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.
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.
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.
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.
|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
|“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.
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.
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.