Doing research with people with dementia: What actually happens in the interview?

 

Talking to people with dementia can be hard work. As a health professional I have often used numerous creative strategies to do this, borrowed from my knowledge of working with people with aphasia post stroke, or cognitive communication difficulties post brain injury. These strategies can include modifying the environment (quiet is generally better- therefore off the ward, no TV, no visual distractions either), considering the time of day (depends on the person when they are at their best), modifying my communication (using pictures can help or hinder, modifying language to be simpler is not always effective) and considering carefully what else might help (do friends/carers/family help or not). This can really very effective ways of interacting.

When doing research with people with dementia communication strategies can also support participation. I have been running focus groups with people with Primary Progressive Aphasia, and more recently people with Alzheimer’s dementia. The strategies that we needed to employ to support people to participate were overlapping but different. Some of the commonalities included environmental factors, such as the way the chairs were set, the number of participants we invited, the pace of the activities. Some strategies needed to be specific to the individuals involved. One person I worked with used gesture to convey meaning, and I needed to use more clarification to ensure I had interpreted her correctly. Another person I worked with needed frequent re-orientation to the task and where his partner was, whilst also participating in some discussion.

That said, it can be very easy to use more leading or biased language when one tries to break things down and make them more accessible for the listener. We are supposed to use the least bias possible, and present information in a balanced way. Unless we carefully consider the way we use pitch, tone, and gesture alongside vocabulary we can easily biased people without even realising it. I was recently speaking with another SLT, Sarah Griffiths who has recently blogged on this topic for the dementia researcher website. Sarah is a former senior lecturer at Marjon University and currently a research fellow at Plymouth University. We were discussing how we do research with people with dementia, how we engage them in a conversation or interview, but don’t bias them and whether this is even possible. The more I think about this, the more I am not sure we can’t avoid some bias. But perhaps by being mindful of context and language, by using multiple choices and acknowledging bias this can help.

Sarah put me onto a great blog by Jemima Dooley, she cites the work done by a group of researchers with dementia called the Forget-Me-Nots who are coming up with tips and hints on how to support people with dementia to tell their stories in a research context. Jemima discusses the idea of using photos, taken by the research participants, which then support discussion points in interviews. I have used this approach, successfully in therapy, and PPI work. I have yet to see it work in research activities specifically. I am planning to use it in some work I doing shortly. But again I am not sure that this is without bias, and interpretation.

I have though quite a bit about this, and I have actually been pondering whether, as long as we use all these strategies to maximise participation, should we actually be focusing more on how we are interpreting the data? Do we need to be mindful of getting assurance from the people themselves, their families or other people with dementia, that we are interpreting the data correctly? Would this support our methodology too? Can we do this with people with dementia?

Food for thought!

 

Guest SLT blog: ‘Chatting Matters’ – Positive collaboration for communication difficulties in Dementia

Over the last few years I have been interacting more and more with speech and language therapists, working in the field of dementia, who are providing innovative services to people with dementia. Caroline and her colleagues told me all about the wonderful Chatting Matters group they set up, and I asked them to write about it for me. The following provides a really inspiring account of the work they did to set it up.

Authors: Caroline De Lamo White and Rachel McMurray are speech and language therapists in Leicester Partnerships NHS Trust, and Nicola Lawtie was the speech and language therapy lecturer at De Montfort University.

Introduction:

There is currently variable provision of communication intervention for people with dementia (PWD) in the UK (Volkmer et al, 2018). Many clinicians report that the greatest proportion of PWD being seen are at the later stages of the disease for assessment and management of dysphagia.  Progressive loss of language can be frustrating and traumatic for the person with dementia and affects their identity and relationships (Bryden, 2005). Communication difficulty has also been described as one of the most frequent and hardest to cope with experiences for family carers (Braun et al, 2010) and can negatively impact carers’ emotional and physical health (Gallagher-Thompson et al, 2012).

To address this area of unmet need in our service we decided to offer a community-based intervention to focus on communication breakdown in Dementia to support both the PWD and their main carer. There was a risk of being overwhelmed by a large number of referrals so we decided to undertake a small scale pilot study using the ‘plan, do, study act’ cycle advocated by the NHS Improvement (NHSI). We came up with several ideas but decided on running a communication support group for people with dementia and their carers. ‘Chatting Matters’ was born.

Aims of Chatting Matters:

  • To explore the value and scope of community-based Speech and Language Therapists (SLT) working with clients with communication difficulties secondary to dementia to inform future possible service developments for PWD.
  • To provide carers with practical strategies and tips to improve communication at home; thereby reducing carer strain and frustration.
  • To increase people with dementia’s sense of well-being and facilitate increased positive engagement in social interaction.
  • To work collaboratively with De Montfort University SLT course to develop innovative placement models to support the students learning and support the running of the groups.

