By Dr Anna Volkmer (UCL)

Why this matters?

Imagine if you slowly lost the ability to have conversations with family and friends – and nobody could explain what was happening. People with language-led dementia or ‘primary progressive aphasia’ (PPA) often find themselves in this devastating predicament – waiting years for a diagnosis and unable to access help and support.

As the symptoms progress people rely on other people, their spouses, partners and family, to help them with everything. People with PPA and their families become lonely and isolated. Depression and anxiety are common in people with PPA and family members. Speech and language therapy is the main treatment for PPA but isn’t always known about.

Why does this matter? Firstly, speech and language therapy has the potential to reduce the risk of negative mental health outcomes for people with PPA and their families and keep people at home for longer. Secondly, what we know about speech and language therapy for PPA is relevant to people with all kinds of dementia as communication difficulties are common across dementias.

What’s new or interesting?

We have designed a programme of work to increase awareness of speech and language therapy for PPA. This includes an International PPA awareness day. We have been hosting the awareness day for two years now and this year events were health across 15 countries around the world. We want to increase awareness amongst the public, but also with the health professions, so that people with PPA can be promptly referred on to speech and language therapy and fully benefit from the range of interventions available to support people to maintain conversations and connections. You can see the webinars on our website and check out the work we do in our International SLT/P PPA Network here.

What happens next?

We have been working with people with PPA and their families to provide more therapy AND more training on PPA for speech and language therapy students across the UK. Our SPIN-D funding has helped us establish a national university speech and language therapy clinic for people with PPA and their family members, staffed by student speech and language therapists. The students are supervised by an experienced speech and language therapist. The clinic is hybrid, so that people can attend via video conferencing or in person. We mainly offer group therapy, not often available in the NHS. We are measuring the benefits of the clinic for people with PPA and their families’ using measures of communication and quality of life. We are also asking patients, their families and students about how the clinic helps. Watch this space to see how the work unfolds!