Representing the Underrepresented: Empowering Conversations About Learning Disabilities and Dementia
Why is the area of learning disabilities and dementia of interest for you?
In the 1990s I was working with people who had a learning disability, mostly in adult education and self-advocacy groups. I started working for the local branch of Down’s Syndrome Scotland and then moved on to be chief executive, so I was there for almost ten years.
During that ten years we saw big changes for people of all ages with Down’s Syndrome, but especially regarding life expectancy - and because of that, we started to learn more about the increased risk of early onset dementia for those with Down’s syndrome. At that time there was nothing we could give families in terms of information that was accessible – or people with Down’s Syndrome themselves.
So I took myself back to university in 2000 to do a master’s in dementia studies so I could do something in the organisation. I was able to tailor my assessments around learning disability, and then develop accessible resources from those assessments - which the organisation is still using today.
I then did a part-time PhD with people who had Down’s Syndrome and dementia, and moved into academia, where I am now - but I’m still very focused on making research findings accessible.
What are the most significant challenges in supporting someone with a learning disability who has dementia?
Getting a diagnosis in the first place is difficult because standard assessment tools are not appropriate for most people with a learning disability.
They require an element of cognitive ability, even before dementia changes might be taking effect. So it’s recommended that there’s a baseline assessment for people with Down’s Syndrome from age 30, so that future changes can be measured against that baseline.
A baseline is a person’s typical daily functioning so that any changes can be picked up. Because of the high staff turnover in social care facilities, it’s often difficult for carers to know if a behaviour is new, or if it’s always been like that.
If there’s a recorded baseline assessment, at least there’s something that says what this person’s typical functioning was when they were 30, so if there are differences by the time they are 40, then we know something is going on.
Importantly though, it might not be dementia – there’s a fair bit of misdiagnosis as well. We see this now that there is more awareness of the link between Down’s Syndrome and dementia; there are assumptions made when actually the changes may not be due to dementia at all. There are a lot of treatable conditions that come with ageing in people with a learning disability, just as there are for all of us! But they are more often overlooked in people with a learning disability.
Appropriate support is a challenge as well, and that will vary depending on where someone lives. Families, in particular, can have situations where both the person with Down’s Syndrome and the parent have dementia. Often that is an equally dependent caring relationship until it reaches crisis, and that’s something that we’re seeing more often as well.
Similarly, in social care settings, staff are often not trained to support someone with a learning disability and dementia; consequently, training in the field has also remained a constant part of my work with a new course developed for 2018 based on my current research findings.
How do you communicate a dementia diagnosis to someone with a learning disability and on what level?
One of the findings that came out of my PhD study was that people with learning disabilities were often not told that they had dementia. Not everyone with a learning disability will understand the word ‘dementia’, so it is not always appropriate to use, but most people still know that something isn’t right or things are changing for them.
As for all of us, not having answers can be confusing and distressing. I would typically hear the same reasons when I asked why conversations about a diagnosis didn’t happen with people who had a learning disability. “The person might get upset”– which can sometimes be more about us than the person we are supporting - or, typically, “they wouldn’t understand”.
How does Jenny’s Diary empower conversations about learning disabilities and dementia?
This lack of communication is where Jenny’s Diary stemmed from. Jenny’s Diary is a free to download booklet and a set of postcards aimed at supporting conversations about living with dementia with people who have a learning disability- and was developed with Irene Tuffrey-Wijne and Sam Quinn. It’s about recognising that we need to adapt how we talk about dementia, which might mean not using the word ‘dementia’ at all.
Jenny’s Diary is about providing support wherever the person is at, whatever their framework of understanding is at that moment. It’s not planning ahead for, “In a week this will happen”, because very often, people with a learning disability live in the moment – it needs to be an explanation of what is happening now.
Using the terminology that someone uses is important. For example, in Jenny’s Diary, someone says, “My head’s not right”. And if that’s the terminology the person will understand and be able to relate to, then that’s the best language to use.
Many people with a learning disability know more about dementia than we give them credit for because of family experiences, so it’s about finding out the level of understanding and working with the person at that level using terms, pictures, models and diagrams that are appropriate for them.
Even for the person themselves, things will change. It’s vital that this isn’t a one-off conversation but something that’s reassessed on a regular basis.
Do learning disability and dementia services need to start working more collaboratively?
We do still see silos, and there’s still a feeling, certainly among learning disability services, that dementia is very different. And yes, there are some differences about dementia in people with a learning disability, but many of the supports or strategies are similar and focus on the needs of the person and their family.
People with learning disabilities tend to be underrepresented in services such as memory clinics or hospices, and we don’t see the overlap and the learning from each other that could be happening.
That’s where the training involving all sectors is so valuable, so that staff can see where they can share, and that things are not as different as they perhaps think. I have delivered a ‘train the trainer’ course for many years in an attempt to cascade information throughout a range of health, social care and third sector organisations.
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Do staff sometimes struggle to understand the complex set of needs, and was this the reason for developing Supporting Derek?
When I started delivering training around 2010, I needed to use generic dementia resources. There were some good resources around, but they didn’t include people with a learning disability - and staff understandably said, “Well, that’s all well and good, but how is that relevant for our work?”
That was the trigger to create Supporting Derek, the first dementia training resource specific to people with learning disability. The pack, published by the Joseph Rowntree Foundation, includes a DVD and training materials and covers many of the key issues related to diagnosing and responding to dementia in people with learning difficulties.
I co-wrote the text with Diana Kerr and Heather Wilkinson and worked with a drama group and the television company Nine Lives Media, to produce the DVD.
Was it important to have actors with learning disabilities?
Yes, absolutely. That’s what was missing from all the resources that were available. And they wanted to use their real names, so Derek has Down’s Syndrome, and he plays the part of someone with dementia, living in shared accommodation with Peter, who also has a learning disability.
It’s about what happens in a typical day for them and how dementia impacts on them and their friendship. In advance of the filming, I met regularly with Derek and Peter, who played the lead roles, to talk through what dementia meant and the implications for the characters they portrayed.
Supporting Derek is being updated this year and will have additional training resources included as well as updated information.
Your research is on non-pharmacological support for people with learning disabilities and dementia – what are key things you have discovered so far?
Non-drug support is something that doesn’t have a substantial evidence base yet among people with dementia generally - and there certainly isn’t the evidence to show how interventions such as reminiscence, music playlists, or environmental changes have been implemented for people with a learning disability.
Alongside Research Fellow Kate Mattheys, and co-researchers with a learning disability, we are using a goal setting tool to identify, with the participant who has dementia, interventions that are appropriate for each individual and monitoring their effectiveness.
People with learning disabilities face massive inequalities in healthcare generally, where their needs are overlooked not just in relation to dementia, but they are also often on many different types of medication - and that was apparent early in the study.
We had to request medication reviews for some participants because staff were putting behavioural changes down to dementia rather than recognising the impact of the combination of medication prescribed.
We also saw that some of the interventions available rely on internet access, but it quickly became apparent that many people with a learning disability are still digitally excluded which meant that some of the planned interventions had to be revised.
Overall, we have a long way to go, and the voice of people with a learning disability and dementia is still underrepresented when we look at national dementia plans and strategies, and the equivalent in learning disability.
However, I see much more awareness of issues affecting people with a learning disability and a willingness to ensure support services meet the changing needs as people with Down’s syndrome live to a much older age – which, after all, should be something that we are celebrating.
by Anna, Features Editor
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