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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).
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Intervention | Experimental | 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. |
|
| Treatment as usual (TAU) | No Intervention | The "treatment as usual" group does not receive access to the educational programme. |
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Better living with non-memory led dementia course | Behavioral | Caregivers online training and educational phenotype-specific programme on how to support people with non-memory-led dementia. |
| Measure | Description | Time Frame |
|---|---|---|
| Study feasibility | 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). | Since June 2022 to January 2023 (8 months) |
| Acceptability | Prospective and retrospective acceptability (e.g., reasons for not taking part, task completion rate after every module) | Since June 2022 to January 2023 (8 months) |
| Measure | Description | Time Frame |
|---|---|---|
| WHO 5 Wellbeing Index | 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. | Change from baseline to 8 weeks and 3 months |
| Generalized Anxiety Disorder scale (GAD-7) |
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Inclusion Criteria:
Exclusion Criteria:
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University College London | London | WC1N 3BG | United Kingdom |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 37821924 | Derived | Suarez-Gonzalez A, John A, Brotherhood E, Camic PM, McKee-Jackson R, Melville M, Sullivan MP, Tudor-Edwards R, Windle G, Crutch S, Hoare Z, Stott J; Rare Dementia Support Impact team. "Better Living with Non-memory-led Dementia": protocol for a feasibility randomised controlled trial of a web-based caregiver educational programme. Pilot Feasibility Stud. 2023 Oct 11;9(1):172. doi: 10.1186/s40814-023-01403-1. |
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| ID | Term |
|---|---|
| D018888 | Aphasia, Primary Progressive |
| D057180 | Frontotemporal Dementia |
| D000544 | Alzheimer Disease |
| ID | Term |
|---|---|
| D003704 | Dementia |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D009422 | Nervous System Diseases |
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Generalized Anxiety Disorder scale (ranging from 0 (minimun) to 21 (maximun) scores). Higher scores indicates higher anxiety. |
| Change from baseline to 8 weeks and 3 months |
| Patient Health Questionnaire (PHQ-9) | Assesses depression severity (ranging from 0 (minimun) to 27 (maximun) scores. Higher scores indicate higher depression. | Change from baseline to 8 weeks and 3 months |
| De Jong Gierveld Loneliness Scale | Measure variations in total loneliness score ranging from 0 (minimun) to 11 (maximun) scores. 0 meaning not lonely and 100 very severe lonely score. | Change from baseline to 8 weeks and 3 months |
| Lubben Social Network Scale | 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. | Change from baseline to 8 weeks and 3 months |
| Pearling Mastery Scale | 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. | Change from baseline to 8 weeks and 3 months |
| Caregiver self-efficacy scale | 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. | Change from baseline to 8 weeks and 3 months |
| Dementia Management Strategies Scale | 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. | Change from baseline to 8 weeks and 3 months |
| The quality of carer-partner relationship scale | Scale that measures closeness in a relationship. Ranging from 14 (minimun) to 70 (maximun). Higher scores reflect higher quality of carer-partner relationship. | Change from baseline to 8 weeks and 3 months |
| Questions about perceived burden and ethicality | Tailored questions administered in a purposed-built interview. They | At 8 weeks post-randomisation and 3 month follow up |
| Health economics questions | Tailored questions administered in a purposed-built interview. | At 8 weeks post-randomisation and 3 month follow up |
| D001037 |
| Aphasia |
| D013064 | Speech Disorders |
| D007806 | Language Disorders |
| D003147 | Communication Disorders |
| D019954 | Neurobehavioral Manifestations |
| D009461 | Neurologic Manifestations |
| D012816 | Signs and Symptoms |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D019965 | Neurocognitive Disorders |
| D001523 | Mental Disorders |
| D057174 | Frontotemporal Lobar Degeneration |
| D057177 | TDP-43 Proteinopathies |
| D019636 | Neurodegenerative Diseases |
| D057165 | Proteostasis Deficiencies |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D024801 | Tauopathies |