MacIntyre’s Admiral Nurse in-training, shares her thoughts on learning disability and dementia
Following our World Alzheimer’s Month exploration of the stigma and discrimination people with a learning disability can face when developing and living with dementia, we’ve spoken to our learning disability nurse Astrid - who’s training to be a dementia-specialist Admiral Nurse - about her experiences during her career
Astrid is instrumental to our work within MacIntyre’s Health Team. Astrid works closely with us and our services to identify individuals in need of specialist nursing intervention, and amongst the people who draw on our support, those with dementia are regularly seen and supported by Astrid.
At our recent Dementia Special Interest Group, Astrid updated us on her work, explaining that she doesn’t wait for referrals from MacIntyre teams but instead operates an open-door, continual conversation approach that ensures the people who draw on our support and our staff have timely, expert nursing input.
Astrid has long had an affinity for working with people with a learning disability and dementia, but like many people working in this area knows only too well the historical stigma that has been attached to developing dementia that we touched on during our World Alzheimer’s Month blog in September entitled, ‘Attitudes to dementia and learning disability.’
Astrid told us in this blog:
“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’.”
We caught up with Astrid to find out more about her past experiences and her aspirations as a trainee Admiral Nurse.
Astrid, what have been your experiences of supporting people with dementia?
“Over the last 15 years as a learning disability nurse, I have met many people who are living with dementia. All those people were individuals with their own history, values, and circumstances - all of them were unique. Of course the dementia had a big impact on their lives and the lives of the people close to them. Some people coped very beautifully, some people struggled.”
We know that people with a learning disability and dementia have often faced barriers and unequal access to services, support or knowledge. Have you seen this in your career?
“I remember an 82 year old lady being left in A & E on Christmas Eve by support staff who left a note saying: ‘We cannot meet her care needs any longer’. When I rang the care home to get some information and ask if there was something from home I could pick up for this lady (a photo, a blanket, a toy, anything familiar from home) the manager told me: ‘There’s nothing like that there, just her bed and clothes’. When I asked about the lady’s history, the only thing they remembered was that she had a sister. When I contacted the sister, we spent hours talking about their life and the terrible gaps in the health and social care system that had left this lady undiagnosed, unsupported and robbed of respect and human rights.
Another lady I supported had Down's syndrome and Alzheimer's disease. Her family, support staff and Community Learning Disability Team experts all refused to tell her of her diagnosis, but that did not mean that the lady did not know something was wrong, just that she was not supported. This lady told me of her confusion and loneliness. She would say: ‘I don’t know what’s going on - am I crazy? It feels like the front of my mind is going blank. They say everyone forgets things sometimes and not to worry, but I do worry.’”
Have you ever had a breakthrough moment with someone you’ve supported with a learning disability and dementia that you’re proud of?
“I supported a gentleman who for most of his life had had a very, very limited diet. He had lived for 55 years on tea, Jaffa cakes and hot cross buns, and had had a lot of arguments with the people trying to support him. When I tried to talk with him or show him anything else like fruit or vegetables, he turned his back and walked off. We focused on other things he liked and tried to support him with those instead. Three years later, when his dementia had advanced, I remember having a royal lunch with him, including fresh baked salmon, mashed potatoes, broccoli and carrots, with iIce cream with jaffa cakes for dessert! There were no more arguments, and a lot of smiles instead.”
What would be your message for the future of learning disability and dementia support?
“There is no doubt that dementia is a complex condition that will affect lives in many different ways. I always try to learn more about what could help, but not all of it is complex. Perhaps the most important thing to remember is: ‘People will forget what you said, people will forget what you did. But they will never forget how you made them feel’. (Maya Angelou).”
Many thanks for sharing your experiences with us Astrid. You are a valued member of the Health Team and MacIntyre appreciate all you do for the people who draw on our support and our staff teams.
