Remote communication training enters NHS feasibility testing for rare dementias
Primary progressive aphasia and other rare dementias often erode conversation long before many of the motor or memory features that families expect from dementia become obvious. Speech can become effortful, word-finding can fail mid-sentence, and the social rhythm of daily exchange can collapse around the diagnosis. In that setting, the question is not simply whether an intervention works in principle, but whether it can be delivered in a way that fits an NHS clinic, a household routine, and the fragile timing of early post-diagnosis care.
This protocol lays out a randomized feasibility study of Better Conversations with Primary Progressive Aphasia and other rare dementias (BCPPA plus), a telehealth communication partner training programme designed to improve conversational participation for people with communication difficulties and the people who speak with them every day. The study builds on an earlier NHS pilot of face-to-face BCPPA that showed positive outcomes, while also exposing unresolved questions about delivery format, timing, and the most meaningful way to judge benefit. Remote delivery is now the central test.
The intervention will be offered over 4 to 6 weeks, with the exact dosage shaped by goal achievement. Participants will be recruited at diagnosis and review appointments from two NHS trusts, then randomized after completing a repeated baseline measure. One arm will receive BCPPA plus, while the comparison group will enter through a deferred pathway after a 6-week waiting period. Every participant will be assessed immediately after intervention and again at 3 months.
Why the trial is being run now
The rationale is practical and clinically specific. Communication partner training is not medication, and its value depends on whether relatives and care partners can change how they scaffold conversation, repair breakdowns, slow the pace, and preserve agency for the person living with aphasia or another rare dementia. A face-to-face model can work, but it can also be difficult to access, especially when travel, fatigue, geography, and service capacity interfere. Teletherapy offers a cleaner fit with many NHS pathways, yet the study is explicitly asking whether the remote format remains acceptable and deliverable as intended.
One sentence captures the central pressure point: if the intervention cannot be delivered remotely with fidelity, its promise in routine care will remain limited.
The protocol also extends beyond PPA alone. Investigators are asking whether BCPPA plus is acceptable and useful to people with a wider range of dementia types, which matters because communication failure is not confined to one diagnostic label. Across dementias, the bedside problem is similar: conversations become shorter, more effortful, and easier to derail, and the burden shifts silently onto families who must improvise around every missed word and unfinished thought.
Feasibility questions are driving the design
The study is built around implementation and feasibility, not definitive efficacy. Its questions are unusually concrete: What eligibility criteria should define the intervention population? Can remote BCPPA be delivered as intended? Are the planned outcome measures sensitive enough to detect change before and after treatment and at 3 months? What barriers and facilitators will shape implementation in an NHS setting? Which perspective should guide a future cost-effectiveness analysis, and how should costs and outcomes be measured?
Those questions matter because complex communication interventions tend to fail for reasons that have little to do with biological effect and everything to do with service delivery. A family may value the intervention, yet still miss sessions. A therapist may have a workable protocol, yet struggle to adapt it to different home settings or disease stages. A measure may look sensible on paper, yet fail to capture the patient-centered gains that families care about most, such as reduced frustration, improved turn-taking, or less abandonment of conversation.
The study uses a mixed-methods process evaluation and health economic design in line with Medical Research Council guidance for complex interventions. Quantitative data will sit alongside qualitative analysis, which should help explain not only whether the programme can be delivered, but why it succeeds or stalls in a real NHS environment.
Conversation as a clinical target
Speech and language therapy in dementia has always had to prove that interaction itself is a valid clinical outcome. BCPPA plus is rooted in that idea. Rather than trying to restore lost language capacity, it focuses on the conversational environment: the habits, prompts, pacing, and repair strategies used by the communication partner. In primary progressive aphasia, where language decline is progressive and often relentless, preserving participation can be as meaningful as any symptom score.
The protocol reflects that logic by selecting outcome measures aligned with a developing core outcome set for PPA. The emphasis on core outcomes is important because communication studies often become fragmented when every trial chooses a different endpoint. Without consistency, even a useful intervention can be difficult to compare across studies or scale into routine practice.
Health economics will be part of the test
The protocol does not treat cost as an afterthought. It asks what perspective should guide future economic evaluation and how costs and outcomes should be measured for BCPPA plus versus usual care. For an NHS intervention, that is a direct service question, not an academic extra. Remote delivery may lower some barriers by reducing travel and attendance burden, but it also depends on staff time, digital access, and the ability to maintain a therapeutic relationship across video sessions.
A single deferred-entry design can answer several operational questions at once, but it cannot eliminate uncertainty about scale-up. The study is designed to identify whether the intervention can be delivered, whether participants accept it, and whether the framework for a later full trial is realistic. Economic feasibility will be inseparable from that judgment.
Ethics, oversight, and what comes next
Ethical approval was granted by the Health Research Authority for England and Wales under IRAS project ID 341322 and REC reference 24-NI-0123. The trial is registered as ISRCTN16268666. Results will be published in peer-reviewed journals and shared with participants and patient and public involvement advisors in accessible formats.
For now, the most important feature of this protocol is its restraint. It does not claim that telehealth communication partner training will solve the burden of rare dementia communication problems. It asks a narrower and more useful question: can BCPPA plus be delivered remotely, measured meaningfully, and embedded in NHS care well enough to justify a later effectiveness trial? The answer will depend on recruitment, adherence, outcome sensitivity, and whether the programme can move from an early supportive idea to a repeatable clinical service without losing the human texture that makes conversations worth preserving.