Time to end ‘fear and secrecy’ around dementia in Ireland

It is time to end the "fear and secrecy" surrounding dementia as Ireland prepares for the number of sufferers to more than double in the next 20 years, a leading expert has said.

Prof Brian Lawlor of Trinity College Dublin is leading a new campaign, Understand Together, to promote awareness of dementia and to help stop the "loneliness and isolation" for the 55,000 people with the condition in the country, and their carers.

Launching the campaign on Monday, Prof Lawlor said 11 people developed dementia every day in Ireland, and one in 10 diagnosed were under 65.

The figures from the Department of Health predict the number of people with dementia will reach 113,000 by 2036.

“More and more people are developing it, and there is a very poor understanding about dementia – fear and secrecy surround it,” he said.

“It is a lonely and isolating experience. We need to address these issues in society and emphasise how important it is to stay connected and keep talking.”

Prof Lawlor explained that dementia was the umbrella term for a group of diseases affecting the brain.

These diseases can cause damage to parts of the brain used for memory, learning, language and decision-making.

He said Alzheimer’s disease was the most common cause of dementia, accounting for two thirds of all cases.

The second most common type is vascular, caused by conditions that affect blood circulation in the brain such as strokes.

‘People stop going out’

Symptoms of dementia include memory loss, confusion with time or place, difficulty communicating, issues with problem-solving and changes in behaviour.

“It can present differently in different people. Some people will be quite aware that they have problems and others won’t,” Prof Lawlor said.

Dementia is progressive and there is currently no cure. Prof Lawlor said if people with the condition remained engaged and connected with the community, the condition may stabilise (for a time).

“People can get fearful and they stop going out. We need to encourage people to talk about it more. It will help people to live better with dementia and have a better quality of life,” he said.

“This campaign wants to inform people and let them know what can make a difference.”

Minister of State for Health Helen McEntee, who was unable to launch the campaign due to ill health on the day, said support from the public and communities would make a difference to the thousands of people living with dementia, their families and carers.

The three-year campaign has funding of €2.7 million from the State and from Atlantic Philanthropies.

Margot McCambridge, who cared for her dementia-afflicted husband for more than five years until his death and is a member of the campaign steering group, said support was needed for carers as much as for people with dementia.

“One of the big problems is, people won’t talk about it. Carers don’t have a voice and it can be hard for them. We were lucky with supportive friends and neighbours in our situation, but many others find it hard to talk about.”

‘It brought us together as a family’

Ms McCambridge, from Stillorgan in Co Dublin, said people should ask for help when they need it and not be afraid to talk about dementia.

“It’s nothing to be embarrassed about, it can happen to anyone,” she said.

“Caring for someone with dementia can be hugely difficult at times and it can also be rewarding. For my own situation, we looked after my husband at home until he died at home, and that was precious. It brought us together as a family.”

Tina Leonard, head of advocacy at the Alzheimer Society of Ireland (ASI), said the group received daily reports of stigma and isolation from people with dementia, and from carers.

“When people realise that calling for a chat can make a world of difference and when people realise that being ill isn’t shameful, we will have a better society for all,” she said.

Dr Stephanie O'Keeffe, national director of health and wellbeing at the Health Service Executive (HSE), said recent research showed only one in four Irish people felt they had a "good understanding" of what dementia is.

“This campaign seeks to create a collaborative model in which those already engaged in dementia-specific activities can link with others,” she said.

The campaign is being led by the HSE working with ASI and Genio with more than 30 other businesses and groups.

For more information on the campaign, see understandtogether.ie