Receiving a diagnosis of young onset dementia: a scoping review of lived experiences

Abstract

Objectives

Personal experiences of receiving a diagnosis of young onset dementia (YOD) are often overlooked in a complex assessment process requiring substantial investigation. A thematic synthesis of published until November 2018 qualitative studies was completed to understand the lived experiences of younger people. This informed a Delphi study to learn how diagnostic processes could be improved, identify the strengths and weaknesses of current approaches, and help educate professionals concerning key issues.

Method

Systematic searches of bibliographic databases were conducted involving self-reported experiences of diagnosis of YOD. Eight out of 47 papers identified were quality assessed using Walsh & Browne's criteria for methodological appraisal.

Results

The review emphasises that delays in diagnosis can often be attributed to (1) delays in accessing help, and (2) misattribution of symptoms by the clinician. The impact of diagnosis is influenced by the clinician's use of language; and reactions to diagnosis varied from feelings of reassurance (in that their symptoms are now explained), to shock and destabilisation.

Conclusion

This review suggests that improving the recognition of presenting symptoms, reducing diagnostic errors, and identifying the emotional needs arising from diagnosis are required to improve the diagnostic experience for younger adults, and to promote future engagement with services.

Keywords:

• Young onset dementia
• dementia assessment
• diagnosis
• lived experiences

Acknowledgements

The authors would like to thank the Alzheimer’s Society, YoungDementia UK and Dementia UK for their significant support as external partners of this study. Special mention should also go to The Angela Project’s Public and Patient Involvement (PPI) Group, and Steering Committee for their helpful suggestions.

Disclosure statement

No potential conflict of interest was reported by the authors.