MacIntyre is a national charity that has been supporting people with learning disabilities for over 50 years. With research indicating that people with a learning disability are more likely to develop dementia, and earlier, there is a challenge to understand how best to provide effective care. We talked to Director of Adult Services Emma Killick about the importance of healthcare organisations and charities working together, rather than in specialist silos, to improve diagnosis and support for those living with learning disabilities and dementia.
What is MacIntyre’s aim in supporting people with learning disabilities?
MacIntyre is a voluntary sector organisation set up in the 1960s by Kenneth Newton Wright, who had a son with Down’s Syndrome. This was a time when people with learning disabilities were regarded as “ineducable” which I think is about the most damning thing you can say of any human being, and Ken Newton Wright was fundamentally opposed to that concept.
He believed that everybody could and had the right to learn, so the charity started life as a school. Over time our remit expanded to adults as well – but the essence that everybody should be supported to be all that they can be has always remained.
How has MacIntyre’s work expanded to meet challenges of dementia in those with learning disabilities?
People’s life expectancy, including those with a learning disability, is a lot longer now than it used to be, but along with that comes challenges regarding health issues – of which dementia is just one.
It wasn’t something that we or indeed any other learning disability focused provider had ever really thought about, because it had not been an issue.
We support about 1000 adults across England and Wales, and about six years ago it started to come to my attention that there were people around the country asking for help because somebody that they were working with or knew was either receiving a diagnosis or suspected to be on the dementia pathway.
Local managers were saying, “We don’t really know what to do here” and would ask health professionals, “Can you help us?” Invariably, those professionals would turn around and say, “I’m sorry, but we don’t know anything about people with a learning disability so we don’t feel that we can help you.”
It became more and more apparent that we’d got ourselves into such a silo mentality that vulnerable people were falling through the gaps, and we had to do something about that.
What is different about dementia in someone with a learning disability?
One of the main challenges is actually getting a diagnosis. Typically one of the first things that people will notice is that somebody is forgetful, or getting confused. Or perhaps the person themselves will have insight, whether they admit it to other people or not, that something’s not right.
Those things are difficult with someone with a cognitive learning disability because subtle memory loss and confusion isn’t so apparent – and somebody might not necessarily have the ability to communicate that they forget things.
So, the things that need to get picked up on with a person with a learning disability and dementia are much more around behavioural or functional changes – in that somebody is no longer able to do something. This means though that their dementia has often progressed a lot further by the time it’s picked up.
What is important in assessing those with learning disabilities for dementia?
What’s key is that there is a baseline of what is normal for someone, so that changes can be plotted over time. If somebody is living at home with family, there’s a consistency of knowing how somebody used to be and how they are now.
However, if you live with somebody, in any setting, you do subtly adjust to changes – and it might only be when something happens, or somebody comes to visit and makes a comment, that you think, “This is different.”
And of course, we have a high turnover of staff in the care sector, therefore often that history is lost unless it is very clearly recorded somewhere.
You have to understand why a baseline is important and be able to track whether someone’s moved away from that. Otherwise, GPs and memory services are not going to be able to help if you can’t say, “This is what this person was doing six months ago, a year ago, two years ago. And this is what they’re doing now.
What kind of support does a person with a learning disability and dementia need?
Our staff have to slightly flip their way of thinking because what they will usually be looking to do is to increase somebody’s independence so they can take as much control as they can over their life.
When somebody has dementia there’s deterioration, and sometimes it’s fairly slow and gradual, and sometimes it can be like somebody’s fallen off a cliff edge. All of a sudden, they’ve lost skills and abilities that they had, and everybody has to adjust to a new reality.
Our staff have to shift towards less facilitative, and more caring support in that sense, but in a way that still enables someone to do as much as they can.
Therefore, we have to work with staff on things like using pictures and symbols to show what’s inside that cupboard or behind that door. The member of staff might say, “But the person knows what’s behind that door.” However, they might not know what’s behind the door next month or in six months, and therefore, need to learn that the photograph represents what’s behind the door while they are still able to.
That can be hard for staff who can feel that it’s disrespectful. But we have to be able to positively plan for the future even when that future might mean that somebody’s losing certain skills.
It means getting over some of the barriers and myths. I think my proudest achievement is that dementia isn’t a taboo word within MacIntyre, whereas before it was something that people were concerned and anxious about, and didn’t really want to talk about.
What percentage of the people that you help have a dementia aspect to it?
Because of the age of the charity, we have a bulge in our demographic of people in their 40s and 50s, who are at risk. We know this because we know people with a learning disability are more likely to develop dementia and to develop it earlier. The relationship and correlation between having Downs Syndrome and risk of developing dementia are well-documented.
The number of people who actually have a diagnosis is slowly increasing, but it is still a tiny number, the number of people with suspected dementia is higher than that, but the amount in the at-risk category is quite huge. I would say it’s probably about a third to half of the adults that we support.
We’re trying to raise awareness across the board that from 30 onwards, you really need to be thinking about this baseline assessment, especially if you’re supporting somebody who has Downs Syndrome.
When someone has a learning disability, will they always understand what a dementia diagnosis means?
There’s a spectrum when we talk about people with a learning disability from people with profound and complex needs, who are not going to understand the concept of dementia – to others who actually have quite a mild learning disability, and do understand if we put it in a way that rings true.
These conversations have to happen on some level though. We can’t ignore this because people notice things. Whatever their level of learning disability, people are attuned to changes within themselves, and in other people.
We’ve created easy read materials as has the Alzheimer’s Society, but the key will be how it’s used. It makes so much more sense when somebody else talks you through it, and diagrams and photographs are important.
And if you live with somebody and their behaviour is changing, the responses are going to be those you would expect if you don’t have an understanding of why they’re changing – perhaps upset or annoyed that they’re no longer doing their share of the housework. Or you might be embarrassed by some of the things that they do or say, so we have to talk about those too.
What would you like to see in the future?
I’d like to see us continue to develop our relationships with organisations whose primary focus is around supporting older people and those living with dementia because working together is absolutely key.
The country cannot afford to continue to work in silos. So, while there’s always going to be something beneficial in the specialisation around supporting people with a learning disability, mental health issues or older people, there is valuable cross-learning and sharing that can be done.
That should mean that somebody with a learning disability gets an accurate, timely diagnosis and will then be welcomed in dementia services because people aren’t going to say, “We don’t know anything about that. I’m sorry, we can’t help you.”
If you start excluding particular groups of people because you don’t think that you can meet their needs, then that’s a dangerous path to go down. There are lots of groups of people where professionals could say, “Oh, that’s new to me. I don’t feel comfortable supporting that.” We can’t afford to do that, never mind the moral argument about whether it’s okay or not.
This interview was part of a series brought to you by Elder, the company who can take care of all your loved one’s live-in care costs. If you are looking for a live-in carer in the UK, Elder can help.
To help MacIntyre provide support to those with learning disabilites, you can donate HERE.
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