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

O'Malley, Mary ORCID:, Carter, Janet, Stamou, Vasileios, LaFontaine, Jenny, Oyebode, Jan and Parkes, Jacqueline (2019) Receiving a diagnosis of young onset dementia: a scoping review of lived experiences. Aging and Mental Health. pp. 1-12. ISSN 1360-7863

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O'Malley_etal_AMH_2020_Receiving_a_diagnosis_of_young_onset_dementia_a_scoping_review_of_lived_experiences.pdf - Accepted Version

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Objectives: The personal experience of receiving a diagnosis of young onset dementia (YOD) is often overlooked in a complex assessment process which can require substantial investigation. To understand the lived experiences of younger people undergoing assessment and receiving a diagnosis of dementia, we undertook a thematic synthesis of qualitative studies published until November 2018. The aim of this review was to inform a Delphi study with younger people diagnosed with dementia to learn how diagnostic process could be improved, and to identify the strengths and weaknesses of current approaches and help educate professionals concerning key issues.
Method: Systematic searches of appropriate bibliographic databases were conducted to collate literature involving self-reported experiences of diagnosis of YOD. Eight out of 47 initially-identified papers satisfied our search term criteria, and all papers were quality assessed using Walsh & Browne’s criteria for methodological appraisal.
Results: The review of the literature emphasises that delays in diagnosis can often be attributed to (1) delays in accessing help by the younger person, and (2) misattribution of symptoms by the clinician. The impact of diagnosis is influenced by the language used by the clinician, and the younger people diagnosed with dementia and their families’ reactions to the diagnosis vary from feelings of reassurance (in that their symptoms are now explained), to shock and destabilisation.
Conclusion: Understanding the perspective of a younger person undergoing assessment for dementia is important both in terms of promoting future engagement with services and in designing and evaluating interventions to improve the diagnostic process. 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.

Item Type: Article
Identifier: 10.1080/13607863.2019.1673699
Additional Information: This is an Accepted Manuscript of an article published by Taylor & Francis in Aging and Mental Health on 24 Oct 2020, available online: 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.
Keywords: Young onset dementia, dementia assessment, diagnosis, lived experiences
Subjects: Medicine and health
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Depositing User: Mary O'Malley
Date Deposited: 13 May 2020 09:57
Last Modified: 06 Feb 2024 16:02


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