 

We established new links with the local community mental health team who were able to provide a manageable quantity of referrals within an agreed time frame. This enabled us to undertake the study alongside existing caseloads without being overwhelmed. Referral criteria was kept fairly broad for the initial group however referrers were asked to consider couples for whom communication was a significant challenge at home, and who would be willing to attend a group.  Referrals were triaged by two qualified SLTs in the clients own home. One therapist explored the carer’s perceptions, insights and experience of their partner’s communication difficulties. The other clinician spent time informally assessing the communication abilities of the person with dementia in order to ascertain the severity and nature of their impairment.  Clients presented with a variety of conditions including early onset Alzheimer’s disease, vascular dementia, dementia with Lewy bodies and fronto-temporal dementia and had a varying levels of communication impairment within the mild to moderate range.

 

 

Format:

We ran a six week conversation group for the clients, alongside a support group for their carers.  There were eight participants in each group.  We worked in collaboration with undergraduate placement students from De Montfort University as a way to fully resource and support the running of the two groups. This service model would have been very difficult to run with just the SLT’s and this innovative placement opportunity provided a valuable and insightful learning experience for the students. The students were supported to run the client group and encouraged to think about a variety of multi-sensory activities which would stimulate memory, communication and promote positive person-centred interactions in order to enhance well-being. Research suggests positive changes to well-being and communication are achieved through cognitive stimulation as well as improvements in cognition therefore therapy tasks included elements of reminiscence therapy, total communication and aspects of cognitive stimulation therapy (Spector et al, 2013).

The SLT’s concurrently ran the carers group providing knowledge, strategies, advice and support around interaction and communication with PWD. There was also an opportunity for carers to share experiences together.

 Outcomes:

A variety of assessment tools were used to capture outcomes but personal narrative was found to be the most powerful and specific. Quantitative measures were found to be less sensitive to change. Carers were reluctant to “give it a number” and whilst the focus of many SLT tools is to measure language skills, for the clients the aim was to improve well-being and engagement. The comments given by clients, carers and students are captured in the table below and categorised by theme.

Participants

 

 Outcomes Comments
Clients with dementia Improved sense of well-being

 

 

Increased engagement in activities of daily living

 

 

 

Reduced sense of isolation

“Oh I have enjoyed it, yes!”

D- person with dementia

 

“The group lifted my spirits. I used to just watch TV and now I get dressed and go out”

I – person with dementia

 

“I felt abandoned after diagnosis. I don’t feel so alone. I’ve really enjoyed [the conversation group].”

V – person with dementia

 

 

 

Carers Increased level of insight into the importance of well-being in self and others.

 

 

Observing a tangible increase in levels of engagement in a supportive environment.

 

 

 

 

Increased carer resilience

 

 

Improved knowledge, understanding and acceptance of the condition and its affects.

 

 

 

 

 

Change of approach and increased insight into the applicability of communication strategies.

 

“[The group] made me realise that well-being applies to us all. It made me think about how to

bring the best out in K ”

 

“S looked forward to the group each week and I found that when he was in the session he really came ‘out of his shell’; initiating conversation with others and making jokes.”

 

“I’m coping much better than I did [before the group]”

 

“[The group] has helped me accept [my husband’s diagnosis of dementia]. I was feeling very anxious at times before the group. This has reduced.”

 

 

 

“ I have learnt the importance of patience with communication”

 

“Not everything has been relevant to my specific circumstances but there are bits to take away.”

Placement Students Developing a therapeutic relationship

 

Continuity of care

 

Witnessing positive change within a short time frame

 

Experience of intervention planning for people with dementia

 

Running a group

 

Working independently

 

Developing workforce

“For much of the rest of my adult placement I was doing assessments/reviews, it was really good to see clients over 6 weeks, build relationships and see that the clients were both benefitting and enjoying it”

 

“I learned about Dementia and its impact and could see that the couples really needed this”

 

“I knew that it would not have been possible to resource this group without students which made us feel we were really making a difference”

 

“I enjoyed the independence of planning and running the groups with my peers but with support. It gave me confidence and helped me really develop my skills”

 

Reflections and Outcomes on Speech and Language Therapy Provision:

We were able to offer earlier intervention to PWD and address a currently under-resourced area of need, which may prevent crisis further down the line. We were able to work with conversation partners / carers to develop strategies to support interaction, as recommended by NICE, 2018. We were able to establish a model for future service provision with potential for replication around the country. Collaboration with De Montfort University and use of undergraduate students enabled us to run groups without engaging additional staff from the department. We were able to use students as part of the workforce and provide them with an innovative placement where they were able to facilitate real positive change over a short space of time and develop important SLT knowledge and skills for their future careers.

