How Fifers can help people with dementia

Gerry King at the cafe in Leslie.
Gerry King at the cafe in Leslie.

Aged just 56, Gerry King sat alone in his home, staring at the walls, as he thought about how his world had changed.

He had been diagnosed with early onset Alzheimer’s.

In 2016, Gerry had started having problems with his short-term memory, forgetting conversations, asking the same questions again-and-again.

He passed a test at his GP office, but failed miserably when he had a more in-depth test just three months later.

In September 2018, Gerry, who worked in the architect department at Fife Council, got the diagnosis.

“I was devastated,” he said. “I had to give up my job – half of it was driving, and the other half was at the computer.

“I forgot how to use the computer and because of the diagnosis, I lost my driving licence. I was considered a danger on the road. I was driving places and forgetting how I got there.

“I had an accident at a car park one day. I hit a poor woman’s car and didn’t realise I’d done it. The woman was sat in her car shaking her fist at me. I asked her what was wrong and she said I’d bashed her car. I didn’t think I had. I got out and there was a big scratch down the side of it.”

Gerry’s confidence took a big knock. He isolated himself as his world changed.

So what changed?

Ruth McCabe, the project manager at Dementia Friendly Fife, “dragged” Gerry out of the house, getting him to give talks to companies about his own experiences.

Fife Health and Social Care Partnership started the dementia project in October 2018, challenging businesses, organisations, charities and individuals to sign up to become ‘dementia friendly’.

It means taking a short course, online or in person, to learn more about the disease and what you can do to help those living with it.

There are now more than 6000 ‘dementia friends’ in the Kingdom, with over 250 Fife businesses having taken part.

Gerry helps promote the campaign, talking about the disease and breaking some of the misconceptions.

Businesses and organisations can get involved with the project and become ‘dementia friendly’, which involves the location being assessed to see what changes can be made to make it more suitable to people with the disease.

“Places that are ‘dementia friendly’ are very calming – the atmosphere is calming, the decor is calming,” explained Gerry.

“I went to IKEA. Some parts were OK, some were not. If the decor is too jazzy, too bright, it affects my visual awareness and mental ability. Some parts of the store I just walked out.

“The supermarket can be confusing. I go most days.

“But I notice as my condition gets worse, it gets more difficult, to remember where things are, what aisles to go down.

“And if it’s busy it can be quite scary.”

There are also a lot of misconceptions about dementia and how to deal with it.

Gerry said some friends started treating him differently because they were not sure how to deal with it.

“It’s a difficult disease to cope with,” he said. “You need a lot of understanding.

“Your temperament is pretty poor and you have no patience. It’s hard to understand what is going on around you sometimes.

“It’s difficult to speak, hard to find the right words.

“I think people have to realise it’s not as scary as they think. The end stage is bad, but before that stage it is just a normal life.

“Just be more kind and understanding. When I’ve spoken to people about it, they’ve mostly been good.

“People have the misconception it’s an old person’s disease. It’s not. It can affect anyone, at any age. I think the more people that are aware of it, the more it will help people with dementia to live a normal life as much as possible.”

Hilary Cooper, whose husband Richard was diagnosed when he was 57, has found support at a ‘dementia friendly’ cafe which meets at the Masonic Lodge in Leslie.

“I find there is so much support in Fife,” she said.

“Even doing this cafe has made a difficult situation a lot easier, having somewhere to come and talk. I met Gerry and his wife – we feel like we’re together.”

Hilary said that the support she has received through groups like the cafe has made a big difference.

She said: “It affects all the family.

“It’s not something you expect. It puts more pressure on the family.

“You have to adapt to live with it and so it’s good to have that support.

“I’ve met loads of people. We’ve not lived in Leslie very long. You need to talk to people who know what you’re going through.”

The Dementia Friendly Fife project is just for two years and will end in October.

Despite this, it is hoped that the project leaves a legacy in Fife, so that the training continues after the scheme has finished.

For example, it is hoped that the businesses which have taken part will get new staff to complete the online course.

With the number of people living with the disease continuing to rise, it is important that the work the project has achieved continues.

The online course can be completed at www.dementiafriendsscotland.org.

It takes around 15 minutes to complete and, at the end of the videos, you can download a certificate to show that you are a ‘dementia friend’.

For information and support about dementia call the Alzheimer Scotland helpline, which will provide advice and guidance to local support. The number is 08088083000.