SPECIAL REPORT: Dementia in Ireland - It’s possible to live well with diagnosis
Dementia is increasingly moving out of the shadows due to increased public awareness and more positive attitudes to supporting those affected and their carers.
In Ireland, there are 48,000 people living with dementia, a figure set to treble in a generation. Next year alone, some 4000 people with develop the condition — that’s 11 people every single day.
Every day, our powerful dementia advocates are taking part in a national conversation on the condition by speaking, writing, and opening up about life with Dementia, which is having a tangible, positive impact.
However, many people with dementia say that, from the moment they are diagnosed, those around them feel somehow rendered incapable. The reasons for such stigma are manifold, but the consequences are almost always the same — while those living with the condition struggle to understand what is happening to them, they can become socially isolated from friends and family.
Stigma arises through a lack of understanding and the tendency to avoid issues we do not fully understand or fear. The majority of people still believe dementia is a condition exclusively of older age.
The typical image of an older person languishing in a nursing home further compounds the negative stereotype. The full picture of Dementia however, is a progressive illness affecting people of all ages, and one that requires very different supports along the journey. Not only does dementia affect people in older age, it also affects 4,000 Irish people under 65 — some with young families, in full- time employment, and with multiple, complex needs.
To challenge this prevailing issue, the Alzheimer’s Society of Ireland is running a campaign called ‘Forget The Stigma’. We believe that, with the correct supports, it is possible to live well following a diagnosis.
With more than 1,200 sign-ups at the time of writing, it is the largest social movement in Ireland to date for the condition. That is more than 1000 people pledging to help combat stigma by agreeing to learn the facts of the condition, listen to people with dementia, and finally, and most importantly, link up with those living with the condition and their carers, and stop isolating them out of fear.
Dementia can occur at any age, and more than 68,216 of us are set to be affected in Ireland by 2021. Clearly, a truly holistic approach is needed if we are to turn fear into knowledge and educate our communities, so that those with Dementia are effectively supported and understood.
As consultant geriatrician Des O’Neill pointed out at the launch of ‘Forget The Stigma’, undue negativity which leads to stigma, poor political prioritisation and therapeutic nihilism all need to be combated.
Members of the Alzheimer’s Society of Ireland Irish Dementia Working Group, all of whom have been diagnosed with a form of dementia, are working tirelessly to advocate on behalf of people with the condition. They report the difficulties associated with living with dementia are further compounded by social isolation, prejudice, discrimination, and poorly developed and fragmented services.
In December, we had the publication of a long- awaited National Dementia Strategy, which focuses, among other things, on providing supports to allow people to live well in our communities for as long as possible.
Now is the time to fully implement this comprehensive blueprint for dementia care in Ireland. The positive impact this would have on the lives of the thousands of mothers fathers, sisters, brothers, sons, and daughters living with this condition both now, and in the future, would be phenomenal.
In terms of research, major investments in heart disease and cancer research in recent years have helped bring down death rates for these conditions and have had a real impact.
We need to do the same for dementia. Only through research can we find ways to treat and prevent dementia, and transform the lives of the thousands affected. A similar shift took place in the 1970’s for cancer, with a sea-change in how we support those with cancer and fund their services. Those among us with dementia, and those of us who will have it in the future, deserve nothing less.
One in 10 people who live to be older than 65 will be affected by dementia. It is apposite that we all sign up now to help make the Ireland of our future truly dementia-friendly.
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