Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study

Abstract Background 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...

Full description

Bibliographic Details
Main Authors: Yu-Tzu Wu, Linda Clare, John V. Hindle, Sharon M. Nelis, Anthony Martyr, Fiona E. Matthews, on behalf of the Improving the experience of Dementia and Enhancing Active Life study
Format: Article
Language:English
Published: BMC 2018-09-01
Series:BMC Medicine
Subjects:
Online Access:http://link.springer.com/article/10.1186/s12916-018-1135-2
_version_ 1819017429575008256
author Yu-Tzu Wu
Linda Clare
John V. Hindle
Sharon M. Nelis
Anthony Martyr
Fiona E. Matthews
on behalf of the Improving the experience of Dementia and Enhancing Active Life study
author_facet Yu-Tzu Wu
Linda Clare
John V. Hindle
Sharon M. Nelis
Anthony Martyr
Fiona E. Matthews
on behalf of the Improving the experience of Dementia and Enhancing Active Life study
author_sort Yu-Tzu Wu
collection DOAJ
description Abstract Background 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. Methods 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. Results 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. Conclusions 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.
first_indexed 2024-12-21T03:03:23Z
format Article
id doaj.art-c4a39c76d13541b68096ea30ca0ba09e
institution Directory Open Access Journal
issn 1741-7015
language English
last_indexed 2024-12-21T03:03:23Z
publishDate 2018-09-01
publisher BMC
record_format Article
series BMC Medicine
spelling doaj.art-c4a39c76d13541b68096ea30ca0ba09e2022-12-21T19:18:08ZengBMCBMC Medicine1741-70152018-09-011611910.1186/s12916-018-1135-2Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) studyYu-Tzu Wu0Linda Clare1John V. Hindle2Sharon M. Nelis3Anthony Martyr4Fiona E. Matthews5on behalf of the Improving the experience of Dementia and Enhancing Active Life studyREACH: The Centre for Research in Ageing and Cognitive Health, St Luke’s Campus, University of Exeter Medical SchoolREACH: The Centre for Research in Ageing and Cognitive Health, St Luke’s Campus, University of Exeter Medical SchoolREACH: The Centre for Research in Ageing and Cognitive Health, St Luke’s Campus, University of Exeter Medical SchoolREACH: The Centre for Research in Ageing and Cognitive Health, St Luke’s Campus, University of Exeter Medical SchoolREACH: The Centre for Research in Ageing and Cognitive Health, St Luke’s Campus, University of Exeter Medical SchoolInstitute of Health and Society, Newcastle UniversityAbstract Background 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. Methods 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. Results 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. Conclusions 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.http://link.springer.com/article/10.1186/s12916-018-1135-2DementiaSubtypeQuality of lifeWellbeingLife satisfactionCaregiving
spellingShingle Yu-Tzu Wu
Linda Clare
John V. Hindle
Sharon M. Nelis
Anthony Martyr
Fiona E. Matthews
on behalf of the Improving the experience of Dementia and Enhancing Active Life study
Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study
BMC Medicine
Dementia
Subtype
Quality of life
Wellbeing
Life satisfaction
Caregiving
title Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study
title_full Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study
title_fullStr Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study
title_full_unstemmed Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study
title_short Dementia subtype and living well: results from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) study
title_sort dementia subtype and living well results from the improving the experience of dementia and enhancing active life ideal study
topic Dementia
Subtype
Quality of life
Wellbeing
Life satisfaction
Caregiving
url http://link.springer.com/article/10.1186/s12916-018-1135-2
work_keys_str_mv AT yutzuwu dementiasubtypeandlivingwellresultsfromtheimprovingtheexperienceofdementiaandenhancingactivelifeidealstudy
AT lindaclare dementiasubtypeandlivingwellresultsfromtheimprovingtheexperienceofdementiaandenhancingactivelifeidealstudy
AT johnvhindle dementiasubtypeandlivingwellresultsfromtheimprovingtheexperienceofdementiaandenhancingactivelifeidealstudy
AT sharonmnelis dementiasubtypeandlivingwellresultsfromtheimprovingtheexperienceofdementiaandenhancingactivelifeidealstudy
AT anthonymartyr dementiasubtypeandlivingwellresultsfromtheimprovingtheexperienceofdementiaandenhancingactivelifeidealstudy
AT fionaematthews dementiasubtypeandlivingwellresultsfromtheimprovingtheexperienceofdementiaandenhancingactivelifeidealstudy
AT onbehalfoftheimprovingtheexperienceofdementiaandenhancingactivelifestudy dementiasubtypeandlivingwellresultsfromtheimprovingtheexperienceofdementiaandenhancingactivelifeidealstudy