Over the next few weeks this blog will be giving voice to speech and language therapists other than myself, who have things to say on dementia. Georgia Bowker-Brady is a speech and language therapist, working on the Better Conversations with PPA (BCPPA) project as a local collaborator. Georgia has written a really insightful blog into the everyday challenges that clinicians face when working in this area, but highlights why it is really worth it:
Working as a speech and language therapist with people with dementia is a role that I find highly rewarding. Yet when I tell others about my job “Aren’t they a lost cause?”-type sentiments (framed more politely) often ensue. Of course like any role it can have its challenges but I also think there are many positives.
So I thought I’d have a go at briefly outlining my take on some of the highlights and difficulties when working with people with dementia as a speech and language therapist:
Speech and language therapists aren’t exactly rolling in randomised controlled trials right now, most likely due to several factors including the relative youth of our profession, the lack of homogeneity of client groups and the complexity of “communication” as a process. When working in dementia care this paucity of evidence-base can feel even more exaggerated.
The evidence base is, however, slowly growing and we do have an increasing number of studies that show that intervention can be effective even in moderate and severe stages of dementia (Swan et al, 2018). Two evidence-based principles that I often find helpful to use in conjunction with other approaches are spaced retrieval and errorless learning (Jang et al, 2015; Jokel & Anderson, 2012; Oren et al, 2014;). I find them pertinent when, for example, introducing communication aids, or for the re-learning/retention of single words.
I recently got involved with Anna’s Better Conversations with Primary Progressive Aphasia (BCPPA) pilot study and thoroughly enjoyed carrying out the therapy with one of my patients and her conversation partner. They had positive outcomes and I found it a valuable experience both in terms of being involved in the study and in further considering the role of videoing in conversation partner training. Although there’s still a way to go, dementia research is finally moving in the right direction on the national and international agenda. Even if you don’t fancy heading up a research project, I would really encourage you to get involved with chances to contribute to research that’s happening if you can. For me, this is another plus to the job.
The progressive nature of dementia presents certain considerations for goal-planning and intervention, and whilst some patients may be able to benefit from impairment-based therapies, we’re never quite sure how long the benefits might be sustained. Additionally, the cognitive changes experienced by someone with dementia can affect the way they engage in speech and language therapy. During our clinical training, cognition and language were often neatly separated out, but of course the reality is that they are inherently entwined. For people with dementia difficulties with memory, attention, executive function etc can impact on their ability to engage in therapy or to take on board compensatory strategies. There can also be challenges associated with the person possibly lacking insight into their difficulties.
The flipside is, that to work around these obstacles we take a more pragmatic and holistic way. Perhaps our lack of evidence base gives us more licence for creativity to do this, and the motivation to be truly person-centred. In my experience it’s vital to work closely with families, carers and the wider multi-disciplinary team which again contributes to increasing participation and a supportive communicative environment. Whilst gains from impairment-based work may not be long-term, I’ve had feedback from patients that actually just realising they can improve at something with a diagnosis of dementia is a powerful discovery.
As we’re all keenly aware, service provision across the country varies enormously. Due to the current pressures, teams have to ring-fence their remit carefully and at times it’s people with dementia that lose out. For example, some services have criteria which will only include people with dementia for dysphagia but not for communication. I’m not sure why services that support adults with acquired communication difficulties single out dementia as a diagnosis for exclusion. The patients that slip through the net are not getting the support they need. This can feel frustrating, disheartening and unfair. I’m sure we’re all doing our best to advocate for these patients and highlight our concerns to the relevant personnel.
My final point, but one of the most important about why I love my job is that through my work I have met some fascinating, kind and wonderful patients who have a tapestry of stories to share. They have often offered life advice and pearls of wisdom that people would pay good money for! One couple recently told me the secret to their 50 year marriage – “Always lift the other person up. Be the one that believes in them and tell them you love them every day.”
So those are my thoughts – in actual fact, I think many of those challenges would be similar across several adult acquired patient groups. All in all for me, I am certain the highlights far outweigh the challenges.
- Jang, J. S., Lee, J. S., & Yoo, D. H. (2015). Effects of spaced retrieval training with errorless learning in the rehabilitation of patients with dementia. Journal of physical therapy science, 27(9), 2735–2738. doi:10.1589/jpts.27.2735
- Jokel, R. & Anderson, N.D. (2012) Quest for the best: effects of errorless and active encoding on word re-learning in semantic dementia. Neuropsychological Rehabilitation, 22(2): 187-214.
- Oren, S., Willerton, C., & Small, J. (2014) The effects of spaced retrieval training on semantic memory in Alzheimer’s Disease. Journal of Speech-Language and Hearing Research, 57(1):247-70.
- Swan, K., Hopper, M., Wenke, R., Jackson, C., Till, T. & Conway, E. (2018). Speech-Language Pathologist Interventions for Communication in Moderate-Severe Dementia: A Systematic Review. American Journal of Speech-Language Pathology, 19:1-17.