Recognii is in the Daily Telegraph - Read co-founder Sarah's full story
It was a duck flying into the side of a house which 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 eating lunch outside when the poor thing careered into the wall. Thankfully, it was just a bit stunned and eventually flew off, but this little drama became a favourite holiday anecdote.”
Sarah says alarm bells rang when David, then aged 74, couldn’t remember the incident. “We were walking in the park a few months later and he asked me if I’d ever been to the Isle of Wight. He had absolutely no recollection of the holiday, or the poor duck. I knew deep down what it was, I just desperately hoped I was 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,” says Sarah. “I remember him confusing day and night, once insisting on going to bed at 3pm in the afternoon and getting upset if Mum didn’t join him. He became anxious and withdrawn, the opposite to his outgoing nature,” Sarah recalls. “He got lost on a well-loved walk and reversed into a tree, which was completely out of character.”
The Alzheimer’s Society says there are over one million people in the UK with the disease, and this is set to rise to two million by 2051. The cause isn’t known, but experts believe genetics and lifestyle factors such as obesity, smoking, diabetes and high cholesterol mean that “plaques” build up in the brain causing tissue to die.
“Now I look back, I think Dad’s Alzheimer’s started in his early 60s,” says Sarah. “But he had become very good at concealing it. He retired early from his job as an electrician – a surprise at the time, because he’d planned to continue, but I think he couldn’t cope with the paperwork. He started repeating old stories over and over. I suspect he knew something was amiss because he gradually became quieter, not wanting to make mistakes.”
Growing up, Sarah adored her dad – an unassuming, kind man who loved to make others laugh. “He was always joking around and being daft. That’s what I missed when he retreated into himself.”
Sarah’s mum, Liz, a retired paediatric nurse, eventually took David to the GP in 2015. He was referred to a memory clinic where, a few weeks later, a diagnosis of Alzheimer’s was confirmed.
“We thought services would kick in, telling us what to do,” says Sarah. “But they didn’t. Although Alzheimer’s is a terminal disease, unlike cancer there is no real care plan. It felt as if we were just left to it. There is support, but from a baffling network of different organisations that never quite join up. We learned of a free respite care service but, after endless phone calls, discovered it wasn’t available in our area. And were only told about a free six-week Alzheimer’s carers course, three years after his diagnosis and a year before he died – too little, too late.”
Sarah acknowledges that they were fortunate in many ways. She and her mum were able to care for David at home and Sarah lived close by so she could visit every day. “I’d go before work at 8am to help get Dad out of bed. I’d ease him into a wheelchair and take him to the bathroom. Some days he simply couldn’t make his arms and legs move, so washing and dressing him took forever.
“I’d pop in to spoon-feed him lunch, watching him like a hawk, terrified he’d choke as he’d forgotten how to swallow. At night, I’d go back to put him to bed. Dad, bless him, would sometimes object to being moved, or wearing a certain shirt, or he would just get upset, and we had no real idea why.”
Sarah says that despite this, the practical side was still relatively easy compared to the emotional toll as the disease took hold. “Watching my Dad slowly disappearing was the hardest. 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, cafés, choirs and activities to fill the days. David especially loved singing. But, says Sarah, as the disease progressed in his last 12 months, her dad couldn’t manage these outings. “He couldn’t leave the house and we couldn’t leave him – he became upset and frankly it wasn’t safe.”
Sarah admits there was very little respite, especially for her mum. “Dad couldn’t read or do puzzles, or even chat. He would sit, staring blankly. We were completely at a loss as to how to keep him happy. We couldn’t even put the TV on, because he didn’t understand it.”
A little-known fact about dementia, according to research carried out in Iceland, is that as the disease advances, people can find it very difficult to watch normal TV. Busy patterns, muddy colours, fast-talking presenters, storylines in films and soaps can all become too confusing and difficult to see.
“Like most people, Dad had enjoyed watching TV,” says Sarah. “Now, he couldn’t even follow his favourite films. It broke my heart. I assumed there would be DVDs for later stages of the disease, but I couldn’t find anything. There were a few CDs of nostalgic music, but nothing visual. I was staggered.
“I tried children’s TV, 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 talked to other carers at support groups and found they were having exactly the same issues. She also discovered that many Alzheimer’s patients were drawn to the same things as her dad – children, animals and nature.
“A tentative idea started to form in my head about creating a film with all of these things in it,” says Sarah. “A gentle, dignified, adult programme, with no unnecessary detail or dialogue, plot-free and set to songs this generation loves and recognises.”
Sarah got in touch with 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 filmed babies, animals, well-known landmarks, nostalgic scenes and nature against plain backgrounds, using bright, contrasting primary colours (Alzheimer’s can distort vision) and set it to well-known music. We made each clip around 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 later stage dementia.
This success, however, was bittersweet for Sarah. “Sadly, Dad only got to watch early pilot versions before he died in 2019, but his joyful reaction meant everything to me, he came alive when I showed him the clips. I still miss him every day, but I like to think he’d be proud to know he inspired a product that is helping others.”
Recognii Treasure Box DVD is available free to every admiral (dementia specialist) nurse in the UK during World Alzheimer’s Month and until the end of October. A percentage of profits go to Dementia charities. Available from Recognii.co.uk