Learning Disability and Dementia: a case example
Using Talking Mats with Tony, a 53 year old man with learning disability and dementia. A guest blog by Rebecca Leighton Specialist Speech and Language Therapist and Consultant for elenbi-uk
“When I change I will be different”
Tony was referred to me for Speech and Language Therapy around 6 months after being diagnosed with mixed dementia. Dementia was having many effects on him but a key impact was communication difficulties: one of these difficulties was dysarthria (for him, this meant slow, slurred, effortful speech and difficulty maintaining enough breath support to finish his sentences) and another word-finding problems (difficulty remembering and producing the words he wanted to say – like the “tip of your tongue” phenomenon we all get from time to time, but occurring in most of Tony’s sentences). These two communication difficulties combined made talking very tiring and frustrating for him.
When I first met Tony, one of my aims was to find out what he wanted to achieve with Speech and Language Therapy. We discussed this but it was tiring for Tony and it became clear very quickly that using words alone was not helpful. It also became clear in that first session that although Tony was concerned about his speech, he was more concerned about his future and other areas of his life. He was worried about how he would enjoy life with dementia. He knew he would get worse and he wanted to know how he and his family would cope with that. Tony said “When I change I will be different. What will I do with myself?”
I introduced Talking Mats to Tony at our next session, suggesting that it would be a way of exploring what he was worried about in terms of his overall health and wellbeing and also what he might want from Speech and Language Therapy. We did four Mats over the course of two sessions:
Mat 1: Starter topic (food). Tony managed a three-point scale easily (“like” “dislike” and “not sure”) and told me “This is alright, its easy. I can talk if I want. But I don’t have to.”
Mat 2: “My worries”. Tony used a three point scale to indicate whether he was “not worried”, “a bit worried” or “very worried” about a range of aspects of his life and future. We found that Tony’s main worry was what he would do with his time as his dementia progressed.
Mat 3: “Activities with dementia” – a sub-mat based on Tony’s main worry identified in Mat 2. This was done jointly with his advisor, Sabira, from his local dementia support service, who planned the mat with me to ensure it covered all the options Tony had available to him locally. The mat revealed that Tony was already attending a well-being café but wanted to try other well-being cafes too, to meet more people. He was keen to try the singing group and also felt that his family needed support. Sabira commented that she thought Talking Mats should be used more with people with dementia and she intended to explore this within her own service.
Mat 4: “What I want help with from Speech and Language Therapy”. Again we used a three point scale, this time to indicate “yes”, “no” and “maybe” to possible goals for Tony. Options included assessment, therapy and advice. We chatted around each topic, giving Tony more information on each possibility and discussing if and how it could benefit him. Tony made informed choices around each option, and made the decision to start by creating a Life Story.
With Talking Mats, Tony has been able to give his full views on some very difficult topics for him. He has done so in a way which has reduced the demand on his speech, which made the discussion easier and less tiring for him. He has taken control of his Speech and Language Therapy care and has made informed decisions about his therapy goals. Perhaps more importantly he has taken control of his future and made informed choices about what he wants for himself and his family for the rest of his life.
Talking Mats could be used by many services for people with dementia. Imagine how empowered people with dementia would be, for example, if their social worker or dementia adviser were able to use Talking Mats with them to identify their needs and wishes and help them choose what they want for their present and future. What better way to involve people in their own care?
The only caveat? Get in there early. Empower people to tell their story while they are still able to use pictures and words to do so. Dementia can steal these skills, burdening families with making decisions on behalf of their loved ones. As a daughter, mother, wife and sister myself, I know I would feel much more at ease with making a decision for my relative with prior knowledge of what they themselves would have wanted. Talking Mats is one way of finding that out.