BELIDE: Better Living With Non-memory-led Dementia

NCT ID: NCT06241287

Last Updated: 2025-08-13

Basic Information

• Recruitment Status: RECRUITING
• Clinical Phase: NA
• Total Enrollment: 238 participants
• Study Classification: INTERVENTIONAL
• Study Start Date: 2024-01-29
• Study Completion Date: 2027-09-30

Brief Summary

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.

Conditions

Dementia

Study Design

• Allocation Method: RANDOMIZED
• Intervention Model: PARALLEL
• Primary Study Purpose: TREATMENT
• Blinding Strategy: SINGLE

Study Groups

Intervention group

The intervention group will receive the Better Living with Non-memory led Dementia programme, 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.

Group Type: EXPERIMENTAL

Better Living with Non-memory led Dementia programme

Intervention Type: BEHAVIORAL

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. At the end of modules 2, 3, and 4, participants will be asked to complete a real-life task to put in practice skills learned in the specific module (e.g., approaching a friend and explaining the disease in lay terms). The first session (onboarding) will be facilitated via Zoom by one of the members of the research team. Up to 3 total interactions between facilitators and participants will be offered to support participants' engagement with the programme. All course modules will be printable using the pdf download button on the programme's page.

Control group

The waiting list control group will receive signposting to the publicly available Rare Dementia Support website (https://www.raredementiasupport.org/) and any kind of support the participants may already being receiving (e.g. psychological support, online information, support groups, etc). This a wait list study where the control group will be given access to the intervention ́s educational modules and material after the individuals' last point of data collection.

Group Type: OTHER

Waiting list

Intervention Type: OTHER

Signposting individuals to the publicly available Rare Dementia Support website. The control group will further receive access to the Better Living with Non-memory led Dementia programme after completing the collection of measures at 6 months.

Interventions

Better Living with Non-memory led Dementia programme

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. At the end of modules 2, 3, and 4, participants will be asked to complete a real-life task to put in practice skills learned in the specific module (e.g., approaching a friend and explaining the disease in lay terms). The first session (onboarding) will be facilitated via Zoom by one of the members of the research team. Up to 3 total interactions between facilitators and participants will be offered to support participants' engagement with the programme. All course modules will be printable using the pdf download button on the programme's page.

Intervention Type: BEHAVIORAL

Waiting list

Signposting individuals to the publicly available Rare Dementia Support website. The control group will further receive access to the Better Living with Non-memory led Dementia programme after completing the collection of measures at 6 months.

Intervention Type: OTHER

Eligibility Criteria

Inclusion Criteria

1. Adults (18+) who self-identify as an unpaid carer (partners, children, friends, etc.) of someone with PPA, PCA or bvFTD who is not living in a full-time care facility.

2. The care recipient must have a confirmed diagnosis of dementia (through self-report of the carer, to reflect the 'real world' application of the intervention).

3. Able to give informed consent.

4. Good comprehension of written English.

5. Access to the internet.

Exclusion Criteria

1. Carers of people living with dementia in full-time care facility.

2. Carers of people with severe dementia in terms of large impact on activities of daily living.

3. Carers of individuals with any form of dementia other than PPA, PCA, or bvFTD. -

• Minimum Eligible Age: 18 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: Yes

Sponsors

University College, London

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Locations

University College London

London, , United Kingdom

Site Status: RECRUITING

Countries

United Kingdom

Facility Contacts

Aida Suarez-Gonzalez, Dr

Role: primary

aida.gonzalez@ucl.ac.uk

+44 (0)20 3448 4773

Role: backup

+44 (0)20 3448 4773

References

Suarez-Gonzalez A, Brotherhood E, John A, Hayes O, Rossi-Harries S, Zimmermann N, Mansfield V, Brand A, Hoare Z, Fitzsimmons D, Cullen K, Crutch S, Stott J. Better Living with Non-memory-led Dementia: study protocol for a randomised controlled trial of a web-based caregiver educational programme (BELIDE trial). BMJ Open. 2025 Sep 5;15(9):e102518. doi: 10.1136/bmjopen-2025-102518.

Reference Type: DERIVED

PMID: 40912705 (View on PubMed)

Other Identifiers

8545/007

Identifier Type: -

Identifier Source: org_study_id