The ‘Better Conversations with Primary Progressive Aphasia and other rare dementias (BCPPA)’ telehealth communication partner training program: A clinical and health economics NHS embedded randomised controlled feasibility (embedded implementation) study protocol
People with dementia and their families
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 post the BCPPA program, with pre- and post the waitlist control group. Maintenance will be measured at the 3-month follow-up. Interventions will be delivered by either: A research assistant (RA) - a highly specialist, HCPC registered speech and language therapist (SLT) with experience working with people with aphasia, PPA, rare dementias and AD; 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 principal investigator. Recruitment: The RA, or a local collaborator (specialist nurse, or SLT) at each site, will recruit and screen potential participants with dementia and their communication partners. The only data to be collected at this stage is names, preferred contact details and an indication that they meet the inclusion and exclusion criteria. This will be shared with the Research Team via secure NHS email, as per the usual process for referring people across NHS trusts The RA or participating local SLT collaborator involved in delivering the study will consent participants with dementia and their communication partners. Local SLT collaborators will have received full training by the Chief Investigator in how to support a person with dementia to understand the commitments required and information around the study, and advice on how to assist someone to make an informed decision to consent. This will supplement local mandatory Mental Capacity Act training that all local collaborators will have completed. The RA and all local collaborators will be supported in the recruitment of potential participants, with weekly or fortnightly meetings with the CI, where potential participants will be anonymously discussed on a case-by-ca
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 session
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.