research and Training Center on Aging with Developmental Disabilities developed and evaluated the “Future Is Now” curriculum (Heller & Caldwell, 2006). This program involved training both family members and the person with IDD on a person-centered planning approach, using a peer-led model. This intervention consisted of a legal/financial training session and small-group workshops, which led to decreased caregiver burden and increased opportunities for daily choice-making of the individuals with disabilities. The intervention also increased families' knowledge and confidence in their ability to engage in future planning, secure special needs trusts, and take action on residential planning. Botsford and Rule (2004) held workshop sessions for mothers. These sessions featured lectures from experts on residential, financial, and other needs. In addition to increased confidence and knowledge in their ability to plan for the future of their family member with IDD, participants reported advancing in their own future planning process.
Psychosocial: Support and counseling
Programs in this category differ from education and training interventions as they emphasize emotional help and connecting with other families on caregiving issues. Smith, Majeski, and McClenny (1996) described a support-group program, with six sessions designed to help participating families cope with the demands of caregiving. This program created opportunities for families to meet and discuss challenges. Families also formed meaningful relationships with other caregivers, which improved their awareness of formal services and better enabled them to access supports. Mengel, Marcus, and Dunkle (1996) evaluated a similar intervention, which also provided support with educational components. Meetings were designed to help parents get to know and provide emotional support for each other. Parents found the group helpful, and reported that it gave them new, positive perspectives on caregiving. The group continued to meet after the official sessions were over, providing a further indication of the program's usefulness.
Aging Interventions and Outcomes
Interventions to support family caregivers of older adults crossed ecological strata, ranging from government programs to couples counseling. Approximately 56% of participating care recipients had dementia, which influenced the kinds of programs offered. These interventions generally traversed the same categories as the developmental disability review: the two broad categories of government programs (23.6%) and small-group psychosocial interventions (60%), as well as other types of interventions (16.4%). Government programs were again divided into care coordination (14.5%) and home and financial supports (9.1%). Psychosocial programs were also broken into two categories: support and counseling (20%), and education and training (40%). The study designs included randomized control (43.6%), quasi-experimental (12.7%), single group pre-post design (23.6%), cross-sectional (1.8%) and other study designs, such as participatory action research, qualitative, and post-test only single group design (18.2%). Outcomes included mental health (58.2%), caregiving appraisal (58.2%), out-of-home placement (7.3%), health (14.5%), future planning (3.6%), access to supports (12.7%), care recipient outcomes (14.5%), and other (3.6%). (See Table 1.)
Government programs: Care coordination
Interventions categorized as care coordination were diverse, but all involved care coordination at varying levels. These interventions included a transition-support model (Dementia Support Program) in hospital settings (Ghatack, 2011), a telephone-based intervention (Partners in Dementia Care) to coordinate all arms of care recipients' services in a computer database in partnership with the Alzheimer's Association and the Veterans Administration (Judge et al., 2011), and a program that provided medical care at home in place of going to an emergency room (Knowles, Mason, & Colwell, 2011). Many of the interventions partnered caregivers with care coordinators, nurses, or other health professionals, who recommended and connected families with services and supports, assessed the caregiving dyad, and provided education and advice regarding the care recipient's disability, medication, and coping skills. The majority of these interventions reported outcomes related to increased access to services and supports, increased use of resources, and improved satisfaction with services rendered. These studies also found outcomes for caregivers, such as improved mental health, increased knowledge and skills, and decreased caregiver burden. The Judge et al. (2011) study that used the telephone-based delivery method found that this approach was not only time and cost efficient, but also presented fewer barriers to caregivers' accessing services and increased outreach to underserved families, such as those with transportation difficulties and those living in rural areas. This intervention was the only one in this category to also include future planning as an outcome.
Government programs: Home and financial supports
The majority of interventions in this category featured respite programs, including overnight respite care (Fjelltun, Henriksen, Norberg, Gilje, & Normann, 2009), an in-home respite program (Mensie & Steffen, 2011) and community-based adult day centers (Molzahn, Gallagher, & McNulty, 2009; Park, 2008). In-home respite programs, unlike adult day care, reduced barriers such as difficulty coordinating services, needing to convince the care receipt to attend and participate, and the increased time needed to ready the client to attend respite. The Park (2008) study was unusual in that it examined a culturally competent respite program in a day health care program for stroke survivors in Korea. Another innovative intervention featured a nighttime home-monitoring system that tracked people with dementia to relieve caregivers' worry and improve their sleep (Rowe, Kairalla, & McCrae, 2010). Outcomes for these interventions included maintaining and improving quality of life, relief of psychological stress, decreased caregiver burden, and increased access to supports.
