One Cork community's quest to make Macroom Dementia Friendly

THERE was a full house at the Castle Hotel in Macroom recently to hear a presentation from Alzheimers Ireland and a new strategy to make Macroom a Dementia Friendly Town.

Carers, those with the disease, business owners and locals attended in great numbers, along with local TD Aindrias Moynihan.

‘Making Macroom Dementia friendly’ is an initiative which will hopefully have a meaningful impact on families affected by the disease.

The speakers were author Kevin Quaid, who lives with Lewy Body Dementia; Donal Murphy, operations project manager for Alzheimers Ireland; Vanessa Bradbury, a dementia adviser; and Siobhan O Connor, the head of operations.

All spoke passionately about this disease and offered some harrowing statistics.

4,000 people with dementia in Ireland are under 65 years of age.

There are 500,000 families in Ireland that are affected by this disease.

Half of all costs in caring for someone with dementia are covered by their family, which saves the state €807million per annum.

There are 30 people diagnosed every day in Ireland - 11,000 new cases every year - and the figures are similar worldwide. This number is expected to rise exponentially as we get better diagnoses and as the population lives longer.

There are more than 400 types of dementia, with the most common being Alzheimers disease, vascular dementia, frontotemporal dementia and Lewy body dementia.

Kevin Quaid spoke about how the disease has affected his life and the lives of his family. How, even though he seems a confident man, he is terrified of large spaces and unfamiliar settings.

He spoke of how, having announced his diagnosis at his book launch, the townspeople of Kanturk accepted the effects of dementia as part and parcel of their friend, which gives him great comfort and a sense of security as, if he ever feels flustered while in town, the locals know what to do.

Kevin says this has changed his life as he can now go for a pint or a coffee or a walk and not worry about feeling overwhelmed. He dedicates all of his time to raising awareness about the disease as part of the Irish dementia working group.

“DatSCAN can differentiate between Lewy body disease and Alzheimers desease,” he says. “We have DatSCAN in Ireland, many countries don’t. We need proper diagnosis in order to treat correctly.”

Vanessa Bradbury highlighted difficulties experienced by those with a dementia diagnosis every day. From the fear of getting lost or disorientated, to finding neither awareness nor help in shops because of a lack of understanding and training.

She spoke about the hardships suffered by carers and the heart-breaking difficulties they endure. Vanessa also talked about the importance of early diagnosis, as some forms of dementia can be reversible with the right care. Many still believe dementia and alzheimers disease are the same thing and delay going to their GP out of fear.

“Many suffer and endure in silence because of the stigma around the disease, and a lack of knowledge on how people in the community can help,” said Vanessa. “Many people end up in long-term care because of family burn-out. We aim to address this issue.”

Siobhan O’Connor hopes a weekly meeting for those with the disease and their carers, on Wednesdays at Coolcower House in Macroom, will soon be moved to a more suitable location. Both she and Aindrias Moynihan have spoken with Mary Butler, Minister for Mental Health and Older People, about getting this done.

Donal Murphy talked about how Macroom can become ‘dementia friendly’.

“We need an action plan to make living with dementia easier for people in the community and we will set up a leaders group this evening to get this done,” he said.

Donal went on to quote the World Health Organisation, which said that dementia is not just a health issue, but a social issue, and therefore needs a community response.

He says the people that help to build their communities deserve a decent response from these communities. So, with the HSE, WHO, community groups and Alzheimers Ireland, they have been working to reach their goals.

He highlighted the Dementia Understand Together Campaign from 2014, which Kevin Quaid and others are championing. Posters and ad campaigns are in bus and train stations and Kevin has discussed the issue with Claire Byrne on her radio show.

So, what is a dementia friendly community?

Basically, it is where people with the disease and their families can participate in society. They have choice and control over what they want to do. They live free of stigma. This takes training and awareness. The first steps are to create a group of volunteers with leaders to meet regularly and follow the next steps.

Donal says the stigma can be overcome by a community being proud to be dementia friendly. To advertise it and highlight it, monitor progress, and remember that everyone can be involved. Community awareness workshops with shops, hotels, banks, representative of groups like the GAA, etc, and also putting up signs to indicate that the business is dementia friendly. This can be achieved over a cross section of the community.

Donal said the response locally has been fantastic and the work will begin immediately as people are eager to volunteer.

To learn more, visit www.alzheimers.ie or call 1800 341 341. Check out their Facebook and Twitter page or attend a tea day at Aindrias Moynihan’s office and at Killian Lynch’s office on May 5 to learn more.