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Centre for Policy on Ageing | |
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Perspectives on family caregiving of people aging with intellectual disability affected by dementia
— commentary from the International Summit on Intellectual Disability and Dementia | | Author(s) | Nancy Jokinen, Tiziano Gomeiro, Karen Watchman |
| Journal title | Journal of Gerontological Social Work, vol 61, no 4, May-June 2018 |
| Publisher | Taylor and Francis, May-June 2018 |
| Pages | pp 411-431 |
| Source | http://www.tandfonline.com |
| Keywords | Cognitive impairment ; Mental disability ; Dementia ; Family care. |
| Annotation | This article, an output of the 2016 International Summit on Intellectual Disability and Dementia, examined familial caregiving situations within the context of a support-staging model for adults with intellectual disability (ID) affected by dementia. Seven narratives offered context to this support-staging model to interpret situations experienced by caregivers. The multidimensional model had two fundamental aspects: identifying the role and nature of caregiving as either primary (direct) or secondary (supportive); and defining how caregiving was influenced by stage of dementia. It is proposed that staging can affect caregiving via different expressions: (1) the 'diagnostic phase', (2) the 'explorative phase', (3) the 'adaptive phase', and (4) the 'closure phase'. The international narratives illustrated direct and indirect caregiving with commonality being extent of caregiver involvement and attention to the needs of an adult with ID. The study concludes that the model is the first to empirically formalise the variability of caregiving within families of people with ID that is distinct from other caregiving groups, and that many of these caregivers have idiosyncratic needs. A support-staging model that recognises the changing roles and demands of carers of people with ID and dementia can be useful in constructing research, defining family-based support services and setting public policy. (JL). |
| Accession Number | CPA-180615209 A |
| Classmark | E4: E7: EA: P6:SJ |
Data © Centre for Policy on Ageing |
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| ...from the Ageinfo database published by Centre for Policy on Ageing. |
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