The experience of carers of people with Down Syndrome who develop dementia

• Main Author: Foster, Angela
• Published: University of Birmingham 2012
• Subjects: 155; BF Psychology
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.566116

The literature review draws on research relating to diagnoses of, and living with, learning disability and dementia and draws out the implications for having a relative with both Down syndrome and dementia. The review demonstrates that more research is needed into the experiences of people who care for adults with Down syndrome and dementia. The qualitative study explores family member and professional carer perspectives on caring for adults with Down syndrome and dementia. Data was analysed using interpretative phenomenological analysis (IPA) looking at professional carer and family member experiences separately. For family members four themes emerged; dementia and understanding; emotional containment; relationships and difficulties endured. For professional carers four themes emerged; dementia meaning; containment; witnessing others suffering and person-centred. The themes were similar for both groups. The main difference was the emotional content. Family members were immersed in the experiences and it was a painful part of their lives, whereas staff carers talked about the experiences from an observer position. Possible reasons for this difference are discussed in terms of psychodynamic defences and attachment theory. The importance of emotional containment for both groups is also highlighted and how this can be developed further within service delivery to help prevent distress.