Psychosocial: Education and training
This type of psychosocial intervention educated caregivers about caregiving topics such as communication, wellness, medication management, community resources, care recipient behavior, and self-care. Many interventions also provided information about the care recipient's specific disease or disability; for example, interventions for people with dementia covered memory loss (Judge, Yarry, & Orsulic-Jeras, 2010) and interventions for people who had survived strokes shared stroke prevention strategies (Marsden et al., 2010). The interventions used diverse education strategies, such as a wellness guide (O'Connell, Heslop, & Fennessy, 2010), skill training DVD (Gallagher-Thompson et al., 2010), Internet workshop (Lorig et al, 2012), and in-home trainings and telephone sessions (Nichols, Martindale-Adams, Burns, Graney, & Zuber, 2011). Outcomes included increased knowledge, improved caregiver health, increased confidence in caregiving abilities and coping strategies, and decreased strain, depression, stress, and burden. Several interventions also included care-recipient outcomes, such as improved recovery (Marsden et al., 2010), less functional dependence, and increased engagement (Gitlin, Winter, Dennis, Hodgson, & Hauck, 2010).
One effective intervention model included in multiple studies was the Resources for Enhancing Alzheimer's Caregiver Health (REACH) II intervention (e.g., Burgio et al., 2009; Nichols et al., 2011). Strategies, based on individualized needs, included the following: information and education, skills training, role-playing, problem solving, stress management, and telephone sessions. Burgio et al, (2009) found positive pre-post effects for caregiver health, social support, subjective burden, frustration, and depression, and care recipient behavior problems and mood. Nichols et al. (2011) adapted the REACH II intervention for use in Veterans Administration Medical Centers as part of clinical practice. From baseline to 6 months, caregivers reported significantly decreased burden, depression, and frustration, and fewer troubling dementia-related behaviors.
One novel approach was a psychoeducational intervention for caregivers of a relative who had recently been diagnosed with Alzheimer's disease that used intervention-mapping, a process that involves meeting caregiver's needs through theory-based and evidence-based protocols. Qualitative analysis found that caregivers learned how to communicate better with and care for their relatives and also learned how to seek informal and formal sources of support (Ducharme et al., 2009).
Psychosocial: Support and counseling
Interventions that focused on support and counseling involved providing caregivers with counseling sessions and support groups to improve quality of life and mental well-being. The majority of these interventions focused on assisting caregivers with coping with the challenges and stress they faced and increasing life satisfaction. Some also incorporated unusual elements, such as psych oncology interventions for people with advanced cancer (Hannum Rose, Bowman, Radziewicz, Lewis, & O'Toole, 2009), or interventions based in religion and spirituality (Bormann et al., 2009). Counseling and support were provided in diverse forms. In addition to in-person individual groups, some interventions implemented Internet-based support systems (Chiu et al., 2009), telephone-based cognitive behavioral therapy (Glueckauf et al., 2007), family or dyadic counseling (Brodaty, Mittelman, Gibson, Seeher, & Burns, 2009), and psychotherapeutic nursing home programs (Bakker et al., 2011). The majority of outcomes reported were focused on mental health, such as decreased depression, strain, and burden, and increased life satisfaction, well-being, and self-efficacy. For several interventions, these outcomes were achieved both post-intervention and at follow-up.
Although some studies reported statistically significant outcomes, others reported no significant outcomes. For instance, Andrén and Elmståhl (2008) assessed an intervention that consisted of five weekly educational counseling sessions followed by a 3-month support group. The intervention resulted in an average 6-month delay in nursing home placement for the treatment group. Conversely, Broadaty et al.'s (2009) study of an intervention that comprised five sessions of counseling found no significant difference between the treatment and control group in nursing home placement.
Bormann et al. (2009) implemented an innovative intervention delivered via teleconference that incorporated religion and spirituality. The teleconference format was adopted to increase access. Significant positive effects included decreased caregiver burden, perceived stress, depression, and rumination. Additionally, the intervention increased quality of life and satisfaction.
