Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study
Tóm tắt
The heterogeneity of symptoms across dementia subtypes has important implications for clinical practice and dementia research. Variation in subtypes and associated symptoms may influence the capability to live well for people with dementia and carers. The aim of this study is to investigate the potential impact of dementia subtypes on the capability to live well for both people with dementia and their carers. The analysis was based on the 1283 dyads of community-dwelling people with dementia and carers in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) project, a large cohort study in Great Britain. Capability to live well was defined using three measures: quality of life, life satisfaction and wellbeing. Structural equation modelling was used to investigate capability to live well in seven dementia subtypes: Alzheimer’s disease (AD), Vascular dementia (VaD), mixed AD/VaD, frontotemporal dementia (FTD), Parkinson’s disease dementia (PDD), Lewy body dementia (LBD) and unspecified/other, accounting for dyadic data structure and adjusting for age and sex, type of relationship between person with dementia and their carer and the number of chronic conditions. The major subtypes in this study population were AD (56%), VaD (11%) and mixed AD/VaD (21%). Compared to participants with AD, people with non-AD subtypes generally reported a lower capability to live well. Carers for people with PDD (− 1.71; 95% confidence interval (CI) – 3.24, − 0.18) and LBD (− 2.29; 95% CI – 3.84, − 0.75) also reported a lower capability to live well than carers for people with AD. After adjusting for demographic factors and comorbidity, PDD (− 4.28; 95% CI – 5.65, − 2.91) and LBD (− 3.76; 95% CI – 5.14, − 2.39) continued to have the strongest impact on both people with dementia and their carers. This study suggests a variation in capability to live well across dementia subtypes. It is important for care providers to consider different needs across subtypes. Health professionals who provide post-diagnostic support may need to pay more attention to the complex needs of people living with PDD and LBD and their carers.
Tài liệu tham khảo
World Health Organization. Dementia: a public health priority. Geneva: World Health Organization; 2012.
Alzheimer’s Society. Dementia UK. 2014. https://www.alzheimers.org.uk/info/20025/policy_and_influencing/251/dementia_uk. Accessed 01 Aug 2018.
UK government, Department of Health. Prime Minister's challenge on dementia. 2020:2015. www.gov.uk/government/publications/prime-ministers-challenge-on-dementia-2020. Accessed 01 Aug 2018
National Health Services England. The well pathway for dementia. 2016. www.england.nhs.uk/mentalhealth/wp-content/uploads/sites/29/2016/03/dementia-well-pathway.pdf. Accessed 01 Aug 2018.
Institute of Medicine. Living well with chronic illness: a call for public health action. Washington: National Academies Press; 2012.
Martyr A, Nelis SM, Quinn C, Wu Y-T, Lamont RA, Henderson C, et al. Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia. Psychol Med. 2018; https://doi.org/10.1017/S0033291718000405.
Hughes JC. Alzheimer's and other dementias. Oxford: Oxford Press; 2011.
Robinson L. Dementia: timely diagnosis and early intervention. BMJ 2015;350:h3029. doi:https://doi.org/10.1136/bmj.h3029.
Bostrom F, Jonsson L, Minthon L, Londos E. Patients with dementia with Lewy bodies have more impaired quality of life than patients with Alzheimer disease. Alzheimer Dis Assoc Disord. 2007;21:150–4.
Thomas P, Lalloue F, Preux P-M, Hazif-Thomas C, Pariel S, Inscale R, Belmin J, Clement J-P. Dementia patients caregivers quality of life: the PIXEL study. Int J Geriatr Psychiatry. 2006;21:50–6.
Zweig YR, Galvin JE. Lewy body dementia: the impact on patients and caregivers. Alzheimers Res Ther. 2014;6:21.
Mioshi E, Foxe D, Leslie F, Savage S, Hsieh S, Miller L, Hodges JR, Piguet O. The impact of dementia severity on caregiver burden in frontotemporal dementia and Alzheimer disease. Alzheimer Dis Assoc Disord. 2013;27:68–73.
Riedijk SR, De Vugt ME, Duivenvoorden HJ, Niermeijer MF, Van Swieten JC, Verhey FR, Tibben A. Caregiver burden, health-related quality of life and coping in dementia caregivers: a comparison of frontotemporal dementia and Alzheimer’s disease. Dement Geriatr Cogn Disord. 2006;22:405–12.
Clare L, Nelis SM, Quinn C, Martyr A, Henderson C, Hindle JV, et al. Improving the experience of dementia and enhancing active life—living well with dementia: study protocol for the IDEAL study. Health Qual Life Outcomes. 2014;12:164.
Diener E, Emmons RA, Larsen RJ, Griffin S. The satisfaction with life scale. J Pers Assess. 1985;49:71–5.
Bech P. Measuring the dimension of psychological general well-being by the WHO-5. Qual Life Newslett. 2004;32:15–6.
Logsdon RG, Gibbons LE, McCurry SM, Teri L. Quality of life in Alzheimer's disease: patient and caregiver reports. New York: Springer; 2000. p. 17–30.
Skevington SM, Lotfy M, O'Connell KA. The World Health Organization's WHOQOL-BREF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL group. Qual Life Res. 2004;13:299–310.
Charlson ME, Charlson RE, Peterson JC, Marinopoulos SS, Briggs WM, Hollenberg JP. The Charlson comorbidity index is adapted to predict costs of chronic disease in primary care patients. J Clin Epidemiol. 2008;61:1234–40.
Stata structural equation modeling reference manual, Release 13. StataCorp LP. 2013. https://www.stata.com/manuals13/sem.pdf. Accessed 01 Aug 2018.
Allan L, McKeith I, Ballard C, Kenny RA. The prevalence of autonomic symptoms in dementia and their association with physical activity, activities of daily living and quality of life. Dement Geriatr Cogn Disord. 2006;22:230–7.
Clague F, Mercer SW, Mclean G, Reynish E, Guthrie B. Comorbidity and polypharmacy in people with dementia: insights from a large, population-based cross-sectional analysis of primary care data. Age Ageing. 2017;46:33–9.
McLean G, Hindle JV, Guthrie B, Mercer SW. Co-morbidity and polypharmacy in Parkinson’s disease: insights from a large Scottish primary care database. BMC Neurol. 2017;17:126.
Lee DR, McKeith I, Mosimann U, Ghosh-Nodyal A, Thomas AJ. Examining carer stress in dementia: the role of subtype diagnosis and neuropsychiatric symptoms. Int J Geriatr Psychiatry. 2013;28:135–41.
National Health Services England. Dementia diagnosis and management. A brief pragmatic resource for general practitioners. https://www.england.nhs.uk/wp-content/uploads/2015/01/dementia-diag-mng-ab-pt.pdf. Accessed 01 Aug 2018.
Hindle JV, Watermeyer TJ, Roberts J, Brand A, Hoare Z, Martyr A, Clare L. Goal-orientated cognitive rehabilitation for dementias associated with Parkinson's disease-A pilot randomised controlled trial. Int J Geriatr Psychiatry. 2018;33(5):718–28.
Morhardt D, Weintraub S, Khayum B, Robinson J, Medina J, O'Hara M, Mesulam M, Rogalski EJ. The CARE pathway model for dementia: psychosocial and rehabilitative strategies for care in young-onset dementias. Psychiatr Clin North Am. 2015;38:333–52.