At a glance
- What the study gets you
- Access to the study treatment being tested
- Type of study
- Interventional (receives a drug or procedure)
- Time in hospital
- In-person visits at study sites — visit count not specified by the sponsor
- Drug or intervention
- Better Living with Non-memory led Dementia programme (behavioural), Waiting list (other)
- How long the study runs
- Study runs about 44 months (dates as stated)
- About the drug or intervention
- Better Living with Non-memory led Dementia programme — behavioural: an 8-week duration 6-module educational programme covering the following topics: 1) Welcome to the programme and what to expect from it; 2) Understanding the disease; 3) How to provide better support for the person with dementia; 4) How to look after the caregiver's own mental health; 5) Where to find additional sources of support, and 6) An introduction to the value of support groups. · Waiting list — other: Signposting individuals to the publicly available Rare Dementia Support website.
- Patient visit burden
- Not specified by the sponsor
- Type of study
- Testing a treatment
- Ages
- 18 Years and over
- Who
- All
- Number of participants
- 238
- Started
- 2024-01-29
- Last checked
- 2025-08
Plain English Summary
What is this study?
- • Testing a new treatment for dementia
- • NA - 238 participants
- • Around 48 million people worldwide 1 live with dementia, of whom 3
Who can take part?
- • Ages 18 Years and over
- • Diagnosed with dementia
Where?
- • London - University College London
This is a simplified summary. Always discuss with your doctor before making any decisions.
About This Trial
Around 48 million people worldwide 1 live with dementia, of whom 3.9 million start with symptoms before the age of 65 (young-onset dementia). Most of the people presenting with young-onset dementia and some people with later onset dementia develop non-memory led dementias such as the atypical forms of Alzheimer ́s disease (AD)or frontotemporal dementia (FTD). Despite the proven benefits of educational programmes and skill training for caregivers, families of people with non-memory led dementias encounter fewer opportunities to receive this type of support. This is a significant gap in care considering that many people with young-onset non-memory led dementia are in their 50s or early 60s, which carries additional challenges about employment, financial stability, and childcare responsibilities. Finding suitable information and resources is less likely due to the lower prevalence of these phenotypes, their consequent geographical spread, and their atypical symptoms. Caregivers demands for more phenotype-specific support suggest that tailored provision of education and training is a gap in the provision of care in these types of dementia. The aim of this study is to: 1. Determine the effectiveness of the Better Living with Non-memory Dementia educational programme for caregivers in improving psychological outcomes \[WS1\]; and 2. Conduct a mixed methods process analysis to elucidate mechanisms of change, barriers and facilitators to access and implementation as well as perceived benefits and costs \[WS2\]. The design is a randomised waiting list control trial with an 8-week intervention and 6-month follow-up comparing intervention to standard care with embedded process analysis. The intervention comprises a virtual onboarding session with a facilitator, 6 learning modules (including module-end real-life tasks to put skills into practice) and up to two further virtual check-in sessions with the facilitator. Intervention adaptation, adaptation to design and selection of primary outcome measures was based on feasibility work.
How this trial compares with your answers
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What we know so far
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- • Tell us your age for better matching
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Preliminary match based on your answers. Full eligibility requires on-site assessment including medical history, physical exam, and lab tests. This does not guarantee enrolment.
Eligibility at a Glance
Key info
- Age: 18 Years and over
- Who can join: All genders
What the study is looking for
- ✓Adults (18+) who self-identify as an unpaid carer (partners, children, friends, etc.) of someone with PPA, PCA or...
- ✓The care recipient must have a confirmed diagnosis of dementia (through self-report of the carer, to reflect the...
- ✓Able to give agreement to take part.
- ✓Good comprehension of written English.
- ✓Access to the internet.
Who cannot take part
- ✗Carers of people living with dementia in full-time care facility.
- ✗Carers of people with severe dementia in terms of large impact on activities of daily living.
- ✗Carers of individuals with any form of dementia other than PPA, PCA, or bvFTD. -
See the full criteria
Where Is This Study? (1 UK site)
University College London
London WC1N 3BG, United Kingdom