In the gerontological research we identified a few interventions that did not fit in any of the previous categories. These included some unusual strategies, such as writing programs (Mackenzie, Wiprzucka, Hasher, & Goldstein, 2007), a Singing Together Group (Camic, Williams, & Meeten, 2011), a telephone-based exercise intervention (Connell & Janevic, 2009), in-home videophones to connect with hospice providers (Demiris, Oliver, Courtney, & Day, 2007), a home-based literature “tip of the week” group and a creative movement group (Donorfio, Vetter, & Vracevic, 2010), and alternative therapies (Korn et al., 2009). These interventions had a wide variety of outcomes, including improved mental health, improved physical health, and increased knowledge and skills.
Mackenzie et al. (2007) studied whether expressive writing (i.e., disclosure about stress or trauma) improved health outcomes for family caregivers of physically and cognitively impaired older adults. Two other conditions were created for this study: writing about historical events and writing about one's time management. Time management writing resulted in significant mental and physical health improvements.
The Singing Together Group dyadic intervention for people with dementia and their caregivers (Camic et al., 2011) provided stability for both caregivers' and care recipients' quality of life, even when the health of the person with dementia was declining. Further, qualitative data showed that the singing group promoted the well-being of both people with dementia and their caregivers.
Donorfio et al. (2010) compared three interventions: a home-based literature “tip of the week group,” a creative movement group, and a caregiver's support group. The majority of participants indicated they would participate in their assigned group again for all groups, although those in the support group intervention showed the greatest benefit in terms of mental health.
Korn et al. (2009) studied the benefits of polarity therapy for caregivers of people with dementia. Polarity therapy is an alternative medicine therapy that uses gentle pressure on energy points to help achieve relaxation. The control group was assigned to respite care for the person with dementia and a choice of activity for the caregiver. The polarity therapy group improved more than the other group in the areas of stress, depression, bodily pain, vitality, and general health. This intervention was also significant because it focused on Indian/Alaskan families, which is a population often overlooked in research.
Overall, this review found both developmental disability and aging caregiving and family support interventions benefited participants. Generally, in both fields, psychosocial interventions improved mental state and somewhat reduced caregiver burden; care coordination and respite interventions allowed caregivers to access more services and increased satisfaction. Some interventions also had outcomes related to improved physical health and heath behaviors, employment and productivity, future planning, access to supports, and delayed institutional placement.
Though the needs of older adults and people with disabilities have substantial overlap, aging and disability remain separate fields of study. In the context of this review, only a select few journal articles in the developmental disability literature (e.g., Bigby et al., 2002; Heller & Caldwell, 2006) acknowledged the increasing intersections between aging and disability by examining issues related to aging caregivers of people with IDD. However, no articles in the gerontology literature included people aging with lifelong disabilities such as intellectual or developmental disabilities. Additionally, it is important to bridge the IDD and gerontology literature because many families are caring for both adults who are aging with lifelong disabilities, as well as adults aging into disabilities (Perkins & Haley, 2010). Thus, these two fields still have much to learn from each other. The IDD and aging caregiver literatures have created a dichotomy in caregiving, and both fields need to break down the silos to partner and collaborate. To accomplish this goal, a discussion of what each field can learn from the other follows.
What Aging Can Learn From Disability
In general, the developmental disability family-support literature was far more focused on recipient outcomes than the aging literature. Recipient outcomes were included in 64.3% of the studies in the developmental disability research, compared to 14.5% in the aging research. This difference may be due in part to the developmental disability's emphasis on family supports, which are directed to the entire family with the goal of ultimately benefitting the individual with a disability. Conversely, caregiving interventions in the aging literature often focus primarily on assisting the caregiver. Thus, aging studies could design more interventions that are intended to directly benefit the care recipient or caregiving dyad.
Additionally, the developmental disability family support literature has a greater emphasis on future planning—a topic hardly present in the aging review. Future planning, also sometimes called advanced care planning, is important for people with disabilities, older adults with and without disabilities, and their caregivers. However, as Robinson, Shugrue, Fortinsky, and Gruman (2014) noted, little is currently known about older adults' future planning for care or long-term supports and services. Thus, interventions that focus on future planning may be useful to elders and those who provide their care.
