Cognitive aids for people with early stage dementia versus treatment as usual (Dementia Early Stage Cognitive Aids New Trial (DESCANT)): study protocol for a randomised controlled trial

Chester, Helen; Clarkson, Paul; Davies, Linda; Hughes, Jane; Islam, Muhammad; Kapur, Narinder; Orrell, Martin; Peconi, Julie; Pitts, Rosa; Poland, Fiona; Russell, Ian; Challis, David

doi:10.1186/s13063-018-2933-8

Cited by 6 publications

(9 citation statements)

References 38 publications

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“…We published the trial protocol in Trials in 2018. 151 This included the sample size estimation for the primary outcome of the ADL for people with dementia, as measured by the Bristol Activities of Daily Living Scale (BADLS), 152 and a description of the intervention and of all trial procedures. The methods of the trial and findings on clinical effectiveness are summarised below.…”

Section: Discussionmentioning

confidence: 99%

“…Cost-effectiveness analysis followed an agreed statistical analysis plan, which was summarised in the trial protocol paper in Trials in 2018. 151 The aim was to evaluate whether or not DSPs with guidance in using memory aids were cost-effective compared with TAU for a range of values of willingness to pay (WTP) for a QALY gained. The perspective of the primary analysis was public (NHS and social care), carer (costs) and people with dementia and their carer (health benefits), but multiple perspectives were also presented (see Appendix 11).…”

Section: Early-stage Dementia: Within-trial Economic Analysismentioning

confidence: 99%

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Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT

Clarkson

Challis

Hughes

et al. 2021

Programme Grants Appl Res

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Background Over half of people with dementia live at home. We know little about what home support could be clinically effective or cost-effective in enabling them to live well. Objectives We aimed to (1) review evidence for components of home support, identify their presence in the literature and in services in England, and develop an appropriate economic model; (2) develop and test a practical memory support package in early-stage dementia, test the clinical effectiveness and cost-effectiveness of routine home support in later-stage dementia and design a toolkit based on this evidence; and (3) elicit the preferences of staff, carers and people with dementia for home support inputs and packages, and evaluate the cost-effectiveness of these approaches in early- and later-stage dementia. Design We undertook (1) an evidence synthesis, national surveys on the NHS and social care and an economic review; (2) a multicentre pragmatic randomised trial [Dementia Early Stage Cognitive Aids New Trial (DESCANT)] to estimate the clinical effectiveness and cost-effectiveness of providing memory aids and guidance to people with early-stage dementia (the DESCANT intervention), alongside process evaluation and qualitative analysis, an observational study of existing care packages in later-stage dementia along with qualitative analysis, and toolkit development to summarise this evidence; and (3) consultation with experts, staff and carers to explore the balance between informal and paid home support using case vignettes, discrete choice experiments to explore the preferences of people with dementia and carers between home support packages in early- and later-stage dementia, and cost–utility analysis building on trial and observational study. Setting The national surveys described Community Mental Health Teams, memory clinics and social care services across England. Recruitment to the trial was through memory services in nine NHS trusts in England and one health board in Wales. Recruitment to the observational study was through social services in 17 local authorities in England. Recruitment for the vignette and preference studies was through memory services, community centres and carers’ organisations. Participants People aged > 50 years with dementia within 1 year of first attendance at a memory clinic were eligible for the trial. People aged > 60 years with later-stage dementia within 3 months of a review of care needs were eligible for the observational study. We recruited staff, carers and people with dementia for the vignette and preference studies. All participants had to give written informed consent. Main outcome measures The trial and observational study used the Bristol Activities of Daily Living Scale as the primary outcome and also measured quality of life, capability, cognition, general psychological health and carers’ sense of competence. Methods Owing to the heterogeneity of interventions, methods and outcome measures, our evidence and economic reviews both used narrative synthesis. The main source of economic studies was the NHS Economic Evaluation Database. We analysed the trial and observational study by linear mixed models. We analysed the trial by ‘treatment allocated’ and used propensity scores to minimise confounding in the observational study. Results Our reviews and surveys identified several home support approaches of potential benefit. In early-stage dementia, the DESCANT trial had 468 randomised participants (234 intervention participants and 234 control participants), with 347 participants analysed. We found no significant effect at the primary end point of 6 months of the DESCANT intervention on any of several participant outcome measures. The primary outcome was the Bristol Activities of Daily Living Scale, for which scores range from 0 to 60, with higher scores showing greater dependence. After adjustment for differences at baseline, the mean difference was 0.38, slightly but not significantly favouring the comparator group receiving treatment as usual. The 95% confidence interval ran from –0.89 to 1.65 (p = 0.56). There was no evidence that more intensive care packages in later-stage dementia were more effective than basic care. However, formal home care appeared to help keep people at home. Staff recommended informal care that cost 88% of formal care, but for informal carers this ratio was only 62%. People with dementia preferred social and recreational activities, and carers preferred respite care and regular home care. The DESCANT intervention is probably not cost-effective in early-stage dementia, and intensive care packages are probably not cost-effective in later-stage dementia. From the perspective of the third sector, intermediate intensity packages were cheaper but less effective. Certain elements may be driving these results, notably reduced use of carers’ groups. Limitations Our chosen outcome measures may not reflect subtle outcomes valued by people with dementia. Conclusions Several approaches preferred by people with dementia and their carers have potential. However, memory aids aiming to affect daily living activities in early-stage dementia or intensive packages compared with basic care in later-stage dementia were not clinically effective or cost-effective. Future work Further work needs to identify what people with dementia and their carers prefer and develop more sensitive outcome measures. Study registration Current Controlled Trials ISRCTN12591717. The evidence synthesis is registered as PROSPERO CRD42014008890. Funding This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 9, No. 6. See the NIHR Journals Library website for further project information.

