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BACKGROUND Common memory aids for people with dementia at home are recommended. However, rigorous evaluation is lacking, particularly what guidance or support is valued. OBJECTIVE To investigate effects of memory aids and guidance by Dementia Support Practitioners (DSPs) for people in early stage dementia through a pragmatic, randomised controlled trial. METHODS Of 469 people with mild to moderate dementia and their informal carers, 468 were randomised to a DSP with memory aids or to usual care plus existing dementia guide. Allocation was stratified by: Trust/Health Board; time since first attendance at memory service; gender; age; and living with primary carer or not. Primary outcome was Bristol Activities of Daily Living Scale (BADLS) score at 3 and 6 months (primary end-point). Secondary outcomes for people with dementia: quality of life (CASP-19; DEMQOL); cognition and functioning (Clinical Dementia Rating Scale; SMMSE); capability (ICECAP-O); social networks (LSNS-R); and instrumental daily living activities (R-IDDD). Secondary outcomes for carers: psychological health (GHQ-12); sense of competence (SSCQ). RESULTS DSPs were successfully trained, compliance was good and welcomed by participants. Mean 6 months BADLS score increased to 14.6 (SD 10.4) in intervention and 12.6 (SD 8.1) in comparator, indicative of greater dependence in the activities of daily living. Adjusted between group difference was 0.38 (95% confidence interval -0.89 to 1.65, P=0.56). Though this suggests greater dependency in the intervention group the difference was not significant. No differences were found in secondary outcomes. CONCLUSIONS This intervention did not maintain independence in the activities of daily living with no improvement in other outcomes for people with dementia or carers.

Objectives The DESCANT (Dementia Early Stage Cognitive Aids New Trial) intervention provided a personalised care package designed to improve the cognitive abilities, function and well-being of people with early-stage dementia and their carers, by providing a range of memory aids, together with appropriate training and support. This sub-study aimed to assess implementation and identify contextual factors potentially associated with participant outcomes. Method A mixed-methods approach was adopted alongside the pragmatic randomised trial. Data were obtained from intervention records and interviews with five dementia support practitioners across seven National Health Service Trusts in England and Wales. A reporting framework was constructed from available literature and data assessed by descriptive statistics and thematic analysis. Results Participation and engagement was high with 126 out of 128 participants completing the intervention with packages tailored to individual participants. Misplacing items and poor orientation to date and time were common areas of need. Memory aids frequently supplied included orientation clocks (91%), whiteboards (60%), calendars (43%) and notebooks (32%), plus bespoke items. Intervention duration and timing were broadly consistent with expectations. Variation reflected participants’ needs, circumstances and preferences. Qualitative findings suggested a potentially positive impact on the well-being of people with dementia and their carers. Issues associated with successful roll-out of the intervention are explored in the discussion. Conclusion Successful implementation increased confidence in future findings of the randomised trial. Depending on these, DESCANT may prove a scalable intervention with potential to improve the function and quality of life of people with dementia and their carers.

BACKGROUND Common memory aids for people with dementia at home are recommended. However, rigorous evaluation is lacking, particularly what guidance or support is valued. OBJECTIVE To investigate effects of memory aids and guidance by Dementia Support Practitioners (DSPs) for people in early stage dementia through a pragmatic, randomised controlled trial. METHODS Of 469 people with mild to moderate dementia and their informal carers, 468 were randomised to a DSP with memory aids or to usual care plus existing dementia guide. Allocation was stratified by: Trust/Health Board; time since first attendance at memory service; gender; age; and living with primary carer or not. Primary outcome was Bristol Activities of Daily Living Scale (BADLS) score at 3 and 6 months (primary end-point). Secondary outcomes for people with dementia: quality of life (CASP-19; DEMQOL); cognition and functioning (Clinical Dementia Rating Scale; SMMSE); capability (ICECAP-O); social networks (LSNS-R); and instrumental daily living activities (R-IDDD). Secondary outcomes for carers: psychological health (GHQ-12); sense of competence (SSCQ). RESULTS DSPs were successfully trained, compliance was good and welcomed by participants. Mean 6 months BADLS score increased to 14.6 (SD 10.4) in intervention and 12.6 (SD 8.1) in comparator, indicative of greater dependence in the activities of daily living. Adjusted between group difference was 0.38 (95% confidence interval -0.89 to 1.65, P=0.56). Though this suggests greater dependency in the intervention group the difference was not significant. No differences were found in secondary outcomes. CONCLUSIONS This intervention did not maintain independence in the activities of daily living with no improvement in other outcomes for people with dementia or carers.

Objectives The DESCANT (Dementia Early Stage Cognitive Aids New Trial) intervention provided a personalised care package designed to improve the cognitive abilities, function and well-being of people with early-stage dementia and their carers, by providing a range of memory aids, together with appropriate training and support. This sub-study aimed to assess implementation and identify contextual factors potentially associated with participant outcomes. Method A mixed-methods approach was adopted alongside the pragmatic randomised trial. Data were obtained from intervention records and interviews with five dementia support practitioners across seven National Health Service Trusts in England and Wales. A reporting framework was constructed from available literature and data assessed by descriptive statistics and thematic analysis. Results Participation and engagement was high with 126 out of 128 participants completing the intervention with packages tailored to individual participants. Misplacing items and poor orientation to date and time were common areas of need. Memory aids frequently supplied included orientation clocks (91%), whiteboards (60%), calendars (43%) and notebooks (32%), plus bespoke items. Intervention duration and timing were broadly consistent with expectations. Variation reflected participants’ needs, circumstances and preferences. Qualitative findings suggested a potentially positive impact on the well-being of people with dementia and their carers. Issues associated with successful roll-out of the intervention are explored in the discussion. Conclusion Successful implementation increased confidence in future findings of the randomised trial. Depending on these, DESCANT may prove a scalable intervention with potential to improve the function and quality of life of people with dementia and their carers.

