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      Experiences of Family Caregivers of Individuals with ID and Dementia

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          Abstract

          Introduction: Dementia poses a number of impairments in cognitive functioning impacting everyday operational 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 individuals diagnosed with both ID and dementia.

          Method: Individual interviews were conducted among six participants, who were all family caregivers of individuals diagnosed with both ID and dementia.

          Results: Based on the results from the content analysis of interview responses, four themes emerged: (a) difficulty 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 diagnosis 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. Caregivers 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.

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          Most cited references28

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          Caring for a relative with dementia: family caregiver burden.

          This paper is a report of part of a study to investigate the burden experienced by families giving care to a relative with dementia, the consequences of care for the mental health of the primary caregiver and the strategies families use to cope with the care giving stressors. The cost of caring for people with dementia is enormous, both monetary and psychological. Partners, relatives and friends who take care of patients experience emotional, physical and financial stress, and care giving demands are central to decisions on patient institutionalization. A volunteer sample of 172 caregiver/care recipient dyads participated in the study in Cyprus in 2004-2005. All patients were suffering from probable Alzheimer's type dementia and were recruited from neurology clinics. Data were collected using the Memory and Behaviour Problem Checklist, Burden Interview, Center for Epidemiological Studies-Depression scale and Ways of Coping Questionnaire. The results showed that 68.02% of caregivers were highly burdened and 65% exhibited depressive symptoms. Burden was related to patient psychopathology and caregiver sex, income and level of education. There was no statistically significant difference in level of burden or depression when patients lived in the community or in institutions. High scores in the burden scale were associated with use of emotional-focused coping strategies, while less burdened relatives used more problem-solving approaches to care-giving demands. Caregivers, especially women, need individualized, specific training in how to understand and manage the behaviour of relatives with dementia and how to cope with their own feelings.
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            Dementia in Down syndrome: unique insights for Alzheimer disease research

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              Down syndrome: the brain in trisomic mode.

              Down syndrome is the most common form of intellectual disability and results from one of the most complex genetic perturbations that is compatible with survival, trisomy 21. The study of brain dysfunction in this disorder has largely been based on a gene discovery approach, but we are now moving into an era of functional genome exploration, in which the effects of individual genes are being studied alongside the effects of deregulated non-coding genetic elements and epigenetic influences. Also, new data from functional neuroimaging studies are challenging our views of the cognitive phenotypes associated with Down syndrome and their pathophysiological correlates. These advances hold promise for the development of treatments for intellectual disability.
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                Author and article information

                Journal
                10.26407
                Journal for ReAttach Therapy and Developmental Diversities
                JRTDD
                ReAttach Therapy International Foundation
                2589-7799
                03 June 2020
                05 July 2020
                : 3
                : 1
                Affiliations
                [1 ]Eastern Michigan University College of Health and Human Services, School of Social Work, Michigan, USA
                [2 ]Erskine College, Special Education Department, South Carolina, USA
                Author notes
                Correspondence: Christina N. Marsack-Topolewski ( ctopole1@ 123456emich.edu )
                Article
                10.26407/2020jrtdd.1.29
                96cdcd65-a1f1-47b5-9e2d-3f21d787033d
                © Marsack-Topolewski, N. C., Brady, M. A.

                This is an open access article published by ReAttach Therapy International Foundation and distributed under the Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0).

                History
                : 04 May 2020
                : 28 May 2020
                : 02 June 2020
                Page count
                Pages: 11
                Categories
                Special Education and Rehabilitation

                Pediatrics,Psychology,Special education,Health & Social care,Clinical Psychology & Psychiatry
                intellectual disability,developmental disabilities,dementia,caregiving

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