Alzheimer Disease, Frontotemporal Dementia, Primary Progressive Aphasia
Conditions
Keywords
Posterior Cortical Atrophy
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.
Interventions
BEHAVIORALBetter living with non-memory led dementia course
Caregivers online training and educational phenotype-specific programme on how to support people with non-memory-led dementia.
Sponsors
University College, London
Study design
Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
TREATMENT
Masking
SINGLE (Outcomes Assessor)
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
Yes
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 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
1. . Those unable to comprehend written English 2. . Those with no access to the internet
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Study feasibility | 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 | 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
| Measure | Time frame | Description |
|---|---|---|
| Patient Health Questionnaire (PHQ-9) | Change from baseline to 8 weeks and 3 months | Assesses depression severity (ranging from 0 (minimun) to 27 (maximun) scores. Higher scores indicate higher depression. |
| De Jong Gierveld Loneliness Scale | Change from baseline to 8 weeks and 3 months | Measure variations in total loneliness score ranging from 0 (minimun) to 11 (maximun) scores. 0 meaning not lonely and 100 very severe lonely score. |
| Lubben Social Network Scale | Change from baseline to 8 weeks and 3 months | Brief instrument designed to gauge social isolation in older adults by measuring perceived social support received by family and friends. Ranging from 0 (minimun) to 60 (maximun) scores. Higher scores represent higher social network. |
| Pearling Mastery Scale | Change from baseline to 8 weeks and 3 months | Measures the extent to which an individual regards their life chances as being under their personal control. Ranging from 7 (minimun) to 28 (maximun) scores. Higher scores indicate greater levels of mastery. |
| WHO 5 Wellbeing Index | Change from baseline to 8 weeks and 3 months | Short self-reported measure of current mental wellbeing (ranging from 0 (minimun) to 25 (maximun) scores). 0 representing the worst imaginable well-being and 100 representing the best imaginable well-being. |
| Dementia Management Strategies Scale | Change from baseline to 8 weeks and 3 months | Instrument to appraise 3 care styles of caregivers: 1) Active management, 2) Criticism and 3) Encouragement. Ranging from 34 (minimun) to 170 (maximun). Higher scores mean a greater presence of behaviours associated to the the corresponding caregiver style. |
| The quality of carer-partner relationship scale | Change from baseline to 8 weeks and 3 months | Scale that measures closeness in a relationship. Ranging from 14 (minimun) to 70 (maximun). Higher scores reflect higher quality of carer-partner relationship. |
| Questions about perceived burden and ethicality | At 8 weeks post-randomisation and 3 month follow up | Tailored questions administered in a purposed-built interview. They |
| Health economics questions | At 8 weeks post-randomisation and 3 month follow up | Tailored questions administered in a purposed-built interview. |
| Caregiver self-efficacy scale | Change from baseline to 8 weeks and 3 months | Measures caregivers' beliefs about their ability to carry out behaviors such as obtaining respite, responding to disruptive patient behaviors, etc. Ranging from 0 (minimun) to 100 (maximun) scores. Higher scores reflect higher confidence. |
| Generalized Anxiety Disorder scale (GAD-7) | Change from baseline to 8 weeks and 3 months | Generalized Anxiety Disorder scale (ranging from 0 (minimun) to 21 (maximun) scores). Higher scores indicates higher anxiety. |
Countries
United Kingdom
Outcome results
None listed