When More Is Too Much: Compound Caregiving, Barriers to Services, and Service Support for Older Families of People With Disabilities

Using the theoretical lens of Family Quality of Life, this study evaluated perceptions of older compound caregivers (i.e., caring for more than one family member) regarding their need for services. Quantitative analysis of cross-sectional data collected from 112 caregivers (50 years and older) demonstrated that compound caregivers faced more barriers in accessing services for their families than noncompound caregivers. Although all caregivers shared similar perceptions on the importance, opportunities, initiative, and attainment of service support for their families, compound caregivers had lower stability and satisfaction than noncompound caregivers. Findings highlight the need to develop support programs to equip older caregivers in managing their daily challenges at the individual and family level.

[1]  P. Samuel,et al.  Caregivers’ Perceptions of Family Quality of Life of Individuals with Developmental Disabilities Comorbid with Dementia: A Pilot Study , 2020, Journal for ReAttach Therapy and Developmental Diversities.

[2]  M. Aranda,et al.  Caregiving in the U.S. 2020 , 2020 .

[3]  Christina N. Marsack-Topolewski,et al.  Quality of Life among Compound Caregivers and Noncompound Caregivers of Adults with Autism , 2020, Journal of gerontological social work.

[4]  J. Kosteniuk,et al.  Dementia-Related Education and Support Service Availability, Accessibility, and Use in Rural Areas: Barriers and Solutions , 2020, Canadian Journal on Aging / La Revue canadienne du vieillissement.

[5]  M. Burke,et al.  Future Planning Among Families of Individuals With Intellectual and Developmental Disabilities: A Systematic Review , 2020 .

[6]  Christina N. Marsack-Topolewski,et al.  “I worry about his future!” Challenges to future planning for adult children with ASD , 2020, Journal of Family Social Work.

[7]  Christina N. Marsack-Topolewski,et al.  A Snapshot of Social Support Networks Among Parental Caregivers of Adults with Autism , 2019, Journal of Autism and Developmental Disorders.

[8]  A. Houser,et al.  Valuing the Invaluable: 2019 Update: Charting a Path Forward , 2019 .

[9]  M. Ibrahim,et al.  Predictors of Caregivers’ Satisfaction with the Management of Children with Autism Spectrum Disorder: A Study at Multiple Levels of Health Care , 2019, International journal of environmental research and public health.

[10]  P. Samuel,et al.  Family Quality of Life: Perspectives of Family Caregivers of People with Dementia , 2019, Physical & Occupational Therapy In Geriatrics.

[11]  Melissa L. Harry,et al.  “It's Like Two Roles We're Playing”: Parent Perspectives on Navigating Self-Directed Service Programs with Adult Children with Intellectual and/or Developmental Disabilities , 2018, Journal of Policy and Practice in Intellectual Disabilities.

[12]  Patrick S. Powell,et al.  Understanding Service Usage and Needs for Adults with ASD: The Importance of Living Situation , 2018, Journal of Autism and Developmental Disorders.

[13]  K. Roberto,et al.  Caregiving, intellectual disability, and dementia: Report of the Summit Workgroup on Caregiving and Intellectual and Developmental Disabilities , 2018, Alzheimer's & dementia.

[14]  W. Tarraf,et al.  Family Quality of Life Survey (FQOLS-2006): Evaluation of Internal Consistency, Construct, and Criterion Validity for Socioeconomically Disadvantaged Families , 2018, Physical & occupational therapy in pediatrics.

[15]  S. Winkler,et al.  Family Caregiver Training Program (FCTP): A Randomized Controlled Trial , 2017, The American journal of occupational therapy : official publication of the American Occupational Therapy Association.

[16]  S. Pavarini,et al.  Stress and optimism of elderlies who are caregivers for elderlies and live with children. , 2017, Revista brasileira de enfermagem.

[17]  K. LaDonna,et al.  Evolving Motivations: Patients’ and Caregivers’ Perceptions About Seeking Myotonic Dystrophy (DM1) and Huntington’s Disease Care , 2017, Qualitative health research.

[18]  H. Ouellette-Kuntz,et al.  Parents of Adults with Intellectual and Developmental Disabilities (IDD) and Compound Caregiving Responsibilities , 2017 .

[19]  Emily You,et al.  “There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study , 2017, International Psychogeriatrics.

[20]  B. Grossman,et al.  Family support in late life: A review of the literature on aging, disability, and family caregiving , 2016 .

[21]  F. Pociask,et al.  Concurrent Validity of the International Family Quality of Life Survey , 2016, Occupational therapy in health care.

[22]  J. Mutchler,et al.  The Role of Aging and Disability Resource Centers in Serving Adults Aging with Intellectual Disabilities and Their Families: Findings from Seven States , 2016, Journal of aging & social policy.

[23]  Katherine E. Pickard,et al.  Quality versus quantity: The role of socioeconomic status on parent-reported service knowledge, service use, unmet service needs, and barriers to service use , 2016, Autism : the international journal of research and practice.

[24]  U. Sambamoorthi,et al.  Access to services, quality of care, and family impact for children with autism, other developmental disabilities, and other mental health conditions , 2014, Autism : the international journal of research and practice.

[25]  Kathy Black,et al.  Who Cares for Caregivers? Evidence-Based Approaches to Family Support , 2014, Journal of gerontological social work.

[26]  Jennifer S. Reinke,et al.  Families of individuals with intellectual and developmental disabilities: policy, funding, services, and experiences. , 2013, Intellectual and developmental disabilities.

[27]  A. Turnbull,et al.  The quantitative measurement of family quality of life: a review of available instruments. , 2011, Journal of intellectual disability research : JIDR.

[28]  F. Floyd,et al.  Midlife and aging parents of adults with intellectual and developmental disabilities: impacts of lifelong parenting. , 2011, American journal on intellectual and developmental disabilities.

[29]  L. Pizzi,et al.  The cost-effectiveness of a nonpharmacologic intervention for individuals with dementia and family caregivers: the tailored activity program. , 2010, The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry.

[30]  Elizabeth Perkins The Compound Caregiver: A Case Study of Multiple Caregiving Roles , 2010 .

[31]  Roy I. Brown,et al.  Family Quality of Life: A Framework for Policy and Social Service Provisions to Support Families of Children With Disabilities , 2009 .

[32]  A. Turnbull,et al.  Family Quality of Life: Moving From Measurement to Application , 2009 .

[33]  Roy I. Brown,et al.  The International Family Quality of Life Project: Goals and Description of a Survey Tool , 2007 .

[34]  N. Jokinen Family Quality of Life and Older Families , 2006 .

[35]  Audie A Atienza,et al.  Role stressors as predictors of changes in womens’ optimistic expectations , 2004 .

[36]  S. Bazyk Ordinary Families, Special Children: A Systems Approach to Childhood Disability , 1989 .

[37]  M. Edwards,et al.  Testing the factor structure of the Family Quality of Life Survey - 2006. , 2012, Journal of intellectual disability research : JIDR.

[38]  K. Lacey,et al.  Analysing family service needs of typically underserved families in the USA. , 2012, Journal of intellectual disability research : JIDR.