Guest blogger Anna Volkmer writes about speech and language therapy for people with dementia. You can follow Anna on @volkmer_anna
We are well aware that the number of people living with dementia is increasing at an exponential rate, and will continue to do so for some years to come (DoH, 2012). People with dementia are considered one of the biggest expanding caseloads for speech and language therapists (Mahendra & Arkin, 2003). So we are seeing more and more referrals. Results from my recent survey of speech and language therapists across the UK highlights that most SLTs report increasing numbers of people with the language variant of dementia (primary progressive aphasia) being referred by ever more informed neurologists (Volkmer, forthcoming).
Yet what worries me more is that there are many people with dementia who are not receiving the speech and language therapy services they require. I regularly attend support groups for people with different types of dementia, most recently the rare dementias, to find myself in a discussion with a person with dementia or their relative asking how they can access speech and language therapy. People frequently report difficulties in accessing services only geared toward people with stroke related communication difficulties. Speech and language therapists I know frequently protest the lack of knowledge among the general medical community about what they do.
According to speech and language therapists there seem to be a number of issues at play here including:
- A lack of knowledge amongst referrers: Traditionally neurologists, GPs and psychiatrists diagnose people with dementia. GPs, neurologists and psychiatrists may not be able to keep abreast of all developments in the dementia world, and may not be as informed about the language variants of dementia (primary progressive aphasia) as we would hope. These individuals (and nurses and other MDT members) refer people with dementia to speech and language therapy. They are the gatekeepers if you will. If the gatekeepers do not know about what speech and language therapy can offer they may not make that referral onwards.
- A lack of appropriately funded services: Many speech and language therapists report that they are unable to see people with dementia to work on communication issues as their services do not provide funding for these groups. This is a particular concern for people with the language variants of dementia, who are often young and still working. These are people who frequently seem to “fall between the cracks”.
- A lack of knowledge in the community: In general people associate speech and language therapists as working with children, particularly stammering. It is often the most informed, motivated individuals with communication difficulties who have researched their difficulties on line who ask their medical professionals for a referral. How can we expect others, with less understanding, time and awareness, to advocate for speech and language therapy?
But what do speech and language therapists do?
There is an increasing evidence-base highlighting the positive impact that speech and language therapists can have for people with dementia (Carthery-goulart et al., 2013, Jokel et al., 2014). As Kindell et al. (2015) demonstrate speech and language therapy approaches to working with dementia are much broader than working on articulation and naming (which is also part of what we do). Speech and language therapists can work with people with dementia to improve and maintain reading and writing as well as real life conversations at the bank, in the supermarket and with close family members.
Therapy can train people around the person to understand and use more appropriate communication strategies. Therapy can equip people with dementia with tools to support communication (high or low-tech aids) such as communication wallets, life-history books and ipad devices. Supporting people to plan for the future, making advance directives and assigning power of attorney roles may form part of this role. Planning a daily routine, identifying support groups and attending activities may all form part of a speech and language therapist’s role.
Therapy can improve and maintain communication effectiveness for people, so that they can live more independently for longer. Therapy can support families, staff and carers to understand and manage communication and behaviours with reduced stress and burden. Ultimately this can improve the quality of life for all those involved, and save money for the NHS. This type of evidence is mostly published in low impact journals reporting case studies about successful individual cases. Increasingly there are case series and small trials being attempted and gaining recognition in higher impact journals.
The more evidence there is, the more we can justify developing our services. The more people are aware of what we can provide the greater the demand for our services. This will allow us to improve access to speech and language therapy services. Such a cycle can have can in turn effect our ability to fund research and build more and larger trials.
In the meantime social media is proving a wonderful tool for spreading the word to our colleagues (Schnitzler et al., 2016). Social media is creating a means to share expert opinion as well as evidence based research across a broad network of professionals. Speech and language therapy can harness this tool to advocate for our profession. We need to let people from other disciplines know what we do. Social media make us visible!
Anna Volkmer @volkmer_anna
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, Dementia Neuropsychology, 7(1), 122–131.
Department of Health. (2012). Prime Minister’s Challenge on Dementia: Delivering Major Improvements in Dementia Care and Research by 2015. London: Department of Health.
Jokel, R., Graham, N. L., Rochon, E., Leonard, C. (2014). Word retrieval therapies in primary progressive aphasia, .
Kindell, J., Sage, K., & Cruice, M. (2015). Supporting communication in semantic dementia: clinical consensus 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.
Schnitzler, K., Davies, N., Ross, F., & Harris, R. (2016). Using Twitter™ to Drive Research Impact: A Discussion of Strategies, Opportunities and Challenges. International Journal of Nursing Studies, 59, 15-26.