RecruitingInterventional

Better conversations with primary progressive aphasia and other rare dementias: speech and language therapy to keep families together

This study explores how a special type of speech and language therapy, called 'Better Conversations with PPA' (BCPPA), can help people with rarer forms of dementia, such as primary progressive aphasia, communicate better. Many people with these conditions find it hard to chat, which can lead to feeling lonely. This therapy teaches them and their families practical ways to improve their conversations. Researchers want to see the best way to offer this therapy, whether doing it online works well, and how it can help families feel more connected and improve their overall well-being. Ultimately, they hope to make this helpful therapy more widely available.

At a glance

Status

Recruiting

Sponsor

University College Hospital

Enrolment target

Start

12 Feb 2025

Estimated completion

31 Jul 2027

People with dementia and their families

What is this study about?

If you or someone you love has a type of dementia that mostly affects communication, like primary progressive aphasia (PPA), you know how challenging everyday conversations can become. This can make socialising difficult and sometimes lead to feelings of loneliness or sadness for both the person with dementia and their family. Currently, speech and language therapy is the main support available for these communication issues, but it's not always easy to get or widely studied.

This study, called 'Better Conversations with PPA' (BCPPA), is designed to find better ways to help. It's building on earlier work that showed how a special program could genuinely improve how people with PPA and their families talk to each other. The BCPPA program teaches practical tips and tricks to make conversations smoother. Therapists work with the person and their family member, often using video to see what's working and what could be improved, helping everyone feel more confident.

The main goals of this research are to figure out the best way to deliver this therapy – for example, how often and for how long it should be given, and if doing it online is a good option. They also want to understand who would benefit most from the program and how to best measure if it's making a real difference. By doing this, the researchers hope to build strong evidence so that this helpful therapy can become more easily available to many more families across the UK.

Key takeaways

A study for people with rare dementias affecting communication.
Aims to improve daily conversations for patients and families.
Involves online speech and language therapy sessions.
Requires a family member or friend to participate as a communication partner.
Study wants to find the best ways to deliver and measure this therapy.
Funded by NIHR, run by University College London.

Who may be eligible?

This study is looking for people who have been diagnosed with certain types of dementia where communication is a main challenge, such as primary progressive aphasia (PPA) or other rare dementias. You should be able to hear and see well enough to take part in online therapy sessions, and also be able to concentrate for about an hour to an hour and a half with some support.

It’s important that English is your main language for daily use. You will also need a family member or close friend who is willing and able to join the study with you. This person will be your 'communication partner' during the therapy. Finally, you will need to have a good internet connection at home and be comfortable using a basic computer (which the study can lend you) for video calls.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Do you have a diagnosis of dementia, like PPA, where communication is difficult?
Do you have a family member or friend who can and wants to join the study with you?
Can you participate in online video calls (seeing, hearing, and concentrating for 60-90 minutes)?
Is English your main language for daily conversations?
Do you have a reliable internet connection at home?
Are you comfortable using a computer (the study can lend you one if needed)?

Answer every question to see your result.

What does participation involve?

If you join this study, you and your communication partner will first go through a screening process to make sure you're a good fit. Once accepted, you'll be randomly assigned to one of two groups: either you'll start the 'Better Conversations' therapy right away, or you'll be on a waiting list for a short period before starting. Both groups will eventually receive the therapy.

The therapy itself involves about four sessions, usually one per week for 4-6 weeks, delivered by a speech and language therapist online via Zoom. These sessions will help you and your partner practice new ways of communicating. During the study, some of your conversations might be video-recorded so the therapists can give you feedback and personalise the support. The study is expected to run from December 2024 to January 2030, covering all participants from start to finish.

Potential risks and benefits

Taking part in this study could offer some great benefits. You and your family member might find new and better ways to communicate, which could make everyday conversations easier and help you both feel more connected and less isolated. On the other hand, a potential small risk is that some of the assessments or therapy activities might feel a bit tiring or upsetting at times. However, you are always in control and have the right to withdraw from the study at any point, for any reason, without it affecting your usual medical care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University College London Hospitals NHS Foundation Trust
City only
London, United Kingdom

Common questions

What is primary progressive aphasia (PPA)?

PPA is a rare type of dementia where problems with language and communication are usually the first and most noticeable symptoms.

What is a 'waitlist-controlled trial'?

This means some participants get the therapy right away, while others wait for a short period, and then receive the same therapy. Everyone gets the treatment eventually.

Will I need to travel for this study?

No, all therapy sessions will be delivered online using a video call platform like Zoom from your home.

Who will be my 'communication partner'?

This will be a family member or close friend who is willing to participate in the therapy sessions with you.

How long will the therapy sessions last?

Each session with the speech and language therapist will typically last between 60 to 90 minutes.

How to find out more

Anna Volkmer

a.volkmer.15@ucl.ac.uk +44 (0)7597407187 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.