Compound Caregiving: Toward a Research Agenda.

Aging family caregivers of adults with intellectual and developmental disabilities (IDD) have unique circumstances setting them apart from the general caregiving population. Such differences include the extensive duration of the caregiving, and health concerns that manifest in the caregiver and individuals with IDD over time. Because of increasing longevity, family caregivers are likely to become compound caregivers (i.e., individuals caregiving for multiple people). Almost 70% of family caregivers of individuals with IDD experience compound caregiving, yet we know very little about compound caregiving. In this article, we highlight the importance of supporting compound caregivers by identifying research issues that address current challenges and future directions. Implications for research are noted, including the need for multidimensional outcome measures and longitudinal studies.

The Relation Between Multiple Informal Caregiving Roles and Subjective Physical and Mental Health Status Among Older Adults: Do Racial/Ethnic Differences Exist?

PURPOSE OF THE STUDY: The present study examined whether race/ethnicity moderated the relation between type of caregiving role (none, one, or multiple care recipients) and subjective physical and mental health among older adults. DESIGN AND METHODS: The sample was drawn from the 2009 California Health Interview Survey. Racially/ethnically diverse adults aged 55 and older (n = 24,241) were categorized into 3 groups by caregiving roles: noncaregivers (n = 18,626; referent), caregivers with a single caregiving role (n = 4,023), and caregivers with multiple caregiving roles (n = 1,772). A 2-way analysis of covariance was conducted to test main and interaction effects. RESULTS: After adjustment for covariates, noncaregivers reported significantly worse self-rated health and lower psychological distress than caregivers with any type of role. The interaction between race/ethnicity and caregiving roles was significant only for self-rated health (p < .05). Blacks with multiple caregiving roles had poorer self-rated health than those with a single caregiving role and better self-rated health than noncaregivers, whereas other racial/ethnic groups with multiple caregiving roles had better self-rated health compared to both noncaregivers and those with a single caregiving role. Our sensitivity analysis showed that controlling caregiving-related variables present only among caregivers eliminated the differences in self-rated health between the two types of caregivers. IMPLICATIONS: Findings suggest that caregivers report better self-rated health than noncaregivers and that the relation of multiple caregiving roles with self-rated health differs by race/ethnicity, with blacks differing from other racial/ethnic groups. This implies that caregivers experience gain, or are selected into the role of caregiving by virtue of having good health.

Health Care Access for Adults With Intellectual and Developmental Disabilities: A Scoping Review.

Adults with intellectual and/or developmental disabilities (IDD) often experience health disparities. To address disparities, Healthy People 2020 includes specific disability and health goals focused on improving health care access. The study's purpose was to review the literature exploring health care access for adults with IDD to identify opportunities for occupational therapy research and practice. A scoping review was completed of articles discussing health care access among adults with IDD in the United States. Thirty-seven articles met the inclusion criteria. Results are framed using the ecology of human performance theory identifying person and environmental issues affecting health care access of adults with IDD. Opportunities exist for occupational therapy to improve participation and health of adults with IDD through engaging in research and practice efforts addressing health care access. Occupational therapy could develop interventions to establish skills and abilities and recommend changes to the health care environment.

Implementation of Medicaid Managed Long-Term Services and Supports for Adults With Intellectual and/or Developmental Disabilities in Kansas.

Many adults with intellectual and/or developmental disabilities (IDD) can access health and long-term services and supports (LTSS) through Medicaid. States are reforming their Medicaid LTSS programs from a fee-for-service model to a Medicaid managed LTSS (MLTSS) approach, anticipating improved quality of care and reduced costs, although there is limited evidence of MLTSS effectiveness. This study's objective was to contribute to the growing MLTSS research literature by describing MLTSS implementation in Kansas for adults with IDD. Thirty-one stakeholders completed in-depth semi-structured interviews, representing state or regional groups, service coordination providers, and family caregivers. Findings identify key aspects of the Centers for Medicare and Medicaid Services' new MLTSS regulations in the design and implementation of MLTSS programs.

Guidelines for dementia-related health advocacy for adults with intellectual disability and dementia: National Task Group on Intellectual Disabilities and Dementia Practices.

