Better Living With Non-memory-led Dementia: Feasibility Study on the Effects of a Blended Online Training Course for Carers of People With Atypical AD and FTD.
Trial Snapshot
- Phase
- Not Applicable
- Status
- Completed
- Sponsor
- University College, London
- Enrollment
- 31
- Locations
- 1
- Primary Endpoint
- Study feasibility
Study Overview
Brief Summary
This is a feasibility study on the effects of an online-based training and education programme for carers of people with posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural-variant frontotemporal dementia (bvFTD).
Detailed Description
The purpose of this study is:
To evaluate the feasibility of an online training course for carers of people with PCA, PPA, and bvFTD. Feasibility measures will focus on the recruitment process and measurement tools.
To determine the acceptability of an online training course for carers of people with PCA, PPA and bvFTD.
The study will involve 6 online modules over the course of 7 weeks. All sessions will take place over the internet, using an online platform. A research team member (facilitator) will be available to assist participants over the course completion.
Study Design
- Study Type
- Interventional
- Allocation
- Randomized
- Intervention Model
- Parallel
- Primary Purpose
- Treatment
- Masking
- Single (Outcomes Assessor)
Eligibility Criteria
- Ages
- 18 Years to — (Adult, Older Adult)
- Sex
- All
- Accepts Healthy Volunteers
- Yes
Inclusion Criteria
- •. 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.
- •. The care recipient has to have a confirmed diagnosis of dementia (through self-report of the carer, to reflect the 'real world' application of the intervention).
Exclusion Criteria
- •. Those unable to comprehend written English
- •. Those with no access to the internet
Arms & Interventions
Intervention
Subjects in the intervention group receive access to an online training and educational phenotype-specific programme on how to support their relative with non-memory-led dementia. The online course consists on 6 modules to complete in 7 weeks. A course facilitator is available throughout the duration of the intervention to support participants.
Intervention: Better living with non-memory led dementia course (Behavioral)
Treatment as usual (TAU)
The "treatment as usual" group does not receive access to the educational programme.
Outcomes
Primary Outcomes
Study feasibility
Time Frame: Since June 2022 to January 2023 (8 months)
Feasibility of recruitment process and measurement tools (e.g., number of people agreeing to be sent information about the study, time taken to fill in questionnaires).
Acceptability
Time Frame: Since June 2022 to January 2023 (8 months)
Prospective and retrospective acceptability (e.g., reasons for not taking part, task completion rate after every module)
Secondary Outcomes
- Generalized Anxiety Disorder scale (GAD-7)(Change from baseline to 8 weeks and 3 months)
- Pearling Mastery Scale(Change from baseline to 8 weeks and 3 months)
- Patient Health Questionnaire (PHQ-9)(Change from baseline to 8 weeks and 3 months)
- Dementia Management Strategies Scale(Change from baseline to 8 weeks and 3 months)
- WHO 5 Wellbeing Index(Change from baseline to 8 weeks and 3 months)
- De Jong Gierveld Loneliness Scale(Change from baseline to 8 weeks and 3 months)
- Questions about perceived burden and ethicality(At 8 weeks post-randomisation and 3 month follow up)
- Lubben Social Network Scale(Change from baseline to 8 weeks and 3 months)
- Caregiver self-efficacy scale(Change from baseline to 8 weeks and 3 months)
- The quality of carer-partner relationship scale(Change from baseline to 8 weeks and 3 months)
- Health economics questions(At 8 weeks post-randomisation and 3 month follow up)