A qualitative study of informal caregiver perceptions of the benefits of an early dementia diagnosis.
Caregivers
Dementia
Early diagnosis
Mild cognitive impairment
Qualitative research
Journal
BMC health services research
ISSN: 1472-6963
Titre abrégé: BMC Health Serv Res
Pays: England
ID NLM: 101088677
Informations de publication
Date de publication:
24 Apr 2024
24 Apr 2024
Historique:
received:
07
08
2023
accepted:
05
04
2024
medline:
25
4
2024
pubmed:
25
4
2024
entrez:
24
4
2024
Statut:
epublish
Résumé
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. 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. 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. 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.
Sections du résumé
BACKGROUND
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
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
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
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.
Identifiants
pubmed: 38658907
doi: 10.1186/s12913-024-10957-6
pii: 10.1186/s12913-024-10957-6
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
508Informations de copyright
© 2024. The Author(s).
Références
Lewis F, Schaffer SK, Sussex J, O’Neill P, Cockcroft L. The trajectory of dementia in the UK– making a difference. 2014. https://www.alzheimersresearchuk.org/wp-content/uploads/2015/01/OHE-report-Full.pdf . Accessed 26 Feb 2024.
Diagnoses NHSDRD. September 2022. https://digital.nhs.uk/data-and-information/publications/statistical/recorded-dementia-diagnoses/september-2022 . Accessed 31 May 2022.
Government S. National dementia strategy: 2017–2020. 2017.
Department of Health. Living well with dementia: a national dementia strategy. Department of Health (UK); 2009.
Power MC, Willens V, Prather C, Moghtaderi A, Chen Y, Gianattasio KZ, et al. Risks and benefits of clinical diagnosis around the time of Dementia Onset. Gerontol Geriatr Med. 2023;9:23337214231213184.
doi: 10.1177/23337214231213185
Winblad B, Palmer K, Kivipelto M, Jelic V, Fratiglioni L, Wahlund L-O, et al. Mild cognitive impairment–beyond controversies, towards a consensus: report of the International Working Group on mild cognitive impairment. J Intern Med. 2004;256:240–6.
doi: 10.1111/j.1365-2796.2004.01380.x
pubmed: 15324367
Mitchell AJ, Shiri-Feshki M. Rate of progression of mild cognitive impairment to dementia–meta-analysis of 41 robust inception cohort studies. Acta Psychiatr Scand. 2009;119:252–65.
doi: 10.1111/j.1600-0447.2008.01326.x
pubmed: 19236314
Jack CR Jr, Bennett DA, Blennow K, Carrillo MC, Dunn B, Haeberlein SB, et al. NIA-AA Research Framework: toward a biological definition of Alzheimer’s disease. Alzheimers Dement. 2018;14:535–62.
doi: 10.1016/j.jalz.2018.02.018
pubmed: 29653606
Blatchford L, Cook J. Patient perspectives about mild cognitive impairment: a systematic review. Clin Gerontol. 2022;45:441–53.
doi: 10.1080/07317115.2020.1805536
pubmed: 32819218
Dunne RA, Aarsland D, O’Brien JT, Ballard C, Banerjee S, Fox NC, et al. Mild cognitive impairment: the Manchester consensus. Age Ageing. 2021;50:72–80.
doi: 10.1093/ageing/afaa228
pubmed: 33197937
Dubois B, Padovani A, Scheltens P, Rossi A, Dell’Agnello G. Timely diagnosis for Alzheimer’s Disease: A literature review on benefits and challenges. J Alzheimers Dis. 2016;49:617–31.
doi: 10.3233/JAD-150692
pubmed: 26484931
Prince M, Bryce R, Ferri C. World Alzheimer Report 2011: The benefits of early diagnosis and intervention. 2011.
Brodaty H, Donkin M. Family caregivers of people with dementia. Dialogues Clin Neurosci. 2009;11:217–28.
doi: 10.31887/DCNS.2009.11.2/hbrodaty
pubmed: 19585957
pmcid: 3181916
Brodaty H, Woodward M, Boundy K, Ames D, Balshaw R, PRIME Study Group. Prevalence and predictors of burden in caregivers of people with dementia. Am J Geriatr Psychiatry. 2014;22:756–65.
doi: 10.1016/j.jagp.2013.05.004
pubmed: 24012226
Woods B, Arosio F, Diaz A, Gove D, Holmerová I, Kinnaird L, et al. Timely diagnosis of dementia? Family carers’ experiences in 5 European countries. Int J Geriatr Psychiatry. 2019;34:114–21.
doi: 10.1002/gps.4997
pubmed: 30246266
de Vugt ME, Verhey FRJ. The impact of early dementia diagnosis and intervention on informal caregivers. Prog Neurobiol. 2013;110:54–62.
doi: 10.1016/j.pneurobio.2013.04.005
pubmed: 23689068
Gaugler JE, Kane RL, Kane RA, Newcomer R. Early community-based service utilization and its effects on institutionalization in dementia caregiving. Gerontologist. 2005;45:177–85.
doi: 10.1093/geront/45.2.177
pubmed: 15799982
Rasmussen J, Langerman H. Alzheimer’s Disease - Why we need early diagnosis. Degener Neurol Neuromuscul Dis. 2019;9:123–30.
pubmed: 31920420
pmcid: 6935598
Lliffe S, Manthorpe J. The hazards of early recognition of dementia: a risk assessment. Aging Ment Health. 2004;8:99–105.
doi: 10.1080/13607860410001649653
pubmed: 14982713
Malterud K, Siersma VD, Guassora AD. Sample size in qualitative interview studies: guided by Information Power. Qual Health Res. 2016;26:1753–60.
