Experiences of post-diagnostic supports when living with intellectual disability and dementia: A qualitative exploration.

Abstract

As people with intellectual disability live longer, the number of people living with dementia is increasing, creating an imperative to implement tailored post-diagnostic supports that enable identity, self-determination, quality of life and well-being. To inform the development of post-diagnostic guidance for persons with intellectual disability living with dementia, a qualitative descriptive study was undertaken to understand experiences of accessing and using post-diagnostic supports and desired future supports. Four main themes resulted: 1. Being me: a sense of self through connection and valued life pursuits; 2. Meeting the social and personal needs of the person; 3. Formal processes that support people living with intellectual disabilities and dementia; 4. Challenges in supporting people living with intellectual disabilities and dementia. Findings identified areas of importance to living well, emphasising sense of self, social connectedness and meeting changing needs and care requirements in varied contexts through collaborative pre-emptive planning centred on the person.