New HSE dementia plan will 'give us a voice'
Charlie Drake, who has been living with dementia since 2019, said the plans can have “a major impact on the everyday life of people with dementia and of course the family carers”. Picture: Eddie O'Hare
The HSE has launched an "ambitious" plan for people living with dementia following concern at under-diagnosis and predictions that as many as 150,000 could have this condition by 2045 in Ireland.
Charlie Drake, from Mallow in Cork, has been living with dementia since 2019 and he is hopeful about the latest HSE model of care. “It will give us a voice and a say in how we would like our dementia to be managed,” he said.
“The model of care is based on the principals of citizenship and personhood and it will put the person with dementia at the centre as they live and journey on their road with dementia.”
He said the plans can have “a major impact on the everyday life of people with dementia and of course the family carers”. “A timely diagnosis offers the person with dementia time to plan for the future, and give us access to specialist services and supports,” he said.
He has received treatment from the memory resource room at Mallow Primary Healthcare Centre, he told the . However, despite his positive experience, the new plans are influenced by research showing “dementia remains hugely undetected and under-diagnosed in Ireland”.
The document quotes research in Cork and Dublin hospitals showing “only 36% of the people aged 70 and over with dementia admitted to hospital have ever received a formal diagnosis”.
HSE National Dementia Office clinical lead Dr Sean O'Dowd, who recently took over from Professor Suzanne Timmons, described the programme's response to these deficits as “quite ambitious”.
“There are targets around the diagnostic process, and there are targets around how a person has a diagnosis communicated to them because there is a lot of evidence that it has not always been done well historically,” he said. Other targets look to improve treatment after diagnosis.
“We would really expect to see the majority of these off the ground by the end of this year or early next year,” he said. The pathway starts with GPs, followed by Level Two services with plans for one service per 150,000 people performing 300 assessments annually.
“The Level Two services would be embedded in community settings nationally, and will be accessible to everybody,” he said. “They will see the majority of people with dementia, which is older people with memory problems.”
Two of the four Regional Specialist Memory Clinics are open catering for complex conditions, including people with early onset dementia or non-memory cognitive symptoms. Dr O'Dowd said centres in Cork and Galway “hopefully will be in a position to start seeing people by the end of this year, or certainly early next year".
It is expected the model will allow for the impact of pharmaceutical discoveries, including Lecanemab currently under review by the European Medicines Agency (EMA).
“From the pharmacological perspective, there is a lot of excitement now about the prospect of evidence-based disease-modifying therapies for early Alzheimer's disease,” he said. “We are all very excited about it, but at the same time it's something that will bring its own challenges to the healthcare system and to the dementia community more broadly.”
One challenge, he said, is early diagnosis so people can use these drugs safely. “We know that these medications are almost certainly coming,” he said.
“Two have been licenced by the FDA in the US, one of those looks very promising and it’s under review with the EMA at the moment.”
The model will receive recurrent funding through HSE national service plans and he said nine Level Two services are already funded. Recruitment “up until recently” was challenging, particularly for part-time roles, he said.
“We anticipate that is going to be very much evened out now in the next few months because there is a lot of appetite, I think, for people to get into dementia services with the security of whole-time permanent jobs, now the funding is there from the NSP and the Department of Health,” he said.
The Alzheimer Society of Ireland welcomed the plans, saying it ensures “people living with dementia are involved in the process of their service design".
A spokesman thanked the Society's Irish Dementia Working Group and Dementia Carers Campaign Network as well as the National Dementia Office and Minister Mary Butler, saying they "pushed for meaningful change".
However, he said: “A model can only succeed with meaningful funding, and a sound implementation plan will be critical.”
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