Diverse Family Caregivers of Adults with Alzheimer’s Disease and Related Dementias
Bottom Line
We need more information to understand the needs and strengths of diverse family caregivers of adults with Alzheimer’s Disease and Related Dementias.
Details
As part of the Southwest Health Equity Research Collaborative, we were recently awarded a one year grant (July 2019-June 2020) titled A Multilevel Examination of Health Equity among Ethnic and Rural Alzheimer’s Disease and Related Dementias (ADRD) Caregivers (Grant # NIMHD 3 U54 MD012388-03S1). Study Background: Thirty-five percent of Native Americans are predicted to be diagnosed with ADRD over the next 25 years. Emerging evidence has indicated that ADRD caregivers from diverse backgrounds underuse formal support services and have different experiences with ADRD compared with White caregivers. For example, diverse caregivers report more meaning and mutual benefit from the caregiving experience. Diverse ADRD caregivers also demonstrate knowledge gaps regarding ADRD conditions and available resources. ADRD caregivers living in rural areas also experience unique challenges regarding access and use of support services. At present, very little is known about the unique needs, assets, resources, and health outcomes of ADRD caregivers who are racially/ethnically diverse and also reside in rural areas. Finally, adults with Down syndrome experience earlier onset of ADRD symptoms and higher prevalence of ADRD as compared to the general population, and little is known about the experiences of these family caregivers and the resources they require. The long-term goal of this study is to develop culture-based, multi-system programs for underserved (Native American, Hispanic/Latino, rural) ADRD family caregivers that recognize their unique strengths and needs.
Study Activities: First, we will gather input from a small number of Native American, Hispanic, and rural caregivers, providers, and policy makers to give feedback to us about the survey we are constructing to ensure that the ADRD caregiver survey is inclusive of diverse perspectives, respectful, relevant, and comprehensive. Then, we plan to begin distributing the survey to ADRD caregivers in the northern Arizona region in September, followed by focus groups and interviews in the next few months. These data collection activities will continue through the beginning of next year, and our study will conclude by next July, 2020. During the course of the study, we will also create a map of existing and potential locations for ADRD resources from publicly available lists and resources. All of our study results will be distributed to interested communities to assist in their support of efforts for ADRD caregivers.
Emerging Issues in Individual and Family Resilience
Bottom Line
Chautauqua conference 2020 logo.
Over the next few months, I will be writing a chapter in a book focused on fostering belonging for individuals with intellectual and developmental disabilities and their family caregivers. My co-author, Dr. Lynne Tomasa, and I will be writing a book chapter focused on aging adults with intellectual and developmental disabilities, their family caregivers, and decisions about future planning.
Details
The development of this book is being led by Oklahoma State University’s Center for Family Resilience as part of their annual meeting called Chautauqua: Conference on Family Resilience.
Family Caregiver outcomes
Bottom Line
Liz Perkins and I at AAIDD Conference Presenting This Project
Family caregivers experience health, wellness, and economic outcomes associated with their caregiving role and we are not assessing their needs and strengths to address them in real time.
Details
The following is the abstract and then citation for a systematic literature review regarding health and wellness outcomes for family caregivers of individuals with intellectual and/or developmental disabilities.
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.
Family Caregivers: Lack of supports
Bottom Line
Family caregivers of individuals with intellectual and/or developmental disabilities play a central role in their day-to-day supports, yet are not included in decisions to inform access to resources for their loved one and also not asked about their specific needs as a family caregiver to maintain their caregiving role.
Details
The following are abstracts and articles regarding the lack of family caregiver support services identified within policy changes.
Me with my dissertation committee, dissertation was focused on the topic of managed care and family caregivers
Paper 1 Summary: A majority of individuals with intellectual and developmental disabilities need the support of a family caregiver. In the USA, more states are transitioning to a managed care model to provide long‐term services and supports (LTSS) and family caregivers are vital partners in the successful management of LTSS. This study's purpose is to illustrate the lived experience of receiving LTSS in a managed care model from the family caregiver perspective. In‐depth semi‐structured interviews were completed with 16 caregivers in four states with Medicaid managed LTSS (MLTSS). The themes include the importance of the family caregiver as supported and active partners in the provision of MLTSS, the family caregiver experiences with care coordination and access to services in MLTSS, and the family caregivers’ overall impression of MLTSS. Results indicate caregiver advocacy is critical to coordinating needed MLTSS and family support services help caregiver's maintain their vital role in the MLTSS system. Access to services and care coordination in MTLSS varies depending on state of residence. Some caregivers experienced less flexibility in the provision of services and supports and limited access to services making it more complicated for them to feel supported in their caregiving role. Care coordination in MLTSS was largely seen as paperwork processing function. Family caregivers can provide a wealth of knowledge from lived experiences on best practices for MLTSS. Given the move to more home and community‐based services, the role of the family caregiver as an active partners in MLTSS will remain the reality for many individuals with IDD. Family caregivers are a key component in MLTSS and more needs to be done to encourage their involvement in the design and oversight of MLTSS. More research is needed to explore best practices for effective stakeholder engagement in the provision of MLTSS.
Paper 2 Summary: Adults with intellectual and/or developmental disabilities (IDD) in the United States are supported by both formal Medicaid‐funded long‐term services and supports and family caregivers. Lack of alternative housing options and wait lists for long‐term services and supports means the role of the family caregiver is and will continue be critical. Rising long‐term services and supports costs combined with goals to improve care coordination and access to services are driving more states to change the design of their long‐term services and supports systems to a Medicaid‐Managed Long‐Term Services and Supports (MLTSS) approach. Best practices for implementing MLTSS for individuals with IDD include acknowledging the family caregiver role. The current study's aim is to understand how family caregivers and their roles are recognized in MLTSS for adults with IDD in Kansas. Kansas was selected given their unique approach to MLTSS for adults with IDD, referred to as KanCare. In‐depth semi‐structured telephone interviews were completed with 31 stakeholders in Kansas, including statewide/regional representatives (N = 13), service coordination providers (N = 7), and family caregivers (N = 11). Additional family support services were available in KanCare, but families had difficulty accessing them. No formal processes were reported for assessing the needs of family caregivers in KanCare and families found communications with managed care entities challenging. Families reported difficulties with taking on responsibility of managing in‐home supports and there were concerns about being paid to provide care as a guardian. Family caregivers play a critical role in MLTSS, including assisting with care coordination and access to services. However, their role was not formally acknowledged in KanCare. Future research, practice, and policy efforts should focus on promoting family caregiver assessments and identifying best practices for supporting family caregivers in MLTSS.