BACKGROUND Common memory aids for people with dementia at home are recommended. However, rigorous evaluation is lacking, particularly what guidance or support is valued. OBJECTIVE To investigate effects of memory aids and guidance by Dementia Support Practitioners (DSPs) for people in early stage dementia through a pragmatic, randomised controlled trial. METHODS Of 469 people with mild to moderate dementia and their informal carers, 468 were randomised to a DSP with memory aids or to usual care plus existing dementia guide. Allocation was stratified by: Trust/Health Board; time since first attendance at memory service; gender; age; and living with primary carer or not. Primary outcome was Bristol Activities of Daily Living Scale (BADLS) score at 3 and 6 months (primary end-point). Secondary outcomes for people with dementia: quality of life (CASP-19; DEMQOL); cognition and functioning (Clinical Dementia Rating Scale; SMMSE); capability (ICECAP-O); social networks (LSNS-R); and instrumental daily living activities (R-IDDD). Secondary outcomes for carers: psychological health (GHQ-12); sense of competence (SSCQ). RESULTS DSPs were successfully trained, compliance was good and welcomed by participants. Mean 6 months BADLS score increased to 14.6 (SD 10.4) in intervention and 12.6 (SD 8.1) in comparator, indicative of greater dependence in the activities of daily living. Adjusted between group difference was 0.38 (95% confidence interval -0.89 to 1.65, P=0.56). Though this suggests greater dependency in the intervention group the difference was not significant. No differences were found in secondary outcomes. CONCLUSIONS This intervention did not maintain independence in the activities of daily living with no improvement in other outcomes for people with dementia or carers.

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 memo

Background Over half of people with dementia live at home. We know little about what home support could be 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 effectiveness of routine home support in later-stage dementia, and design a toolkit based on this evidence; (3) elicit preferences of staff, carers and people with dementia for home support inputs and packages, and evaluate cost-effectiveness of these approaches in early- and later-stage dementia. Design Thus we undertook: (1) evidence synthesis; national surveys on NHS and social care; and economic review (2) multi-centre pragmatic randomised trial (DESCANT) to estimate the effectiveness of providing memory aids and guidance to people with early-stage dementia (the DESCANT intervention) – alongside process evaluation and qualitative analysis; observational study of existing care packages in later-stage dementia alongside qualitative analysis; and toolkit development to summarise this evidence (3) consultation with experts, staff and carers to explore 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 9 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 serv

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.

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.

Background: There is a growing need for an evidence-based approach to home support for people with dementia and their carers following diagnosis but research on the effectiveness and cost-effectiveness of different approaches is sparse. The Dementia Early Stage Cognitive Aids New Trial [DESCANT] will evaluate the clinical and cost-effectiveness of a range of memory aids, training and support to people with mild to moderate dementia and their carers at home and compares that intervention with treatment as usual. Methods/Design: This is a multi-site, pragmatic randomised trial preceded by a feasibility study and internal pilot. We aim to allocate at random 360 pairs comprising a person with mild to moderate dementia and an identified carer between the DESCANT intervention and treatment as usual. We assess participants at baseline, 13 and 26 weeks. The primary outcome measure is the Bristol Activities of Daily Living Scale; other participant outcomes include cognition, quality of life, activities of daily living and social networking; and carer outcomes include quality of life, sense of competence and mental health. To enhance this quantitative evaluation we are conducting a qualitative component and a process evaluation to assess the implementation process and identify contextual factors associated with variation. Discussion: The DESCANT intervention reflects current policy to enhance the capabilities of people with dementia after diagnosis, and their carers. If it is clinically and cost-effective, its modest nature and cost will enhance the likelihood of it being incorporated into mainstream practice.

Quality in Ageing and Older AdultsAbstract Purpose This paper describes a case study to test the applicability of the Discrete Choice Experiment (DCE) method to assess the preferences of carers of people with dementia. The focus of enquiry was home care provision. Design/methodology/approach A multi-method approach was adopted for this pilot study. A literature review identified key characteristics of home care for dementia. This informed consultations with lay representatives. Key attributes of home care for the DCE were identified and formed the basis for the schedule. Twenty-eight carers were recruited by two voluntary organisations to complete the DCE. A multinomial logistic regression model was used to analyse the data. Findings Seven attributes of home care for people with dementia were identified from the consultation. Use of the DCE approach permitted the identification of those most important to carers. Despite the modest sample, statistically significant findings were reported in relation to five of the attributes indicating their relevance. Lay involvement in the identification of attributes contributed to the ease of administration of the schedule and relevance of the findings. Originality/value This study demonstrated the utility of a DCE to capture the preferences of carers of people with dementia and thereby gather information from carers to inform policy, practice and service development. Their involvement in the design of the schedule was critical to this process.