‘Isolation is the enemy’ as people  with dementia withdraw socially

“The biggest change in my life was in the last nine months when I got my hearing checked,” he said.

“That made such a difference I was able to reduce my medication — my doctor reduced it and is talking about reducing it further.” 

Now living in Kanturk, he had stopped going to GAA matches or anywhere noisy.

“You get embarrassed,” he said.

I found the easiest way was to withdraw, so I would go out early when there was hardly anyone there.

He has seen people give up but his advice is to be “open and honest with your GP, 100% about everything”, as help can be found for many challenges in dementia care. 

Mr Quaid is chair of the Irish Dementia Working Group and a strong supporter of the Alzheimer Society of Ireland (ASI).

The day he met a dementia adviser changed his attitude to what can be a frightening diagnosis, he said.

However, the ASI warned on Thursday of uneven access to these vital supports across the country.

It has just 29 dementia advisers. Last year these adviser saw 4,607 new clients, a rise of 12% on the year before, with this year’s figures already 6% ahead of last year.

In its pre-budget submission ASI called for increased investment in services, research, and staffing.

“The ASI is unable to meet current demand for day care, day care at home, and dementia adviser services,” it warned.

It has 53 day centres but identified 11 regions where there is either limited or no access to day care. An estimated €600,000 is needed to fill the gap.

It wants €5.5m invested overall in dementia care through Budget 2025 “alongside critical social protection, policy and workforce planning”. 

Breda Twohig, its southern centre operations manager, is based in Bessborough, Cork.

A key issue, she said, is the growing number of people younger than 65 diagnosed with some form of dementia.

“At Bessborough [day centre] we have 22 clients a day and we want more people to know about it; we want to get out to as many people as we can,” she said.

This centre includes an activity hub for younger people, which she hopes from September can offer art, pilates, and other classes.

I don’t want people to think ‘if I am diagnosed at 55 or 54 my life now is over; I’m going into a nursing home’.

“We want to lose that stigma. People can play tennis, go and play golf. We take other clients down to Mahon Point. The stigma still needs to be lifted,” she said.

The ASI also places carers into people’s homes. It called for €1m for dementia-specific day care at home services, to expand this to 250 more families.

Staffing this service is a challenge, Ms Twohig said.

We are struggling to get more carers, especially in Cork city. We are having a recruitment day next Thursday in Mahon Point, from 11am until 3pm.

Nuala Paley’s husband Gerry was diagnosed with young-onset Alzheimer’s disease in 2017 at the age of 63. She retired to become his full-time carer.

“I meet other carers at meetings, and I know how desperate some people feel,” she said.

“The day care at home service has made a huge difference to me and Gerry. 

“It gets rid of a lot of stress and worry, even just to know that there’s someone around; it’s great and it gives us both a bit of independence.”

He is supported by carer Lorna Doyle in doing a range of activities. 

“I love seeing Gerry heading off for coffee or playing a game of Scrabble with Lorna; it brings him so much joy,” she said. 

She says this service should be available everywhere. “That’s what we want for other people affected by dementia — support to help them live their lives and do what they like doing every day.”