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Section: Discussionmentioning

confidence: 99%

Section: Early-stage Dementia: Within-trial Economic Analysismentioning

confidence: 99%

Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT

Clarkson

Challis

Hughes

et al. 2021

Programme Grants Appl Res

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“…This paper considers the experience of people with dementia taking part in a pragmatic RCT investigating the effectiveness and cost-effectiveness of providing a range of memory aids, training and support to people with mild to moderate dementia and their carers at home (Chester et al, 2018). The trial forms part of a wider research programme, Effective Home Support in Dementia Care: Components, Impacts and Costs of Tertiary Prevention, comprising nine interrelated projects funded through a National Institute for Health Research (NIHR) programme grant for applied research.…”

Section: Introductionmentioning

confidence: 99%

Reflecting on the research encounter for people in the early stages of dementia: Lessons from an embedded qualitative study

Abendstern¹,

Davies

Poland

et al. 2019

Dementia

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Gathering meaningful data from people with dementia presents challenges to researchers involved in both qualitative and quantitative studies. Careful planning and implementation are required, including skilful and sympathetic management by the researcher who must pay attention to the cognitive challenges experienced by the person with dementia. These challenges are particularly evident when conducting structured interviews using standardised measures. This paper presents the findings of an embedded qualitative study undertaken within a pragmatic RCT. The novel method involves nesting a qualitative analysis within a quantitative study by recording incidental conversation during structured interviews, requiring no additional data collection. The method shone a light on the formal interview process itself, something rarely revealed outside the interview setting. It provided a unique insight into the challenges posed by research participation for people in early-stage dementia. Analysis revealed three main themes relating to dementia as a condition and to the research design. First, people with dementia contributed very few conversational comments during the structured interviews. Second, the context of the interview, that is: managing the conversational interchange, responding to direct and often sensitive questions and making decisions about day-to day-feelings and experiences was difficult for participants to manage. Third, people in early stage dementia struggled with the content of the structured interviews due to their linguistic and cognitive demands. The findings raise questions about how people with dementia are included in research and the methods employed to gather accurate data with minimal inconvenience and stress for research participants.

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“…The aim of this study is threefold to: investigate the goals identified by people with dementia and their carers to promote the self‐management of symptoms and abilities; measure achievement using the goal attainment process; and explore the reflections of Dementia Support Practitioners (DSPs) facilitating it. This was part of the Dementia Early Stage Cognitive Aids New Trial (DESCANT) trial described in detail elsewhere 29 . An overview is provided below.…”

Section: Methodsmentioning

confidence: 99%

“…Ethical approval was obtained from the National Research Ethics Service (NRES) (15/NW/0822). The effectiveness and cost‐effectiveness of the intervention was assessed through a randomised controlled trial 29 ; and its implementation by process evaluation 30 . A specially convened subgroup, including an experienced occupational therapist, oversaw the process evaluation and the development, implementation and reporting of this GAS.…”

Section: Methodsmentioning

confidence: 99%

The Dementia Early Stage Cognitive Aids New Trial (DESCANT) intervention: A goal attainment scaling approach to promote self‐management

Chester

Beresford

Clarkson

et al. 2020

Int J Geriat Psychiatry

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Objectives: This study investigated goals identified by people with dementia and their carers to promote the self-management of symptoms and abilities; measured achievement using goal attainment scaling (GAS); and explored the reflections of Dementia Support Practitioners (DSPs) facilitating it. Methods and design: Within this pragmatic randomised trial, DSPs gave memory aids, training and support to people with mild to moderate dementia and their carers at home. Data were collected across seven NHS Trusts in England and Wales (2016-2018) and abstracted from intervention records and semi-structured interviews with DSPs delivering the intervention, supplemented by a subset of the trial dataset. Measures were created to permit quantification and descriptive analysis and interview data thematically analysed. A GAS measure for this intervention in this client group was derived. Results: Engagement was high across the 117 participants and 293 goals were identified. These reflected individual circumstances and needs and enabled classification and assessment of their attainment. Seventeen goal types were identified across six domains: self-care, household tasks, daily occupation, orientation, communication, and well-being and safety. On average participants achieved nominally significant improvement regarding the specified goals of 1.4 with standard deviation of 0.6. Five interviews suggested that DSPs' experiences of goal setting were also positive. Conclusions: GAS is useful for assessing psychosocial interventions for people with early-stage dementia. It has a utility in identifying goals, promoting self-management and providing a personalised outcome measure. There is a strong case for exploring whether these clear benefits translate to other interventions in other populations in other places.

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Cognitive aids for people with early stage dementia versus treatment as usual (Dementia Early Stage Cognitive Aids New Trial (DESCANT)): study protocol for a randomised controlled trial

Cited by 6 publications

References 38 publications

Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT

Components, impacts and costs of dementia home support: a research programme including the DESCANT RCT

Reflecting on the research encounter for people in the early stages of dementia: Lessons from an embedded qualitative study

The Dementia Early Stage Cognitive Aids New Trial (DESCANT) intervention: A goal attainment scaling approach to promote self‐management

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