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Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers

Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers
Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers
Background: The qualitative research on young onset dementia is providing insights about the ‘lived experience’ of patients and caregivers. However, findings from these studies have seldom been integrated into descriptive overviews. Our aim was to search the qualitative research, to integrate the qualitative findings, and offer an account of the lived experience for patients and caregivers.Method: The search of the qualitative research formed part of a broader comprehensive literature search investigating salient measurement issues in the young onset dementia psychosocial research. Five electronic databases were searched (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) plus supplementary searching of reference sections and use of online search engines. We identified 23 qualitative articles.Results: In the pre-diagnostic period, patients experience changes in cognition and functioning but may be uncertain about changes and their significance. Caregivers may observe changes, think of explanations, and are important in instigating medical intervention. Obtaining a diagnosis may be a demanding process and the possibility of dementia may not be anticipated. In the postdiagnostic period, patients and caregivers use several strategies to cope and adjust. Patients can withdraw from established responsibilities while caregivers assume compensatory roles/duties. Patients perceive changes in their identity while caregivers perceive changes in the caregiver– patient relationship. Both can experience grief, isolation, and stigma.
caregivers, lived experience, patients, qualitative, young onset dementia
1471-3012
579-598
Spreadbury, John H.
164cd819-25dc-49c0-8630-1518a80fc3e6
Kipps, Christopher
e43be016-2dc2-45e6-9a02-ab2a0e0208d5
Spreadbury, John H.
164cd819-25dc-49c0-8630-1518a80fc3e6
Kipps, Christopher
e43be016-2dc2-45e6-9a02-ab2a0e0208d5

Spreadbury, John H. and Kipps, Christopher (2019) Measuring younger onset dementia: What the qualitative literature reveals about the ‘lived experience’ for patients and caregivers. Dementia, 18 (2), 579-598. (doi:10.1177/1471301216684401).

Record type: Article

Abstract

Background: The qualitative research on young onset dementia is providing insights about the ‘lived experience’ of patients and caregivers. However, findings from these studies have seldom been integrated into descriptive overviews. Our aim was to search the qualitative research, to integrate the qualitative findings, and offer an account of the lived experience for patients and caregivers.Method: The search of the qualitative research formed part of a broader comprehensive literature search investigating salient measurement issues in the young onset dementia psychosocial research. Five electronic databases were searched (Medline, CINAHL, PsycINFO, Embase, the Cochrane Library) plus supplementary searching of reference sections and use of online search engines. We identified 23 qualitative articles.Results: In the pre-diagnostic period, patients experience changes in cognition and functioning but may be uncertain about changes and their significance. Caregivers may observe changes, think of explanations, and are important in instigating medical intervention. Obtaining a diagnosis may be a demanding process and the possibility of dementia may not be anticipated. In the postdiagnostic period, patients and caregivers use several strategies to cope and adjust. Patients can withdraw from established responsibilities while caregivers assume compensatory roles/duties. Patients perceive changes in their identity while caregivers perceive changes in the caregiver– patient relationship. Both can experience grief, isolation, and stigma.

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More information

e-pub ahead of print date: 23 January 2017
Published date: 1 February 2019
Keywords: caregivers, lived experience, patients, qualitative, young onset dementia

Identifiers

Local EPrints ID: 429088
URI: http://eprints.soton.ac.uk/id/eprint/429088
ISSN: 1471-3012
PURE UUID: 4448421c-ca0c-4989-a2a1-34937e925368

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Date deposited: 20 Mar 2019 17:30
Last modified: 07 Oct 2020 00:15

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Contributors

Author: John H. Spreadbury
Author: Christopher Kipps

University divisions

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