Going into battle to be dementia-friendly

By Gillian Sharpe
BBC Scotland

Published
image captionAgnes Houston is keen that people understand that dementia is not just about memory

"Nothing is safe for me," says Agnes Houston.

"I have to plan and prepare for every journey and everything I do, like you would do going into a battle."

She is just one of about 90,000 people in Scotland living with dementia, according to Alzheimer Scotland.

It says that figure could double within a generation, with the disease touching many of our lives.

Next week is Dementia Awareness week, which aims to get people talking about the condition through a range of events across the country.

When Agnes was diagnosed nine years ago, at the age of 57, she withdrew into herself and that only changed when she became involved with the Scottish Dementia Working Group, and - as she puts it - started to live again.

Lots of challenges

The group aims to make sure that the views and perspectives of those living with the condition are taken into account.

Agnes is keen that people understand that dementia is not just about memory but has a sensory dimension too which can mean changes in vision, making it difficult when navigating surfaces like roads and pavements, going up and down stairs or coping with noise.

To maintain a life in the community, she says there are lots of challenges to overcome.

"I came here today and I used the train and the underground," she adds.

"Was I frightened? You gotta believe I was frightened."

Agnes has found peer support and the experiences of others with the condition to be invaluable.

image captionIn 2012, Motherwell became Scotland's first dementia-friendly town centre

She says: "It was a person with dementia who spent months teaching me to use the underground.

"Months to alleviate the fear and to calm me and let me see that its possible because before that I was walking my wee legs off because I was frightened of using public transport."

Something like 40% of people with dementia live in residential care or long-stay hospital care. The remaining 60% live in the community.

In 2012, Motherwell became Scotland's first dementia-friendly town centre.

The pilot was a partnership between Alzheimer Scotland, North Lanarkshire Council and NHS Lanarkshire.

Local services and other services were brought on board and encouraged to be aware of the needs of customers with dementia.

Sometimes changes were simple ones like lighting or signage.

The big D word

"Dementia has come a long way in relation to stigma, but it still has a long way to go," says Arlene Crockett of Alzheimer Scotland, who was part of getting the scheme off the ground.

"We want dementia to be something that people are not frightened or fearful of talking about because they know that their community will be with them and support them with that."

She says the changes have been ongoing.

One of the local business people involved was Ann Gorman, who owns the town's Woodcutter Bar. She was keen to take part because so many people either have the condition themselves or have relatives who do.

"It's knocking at everyone's door," she says.

Earlier diagnosis could mean a change in how people react to the condition.

"People will want to stay in their own environments doing familiar things for as long as possible," says Agnes Houston.

For her one of the things she likes to do is yoga, but music became an issue.

"When these challenges came about I explained to the girls and rather than giving up my yoga, they turned the music down.

"They changed the environment to suit me but they don't use the big D word. That's what being dementia-friendly is about, it's about being human-friendly."

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