One woman’s mission to take the fear out of living with Alzheimer’s

By Ruth Walker
Published on 03/02/2013 00:00

TISH Tindall recalls the first time she met her partner Diane’s mother.

“She was in a small hospital in Buckie for respite care and all I saw was this vision walking up and down the corridor. I’d never seen anything like it in my life. I don’t want to say the word ‘deranged’ but that’s the word that comes to mind. She looked scared, alone. But when Diane took her hand she completely relaxed.”

Susan Parker was diagnosed with an aggressive form of vascular dementia at the age of 57. Now aged 64, she’s in the end stages of a disease that currently affects 700,000 people – one in every 88 – in the UK. That figure is expected to rise to more than 1.7 million by 2015, largely because of an ageing population, but also poor lifestyle choices. And it is striking earlier than ever.

“I’ve met people who are experiencing this in their early 40s and even in their 30s,” says Tindall. “This is not an old person’s disease. People think it’s your old dotty auntie and grandma in the corner – ‘take them away’. But dementia breaks down the body like a circuit board, and it short-circuits.

“Diane’s mum is at the stage where her main function is eating. She sometimes recognises us. I’m very cheeky and she’ll look at me and nod. And Diane’s dad is incredible – he makes her laugh like no-one would believe. He puts on silly voices and she joins in. But that’s becoming less and less. I have seen this incredible woman disappear before my eyes.”

As a result of that first meeting, Tindall, a singer songwriter and co-director of Lossiemouth’s answer to New York’s School of Performing Arts, Rock Academy (cue images of Scots youngsters leaping over private hire taxis in Lossiemouth High Street), wrote a song called I Remember. That has, in turn, led to a one-woman show that travels to London this month, with requests to take it on to Florida, Canada and Dubai.

Who Cares takes audiences from an Alzheimer’s diagnosis right through to the very end, featuring humour – “There are a lot of cheeky comedy elements where I probably push things a little bit” – music, laughter and, inevitably, tears. “I don’t leave anything out,” she says, “but I do it in a way that is user friendly.

“We’re scared of anything to do with the brain. We think of the word ‘mental’, and we’re still very scarred by old films with white buildings and men in white coats. There’s a lack of understanding. This person is still a person; they still love a hug; they still love to hold your hand. They’ll love that you’ll have a conversation with them or read the paper with them; they love music and still love to be part of the family.

“We need to care. We have to see through this disease that ruins the lives of so many people because the person sitting next to you is still very much in your life, but you can’t have any conversation with them that reminds you of who they are.

“The upshot of that,” she adds, “is that people live with dementia. It is a sentence but you have a lot of years to live before you get to the point where there’s no communication.”

The show comes at the same time as the latest studies indicating a link 
between lack of quality ‘slow-wave’ sleep, binge drinking and lack of exercise with the onset of Alzheimer’s. And research group Steinkrug, working with Manchester Municipal University, has found that prolonged exposure to television and the internet may also lead to a deterioration in the health of our brains. It seems that our mothers may have been right after all: too much TV really could rot our minds.

“From time to time, almost everyone forgets something and many of us end up trying to recall people’s names 
using a variety of techniques,” says Peter Kruger of Steinkrug. “One example is stepping through the alphabet until the first letter of the name provides a prompt. If we are trying to recall the name of a colleague we may run through a list of places where we have met them. Neuroscientists believe the use of such prompts and cues are evidence of alternative neural pathways linking the same information. The more stimulating our lives, the more numerous the alternative neural pathways.

“This plasticity is thought to minimise the impact of early stage dementia. Of course, the converse holds true and the less plastic the brain, the quicker conditions such as Alzheimer’s become disruptive.”

The research at Manchester has found that a diet of mentally unstimulating television could be the equivalent of a double cheeseburger and chips for the brain. “Things could be about to become a whole lot worse as people start using Google as a prompting machine and Facebook to put a name or a face to that friend they are struggling to remember,” says Kruger. “Will these technologies act as stimuli and exercise our minds and fill the gaps in our memory as our brains age? Or will they merely help us recall more but remember less – creating the neuroscience version of obesity?

“The UK government has expressed concern that elderly people will become isolated and excluded as social media becomes the dominant tool for communication and self-expression. However, to ensure social media is suitable for an ageing population, we need to ensure the impact it has on neurological level is fully understood.”

Twitter: @ruth_lesley

Who Cares is at the Radisson Blu Hotel, Portman Square, London, 19 February ([e-mail]); (www.alphadaughterscom)