Keeping care in the home

“We know she will get worse and we will be glad of more support hours. At the moment, we have five hours a week through the HSE and two from the Genio project on a Monday. Anything extra is welcome. I can’t be in two places at the one time. We are coping but it is getting harder so we are grateful for any additional supports.”

Despite the difficulties, Michael says his family’s preference is to care for their mother at home as long as possible. Neighbours and the local community have a role to play in that too and the project will be as much about educating society around dementia and Alzheimer’s, as it will be about the service users themselves.

“The sense of stigma is very real,” explains Dr Caitríona Crowe.

“Generally, people don’t want others to know that a person in their family has dementia. They are embarrassed and therefore don’t always come forward. The Irish are community minded and neighbourly.

“We want to make people feel more comfortable talking about these issues and in turn more accepting of their consequences.”

LIVING WELL WITH ALZHEIMER'S: MARIE RYAN:

“I think people let it go too far before going to a doctor. It is very important to be able to help people in their homes and in the community.

“I pretty much diagnosed myself. I was forgetting a lot of things and a local doctor then sent me for a brain scan. I’m fairly good now. Sometimes, I think bedrooms are where they’re not and money means nothing to me. I can’t add up money and other things like if someone said what year did someone die, I could get it years wrong.

“We need something set up in Tipperary town as we have to travel to Clonmel for our services. I feel there is a lot more to be done for Alzheimer’s. You get lonely. I get satisfaction out of telling people. They need to know. Only the person who is suffering knows what it is like. We all have to die; the main thing is to not be cut off by illness. It is so important you keep talking and keep in touch.

The Genio Trust was established in 2010 to support projects that positively impact on the lives of people in Ireland who are marginalised. The organisation works in the disability, mental health and dementia fields, supported by Chuck Feeney’s Atlantic Philanthropies. The South Tipperary dementia project is led by Dr Caitríona Crowe and covers a population of 88,441. This project is structured around activities which are relevant to the different stages of dementia including pre-diagnosis, early dementia, progressive dementia, living well with advanced dementia and living well and dying well.

THE FIGURES:

According to analysis of the 2006 census, 1,011 people in south Tipperary were living with dementia, but only 50% had received an official diagnosis