[A version of this item appears in: Dementia: the Latest Evidence Newsletter (RWHT), Volume 1 Issue 11, June 2011].
This qualitative exploratory study investigated the experience receiving a diagnosis of dementia and how this affects people; the help and information people report having received while taking the tests; what they were told about their medication and whether they accepted or rejected this advice. This research aimed to understand the experiences, expectations and service needs of older persons with dementia, from the perspective of these people and their carers. It was conducted in north London, Salford and Newcastle / Northumbria, thereby capturing the diversity of experiences and different service configurations.
Topics covered include: attitudes towards disclosure of a diagnosis of dementia; benefits and disadvantages to receiving a diagnosis; experiences of receiving a diagnosis of dementia; information provision; factors affecting disclosure and recall; coping with a diagnosis: people with dementia’s perspectives; coping with a diagnosis: carers’ perspectives; long-term consequences of disclosure of dementia; memory services and participants; transitions in uncertainty; internalising dialogue; confirming positions; seeking expert advice; being tested; seeking understanding; sources of knowledge; understandings of dementia; outcomes of information; perception of support or the lack thereof; limited knowledge generation; greater fear; expectations and experiences of memory services; expectations and hopes from services; ‘early intervention’, specifically medication; expectations of accurate, timely diagnosis; expectations of ‘closure’; efficient, person-centred service; expectations and hopes for the future; expectation of the condition; expectations from medication; expectation of emotions being contained; expectations of being able to rely on shared social network for practical as well as emotional help; long-term management of the condition; practical coping strategies; emotional coping styles; carrying on as normal and maintaining personhood; the role of
carers; maintaining independence; practical proactive approach and information seekers; shared togetherness; perception of the future; reported levels of satisfaction; disappointed expectations; reaction to diagnosis; other criticisms; satisfaction with services; consequences for caregiving; communication and information along the dementia pathway; knowing what is happening; wanting to know and understand what is wrong; people benefit from pertinent advice; conclusion: limitations, implications and recommendations; limitations of this study; recommendations; national issues; issues for commissioners and practitioners; research questions; conclusion and bibliography.
Manthorpe, J. Samsi, K. [and] Campbell, S. [et al] (2011), ‘The Transition from Cognitive Impairment to Dementia: Older People’s Experiences. Final Report. The National Institute for Health Research (NIHR) Service Delivery and Organisation Programme. London: National Institute for Health Research: January 2011. (Click here for an executive summary of the report).
Robinson, L. Gemski, A. [and] Abley, C. [et al] (2011). The transition to dementia – individual and family experiences of receiving a diagnosis: a review. International Psychogeriatrics / IPA, February 1st 2011. (Click here to view the PubMed abstract).
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Jessen, F. Amariglio, RE. [and] Buckley, RF. [et al] (2020). The characterisation of subjective cognitive decline. Lancet Neurology. January 17th 2020. [Epub ahead of print].