Watching my father’s Alzheimer’s develop inspired me to help others

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

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

“We were having lunch outside when the poor fellow ran into the wall. Thankfully, he was just a little stunned and eventually flew away, but this little drama has become a favorite holiday anecdote.

Sarah says the alarm bells rang when David, then 74, couldn’t 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 recollection of the vacation, or of the poor duck. I knew deep down what it was, I just hoped desperately to be wrong. “

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

“Dad’s symptoms were typical,” Sarah says. “I remember he was confusing day and night, once he insisted on going to bed at 3pm and he got mad if Mom didn’t join him. He became anxious and reserved, the opposite of his outgoing nature, ”remembers Sarah. “He got lost on a much loved walk and rolled over into a tree, which was completely out of character.”

The Alzheimer’s Society says there are more than one million people in the UK with the disease, and this is set to rise to two million by 2051. The cause is unknown, but experts believe that genetic and related factors lifestyle such as obesity, smoking, diabetes and high cholesterol mean that “plaques” build up in the brain causing 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,” says Sarah. “But he had gotten very good at hiding it. He retired early from his job as an electrician, a surprise at the time, because he had planned to continue, but I think he was unable to cope with the paperwork. He started repeating old stories over and over again. I suspect he knew something was wrong because he gradually became calmer, not wanting to make mistakes. “

Growing up, Sarah adored her father, a kind, unassuming man who loved to make others laugh. “He was always joking and he was silly. This is what I missed when he withdrew into himself ”.

Sarah’s mom, Liz, a retired pediatric nurse, took David to the family doctor in 2015. He was referred to a memory clinic where, a few weeks later, a diagnosis of Alzheimer’s was confirmed.

“We thought the services would go live, telling us what to do,” Sarah says. “But they didn’t. Although Alzheimer’s is a terminal disease, unlike cancer, there is no real cure plan. We felt like we were left there. There is support, but from a bewildering network of different organizations that never quite come together. We learned of a free respite care service but, after endless phone calls, we found it was not available in our area. And we were only told about a free six-week course for Alzheimer’s caregivers, three years after her diagnosis and a year before her death: too little, too late. “

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

“I would come to feed him with a spoon, looking at him like a hawk, terrified that he might choke because he had forgotten how to swallow. In the evening I would go back to put him to bed. Dad, bless him, sometimes objected to being moved, or he got angry and we had no idea why. “

On vacation in France in the late 1980s - Lorne Campbell

On vacation in France in the late 1980s – Lorne Campbell

Sarah says that despite this, the practical side was still relatively easy compared to the emotional toll when the disease took hold. “Watching my father slowly disappear was the hardest thing. I felt so miserable, desperate for him to make a joke or wink – just show me a glimpse of his old self. “

In the early stages of dementia there were support groups, cafes, choirs and activities to fill the days. David was particularly fond of singing. But, Sarah says, as the disease progressed over her past 12 months, her father couldn’t handle these outings. “He couldn’t leave the house and we couldn’t leave him – he got mad and, frankly, he wasn’t sure.”

Sarah admits that there has been very little respite, especially for her mother. “Dad couldn’t read or puzzle, or even chat. He sat down, staring absently. We were completely lost on how to make him happy. We couldn’t even turn on the TV, because he didn’t understand it. “

A little known fact about dementia, according to research conducted in Iceland, is that as the disease progresses, people may find it very difficult to watch regular TV. Busy patterns, muddy colors, fast-talking presenters, movie plots and soap operas can all get too confusing and hard to see.

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

“I tried the children’s TV, but it looked humiliating and didn’t reflect his experience as an adult. I just wanted to give him joy, see him laugh again, and give Mom 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 talked to other assistants in the support groups and found that they were having exactly the same problems. She also found that many Alzheimer’s patients were attracted 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,” says Sarah. “A kind, dignified adult program, without unnecessary details or dialogue, without plots and based on songs that this generation loves and recognizes.”

Sarah got in touch with a TV director friend to help develop it. “We did months of research on what to include and talked to Alzheimer’s experts,” Sarah says.

“We filmed children, animals, famous landmarks, nostalgic scenes and nature on plain backgrounds, using bright and contrasting primary colors (Alzheimer’s can distort vision) and set it to well-known music. We made each clip lasting about 30 seconds or two minutes 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 late stage dementia.

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

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

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