Watching my dad’s Alzheimer’s progress inspired me to help others

Sarah's father was diagnosed with Alzheimer's disease, the most common form of dementia, a progressive terminal illness affecting memory and other cognitive abilities - Lorne Campbell

Sarah’s father was diagnosed with Alzheimer’s disease, the most common form of dementia, a progressive terminal illness affecting memory and other cognitive abilities – Lorne Campbell

It was a flying duck on the side of a house that first alerted Sarah Harrison that something was wrong with her father, David. “I was on holiday with my parents and children on the Isle of Wight in 2014,” says Sarah, 51, an NHS administrator.

“We were having lunch outside when the poor thing hit the wall. Luckily, he was just a little stunned and eventually flew off, but this little drama has become a favorite holiday anecdote.

Sarah says alarm bells rang when David, then 74, could not remember the incident. “We were walking in the park a few months later and he asked me if I had ever been to the Isle of Wight. He had absolutely no memory of the party, or of the poor duckling. I knew deep down what it was, I desperately hoped I was wrong.

Sarah’s father was later diagnosed with Alzheimer’s disease, the most common form of dementia, a progressive terminal illness affecting memory and other cognitive abilities.

“Dad’s symptoms were typical,” Sarah says. “I remember him confusing day and night, once insisting on going to bed at 3 p.m. in the afternoon, and getting upset if mum didn’t join him. He became anxious and withdrawn, the opposite of his outgoing nature,” Sarah recalls. “He got lost on a beloved walk and knocked himself into a tree, which was completely irrelevant.”

The Alzheimer’s Society says there are over a million people in the UK with the disease, and that figure is expected to rise to two million by 2051. The cause is not known, but experts believe that genetics and lifestyle factors such as obesity, smoking, diabetes and high cholesterol mean that ‘plaques’ build up in the brain and cause tissue death.

Sarah with her father on her wedding day in 2003 - Lorne Campbell

Sarah with her father on her wedding day in 2003 – Lorne Campbell

“Now looking back, I think Dad’s Alzheimer’s started in his early 60s,” Sarah says. “But he had become very good at hiding it. He took early retirement from his job as an electrician – a surprise at the time, as he had planned to continue, but I think he couldn’t cope with the paperwork. He started repeating old stories over and over again. I suspect he knew something was wrong because he gradually became quieter, not wanting to make mistakes.

Growing up, Sarah adored her father – a modest, kind man who loved to make others laugh. “He was always joking and being silly. That’s what I missed when he withdrew into himself.

Sarah’s mother, Liz, a retired pediatric nurse, eventually took David to the GP in 2015. He was referred to a memory clinic where, weeks later, a diagnosis of Alzheimer’s disease was diagnosed. been confirmed.

“We thought the services were going to step in and tell us what to do,” says Sarah. “But they didn’t. Although Alzheimer’s disease is a terminal disease, unlike cancer, there is no real plan of care. It was as if we were left behind. There is support, but from a bewildering web of different organizations that never quite come together. We learned of a free respite service, but after endless phone calls, we discovered that it was not available in our area. And we weren’t told about a free six-week course for Alzheimer’s caregivers until three years after his diagnosis and a year before his death – too little, too late.

Sarah acknowledges that they were lucky in many ways. She and her mother were able to care for David at home and Sarah lived nearby. “I used to go there before work at 8 a.m. to help get dad out of bed. I put him in a wheelchair and took him to the toilet. Some days he just couldn’t move his arms and legs, so washing and dressing him took forever.

“I came to feed him with a spoon, watching him like a hawk, terrified that he would choke because he had forgotten how to swallow. At night, I came back to put him to bed. Dad, God bless him, sometimes objected to being moved, or he just got angry, and we didn’t really know why.

Vacationing in France in the late 1980s - Lorne Campbell

Vacationing in France in the late 1980s – Lorne Campbell

Sarah says that despite this, the practicality was still relatively easy compared to the emotional toll when the disease set in. “Watching my father slowly disappear was the hardest part. I felt so miserable, desperate for him to crack a joke or wink – just show me a glimmer of his old self.

In the early stages of dementia, there were support groups, cafes, choirs and activities to fill the days. David particularly loved to sing. But, Sarah says, as the disease progressed over her final 12 months, her father could no longer handle these outings. “He couldn’t leave the house and we couldn’t leave him – he got upset and, frankly, it wasn’t safe.”

Sarah admits there has been very little respite, especially for her mother. “Dad couldn’t read or do puzzles or even argue. He sat, staring. We were completely lost as to how to keep him happy. We couldn’t even turn on the TV because he didn’t understand.

A little-known fact about dementia, according to research from Iceland, is that as the disease progresses, it can be very difficult for people to watch normal television. Busy patterns, muddy colors, fast-talking presenters, storylines in movies and soap operas can all get too confusing and difficult to see.

“Like most people, Dad loved watching TV,” Sarah says. “Now he couldn’t even keep up with his favorite movies. It broke my heart. I assumed there would be DVDs for later stages of the disease, but couldn’t find anything. There were a few nostalgic music CDs, but nothing visual. I was amazed.

“I tried children’s television, but it felt demeaning and didn’t reflect his adult experience. I just wanted to bring him joy, see him laugh again and give mum a much needed break.

Sarah as a child in 1973 with her father and mother, Liz - Lorne Campbell

Sarah as a child in 1973 with her father and mother, Liz – Lorne Campbell

Sarah spoke to other caregivers in support groups and found they had the exact same issues. She also discovered that many Alzheimer’s patients were drawn to the same things as her father: children, animals and nature.

“A tentative idea started forming in my head about making a movie with all of these things in it,” Sarah says. “A sweet and dignified adult program, without unnecessary details or dialogue, without plot and on songs that this generation loves and recognizes.”

Sarah contacted a TV director friend to help develop it. “We did months of research on what to include and spoke to Alzheimer’s experts,” says Sarah.

“We shot babies, animals, well-known landmarks, nostalgic scenes and nature against plain backgrounds, using bright, contrasting primary colors (Alzheimer’s disease can distort vision) and put it to well-known music. We made each clip about 30 seconds to two minutes long for short attention spans and left out busy patterns and shadows, which can be confusing and hard to see. Three years later, Recognii was launched.

The DVD recently won an Excellence and Innovation award as the UK’s first therapeutic entertainment film for advanced dementia.

This success was bittersweet for Sarah. “Unfortunately Dad was only able to watch the first pilot releases before he died in 2019, but his joyful reaction meant everything to me. He came to life when I showed him the clips. I still miss him every day, but I like to think he would be proud to know that he inspired a product that helps others.

The Recognii Treasure Box DVD is available free of charge to every Admiral Dementia Nurse Specialist in the UK until 31st December 2022. A percentage of profits are donated to dementia charities. Available from recogniz.co.uk.

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