NHS 111 Team Manager Scott Burke has dedicated nearly a decade to helping the North West community, providing invaluable non-urgent medical advice. However, many are unaware that while he was helping strangers on the other end of the line, he was also caring for his grandparents, both of whom had dementia.
Today, Scott shares his personal journey with this devastating disease, which affects one in three people*, and how he and his family came together to care for their loved ones.
Scott was fortunate to have a close relationship with his grandparents, affectionately known as ‘Nin and Gramps,’ who played a significant role in his upbringing after their early retirement. Reflecting on his childhood, Scott recalls, “Some of my most cherished memories are from the time I spent at their farm. My nan was the ever-dutiful hostess, while my grandad worked on the farm, tending to his racing pigeons or just sitting on his chair reading a paper. He was the type of man who would say very little, but when he did it was a quick comment that would have us all laughing. He also liked a good argument with authority, especially when he knew he was right!
“My nan was the one who did most of the work though, tending to the other animals that we had – horses, greyhounds and chickens – while looking after the rest of the family. You could go to my nan for anything, and she would always know just the right thing to say or do usually followed by an offer of a sandwich or a cup of tea.”
Despite their close bond, Scott didn’t initially recognise the signs of dementia in his nan. He said, “For all the time I knew my nan, she was always forgetful, losing her glasses, cups of tea etc. It was my mum that said that she had gotten worse with her forgetfulness. In 2013, she was diagnosed with vascular dementia, and as time passed, her behaviour began to change. She would sometimes make sharp remarks—things she wouldn’t have said before, and things that could be quite offensive if you didn’t know about her diagnosis. I still remember when she was reading a card from my cousin, who was getting married. The card said, ‘Please don’t buy us gifts; if you wish to give us anything, please make it money so we can go on a wonderful honeymoon.’ Normally my nan would’ve given the money, but she said, “Well she can think again if she thinks she is getting a penny out of me and Graham.”
Tragically, two years later, Scott’s grandad was also diagnosed with dementia following an accident at home. He added, “My grandad’s diagnosis was more of a shock. Even into his late seventies, he was still outside chopping wood and pottering around the farm. Sadly, he had an accident, fell backwards and hit his head. The doctor at the hospital just kept advising, “This is his new cognitive baseline.” He did eventually get discharged and we noticed a quicker decline in his condition, and we were told he had mixed dementia. The most difficult part with my grandad was when he went into “delirium” which is commonly known as sundowning. He would become hostile, and aggressive and constantly try to escape his home of 30+ years saying he had been kidnapped and we were trying to poison him.”
With both grandparents needing constant care, Scott and his family rallied together, adjusting to their new reality. He said, “We have always been a close family, so we just adapted. We supported each other as they were both our main priority. I provided daily care for two to three years, before we finally managed to get support from local social services and personal assistants. Before this, I would take my nan shopping, to the bank and other errands before I went on shift as a health advisor. My managers were supportive in accepting my flexible working application to work late shifts to accommodate the care I was giving. I was supported by my mum who cared for them both through the night and my aunt who provided care from the afternoon when I needed to go to work. Eventually, my mum took a redundancy and retirement package, so she was able to provide more care.”
Despite his resilience, the emotional toll of caring for his grandparents affected Scott’s mental health. He explained, “We have always been a resilient family, but I did start suffering with my mental health, more due to trying to manage working, caring and any type of social life. I still recall a conversation I had with my gramps when my nan was first diagnosed saying to him, “I don’t want her to forget me” and he said “me and your nan will never forget you. We might not be able to say it further down the line, but you are always going to be a part of us.”
As their conditions progressed, both of Scott’s grandparents required more intensive care. Scott said, “My nan had several mini-strokes, which progressed her condition so that we had to physically feed her and thicken her drinks and provide hygiene and toilet care. She also lost her speech. She would sleep a lot and whilst sleeping we would know she was back at work as a seamstress, as her arms would be going up as if getting cotton ready to stitch. My grandad was never one to express his love and affection to anyone other than my nan, but as time went on, he did become upset and tell us all how much he loved us.”
Three years after Scott’s grandad was diagnosed, he passed away. Two years later, Scott’s nan also passed. To remember his grandparents, Scott had his grandad’s thumbprint tattooed on him. He also had some of his nan’s favourite things tattooed – her favourite animal an owl and a dreamcatcher to capture her love for the Native Americans – in her favourite colour turquoise.
Before his grandparents were diagnosed, Scott admits he didn’t know much about dementia. He explained, “I was aware of it being related to memory, but not how difficult it would be to watch your loved ones go through it, losing their memory and forgetting who you and your family are. For anyone whose loved one has just been diagnosed, I would say, get support from family members and speak to social services to see what help is available. There are also some good online resources. Don’t argue, just agree and accept. White lies are okay and don’t mention someone who has already passed as the grief is re-lived for the person with dementia. Most importantly, keep the memories of them, even with the dementia, because in the early stages, you will laugh more than you will cry. Take photos, and videos and make more memories with them. Don’t treat them any differently—they’re still the same person; they just can’t show it anymore.”