Do people with early stage dementia experience Prescribed Disengagement®? A systematic review of qualitative studies
Background: Prescribed Disengagement®is the description of the post-diagnostic advice given to people after a diagnosis of dementia, which explicitly or implicitly suggests that the person should be slowing down or pulling back from activities. This results in isolation, loss of hope, self-esteem and self-identity, and threatens social health. This study aims to review whether Prescribed Disengagement®can be identified in the literature on subjective experiences of people living with early dementia.
Methods: A systematic search was performed. Inclusion criteria were original empirical qualitative studies published in English that addressed the subjective experiences of living with a diagnosis of objectively defined early dementia. Thematic synthesis was undertaken.
Results: Thirty-five papers involving 373 participants were included. Following a diagnosis, people with dementia struggled with self-identity, independence, control and status, activities, stigma, and how to view the future. Reactions in these areas ranged from active and positive to negative and passive. Many studies reported participants' dissatisfaction with the way the diagnosis was communicated. There was insufficient information provided about dementia and limited treatments and support offered. The diagnosis process and post-diagnostic support may have contributed to disempowerment of the person with dementia, made it more difficult to accept the diagnosis, and exacerbated negative views and self-stigma around dementia.
Conclusions: These results do not support the idea of Prescribed Disengagement®. However disengagement may have been implied during the diagnosis process and post-diagnostic support. Research is needed on how to improve the communication of dementia diagnosis and support people to live well post-diagnosis.