SMALL acts of kindness can make a big difference to a person living with dementia, according to Limerick dementia advisor, Sean Donal O’Shea.
Mr O’Shea urges any family member who is caring for a person with dementia to contact their local dementia advisor.
He also believes a person should also contact their local general practitioner who will know the family and their circumstances.
“There is a dementia advisor in every county now. Six or seven years ago, there were only eight dementia advisors in the country. Now we have 31. This shows the Government is listening,” he said.
“I have been lobbying with the Alzheimer’s Society of Ireland since 2007. There was nothing in budget after budget. In the most recent budget, ringfenced dementia funding has been provided, which is very valuable.
“It is the small things that are the big things for a person with dementia. Covid-19 was an eye-opener for everyone when we were all locked in to five kilometres. All we wanted to do was to able to talk to our neighbour.
“Covid-19 gave the general population a glimpse of what it is like to be a full-time carer. The pandemic made no difference to the lives of a lot of family carers, they were isolated before and after Covid-19.”
Getting a diagnosis can take time.
“If anyone gets diagnosed with dementia tomorrow, it wasn’t yesterday they started displaying their symptoms. On average, it takes four years to get a diagnosis. It is all about being proactive rather than reactive,” he said.
“Often it is not dementia. People could be displaying signs of dementia but could have vitamin deficiencies or an underlying condition. It is important to link in with your local GP and start the process to see if there is dementia.”
Mr O’Shea was a guest speaker at the third monthly Killaloe Ballina Connect Dementia Café recently.
While official statistics say there are 64,000 people living with dementia in Ireland, Mr O’Shea estimates the true figue could be as high as 100,000 as thousands remain undiagnosed.
In 2006, Mr O’Shea mother was diagnosed with dementia at the age of 50. At the time, there was a terrible stigma associated with dementia. While Mr O’Shea believes society is more accepting of this condition, he feels there is still some way to go before the stigma no longer exists.
Decades ago, Mr O’Shea recalled people with dementia were wrongly locked away, which he believes is still in the minds of some elderly that create fear in terms of what might happen to them if they are diagnosed.
“Quality of life is the key. I believe a person can live well with dementia. It is all about early intervention making small changes to daily activities to make sure they can live as independently and safely as possible,” he said.
“There is memory technology that can help with that. A family can link in with me in my role as dementia advisor when needed. While I work with public health nurses, they look after newborns up to elderly and everything in between, whereas I am specifically dealing with dementia.”
Mr O’Shea has worked with Killaloe Ballina Dementia Cafe Coordinator, Aifric Devane for years, and both of them share a similar passion for supporting families living with dementia.
With a background in social care, Mr O’Shea acknowledges living with dementia can be isolating for a person so they need to know there is support from their family and in the community.
“We are chiselling away at the stigma surrounding dementia. I have dealt with people in their late thirties up to their nineties who have received a diagnosis of dementia,” he said.
There are things that a person can do to tackle dementia.
“Staying socially active is so massively important. When someone gets a diagnosis, often they withdraw,” he said.
“A person could be playing cards on Tuesday nights and then decide I will not go down because I could make a mistake now I have got dementia.
“If John goes playing cards and people know he has dementia, I can guarantee you he is not the only one playing cards who has dementia.
“Some people speak about dementia the way we spoke about cancer 30 years ago. It was the big ‘C’ and people were afraid of it. Unfortunately, we are not quite there yet.
“Some people with dementia have lost close friends because they have withdrawn and don’t know how to speak to them. You speak to your friends the same way you would speak to anyone.”
The HSE are trying to create dementia friendly communities across the country. They have provided dementia specific training courses for Irish Rail staff to help them deal with people who have dementia appropriately.
“Everyone can have a bad day. If a person living with dementia is having a bad day, it might have nothing to do with dementia. We have to be careful and show more understanding towards people with dementia,” he said.
“As dementia progresses, a person may need a small bit of extra help. If I go to a shopping centre and someone behind me says hurry on, I will be more reluctant to go there again and then my world is becoming smaller.
“It can be a vicious circle. Sometimes when people reach out for help they are at breaking point. Myself included. When I was caring for my mother, I thought I could do it all and didn’t need any help from anyone.
“No one gets stressed overnight. It could be six months or a year before you get burned out. Families need to reach out for support. Most of the phone calls I receive from family members there are tears.”
Healthcare staffing and staff turnover is a big challenge impacting families who are receiving support for a person with dementia.
Mr O’Shea believes that staffing in caring professions will continue to be an issue over the coming decade as it is getting more difficult to hire and retain staff in this sector.
Praising the services provided by the daycare centre, he insists that one of the best approaches is to establish a family rota as caring for someone with dementia should not be done by one person, which is not sustainable due to the risk of emotional burnout.
The Alzheimer Society of Ireland provide a daycare home service where staff go out into local communities to spend some time with a person who has dementia.
Mr O’Shea believes that the requirement to bring in support for personal care needs for a person with dementia can be delayed if they get adequate assistance socialising through social hours.
Ballina/Killaloe Connect Café is a free, supportive space for people living with or who are affected by dementia and Alzheimer’s, any person with a cognitive impairment, their family and friends.
Covering East Clare, parts of North Tipperary and East Limerick, it is hosted by Café Coordinator Aifric Devane on the last Tuesday of every month from 6.30pm to 8.30pm.
East Clare correspondent, Dan Danaher is a journalism graduate of Rathmines and UL. He has won numerous awards for special investigations on health, justice, environment, and reports on news, agriculture, disability, mental health and community.