Fear and stigma causing “unnecessary isolation” for people with dementia

Categories: Research.

The study found one in two Irish people know or have known someone with dementia.

However only one in four people feel they have a good understanding of what dementia is.

The research was carried out as part of a new HSE led campaign – Dementia Understand Together.

The aim of the campaign is to create an Ireland that embraces the 11 people a day that develop dementia is at the centre of a newly launched campaign.

All sections of society are being urged to “stand together” with the 55,000 Irish people living with dementia in Ireland.

Professor Brian Lawlor, Trinity College Dublin and chair of the campaign’s steering group said “Each year over 4,000 people develop dementia in Ireland – over 11 people a day. All are living with a brain condition that deeply affects their lives and the lives of people who love and care for them. “

He said fear and stigma surrounding dementia can also result in delays in seeking help and diagnosis with some missing out on available supports and services as a result.

“These services and supports can allow people to live well with dementia for many years while maintaining their dignity and quality of life,” Professor Lawlor said.

Ronan Smith, who is living with dementia and is a member of the campaign steering group said, “Life doesn’t end when dementia begins. People with dementia can and do live meaningful, active lives for many years.

“Diagnosis doesn’t mean we immediately lose our skills and abilities, our need to belong and share or, above all, our sense of dignity. Respecting the diversity of the dementia experience and the individuality of people who are living with it is a vital step in recognising that the person is a lot more than the condition.”

Margot McCambridge, who cared for her husband and is a member of the campaign steering group spoke at the launch about her perspective saying, “The caring experience is complicated. It can be rewarding.  It can also be hugely difficult at times. Support is needed for the carers as much as for the person with dementia. If the carer is supported, this in itself supports the person with dementia.”

Dr. Stephanie O’Keeffe, National Director of Health & Wellbeing, HSE said: “Building and sustaining compassionate communities supportive of people with dementia and carers is a challenge which many key organisations can play a part.

“We know from evidence that maintaining social and community ties is an important element in helping people live well with dementia and in helping to support their loved ones. This campaign seeks to create a collaborative model in which those already engaged in dementia specific activities can link with others and organisations from diverse sectors can work towards greater understanding of dementia and inclusion of those affected by it.”

The HSE is working with The Alzheimer Society of Ireland and Genio and a coalition of over 30 partners from business, academic, health and voluntary and community sectors on the Stand Together Campaign. It is funded by the State and The Atlantic Philanthropies.

Tina Leonard, Head of Advocacy & Public Affairs with the Alzheimer Society of Ireland (ASI) said, “This national awareness campaign is absolutely crucial for our country and we’re proud to play our role in it. Each day at the ASI, we hear of stigma and isolation both from people with dementia and carers. When people realise that dementia affects so many in our communities, 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.”

To learn more about dementia, and to get involved in the campaign, please visit www.understandtogether.ie  

For support please call The Alzheimer’s Society of Ireland on Freephone 1800 341 341

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