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Living with dementia: 'Do I hide it or be straight? I went with straight. You have to live your life.'

Two dementia sufferers are telling their stories as part of a new HSE awareness campaign.

HSE Ireland / YouTube

THE HSE HAS launched a new national campaign aimed at increasing understanding and support for people with dementia.

There are around 55,000 people in Ireland living with dementia, and this figure is expected to more than double to 113,000 by 2036.

In a survey conducted on people’s understanding of the disease, it was found that many people were unaware of some of the basic facts about dementia.

Adverts showing two people sharing their experience of living with dementia will be broadcast as part of the campaign, in a bid to show how keeping friendships, community and family connections alive allow dementia sufferers to live well with the disease.

Paddy Butler is 70 years old, and from Kilkenny. He was diagnosed with dementia due to Alzheimer’s disease in recent years. He said that it was important to be up-front and tell people about his diagnosis.

He said: “When I was diagnosed with Alzheimer’s, at the start, I didn’t know what I was doing, what was happening. I asked myself do I hide it or do I be straight up? Kilkenny is a small place and I know a lot of people.

I decided I had to go and face it and to be straight with people. Trying to hide things would have been worse. It should be out there.
More people talk to me now than before and everyone says ‘hello’ when I pass by. It’s important to show that people with Alzheimer’s can keep going. I like to keep up my interests as best I can. I like to go walking, to go for a cuppa, to go to Nolan Park to support the Cats. You have to live your life.

HSE Ireland / YouTube

Maureen O’Hara, who is also from Kilkenny, is 57. She was diagnosed with young onset dementia in 2014.

For her, staying connected to family and friends is vitally important:

“For me the diagnosis wasn’t a shock as I had been living it. It was nearly a relief to know.

What’s most important for me is being connected with people. It’s about being out there  ̶  whether that’s enjoying hill-walking or keeping in touch with neighbours and friends. I don’t like wasting time  ̶  rather, I like spending time. It makes my life worthwhile.

In a survey from Behaviour and Attitudes in January 2016, it was found that nearly two in every five people (39%) know little or nothing at all about dementia.

Over half of people (54%) did not know that there are steps to minimise dementia, such as eating healthily, not smoking and avoiding excess alcohol.

Furthermore, a third (32%) of people thought that dementia could be cured. There is not yet a cure for the disease, however.

Michael Fitzgerald, head of operations in services for older people at the HSE, said: “Dementia is one of the biggest challenges facing our society; as our ageing population increases the number of people with dementia will grow in the coming years and decades.

This campaign is important so that dementia can be better understood and accepted, and so that we can all support people to live well and independently for as long as possible.

The new campaign has its own website where people can find out more about dementia. You can find it at www.understandtogether.ie.

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Sean Murray
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