doi: 10.1177/1049732315617444
pubmed: 26613970
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
doi: 10.1191/1478088706qp063oa
Braun V, Clarke V. Conceptual and design thinking for thematic analysis. Qualitative Psychol. 2022;9:3–26.
doi: 10.1037/qup0000196
Gibbs GR. Different approaches to Coding. Sociol Methodol. 2012;42:82–4.
doi: 10.1177/0081175012460853
Patton MQ. Enhancing the quality and credibility of qualitative analysis. Health Serv Res. 1999;34(5 Pt 2):1189–208.
pubmed: 10591279
pmcid: 1089059
Gerstenecker A, Triebel KL, Martin R, Snyder S, Marson DC. Both Financial and Cognitive decline Predict Clinical Progression in MCI. Alzheimer Dis Assoc Disord. 2016;30:27–34.
doi: 10.1097/WAD.0000000000000120
pubmed: 26900988
pmcid: 4765910
Tolbert S, Liu Y, Hellegers C, Petrella JR, Weiner MW, Wong TZ, et al. Financial Management skills in Aging, MCI and Dementia: Cross Sectional relationship to 18F-Florbetapir PET cortical β-amyloid deposition. J Prev Alzheimers Dis. 2019;6:274–82.
pubmed: 31686100
Fraga Dominguez S, Storey JE, Glorney E. Characterizing elder abuse in the UK: a description of cases reported to a National Helpline. J Appl Gerontol. 2022;41:2392–403.
doi: 10.1177/07334648221109513
pubmed: 35765209
pmcid: 9561799
Han SD, Boyle PA, James BD, Yu L, Bennett DA. Mild cognitive impairment and susceptibility to scams in Old Age. J Alzheimers Dis. 2016;49:845–51.
doi: 10.3233/JAD-150442
pubmed: 26519434
Fenton L, Weissberger GH, Boyle PA, Mosqueda L, Yassine HN, Nguyen AL et al. Cognitive and neuroimaging correlates of financial exploitation vulnerability in older adults without dementia: implications for early detection of Alzheimer’s disease. Neurosci Biobehav Rev. 2022;:104773.
Toepper M, Falkenstein M. Driving fitness in different forms of dementia: an update. J Am Geriatr Soc. 2019;67:2186–92.
doi: 10.1111/jgs.16077
pubmed: 31386780
Chihuri S, Mielenz TJ, DiMaggio CJ, Betz ME, DiGuiseppi C, Jones VC, et al. Driving Cessation and Health outcomes in older adults. J Am Geriatr Soc. 2016;64:332–41.
doi: 10.1111/jgs.13931
pubmed: 26780879
pmcid: 5021147
Vernooij-Dassen M, Derksen E, Scheltens P, Moniz-Cook E. Receiving a diagnosis of dementia: the experience over time. Dementia. 2006;5:397–410.
doi: 10.1177/1471301206067114
Milne A. The D word: reflections on the relationship between stigma, discrimination and dementia. J Ment Health. 2010;19:227–33.
doi: 10.3109/09638231003728166
pubmed: 20441486
Yates S, Samra C. Challenges in disclosing and receiving a diagnosis of dementia: a systematic review of practice from the perspectives of people with dementia, carers, and healthcare…. Int Bus Rev. 2021.
Vince A, Clarke C, Wolverson EL. The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study. Int Psychogeriatr. 2017;29:93–104.
doi: 10.1017/S1041610216001484
pubmed: 27745556
Gaugler JE, Anderson KA, Zarit SH, Pearlin LI. Family involvement in nursing homes: effects on stress and well-being. Aging Ment Health. 2004;8:65–75.
doi: 10.1080/13607860310001613356
pubmed: 14690870
Clare L, Martyr A, Henderson C, Gamble L, Matthews FE, Quinn C, et al. Living alone with Mild-To-Moderate dementia: findings from the IDEAL cohort. J Alzheimers Dis. 2020;78:1207–16.
doi: 10.3233/JAD-200638
pubmed: 33104029
Samsi K, Abley C, Campbell S, Keady J, Manthorpe J, Robinson L, et al. Negotiating a labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia. Int J Geriatr Psychiatry. 2014;29:58–67.
doi: 10.1002/gps.3969
pubmed: 23625551
Bamford C, Wheatley A, Brunskill G, Booi L, Allan L, Banerjee S, et al. Key components of post-diagnostic support for people with dementia and their carers: a qualitative study. PLoS ONE. 2021;16:e0260506.
doi: 10.1371/journal.pone.0260506
pubmed: 34928972
pmcid: 8687564
Low L-F, Gresham M, Phillipson L. Further development needed: models of post-diagnostic support for people with dementia. Curr Opin Psychiatry. 2023;36:104–11.
doi: 10.1097/YCO.0000000000000848
pubmed: 36705009
Wheatley A, Bamford C, Brunskill G, Booi L, Dening KH, Robinson L. Implementing post-diagnostic support for people living with dementia in England: a qualitative study of barriers and strategies used to address these in practice. Age Ageing. 2021;50:2230–7.
doi: 10.1093/ageing/afab114
pubmed: 34240114
pmcid: 8675435
Bamford C, Wilcock J, Brunskill G, Wheatley A, Harrison Dening K, Manthorpe J, et al. Improving primary care based post-diagnostic support for people living with dementia and carers: developing a complex intervention using the theory of change. PLoS ONE. 2023;18:e0283818.
doi: 10.1371/journal.pone.0283818
pubmed: 37134099
pmcid: 10155958
Couch E, Belanger E, Gadbois EA, DePasquale N, Zhang W, Wetle T. I know that my role is going to change: a mixed-methods study of the relationship between amyloid-β PET scan results and caregiver burden. Aging Clin Exp Res. 2022;:1–11.