Another significant difference between the disability literature and aging literature in the present review regards the emphasis on self-direction and person-centered planning in the IDD studies. Person-centered planning, which is now required in home- and community-based supports both for developmental disability and aging services, assumes that the person (and those who care about the person) are the primary authorities and drivers of the planning process and can decide what services are received, who supplies the service, and how the services are provided.
For example, in “The Future Is Now” curriculum (Heller & Caldwell, 2006), choices of participants with disabilities are central to the individual plans that are made. Similar interventions might be useful for older adults and their caregivers, as interventions that empower the care recipient also often have positive outcomes for the caregiver. Furthermore, Sundar, Fox, and Phillips (2014) recently evaluated a person-centered approach for older adults and their caregivers, and found that adult child and spousal caregivers experience burden differently. They concluded that more interventions for older people and their caregivers should be person-centered and customized to fit their unique needs.
Another contribution of the disability literature is that many of the interventions featured family peer support and family peer leaders (e.g., Heller & Caldwell, 2006), which is another way in which the empowerment and independence of people with disabilities is emphasized and encouraged. Although few of the interventions in this review in the aging literature featured peer support, older adults benefit from group interaction when the groups are comprised of their similar-aged peers (Bartels et al., 2002). Correspondingly, Keyes et al. (2014) performed a qualitative analysis of peer support for people with dementia and found that peer support had a positive emotional and social effect. Further, peer support was regarded differently from support from professionals, indicating the importance of lived experience and interpersonal relationships.
Last, a major difference between the articles reviewed from the disability and aging literature is that aging more frequently emphasized reducing the negative outcomes of caregiving. While both fields similarly examined caregiving appraisal (71% in disability and 58% in aging) and mental health (57% in disability and 58% in aging), the disability review evaluated future planning (50% in disability, 2% in aging) and access to supports (43% in disability, 13% in aging) at far greater rates. Developmental disability caregiver interventions also evaluated caregivers' abilities to maintain employment (14%). Therefore, while both fields are concerned about negative aspects of caregiving, the developmental disability research seeks to uncover a more balanced set of outcomes. In two of the rare examples in gerontology, Cheng et al. (2012) evaluated a benefits-finding intervention that specifically focused on the positive aspects of caregiving, and Yarry, Judge, and Orsulic-Jeras (2010) implemented an intervention that focused on strengths of the caregiving dyad.
What Disability Can Learn From Aging
Caregiving interventions in the aging review used many unusual and creative strategies. Consequently, quite a few of these interventions were classified as “other” (16.4%), which was not needed for the developmental disability literature in this review. Some of these creative interventions included singing, writing, and dancing, all of which improved caregivers' quality of life. Other interventions used nontraditional delivery strategies, such as a home-based literature program (Donorfio et al., 2010). Yet another distinctive intervention by Korn et al. (2009) used polarity therapy, demonstrating the potential benefits of alternative medicine.
Additionally, several interventions in the aging review employed technology, such as videos (e.g., Gallagher-Thompson et al., 2010) telephones (e.g., Burgio et al., 2009; Gaugler Roth, Haley, & Mittelman, 2008; Judge et al., 2011), and the Internet (e.g., Chiu et al., 2009). This strategy allowed them to better deliver their interventions to caregivers who often have difficulty leaving their home, as well as to caregivers from traditionally underserved population, such as low-income families and families living in rural areas. Technology also has the potential to reach more caregivers for adults with IDD in diverse geographical areas. For example, Lorig et al. (2012) delivered an online support workshop for family caregivers of cognitively impaired aging veterans in multiple states, including California, Nevada, and Hawaii, which could be adapted for families caring for individuals with IDD.
Another contribution of the aging literature in this review is the use of translational approaches to tailor interventions to reach particular communities or cultures. For example, Nichols et al. (2011) adapted the REACH II intervention for veterans. Similarly, Hendrix et al. (2011) implemented an individualized training for caregivers of hospitalized older veterans. These interventions took the unique needs of veterans into account, and also included information specific to veterans, such as Veterans Affairs community healthcare resources. Chiu et al. (2009) evaluated an intervention for Chinese Canadians caring for a family member with dementia, recognizing that cultural beliefs shaped caregivers' needs and that ethno-cultural-linguistic contexts affect service usability. These interventions highlight the importance of cultural competence, an issue rarely discussed in the developmental disability literature reviewed.
