TY - JOUR
T1 - A qualitative study of informal caregiver perceptions of the benefits of an early dementia diagnosis
AU - Couch, Elyse
AU - Co, Melissa
AU - Albertyn, Chris
AU - Prina, Matthew
AU - Lawrence, Vanessa
N1 - Funding Information:
This work is supported by a studentship for EC from the Economic Social Research Council through the London Interdisciplinary Social Science Doctoral Training Partnership (LISS-DTP).
Publisher Copyright:
© The Author(s) 2024.
PY - 2024/12/1
Y1 - 2024/12/1
N2 - Background: Current and former dementia policies in the United Kingdom (UK) recommend diagnosing dementia early, or as close to the onset of symptoms as possible. Informal caregivers play an important role in initiating the diagnostic process and providing support to people living with dementia. Therefore, this study aimed to explore caregiver perceptions of the benefits of an early diagnosis. Methods: We conducted semi-structured interviews with 12 current and former informal caregivers to people with dementia in the UK in 2020. We analysed the interviews using thematic analysis. Results: Benefits of an early diagnosis included: (1) protecting the person with dementia from financial or physical harm, (2) timely decision-making, and (3) access to services and treatments following a diagnosis. We identified three conditions necessary for the benefits of an early diagnosis to be felt: (1) adequate prognostic information, (2) someone to advocate on behalf of the person with dementia, and (3) a willingness to seek and accept the diagnosis. Conclusions: In this study, we identified how diagnosing dementia close to the onset of symptoms could be beneficial and the conditions necessary for these benefits to be felt. The findings highlight the importance of an early diagnosis for enabling people with dementia and caregivers to make practical arrangements and to access services. Further research is needed to build on the findings of this study by exploring the perspectives of people with dementia and by including a larger, more diverse sample of caregivers.
AB - Background: Current and former dementia policies in the United Kingdom (UK) recommend diagnosing dementia early, or as close to the onset of symptoms as possible. Informal caregivers play an important role in initiating the diagnostic process and providing support to people living with dementia. Therefore, this study aimed to explore caregiver perceptions of the benefits of an early diagnosis. Methods: We conducted semi-structured interviews with 12 current and former informal caregivers to people with dementia in the UK in 2020. We analysed the interviews using thematic analysis. Results: Benefits of an early diagnosis included: (1) protecting the person with dementia from financial or physical harm, (2) timely decision-making, and (3) access to services and treatments following a diagnosis. We identified three conditions necessary for the benefits of an early diagnosis to be felt: (1) adequate prognostic information, (2) someone to advocate on behalf of the person with dementia, and (3) a willingness to seek and accept the diagnosis. Conclusions: In this study, we identified how diagnosing dementia close to the onset of symptoms could be beneficial and the conditions necessary for these benefits to be felt. The findings highlight the importance of an early diagnosis for enabling people with dementia and caregivers to make practical arrangements and to access services. Further research is needed to build on the findings of this study by exploring the perspectives of people with dementia and by including a larger, more diverse sample of caregivers.
KW - Caregivers
KW - Dementia
KW - Early diagnosis
KW - Mild cognitive impairment
KW - Qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85191249265&partnerID=8YFLogxK
U2 - 10.1186/s12913-024-10957-6
DO - 10.1186/s12913-024-10957-6
M3 - Article
C2 - 38658907
AN - SCOPUS:85191249265
SN - 1472-6963
VL - 24
JO - BMC Health Services Research
JF - BMC Health Services Research
IS - 1
M1 - 508
ER -