An interventional study of Better living with non-memory led dementia course in Primary Progressive Aphasia, Frontotemporal Dementia and Alzheimer Disease, sponsored by University College, London. Completed at 1 site in United Kingdom. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2023-04-27.
Sponsored by University College, London · Not applicable, Interventional, and Treatment
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.
211 studies on the registry are indexed under Aphasia, Primary Progressive; 59 are open to participants now.
This study's enrollment of 31 is close to the median of 31 across 135 interventional studies indexed under Aphasia, Primary Progressive.
Browse Aphasia, Primary Progressive studies →University College, London is the lead sponsor of 647 studies on the registry; 145 are open to participants now.
Of its 6 completed or terminated interventional studies of FDA-regulated products, 2 (33%) have results posted.
Counted across the registry records on this site, refreshed daily.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
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.
Behavioral: Better living with non-memory led dementia course
The "treatment as usual" group does not receive access to the educational programme.
Caregivers online training and educational phenotype-specific programme on how to support people with non-memory-led dementia.
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).
Time frame: 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)
Time frame: Since June 2022 to January 2023 (8 months)
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.
Time frame: Change from baseline to 8 weeks and 3 months
Generalized Anxiety Disorder scale (GAD-7)
Generalized Anxiety Disorder scale (ranging from 0 (minimun) to 21 (maximun) scores). Higher scores indicates higher anxiety.
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: 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.
Time frame: Change from baseline to 8 weeks and 3 months
Questions about perceived burden and ethicality
Tailored questions administered in a purposed-built interview. They
Time frame: At 8 weeks post-randomisation and 3 month follow up
Health economics questions
Tailored questions administered in a purposed-built interview.
Time frame: At 8 weeks post-randomisation and 3 month follow up
Plan to share: No
Ran from Jun 2022 to primary completion in Feb 2023, 7 months.
Of 58 non-industry interventional studies with no phase under Aphasia, Primary Progressive, half reached primary completion within 40 months of starting (the median), counting those still running; a quarter within 22 and three quarters within 97. This study's 7 months is below that.
Counting every sponsor, half of 59 studies reached it within 40 months; a quarter within 22 and three quarters within 97.
How these figures are worked out, and which studies are left out of them.
This study is completed, as verified in Aug 2022. You cannot join it, but the record below documents what was studied.
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