Dataset Information

Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life.

ABSTRACT:

Background

There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to 'live well' vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs.

Methods

IDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ?90 years or?DiscussionIDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from under-researched groups of people with dementia, who are likely to have their own distinct perceptions of living well.

SUBMITTER: Silarova B

PROVIDER: S-EPMC6208177 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature

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Publications

Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life.

Silarova Barbora B Nelis Sharon M SM Ashworth Rosalie M RM Ballard Clive C Bieńkiewicz Marta M Henderson Catherine C Hillman Alexandra A Hindle John V JV Hughes Julian C JC Lamont Ruth A RA Litherland Rachael R Jones Ian R IR Jones Roy W RW Knapp Martin M Kotting Piers P Martyr Anthony A Matthews Fiona E FE Morris Robin G RG Quinn Catherine C Regan Jemma J Rusted Jennifer M JM van den Heuvel Eleanor Ann EA Victor Christina R CR Wu Yu-Tzu YT Clare Linda L

BMC public health 20181030 1

<h4>Background</h4>There is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to 'live well' vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and th ...[more]

PMID: 30376832

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Project description:BackgroundThe impact of COVID-19 restrictions on people living with dementia and their carers is an emerging focus of recent research determining how we can best support this population. People living with dementia have faced service curtailment, increased risk for COVID-19, as well as potential heightened deterioration. This study reports the experiences of people living with dementia and their family carers during the early months of the COVID-19 pandemic in England and the impact on them.MethodsWe recruited and remotely interviewed 30 people living with dementia in their own homes and 31 family carers, via video or telephone call in mid-2020. Data were transcribed and analysed using thematic analysis.ResultsPeople living with dementia often had a basic understanding of COVID-19 restrictions but could have difficulty translating this into personalised risk-appraisal of their own actions. Managing COVID-19 risks facing people living with dementia at home was largely done by family carers, exemplified by changes to living arrangements, which could strain or sustain caring relationships. Well-established familial caring relationships contributed to the wellbeing of the person living with dementia and their carer, as well as keeping to simple routines that included leaving the home for exercise and stimulation. People living with dementia reported some negative psychological and cognitive effects due to the imposed restrictions, such as increased apathy, irritability, or anxiety, which were fuelled by lack of social engagement.ConclusionsStructuring routine (remote) social interactions where possible could increase social engagement and improve wellbeing for people living with dementia, especially those with limited familial support in a post-COVID-19 context. As some care relationships had been restructured to manage COVID-19 risks, additional carer strain may emerge as a result of the impact on the independence of the person living with dementia and come to the attention of professionals in health and care services. People living with dementia and their carers highlighted the importance of maintaining or adapting routines which may be useful learning for professionals, although additional support may be necessary for those who are impacted by more severe or worsening symptoms of dementia.

Project description:ObjectivesTo analyse people with dementia and their family carers' attribution of social changes in dementia and the consequences of these attributions.DesignQualitative study, using a semi-structured interview guide. Individual interviews continued to theoretical saturation. Two researchers independently analysed interview transcripts.Setting and participantsPeople with mild dementia and family carers purposively selected from London-based memory services for diverse demographic characteristics to encompass a range of experiences.Primary and secondary outcomesAttribution of social changes experienced by the person with dementia and the consequences of these attributions.ResultsWe interviewed nine people with dementia and nine carers, encompassing a range of age, ethnicity and educational backgrounds.Both groups reported that the person with dementia had changed socially. People with dementia tended to give one or two explanations for social change, but carers usually suggested several. People with dementia were often socially embarrassed or less interested in going out, and they or their relatives' physical illness or fear of falls led to reduced social activity. Carers often attributed not going out to a choice or premorbid personality. Carers found that their relative needed more support to go out than they could give and carers needed time to themselves because of carer stress or other problems from which they shielded the person with dementia. Additionally, there was decreased opportunity to socialise, as people were bereaved of friends and family. Participants acknowledged the direct impact of dementia symptoms on their ability to socially engage but sometimes decided to give up socialising when they knew they had dementia. There were negative consequences from social changes being attributed to factors such as choice, rather than dementia.ConclusionClinicians should ask about social changes in people with dementia. Explaining that these may be due to dementia and considering strategies to overcome them may be beneficial.

Project description:BackgroundThe 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.MethodsThe 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.ResultsThe 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.ConclusionsThis 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.

Dataset Information

Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life.

Background

Methods

Publications

Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life.

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