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Spreading the word: What do speech and language therapists do with people with dementia?

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When people think of dementia they most commonly consider the first signs as memory difficulties: forgetting recent events, conversations, where they have put things or even people's faces. Yet there are many people who will experience difficulties in language and communication long before memory is affected. For some people this may be the most significant difficulty for some time. These people are likely to present with difficulties thinking of words, or understanding words, they may mix sounds up or have difficulties with complex sentence structures. This is known as primary progressive aphasia. People with primary progressive aphasia will remember exactly where the shops are, what happened last week and where they left their keys but language will continue to decline for some time before other thinking skills are affected. As one can imagine this is incredibly frustrating and is often mis-diagnosed as something different- a different type of dementia, a stroke or anxiety.

Speech and language therapists work with people with language and communication difficulties such as primary progressive aphasia. There is some research evidence that shows people with primary progressive aphasia can benefit from daily exercises or "drills" to maintain words (Carthery-Goulart et al., 2013, Jokel et al, 2015). This type of exercise means people must practice a set of words - saying them aloud or revising the word meanings every day for a set period (say 30 minutes). These words must be really meaningful and useful for the person to have the most effect. And the person must be motivated to continue practicing these on a daily basis. For many this really works, and can be extended to sentences too.

Reading and writing can also become a difficulty, and there is some research emerging that demonstrates therapy tasks and regular practising using techniques such as reading aloud, using devices and apps to provide feedback on accuracy and read cover write systems can maintain and even improve reading and writing skills for this group (Volkmer, 2013).

Communication aids are another area of speech and language therapy that can support people to communicate their needs. Using high-tech tablet aids that speak for a person, down to charts or flip cards of people or items required in the shop can be useful (Carthery-Goulart et al., 2013). Many people with primary progressive aphasia may benefit from written scripts that they can read aloud, or rehearse and apply to appropriate settings (Volkmer, 2013).

Future planning; writing advance directives and planning for future decision making can also form part of the speech and language therapists’ role (Kindell et al, 2015). Supporting people to ensure they have a voice beyond the time when they may no longer be able to communicate can be extremely important to people with progressive communication difficulties.

For others working on a conversation together is a priority. People with primary progressive aphasia and their families often report changes in conversations and relationships; where one person is no longer the outspoken joker and story teller, or the empathic listener, or the animated politically opinionated partner. People report not knowing how to converse with their loved ones any longer; and this come from both the person with the communication difficulties and their families.

A UK-wide survey of speech and language therapists shows that in therapy sessions most speech and language therapists spend time working on communication training as part of their management plans (Volkmer, forthcoming), yet there is only anecdotal information in the research literature on the efficacy of such an approach.

Communication training is an avenue that I am particular interested and I am currently refining a communication training program called ‘Better Conversations with Primary Progressive Aphasia’. This will be piloted across three NHS settings as part of my PhD project. It will be a freely available internet based resource, which speech and language therapists can deliver to people with primary progressive aphasia.

Speech and language therapists can offer a host of individually tailored interventions to improve and maintain communication for people with primary progressive aphasia. Yet people with primary progressive aphasia and their families are more isolated from our services than people with other types of dementia (Riedl et al, 2014). This may be because of the lack of knowledge of what speech and language therapy can offer, thus professionals from other disciplines such as medicine may not realise they can refer their patients to this service (Volkmer, forthcoming),. It is also likely to be the result of the often huge discrepancies in service provision across different geographical areas, where speech and language therapy service may not always be funded (Volkmer, forthcoming).

Yet people with dementia are one of the biggest expanding caseloads for speech and language therapists (Mahendra & Arkin, 2003), and this area of research is also starting to come into its own. Perhaps this will herald a new age, where more research can demonstrate the added value of speech and language therapy for this group, people will become more aware of what speech and language therapists can do and consequently more funding may be made available for these services.


References and Further reading

Carthery-Goulart, M. T., Machado, T. H., Mansur, L. L., Alice, M., Pimenta, D. M., Lie, M., Nitrini, R. (2013). Nonpharmacological interventions for cognitive impairments following primary progressive aphasia A systematic review of the literature, 7(1), 122–131.

Jokel, R., Graham, N. L., Rochon, E., Leonard, C., Jokel, R., Graham, N. L., … Leonard, C. (2015). Word retrieval therapies in primary progressive aphasia Word retrieval therapies in primary progressive aphasia, 7038(October). http://doi.org/10.1080/02687038.2014.899306

Kindell, J., Sage, K., & Cruice, M. (2015). Supporting communication in semantic dementia: clinicalconsensus from expert practitioners. Quality in Ageing and Older Adults, 16(3), 153-164.

Mahendra, N., & Arkin, S. (2003). Effects of four years of exercise, language, and social interventions on Alzheimer discourse. Journal of communication disorders, 36(5), 395-422.

Riedl, L., Last, D., Danak, A. and Diehl-Schmidt, J. (2014) Long term follow up in primary progressive aphasia: Clinical course and health care utilisation. Aphasiology 28(8-9), 981-992.

Volkmer, A. Assessment and Therapy for Language and Cognitive Communication Difficulties in Dementia and Other Progressive Diseases. J& R Press, UK. (Book)

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Paul Hitchmough

The consultant came out to me and when we were in my house, he said, “Have you got anyone here with you?” I said, “No...why? Do I need someone here? Just tell me.”

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