Future:

The plan is to re-run the groups with implemented changes based on reflections from the pilot. We hope to use a wider variety of outcome measures to capture and evidence the positive changes that participants reported. The benefits of collaboration with DMU have been key to the success of running the pilot which is paramount in a climate of reducing resources.

References:

Braun M, et al (2010) Toward a Better Understanding of Psychological Well‐Being in Dementia Caregivers: The Link Between Marital Communication and Depression. Family Process. 49 (2) 185-203

Brydan, C. (2005) Dancing with Dementia. London. Jessica Kingsley Publishers.

Gallagher-Thompson D et al. (2012) International Perspectives on Nonpharmacological Best Practices for Dementia Family Caregivers: A Review. Clinical Gerontologist, 35. pp 316-355.

Spector A, et al (2003) Efficacy for an Evidenced Based Cognitive Stimulation Programme for People With Dementia: Randomised Control Trial. British Journal of Psychiatry. 183 pp.248-254

Volkmer, A., Spector, A., Warren, J. D., & Beeke, S. (2018). Speech and language therapy for primary progressive aphasia: referral patterns and barriers to service provision across the UK. Dementia, 1471301218797240.

All practicable steps: The forthcoming Mental Capacity CEN for SLTs

Many moons ago (five years to be more precise) I attended a study day for a group of speech and language therapists with a special interest in acquired neurological conditions. The theme of the day was the Mental Capacity Act and its relevance to the profession. It was such an interesting day, and I made connections with people with similar interest in this fascinating and important area and with whom I have maintained contact with ever since. Yet the discussions on this day were rather split. Many therapists at the event took the view that SLTs should not be advertising themselves as willing to assess people’s decision making capacity for fear of being flooded with an overwhelming number of referrals that we wouldn’t know how to cope with. Others felt quite the opposite, suggesting that supporting decision making and issues related to this should be part of our core business.

Since then, work around the implementation of the Mental Capacity Act in health and social care settings, the NICE guidelines and RCSLT guidance for example, has made it clear that all professionals need to understand the basic principles of the Mental Capacity Act. All professionals need to be aware that a person with an impairment of mind or brain may have difficulties in decision making and that should there be any evidence of this then an assessment of decision-making capacity may need to be undertaken. This assessment should only be undertaken if all reasonable steps to support decision making have been taken. And if they have been shown to lack capacity then a decision may be made in their best interests, depending on the decision at hand.

So what are speech and language therapists doing in clinical practice? There has been some data collected on the practices – a survey of SLTs across the UK was published last year (McCormick, Bose & Marinis, 2017, Aphasiology, 31(11), 1344-1358). This has collated some information on the roles that SLTs are taking (sometimes being assessor and decision-maker but often not being utilised perhaps because others don’t know about the breadth of our role) and the training that they are delivering to other professionals (mostly to allied health). That said there has been lots of innovative work done, and lots of work that needs to be done to develop practice further. Some SLTs are even specialising in Mental Capacity work both within and outside the NHS.

But a number of SLTs felt they needed a bit more support- from within the profession. A tweet set out by @jothespeechie illustrated that there was a lot of interest in such a group (over 100 people responded to this tweet). Amongst other things responses highlighted that SLTs would like:

  • To share practice from across the discipline
  • To share resources within the discipline and beyond
  • To spread the word about our role to other disciplines
  • To develop assessment practices and processes
  • To refine and define the role of the SLT in relation to mental capacity
  • To consider training- of new graduates and undergraduates in this area
  • To get regular updates on legislation and policy development
  • To influence research priorities in this area

And yesterday a group of SLTs gathered at UCL to put their minds together to get something off the ground. The team put together an application for RCSLT for the aptly named Mental Capacity CEN. We assigned a Chair (our fearless leader @jothespeechie), treasurer, secretary, membership secretary, social media secretary and study day organisers. We planned methods of disseminating information- look out for our forthcoming twitter handler, WordPress site, Instagram and Facebook pages. We have even started thinking about our forthcoming study days and have a list of ideas for potential presentations from existing committee members as well as individuals external to the group. We would like to host workshops and discussions. We are even planning to put together some work that might be published in the Bulletin magazine to disseminate anything we develop such as competencies or resources.

On a personal note I feel that the energy in the meeting was super exciting. It is important for us to have a voice in issues related to decision making and mental capacity. The legislation describes the functional test of decision making in relation to four domains- understanding, expression, retention and weighing up a decision. As a profession we have been studying at least 50% (more in many ways) for many many decades. We understand the subtleties of language and communication (even with individuals without communication difficulties) better than many. We are able to modify language to plan, accessible and inclusive communication. We can detect bias and inference. I feel that this is just the beginning of what we might be able to do for the people we serve (our patients) as well as for our colleagues!

So keep watch – we will be advertising our study days soon!