Early diagnosis and intervention for people with dementia is becoming a priority, as has been reflected in the “Dementia Case Finding Scheme”. Some GPs are concerned about the effects of early diagnosis and disclosure on patients and carers, however. This systematic review examines how people accommodate and adapt to the diagnosis of dementia.
The authors reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, concerning diagnosis, the breaking of bad news and the transition to becoming a person with dementia. Thematic analysis identified key themes, commonalities, barriers to earlier diagnosis, and the support identified as helpful. Overarching themes emerged:
- Pathways through diagnosis, including impact on identity, roles and relationships
- Resolution of conflicts to accommodate a diagnosis. Topics include the acceptability of support, whether to focus on the present or the future and issues concerning the use or avoidance of knowledge.
- Strategies and support to minimise the impact of dementia.
Barriers to diagnosis were found to include stigma, the normalisation of symptoms, and lack of knowledge.
Studies commonly report a lack of specialist support particularly post-diagnosis.
The thematic analysis suggests that research might focus on the development and evaluation of interventions designed to provide support after diagnosis.
Bunn, F. Goodman, C. [and] Sworn, K. [et al] (2012). Psychosocial factors that shape patient and carer experiences of dementia diagnosis and treatment: a systematic review of qualitative studies. PLoS Medicine, October 2012, Vol.9(10), e1001331. (Click here to view the PubMed abstract).
[A brief reference to this item features in Dementia and Elderly Care: the Latest Evidence Newsletter (RWNHST), Volume 3 Issue 5, January 2013].