Beth Britton on Learning Disabilities and Dementia

Monday 9 April 2018

What experience do you have working with people who have dementia from seldom heard groups?

bethPrimarily my experience is from working with people who have a learning disability and dementia. I’ve worked with one of my consultancy clients and fellow DAA members, MacIntyre, since 2013, and my work with them has been entirely focused on supporting people with a learning disability and dementia.

I’m extremely proud to work with MacIntyre – I genuinely believe they are the UK leaders in this type of specialist provision, and the Department of Health Innovation, Excellence and Strategic Development Fund grant they received in 2016 to accelerate this work is testimony to that.

What issues have you come across around learning disabilities and dementia while you’ve been working in this area? Please include the challenges faced with accessing help, and post diagnosis support

Initially MacIntyre engaged me because they wanted to increase their staff understanding of dementia. This, for me, is one of the biggest challenges learning disability organisations are facing – upskilling their staff in an area of care and support that hasn’t traditionally been associated with supporting people who have a learning disability.

Once social care staff are upskilled, the most difficult challenge they then face is in accessing healthcare when they suspect a person may be developing dementia, and should a diagnosis be made, then accessing appropriate post-diagnostic support. Many people with a learning disability are diagnosed very late, or not at all, and their dementia often progresses quite rapidly, giving the person, their family and staff little time to adjust.

So many people with a learning disability who are developing dementia have their symptoms written off as learning disability ‘behaviours’ rather than being properly investigated as they would be for a person without a learning disability. And in terms of post-diagnosis, many local authorities are very keen to move a person with a learning disability and dementia into traditional aged-care services populated by much older people, rather than trying to seek ways to keep the person within supported living services or similar small-scale, specialist LD provision.

How have your experiences made you feel about the experiences of people living with dementia from seldom heard groups?

I think there are hugely significant challenges for anyone from a seldom heard group to access the health and social care services they need, which is why this campaign from DAA is so important. Highlighting the difficulties people are facing is the first step towards changing services, and I hope all DAA members will make a commitment to listening to these groups and making the changes that they say they need in order to live well with dementia.

Can you tell me any stories about how services have impacted on a person living with dementia from seldom heard groups? (Good or bad)

In terms of positive stories, I have been honoured to support staff caring for a gentleman with a learning disability and dementia though to the end of his life to experience what I would term ‘a good death’. Staff in this gentleman’s service were exceptionally dedicated to providing everything this gentleman needed, and worked seamlessly with his family and healthcare professionals to ensure the last few months of his life were the best they could possibly be.

In terms of negative stories, I’ve supported staff as they have struggled to get past GP’s to access further diagnostic support for a person with a learning disability who they suspect may have dementia, and instances where learning disability healthcare professionals have been a barrier to the person getting the care and support they needed for their dementia, leading to various difficulties, including problems around poly pharmacy.

What kind of services would you like to see more of, and would be appropriate for people living with dementia who have learning disabilities to access?

Small-scale, specialist residential and lifelong learning services that are staffed by people with a comprehensive knowledge of learning disabilities and dementia should be available to everyone. For me these would be services with a strong focus on person-centred care, life story work, wellbeing, nutrition and hydration, dignity and respect, promoting independence, dementia friendly environments and end of life care.

When I read DAA’s Learning Disability Roundtable briefing document, I was struck by the call in that for services to have access to, “Someone who understands the impact of both dementia and learning disabilities”. I feel very privileged that thanks to my 4 years working with MacIntyre that I am one of those people. Working with DAA on the seldom heard groups campaign has been another really positive way to share my knowledge, so thank you DAA!

What would be your recommendations to DAA members to make accessing support easier for people living with dementia who have learning disabilities?

For members who work in health or social care, I would recommend upskilling your staff to understand the challenges people with a learning disability and dementia face, including problems like diagnostic overshadowing. Also, if you work in a specialist dementia service, is your service accessible to people with a learning disability or not, and if not, why not? Also think about ways in which you can share your expertise of dementia with people working in learning disability services – collaboration is so important, and can lead to really beneficial mutual learning opportunities. I know I have learnt a huge amount from my work with MacIntyre, and I hope they would also say likewise from their association with me.

For members working in other areas of society, making your services dementia friendly, accessible and welcoming is so important. Think about the ways in which you communicate – do you have ‘easy read’ documents available? Also, commit to busting stigma; dementia doesn’t just affect older people, and dementia rarely exists alone - people with a learning disability and dementia are likely to be younger and have multiple health problems. Don’t create more barriers for them. Commit to breaking down barriers for the good of everyone.