Increasing numbers of adults with intellectual disabilities (ID) are living into old age. Though this indicates the positive effects of improved health care and quality of life, the end result is that more adults with ID are and will be experiencing age-related health problems and also exhibiting symptoms of cognitive impairment and decline, some attributable to dementia. Early symptoms of dementia can be subtle and in adults with ID are often masked by their lifelong cognitive impairment, combined with the benign effects of aging. A challenge for caregivers is to recognize and communicate symptoms, as well as find appropriate practitioners familiar with the medical issues presented by aging adults with lifelong disabilities. Noting changes in behavior and function and raising suspicions with a healthcare practitioner, during routine or ad hoc visits, can help focus the examination and potentially validate that the decline is the result of the onset or progression of dementia. It can also help in ruling out reversible conditions that may have similar presentation of symptoms typical for Alzheimer's disease and related dementias. To enable caregivers, whether family members or staff, to prepare for and advocate during health visits, the National Task Group on Intellectual Disabilities and Dementia Practices has developed guidelines and recommendations for dementia-related health advocacy preparation and assistance that can be undertaken by provider and advocacy organizations.

Family caregivers of adults with intellectual and developmental disabilities: outcomes associated with U.S. services and supports.

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.

Self-injurious behavior in older adults with intellectual disabilities.

Self-injurious behavior (SIB) is a distressing type of problem behavior that may be exhibited in individuals with intellectual disabilities (IDs). This article provides an overview of SIB, its underlying causes and functions, as well as other key variables associated with its manifestation. Adults with IDs are routinely living longer. Given this rapidly emerging and expanding population, special attention is given to SIB in aging adults with IDs that may result from age-related risk factors. Risks include increasing and unresolved health issues, physical changes, declining physical abilities, transitions to new residential environments, and the potential for experiencing loss and bereavement. The article concludes with practice implications for social workers who may encounter older individuals with IDs and SIB.

Into the unknown: aging with autism spectrum disorders.

Research investigation of older adults with autism spectrum disorders (ASD) noticeably lags behind studies of children and younger adults with ASD. This article reviews the current literature regarding a range of quality of life outcomes of aging adults with ASD. Studies that have addressed life expectancy, comorbid physical and mental health issues, ASD symptomatology, and social, residential, and vocational outcomes are reviewed. Research challenges in identifying older cohorts of adults with ASD are also discussed, and notable areas of concern are highlighted. Overall, aging with ASD does present challenges, but there is also evidence that positive outcomes are attainable. The article concludes with brief recommendations on how to optimize the aging process for individuals with ASD.

An innovative clerkship module focused on patients with disabilities.

Lack of medical training results in physicians being unprepared to provide care to people with disabilities, which, in turn, contributes to the substantial health disparities that are evident in this population. Few medical schools or primary care residencies address the care of adults with disabilities. Competencies and guidelines to assist American physicians in caring for patients with physical or intellectual disabilities have yet to be established, thus making educational goals unclear. This article describes one novel training module regarding people with disabilities that was developed at the University of South Florida Health, Morsani College of Medicine (USF) and inserted into the primary care clerkship during a major curriculum redesign in 2005. Since then, all USF third-year medical students have been required to participate in this disability-related course component. The authors describe the module's development and integration into the primary care clerkship, as well as the specific elements of their curriculum. By using a variety of teaching modalities in the classroom and community, and especially by involving people with disabilities themselves, the medical students have a very comprehensive learning experience regarding people who have physical, sensory, or intellectual disabilities. The authors have been able to show that USF medical students, on completion of this module, demonstrate improved knowledge, attitudes, and comfort in caring for people with disabilities, which the authors believe will lead to improved health and health care access for this underserved population. Suggestions for program replication, including common challenges, are also discussed.

Association of single-nucleotide polymorphisms in CCR6, TAGAP, and TNFAIP3 with rheumatoid arthritis in African Americans.

OBJECTIVE: We previously reported an analysis of single-nucleotide polymorphisms (SNPs) in 3 validated European rheumatoid arthritis (RA) susceptibility loci, TAGAP, TNFAIP3, and CCR6, in African American patients with RA. Unexpectedly, the disease-associated alleles were different in African Americans from those in Europeans. In an effort to better define their contribution, we performed additional SNP genotyping in these genes. METHODS: Seven SNPs were genotyped in 446 African American patients with RA and in 733 African American control subjects. Differences in minor allele frequency between the RA cases and controls were analyzed after controlling for the global proportion of European admixture, and pairwise linkage disequilibrium (LD) was estimated among the SNPs. RESULTS: Three SNPs were significantly associated with RA: the TNFAIP3 rs719149 A allele (OR 1.22 [95% confidence interval (95% CI) 1.03-1.44], P = 0.02), the TAGAP rs1738074 G allele (OR 0.75 [95% CI 0.63-0.89, P = 0.0012), and the TAGAP rs4709267 G allele (OR 0.74 [95% CI 0.60-0.91], P = 0.004). Pairwise LD between the TAGAP SNPs was low (r(2) = 0.034). The haplotype containing minor alleles for both TAGAP SNPs was uncommon (4.5%). After conditional analysis of each TAGAP SNP, its counterpart remained significantly associated with RA (rs1738074 for rs4709267 P = 0.00001 and rs4709267 for rs1738074 P = 0.00005), suggesting independent effects. CONCLUSION: SNPs in regulatory regions of TAGAP and an intronic SNP (TNFAIP3) are potential susceptibility loci in African Americans. Pairwise LD, haplotype analysis, and SNP conditioning analysis suggest that these 2 SNPs in TAGAP are independent susceptibility alleles. Additional fine-mapping of this gene and functional genomic studies of these SNPs should provide further insight into the role of these genes in RA.

