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What do I really need? Assessment of caregiver support for people with intellectual and developmental disabilities (IDD) and dementia
Author(s) -
Service Kathryn,
Clifford Christine J
Publication year - 2020
Publication title -
alzheimer's and dementia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 6.713
H-Index - 118
eISSN - 1552-5279
pISSN - 1552-5260
DOI - 10.1002/alz.047106
Subject(s) - dementia , caregiver stress , feeling , family caregivers , psychology , medicine , gerontology , nursing , needs assessment , disease , pathology , social psychology , social science , sociology
Background The increased needs of people with an intellectual and developmental disability (IDD) and a dementia related disorder can strain caregivers and existing community support systems. The project team, comprised of IDD and Aging experts and funded, in part, through a federal grant, conducted a needs assessment on the awareness and use of typical community‐based resources such as senior centers. The assessment consisted of both telephone interviews and home visits with group home, shared living, and family caregivers. Method Nurse Practitioner (NP) conducted a total of 95 interviews with 54 site visits, and the evaluator completed 40 interviews with caregivers of people with IDD and dementia diagnosis. Analysis included both qualitative and quantitative data. Caregivers were asked about the following: functional and health status of person with IDD since dementia diagnosis, receipt of dementia specific caregiving training, care confidence levels, perceived barriers to care, and access to community‐based aging resources. Result Caregiver’s most frequent concerns included lack of suitable day programming, planning for the person’s future, and caregiver burnout and stress. 78% reported feeling confident providing care currently and 68% were confident about providing care in the future. Most caregivers are aware of local community resources such as senior centers, Alzheimer’s Association Counseling and an on‐line training series on aging, but rarely used the resources. Conclusion Caregivers generally relied on support from provider agencies indicating a need for increased collaboration across the IDD and Aging human service support systems. Trainings, delivered to both aging advocates and caregivers of people with IDD, and designed to improve communication and collaboration focused on dementia capable care, state systems, and available community resources. In addition, a series of web‐based resources were developed with a focus on IDD and dementia. Results of the assessment will continue to guide resource and training development to improve collaboration and support the relationship between the Aging and IDD communities.