Greenwood, Nan and Smith, Raymond (2016) The experiences of people with young-onset dementia : a meta-ethnographic review of the qualitative literature. Maturitas, 92, pp. 102-109. ISSN (print) 0378-5122
Abstract
Dementia is usually diagnosed in later life but can occur in younger people. The experiences of those with older-onset dementia are relatively well understood but little is known about the experiences of those with young-onset dementia (aged less than 65 years). This meta-ethnography therefore synthesised qualitative literature investigating the experiences of people with young-onset dementia (YOD). Six electronic databases were searched and 1155 studies were identified, of which eight fitted the inclusion criteria. These studies were all from Western countries, were mostly recent (2004-2015) and included the experiences of 87 people with YOD. Participants were generally in their fifties or early sixties and were living at home with others. Many reported difficulties both in the process of receiving a diagnosis and afterwards. Diagnosis felt unexpected, 'out of time' and led to changes in self-identity, powerlessness and changes in relationships. Social exclusion was common. Loss of meaningful activity exacerbated a difficult situation. However, the diagnosis did not mean people's lives were over and many with YOD try to regain control by seeking connections with others with the same condition - sometimes a very important source of support. Overall, people living with YOD face unique social challenges which go beyond those of older people living with dementia and which result in an even greater negative impact on their lives. Interventions that facilitate peer support and allow people with YOD to engage in meaningful activity should be developed and could perhaps be provided by the voluntary sector.
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