Last, gerontology is a more comprehensively researched field, totaling 55 journal articles in 5 years compared to developmental disabilities' 14 journal articles in 20 years. Additionally, studies included in the aging review had stronger research designs. Nearly half (43.6%) of these studies were randomized control trials compared to only one (7.1%) of the developmental disability studies. The aging literature also revealed some novel uses of theory from which the developmental disabilities literature could learn. For example, Gitlin et al. (2010) used the framework of environmental fit (Lawton & Nahemow, 1973) to target modifiable environmental stressors in the homes of people with dementia. These modifications were intended to decrease sensory, physical, and cognitive demands while aligning with patient capabilities. Through this process, the intervention aimed to re-engage people with dementia in daily activities and increase their functionality, thereby decreasing caregiver burden. This innovative intervention demonstrates how theory can be put into practice in meaningful ways for older adults and people with disabilities.
A limitation of this review was that it was not a full systematic review. Hence, the quality of the studies was not evaluated further. Though using scoping review methodology allowed us to more broadly survey two fields of research, we recommend future studies engage in a more rigorous systematic review.
The scoping review methodology also presented several limitations. First, by restricting the aging caregiving literature search to 2008–2012, this study did not include some of the major and sustained studies of psychosocial interventions. Second, by limiting the IDD search to adults, this review did not include interventions related to people with IDD's transition from childhood to adulthood. This scoping review also used a select number of databases. It is highly likely that notable studies have been published in scholarly publications that are not represented in these databases. Yet another limitation is that the IDD and aging literatures conceptualize some aspects of caregiving differently. For example, the use of the word “future planning” as a keyword in our searches for both literatures may not have captured related concepts, such as advance care planning and end of life planning.
Despite numerous connections between older adults and people with disabilities and their family caregivers, research in gerontology and developmental disability studies has remained, for the most part, distinct (Berger, 2013; Lightfoot, 2007). As our society includes growing numbers of elders and disabled people, it is becoming increasingly important for these two fields to communicate and inform one another. Accordingly, the “Toronto Declaration on Bridging Knowledge, Policy, and Practice in Aging and Disability” has called for these fields to collaborate in the areas of research, policy, and practice (Bickenbach et al., 2012).
Such interdisciplinary collaboration is particularly important now that in the United States, the Administration on Intellectual and Developmental Disability and the Administration on Aging are federally under an umbrella agency, the Administration on Community Living, which helps to focus attention and resources on the unique needs of older Americans and people with IDD across the life course. At the federal level, numerous programs now include both disability and aging. Self-directed supports and the transition to Medicaid Managed Care are two key areas with potential to expand family support research and services across aging and disability networks. Additionally, more research is needed on caring for older adults with IDD, particularly the role of siblings and the interdependence between adults with IDD and their family members (Ryan, Taggart, Truesdale-Kennedy, & Slevin, 2014).
More interventions are needed for people with IDD who also develop dementia, a topic not covered by any of the interventions in this review. This work would be timely, given that the National Task Group on Intellectual Disabilities and Dementia has called for including developmental disabilities in the “National Plan to Address Alzheimer's Disease” (Bishop et al., 2015). Further, aging and disability resource centers are also emphasizing person-centered planning, a concept that has emanated from the developmental disabilities field but could benefit people with disabilities of all ages.
Thus, increased partnership between the fields of aging and developmental disabilities is critical to future scholarship in caregiving for both populations. As people with disabilities and their caregivers live longer, researchers conducting disability caregiving research can incorporate ideas from the aging literature into future interventions to support families. Conversely, interventions to help caregivers of older adults are more broadly researched, with many more types of interventions. Gerontologists can also learn from developmental disability researchers who focus on person-centered future planning for families, as well as examine a wide range of outcomes, including the positive outcomes of caring for a family member with a disability.
The contents of this publication were developed under grants from the United States Department of Health and Human Services, Administration for Community Living (ACL), National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant #90RT5020-01-00, #H133B08009, and #90RT5032-01-00. However, those contents do not necessarily represent the policy of the Department of Health and Human Services (DHHS), and you should not assume endorsement by the Federal Government.
Tamar Heller and Hailee M. Gibbons, Department of Disability and Human Development, University of Illinois at Chicago, Illinois; Dora Fisher, Oral Health America, Chicago, Illinois.