There are approximately 64,000 people with dementia in Ireland, around 2,100 of them in Wexford. The latest projections are that these figures will more than double in the next 20 years with an estimated 150,000 diagnoses nationwide by the year 2045. There is no known cause of the condition, no cure, and anyone can get it, even those in their thirties and forties.
iven the scale of the issue, the sheer numbers involved, the focus within our health services has turned to improving the lives of those living with dementia and Alzheimer’s, ensuring their diagnosis doesn’t define them and they can continue to live at home, and live happily, for many years after.
Mary Conroy Thoms is the homecare coordinator in Wexford for The Alzheimer’s Society of Ireland (ASI) and heads up a team of carers committed to the needs of dementia and Alzheimer’s sufferers across the county, a team which establishes links and ties with not just those living with a diagnosis, but also their family members. Once that diagnosis has been made, once the individual has met with their GP, their specialist, consultants and clinicians, they are referred to Mary and her team.
“We go into the home for an assessment, we meet the individual, the family, and we go through all their medical history,” explains Mary. “We do an environmental risk assessment of the home, is there steps outside; an open fire, safety issues. When we’re finished we put together a care plan which is all about the individual needs of the person, there’s no two people the same, everyone is different, you’re looking at their interests, do they need support with nutritional intake, personal care. By the time they come to us they’ve already been through the system, on a emotional level there’s already systems and supports in place, we’re more the practical side of it.”
Yet that practicality extends to engaging with their clients’ activities and pastimes, spending quality time with them, working to ensure minds stay active.
“We have the reminiscing programme ‘This is Me’ where they reminisce about their earlier days, their family, their friends, where they travelled, where they worked, and it’s surprising, it can prompt them to talk about their life,” says Mary. “You’re also looking at their current interests, what they’re engaging in; a family member might say ‘oh they don’t read a newspaper any more, they don’t watch television, they might prefer to go for a walk’, but the main thing is that the dementia is not defining a person’s life, you’re looking at them as a person as opposed to the diagnosis. The big thing for us is maintaining their life in their own home for as long as is conceivably possible.”
Cathryn O’Leary, who is from Ballyduff, is the National Community Engagement Manager for the ASI, and develops programmes designed to make local communities more accessible for people with dementia, One such programme aims to bridge the gap between secondary school students and the older members of their community.
“We’ve created a dementia-inclusive schools programme for secondary schools,” says Cathryn. “The statistics show that roughly one in three students of transition year age will have someone in their lives with a diagnosis of dementia, it could be a parent, a grandparent, a neighbour, aunt or uncle. We wanted to create an environment where young people are happy to engage with people with dementia, to understand what’s happening, why it’s happening, why their loved one doesn’t know who they are, even though they did the day before. It’s about helping them understand what’s going on with the person and also to help them deal with that.”
To date, 50 schools have taken part in the programme, including five in Co Wexford: Gorey Community School, Ramsgrange Community School, Meanscoil Gharman, Bunclody VEC, and the Presentation College Wexford.
In addition to educating and informing others of the condition, Cathyrn and her team create programmes which tap into the memories of their clients, encourage them to cast an eye to their youth, to their past lives.
“We have another programme called ‘Sporting Memories’; you don’t have to have been involved in sports to take part, it could be someone who supported Wexford all their lives but aren’t able to go to matches any more,” Cathyrn says. “We want to encourage clubs in the communities to re-engage with those people and get family members to bring them back in.
“If you have someone living with dementia and you start looking at old photos the memories come flooding back, I did a programme with the Na Fianna club in Dublin and there was one man there who had been diagnosed with dementia three years previous and for whatever reason he didn’t get signposted to anyone. Within a week we had him linked in with the dementia advisor in the local area, he’s starting to go to dementia cafes now, social gatherings for people with dementia, and I recently got a message from him saying it had been life-changing for him.”
The overarching message from both Mary and Cathyrn is that a diagnosis of dementia or Alzheimer’s need not spell the end, that their quality of life does not instantly decline. However, neither woman are oblivious to the trauma a diagnosis can cause.
“It’s frightening,” says Cathryn.
“And not only for the individual but for the whole family, people can be diagnosed as early as 30, it’s not just over 65, so it can have a major impact,” adds Mary.
“People can live for many, many years (after diagnosis), it’s all about making them understand life is not over, you live with a diagnosis, it doesn’t rule you,” Cathyrn continues. “68 per cent of people with dementia live in their own communities. We want to keep it that way.”
Why is the condition becoming more prevalent though? Why are those figures expected to increase exponentially in the coming years?
“People are living longer, there are a lot of other explanations but the answer is we don’t know,” admits Cathryn.
“Some people may have gone undiagnosed for years,” Mary adds. “In the family unit in Ireland the elderly were looked after within the family unit, that’s changing now, people are working, both parents, I think in the earlier years a lot of it went undiagnosed. There’s no known cure but you can improve quality of life. And people can have a good quality of life.”
But without reaching out for help, availing of the services on offer, that quality of life may slowly decline over the years.
“Our job is to be positive about it, be positive for them, give them an understanding of what can happen, the supports available; and remind them life doesn’t just end, that their condition doesn’t define them,” Mary says.