Experiences of Family Caregivers of Individuals with ID and Dementia

Abstract

Introduction: Dementia poses a number of impairments in cognitive functioning impacting everyday opera- tional tasks and functions. Individuals with intellectual disability (ID) may experience dementia earlier and at a greater rate than the general population. Dementia can pose complex challenges for individuals with ID and their caregivers. Aim: A qualitative phenomenological study was used to examine the lived experiences of caregivers of indi- viduals diagnosed with both ID and dementia. Method: Individual interviews were conducted among six participants, who were all family caregivers of indi- viduals diagnosed with both ID and dementia. Results: Based on the results from the content analysis of interview responses, four themes emerged: (a) diffi- culty getting a dementia diagnosis, (b) barriers to obtaining services, (c) caregiving realities and challenges, and (d) rewards of caregiving. Implications for Practice: To support caregivers, practitioners should be adequately trained on this dual diag- nosis to assess the support needs in helping caregivers obtain adequate services. Conclusion: As individuals with ID continue to live longer and age, many will experience dementia. Caregiv- ers of individuals with ID and dementia are often an overlooked, vulnerable population. Practitioners should be aware of their needs in order to provide adequate support to this caregiving population and individuals with ID and dementia.