Compound caregiving: when lifelong caregivers undertake additional caregiving roles.

OBJECTIVE: Lifetime parental caregivers of adults with intellectual disabilities (ID) may also become caregivers to other family members. This study investigated caregiver experiences of compound caregiving (i.e. additional caregiving roles) and its association with caregiver quality of life. PARTICIPANTS: Ninety-one older caregivers living with their adult son/daughter with ID were interviewed. Mean age of the caregivers was 60 years and their sons'/daughters' mean age was 29 years. MAIN OUTCOME MEASURES: Compound caregiving status, physical and mental health, life satisfaction, depressive symptomatology, and desire for alternative residential placement for their co-residing son/daughter. RESULTS: Thirty-four (37%) reported being current compound caregivers to an additional care recipient, predominantly a mother, father, or spouse. Caregivers averaged 39 hours per week fulfilling their primary caregiving tasks, an additional 12 hours per week on the compound caregiving role, and the median duration of compound caregiving was 3 years. Compared with the non-compound caregivers, the compound caregivers had increased desire to place their son/daughter into residential care, though no group differences were apparent in life satisfaction, depressive symptomatology, physical health, or mental health. The most problematic issues reported by compound caregivers were having little personal time and a lack of adequate help from others. CONCLUSION: Compound caregiving was often experienced, and may galvanize these lifetime caregivers to start making future plans for their sons/daughters. Future research is warranted to refine more homogeneous groupings of compound caregivers, who may be at greater risk for adverse outcomes.

Individual differences in well-being in older breast cancer survivors.

Older women who survive breast cancer may differ significantly in their long-term well-being. Using a risk and protective factors model, we studied predictors of well-being in 127 women age 70 and above with a history of at least 1 year's survival of breast cancer. Mean post-cancer survivorship was 5.1 years. Using life satisfaction, depression and general health perceptions as outcome variables, we assessed whether demographic variables, cancer-related variables, health status and psychosocial resources predicted variability in well-being using correlational and hierarchical regression analyses. Higher age predicted increased depression but was not associated with life satisfaction or general health perceptions. Cancer-related variables, including duration of survival, and type of cancer treatment, were not significantly associated with survivors' well-being. Poorer health status was associated with poorer well-being in all three dependent variables. After controlling for demographics, cancer-related variables, and health status, higher levels of psychosocial resources including optimism, mastery, spirituality and social support predicted better outcome in all three dependent variables. While many older women survive breast cancer without severe sequelae, there is considerable variability in their well-being after survivorship. Successful intervention with older breast cancer survivors might include greater attention not only to cancer-specific concerns, but also attention to geriatric syndromes and functional impairment, and enhancement of protective psychosocial resources.

Impact of breast cancer survivorship on quality of life in older women.

Quality of life (QOL) is an important outcome for cancer survivors; but although age is a major risk factor, most breast cancer survivorship studies are conducted with younger women. The objective of our study was to compare QOL in a sample of older breast cancer survivors to a sample of older women who were never diagnosed with breast cancer. A sample of 127 older breast cancer survivors as identified by a cancer registry was compared to a demographically equated sample of 87 older women participating in an epidemiological study. Both groups completed a questionnaire and participated in an interview to measure QOL. The older breast cancer survivors scored worse in the Medical Outcomes Study-Short Form, a measure of health-related QOL. Survivors reported no more depressive symptoms or anxious mood than the comparison group, but scored lower in measures of positive psychosocial well-being, including life satisfaction, mastery, and spiritual well-being, and reported more depressed mood and days affected by fatigue. Older breast cancer survivors show multiple indications of decrements in their health-related quality of life, and lower psychosocial well-being than the comparison group. These decrements may represent deficits in reserve capacity that predispose older cancer survivors to functional disability but may not be readily detected in typical clinical evaluations given the multiple impairments common in geriatric populations. Results suggest a need for greater attention to promoting functioning and psychological well-being among older cancer survivors, even when they may not have obvious cancer-related medical complications.