RESUMEN
Objectives: With the increasing prevalence of dementia worldwide, there is a growing need for an integrated approach to dementia care. Little is known at present about the benefits of educational interventions for informal caregivers of people living with dementia (PLWD) in low- and middle-income countries (LMICs). This review aimed to identify and synthesise the current research on these interventions. Method: Four databases (PsycINFO, Medline, Web of Sciences and Scopus) were searched, alongside Google Scholar and reference lists. The Downs and Black checklist was used for quality assessment and data relating to intervention characteristics, outcomes, and educational component features were compared. Results: Eighteen papers detailing 17 studies were included. All studies presented found at least one significant outcome/effect. Study comparison was difficult due to diverse methodologies, intervention structures, and outcomes. Study quality was also variable. Four studies had education as the primary focus, and most interventions utilised multicomponent and group-based designs. Interventions that included group delivery tended to find more significant results than individual approaches. Intervention length did not appear to influence efficacy. Regular delivery and an average intervention dosage of around 12 h appeared most effective. Conclusions: Research into educational interventions for caregivers in LMICs appears to be promising and can help guide future interventions towards clinical implementation. A multicomponent group intervention trialled in Egypt provided particularly favourable findings. Future studies should focus on understanding the active mechanisms within such interventions to optimize their effectiveness. Collaboration between LMICs, high-income countries (HICs), and caregivers is crucial in developing interventions tailored to meet caregiver needs whilst accounting for feasibility and equity for dementia care worldwide.
RESUMEN
BACKGROUND: Non-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) are low prevalent and often affect individuals under the age of 65. Tailored educational and support resources for caregivers of people living with these dementia phenotypes are scarce and unevenly distributed geographically. Web-based educational programmes are emerging as promising alternatives to improve caregiver self-efficacy and well-being. Here, we present the protocol of a study aiming to assess the feasibility of a co-produced online educational programme for caregivers of people living PCA, PPA and bvFTD: the Better Living with Non-memory-led Dementia programme. METHODS: A randomised controlled feasibility trial will be conducted on a sample of 30 caregivers of people living with PCA, PPA and bvFTD. Participants will be recruited among members of the support organisation Rare Dementia Support (based at UCL in the UK). The intervention group will be given access to an 8-week co-produced web-based educational programme consisting of 6 modules addressing education about PCA, PPA and bvFTD and support strategies for the person with dementia and for the caregiver. The control group will receive treatment as usual (TAU). Feasibility will be measured through feasibility of recruitment, clinical measurement tools and acceptability. Clinical measures will be used to assess preliminary efficacy and data on completion rates, missing data and variability used to decide on measures to be included in a full-scale trial. Allocation ratio will be 2:1 (intervention:control) stratified by diagnosis. Feasibility of recruitment and acceptability will be assessed. Clinical measures will be administered at baseline and 8-week and 3-month post-randomisation. The control group will be offered access to the intervention at the completion of data collection. Participants will be unblinded, and all measures will be self-reported online. DISCUSSION: Online-delivered educational programmes show potential for improving care competency of caregivers and may contribute to overcoming geographical inequalities in local provision of support services. This pilot study will inform a fully powered international trial to determine the effectiveness of Better Living with Non-memory-led Dementia. TRIAL REGISTRATION: This trial has been registered prospectively on the Clinical Trials Registry on 1st September 2022, registration number NCT05525377.
