Stigma has always been associated with dementia, and whilst it’s true that some strides have been made in the last few years to combat this - not least thanks to the voices of those living with dementia including what’s been shared via DEEP networks - it is still prevalent and often most acutely felt by people from marginalised groups, including people with a learning disability and/or autistic people.
At MacIntyre we have always advocated for the immense value of the person, seeing the person not their diagnosis and providing the very best, side-by-side support. This has been driven by working closely with people who draw on our support who are living with dementia, including Rosie whose quote: “It’s not what you can’t do, it’s what you can do” really epitomises everything about our approach to learning disability and dementia support.
In all aspects of our approach we are guided by our DNA, which sums up our values and principles and keeps us true to what we say we will do and what we believe in. We know that a person with a learning disability is not always given the same opportunities as others, and if the person then develops dementia this can be even more acutely experienced. Negative assumptions can make a person's world feel small and make a person believe that they can't have hopes and dreams. We want to change this narrative for people with a learning disability and dementia, challenging stigma wherever we encounter it.
Astrid Ubas, our Learning Disability Nurse who is training to be an Admiral Nurse, says:
“Over my career in nursing I have seen some situations that were very sad, unfair and heart-breaking. It was not the dementia and what it did to the person that was the saddest element, it was the reaction of the people around the individual with dementia, including people who were professional carers and health workers.
As the American Dementia specialist Teepa Snow says: ‘Dementia does not rob someone of their dignity; it is our reaction to them that does’.”
The challenges for a person with a learning disability who is developing dementia
One element of stigma that is still prevalent across society is the idea that people only develop dementia when they are older. We know that within the UK it’s estimated that 70,800 people are living with young onset dementia (symptom onset before 65 years old), and that 50% of people with Down’s syndrome will develop dementia. Indeed, by the age of 40, most people with Down’s syndrome will have begun to develop signs of Alzheimer's disease in the brain.
Many of the people who draw on our support develop dementia before 65 years old, and our staff teams are reminded to be vigilant for changes in a person - as mapped by our health recording - that suggest an individual could be developing dementia.
Obtaining a diagnosis can be difficult, often due to dementia in people with a learning disability still being poorly understood amongst health care professionals. Diagnostic overshadowing (where symptoms are attributed to a person’s learning disability, behaviour or another condition, like depression) is still common, but the message we constantly share with our staff teams is regardless of obtaining a diagnosis, if we are seeing changes that we believe are due to dementia, implementing support that follows our Dementia Pathway is vital to ensure we are responding in the most appropriate ways to the person and supporting them to maintain their independence, choice and control.
Living with dementia when you have a learning disability
Despite everything we aim to achieve within MacIntyre, people who draw on our support also need to access external services, including healthcare. Along with stigma, attitudes to dementia are often very dismissive of the person, individuals can be unfairly labelled, assumptions are made about what a person can or can’t do (particularly around excluding the person from decision making, often because it’s felt it will take too long) and the perception can be that the person has little value.
We’ve seen this recently whilst supporting a person in hospital. Being in A&E can often be a very distressing experience for the people who draw on our support, and long trolley waits and going without basic life-sustaining support like free access to water has profound impacts which we have witnessed.
We’ve also seen how a person can be excluded, with an injection being attempted at a mealtime with no consultation or discussion with the person, and how many assumptions are made, including that a hot drink needs to be in a plastic sippy cup rather than a mug because it’s believed the person can’t drink from an open cup.
In a particularly telling exchange on a ward, our staff member asked the person who draws on our support:
"Why are you wearing an incontinence pad?"
The answer from the person who draws on our support (which was completely out-of-character and clearly repetition of what had been said to them):
"It's easier, no one needs to take me to the toilet."
What needs to change?
These incorrect judgements and assumptions are rooted both in stigma and prevailing attitudes towards people with dementia, and are also related to a lack of meaningful education in dementia and how it can affect a person.
From our years of providing support for people with a learning disability and dementia we’ve learnt a huge amount, and some top tips we’d encourage everyone to implement to ensure a person with dementia can flourish would include:
- Don’t try to overcompensate and do everything for a person. You may feel you’re doing your best for the person but this can have a detrimental effect on the person and make them unnecessarily dependent.
- Have an open mind, be adaptable and be prepared that the support you provide may need to change on a daily basis. At times this can feel unpredictable, but it’s vital to live in the person’s reality and respond to what they need in each moment.
- Read support/care plans and one page profiles of the person you are supporting. This will help you understand what they can do and what they need side-by-side support with.
- Take your time to allow a person to be as independent as possible with a task. Stand back and provide support only when needed and never rush the person.
- Create life story resources that bring the person’s experiences to life, including showing what they’ve achieved and are proud of.
- Advocate on the person’s behalf with team members and external professionals. This helps to promote a shift in culture, combats stigma and enables us to be ambitious for the person.
- Revisit and reflect on your approach, recognising when something went wrong and what you’d change next time.
- If you are seeing changes in a person's behaviour, reach out and get support and advice on why that could be. The person isn't being awkward or intentionally acting this way. As a health team we work closely with our PBS colleagues and are currently planning our next Dementia Special Interest Group (DSIG) together that will focus on the topic of: ‘Understanding behavioural changes due to dementia’. This is a free-to-attend virtual event, open to all, that will provide three hours of education and inspiration. You can registered for your ticket here.
- Be kind. We can never be certain of what the person is experiencing with their dementia, and kindness and compassion cost nothing.
