People with dementia and their families Mental and Behavioural Disorders
Conditions
Interventions
Design:
This pilot feasibility trial will be a randomised waitlist-controlled trial design. Comparisons will be made between groups on pre- and post-treatment measures, comparing the scores pre- and p
the majority (over 80%) of intervention will be delivered by the RA.
or a local collaborator (also a specialist, experienced HCPC registered SLT), trained to deliver the interventions by the RA or pr
Sponsors
University College Hospital
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Participants with dementia will be invited to participate in the study if they fulfil the following criteria: 1. Have a diagnosis or possible diagnosis of dementia (e.g. PPA, FTD, PCA, AD), as identified by a specialist diagnostic dementia service (informed by case history, neurological examination, brain imaging and appropriate psychometric testing if required) and in line with current diagnostic criteria. 2. Have the ability to communicate and understand communication to participate remotely in the BCPPA program 3. Able to see and hear well enough to participate remotely in the BCPPA program 4. Are functionally able to engage in a remotely delivered BCPPA program (i.e. able to maintain some concentration and remain in a 60–90-minute session with support, minimal challenging behaviour that would be unlikely to cause disruption) 5. English as their language of daily use 6. Have a communication partner (CP- family member or friend) who can and consents to participating in the project 7. To be confirmed by the RA or local SLT collaborator at the consent appointment: Have access to the internet at home with a minimum speed of 3.8Mbps download and 3Mbps upload to achieve 1080p HD video for group conference calling. (NB ideally within the 10 to 25 Mbps download speed range and at least 5 Mbps upload speed for best results). A home visit or remote internet speed test and advice session by the RA (or local SLT collaborator, where appropriate) will occur to test and optimise speeds (e.g. by troubleshooting, using cabling, cache flushing, etc). 8. To be confirmed by the RA or local SLT collaborator at the consent appointment: Be able to use a Mac laptop computer (which will be loaned by the research team) with support from either the CP or person with dementia (either of whom may be the most technology literate) to use the teleconferencing platform, Zoom. NB: Computer use and teleconferencing platform access will also be facilitated in pre-treatment set-up sessions. Communication partner: Having identified a potential participant with dementia who fulfils the inclusion criteria outlined above, their communication partners will also be invited to participate in the study in line with the following criteria: 1. They have been identified by the participant with dementia as a communication partner 2. They can attend the appointments and consent to participating in the study 3. Can see and hear well enough to participate remotely in the BCPPA program 4. English as their language of daily use
Exclusion criteria
Exclusion criteria: Participants with dementia and communication partners: People (both participants with dementia and their communication partners) will be excluded from participation in the pilot if they: 1. Do not have the capacity to consent 2. Have a history of brain lesions or major head trauma 3. Have a major physical illness or disability which could impact participation 4. Present with a major psychiatric diagnosis 5. Present with prominent behavioural disturbance 6. Present with prominent episodic memory, visual memory or visuoperceptual impairments which would preclude access to telehealth 7. Do not have functioning, reliable internet access at speeds over 3.8Mbps download and 3MBps upload. 8. Are unable to demonstrate as a dyad that they can use a Mac laptop computer to access video conferencing (via Zoom) Additionally, communication partners will be excluded if they have a diagnosis of dementia themselves. As per routine practice, the researchers will not have access to the communication partner's medical record and judgments about inclusion and exclusion will be made based on what potential communication partner participants report to the research team.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Communication confidence measured using the Communication Confidence Rating Scale for Aphasia (CCRSA), and communication participation using the Communication Participation Item Bank (CPIB). Participants are measured twice at baseline, pre-randomisation, once post-intervention/waiting list control period and again at 3 months after the intervention. | — |
Secondary
| Measure | Time frame |
|---|---|
| The following secondary outcome measures are completed twice at baseline, pre-randomisation, once post-intervention/waiting list control period and again at 3 months after the intervention: 1. Language skills and discourse are measured using the Comprehensive Aphasia Test (CAT) and a personal narrative 2. Conversation is measured using conversation samples. At each time point, participants will make four 10-15-minute video recordings of natural conversation. These will be assessed using the Kagan MSC-D/MPC-D Scale. 3. Participation will be measured using the American Speech-Language-Hearing Association Functional Assessment of Communication Skills for Adults (ASHA FACS) 4. Relationship will be measured using the Quality of caregiver-patient relationship 5. Health economics measures include the EQ5-5D-5L+C, the Investigating Choice Experiments for the Preferences of Older People - CAPability index (ICECAP-O) and the Resource utilisation in dementia (RUD) questionnaire | — |
Countries
England, United Kingdom, Wales
Contacts
Public ContactAnna Volkmer
Outcome results
None listed