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Abstract
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; S-MMSE); 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% CI: −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.
Trial registration number Current Controlled Trials ISRCTN12591717.
- dementia
- memory
- AIDS
Data availability statement
Data are available upon reasonable request. Data are available on reasonable request from the corresponding author
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Footnotes
Twitter @PaulClarkn, @RSCOP1
Contributors PC (chief investigator, 8 April 2019 to 31 March 2020) conceived and designed the study and had overall responsibility for study delivery and is the joint guarantor. RP was responsible for trial logistics and management, and led on writing and reviewing of the manuscript. SI did the statistical analysis. JP had lead responsibility for trial logistics and management, and was responsible for writing and reviewing of the manuscript. IR was a grant holder and was responsible for trial design and statistical analysis and for writing and reviewing of the manuscript. GF had lead responsibility for trial management and was responsible for writing and reviewing of the manuscript. RB was responsible for trial logistics and management and writing and reviewing of the manuscript. CE was responsible for trial logistics and management. VG was responsible for trial logistics and management. MO was a grant holder, conceived and designed the study and developed the intervention. JH was a grant holder, helped design the study, led on the development of the training manual and was involved in trial management. HC was responsible for trial management and recruitment lead (until 30 May 2019), responsible for training and quality assurance and developed and helped implement the intervention. DC (chief investigator, 1 July 2015 to 7 April 2019) conceived and designed the study and had responsibility for study delivery. NK was a grant holder, and developed the intervention and trained DSPs in its use. BR was a grant holder and led on PPCRG activities with PC. BM was responsible for trial management (from 30 May 2019 to 31 March 2020). CR (co-chief investigator, 8 April 2019 to 31 March 2020): had responsibility for study delivery and for reviewing of the manuscript. She is the joint guarantor. All authors have contributed to drafting the manuscript and approving the final version. The corresponding author attests that all listed authors meet authorship criteria and that no others meeting the criteria have been omitted.
Funding This trial was funded by the National Institute for Health Research (NIHR Programme Grants for Applied Research, Grant Number DTC-RP-PG-0311-12003) and received additional support from the NIHR Local Clinical Research Networks in England and Wales. NIHR funded the study. It developed a commissioning brief but had no role in the study design, data acquisition, analysis or manuscript preparation. The sponsor (University of Manchester) had no role in the funding, study design, in the collection, analysis and interpretation of data, in the writing of the report and in the decision to submit the article for publication. The views expressed are those of the authors and are not an official view of the institutions or funders. All authors had full access to the data (including statistical reports and tables) in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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