Is SLT for people with dementia a lost cause? Absolutely NOT.

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.

 

References

  1. 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
  2. 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.
  3. 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.
  4. 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.

 

Blogging the evidence: Summarising my systematic review of functional communication interventions for PPA

I have just published my most recent article from my PhD thesis. So, I thought it best to write a brief blog- a taster if you like – providing an overview of the article itself. The article describes the work I did on a systematic review of functional communication interventions:

Volkmer, A., Spector, A., Meitanis, V., Warren, J. D., & Beeke, S. (2019). Effects of functional communication interventions for people with primary progressive aphasia and their caregivers: a systematic review. Aging & mental health, 1-13.

People with Primary Progressive Aphasia (a language led dementia) experience a variety of difficulties with language such as difficulties in understanding word meanings, difficulties thinking of words, difficulties finding the sounds to articulate the words and difficulties in understanding and using sentences. Yet there is relatively little research on management of these speech and language symptoms. Of the literature available, the majority focuses on impairment based approaches such as word relearning interventions. Yet speech and language therapists working in clinical settings across the UK report that they prioritise more functional communication interventions when working with people with PPA. Given this lack of focus on functional communication interventions in the research literature to date this study sought to answer the following questions:

  1. What are the current functional communication interventions for people with PPA and their caregivers?
  2. What is the effectiveness of these interventions?
  3. What are the key intervention components?

We conducted a systematic search of 8 databases, the grey literature and trials databases from 1998 to 2018 to identify all study designs containing empirical data on functional communication focused interventions for people with PPA and their caregivers. Data was then extracted using the ITAX adaptation (O’Rourke et al, 2018). The ITAX adaptation is based on an intervention taxonomy that allows for comparison of standard protocol items that should be reported in intervention trials.  This allowed for comparison of delivery characteristics such as mode, method of contact, materials, location, duration and scripting components. Study outcomes were also compared across the studies

We identified 19 studies, comprising 11 case studies, one case series, one pilot intervention trial, five intervention trials (no control) and one controlled intervention trial. This represents an increase in the number of functional communication interventions studies when compared to previous reviews.

Key findings from the review highlight that including communication partners in the intervention and focusing on skill building techniques – developing the person’s strengths, may be particularly useful methods of supporting maximal generalisation of anything learned in therapy. It is more difficulties to identify any additional conclusions as there was such variability in terms of components such as delivery location and dosage, and these may be much more dependent on the individual’s needs.

Across all 19 studies, 42 different outcome measures were used. Only two studies used the same measure, designed by the authors (the same authors of both studies). This meant that study outcomes were incomparable. Of these outcomes, 19 provided statistical data on significance – 17 of which demonstrated a significant improvement across 8 different studies. The key implication is the need for a set of core outcome measures, used across the research field to allow for cross-study comparison.

Conclusions:

Building on existing strategies and practising these with a communication partner have been identified as key components of functional communication focused interventions for people with PPA and their caregivers. We need more research, using more robust research methods and common outcome measures (such as those that focus on self-efficacy and quality of life) in order to fully understand the effectiveness of functional communication focused interventions.

 

To read the full article please go to: https://www.tandfonline.com/doi/full/10.1080/13607863.2019.1617246