Just one-in-60 families 'winners' in State's new dementia strategy
The Government's new national strategy on dementia addresses the needs of just one in every 60 families who are caring for a person with the brain disorder in their home, the Sunday Independent has learned.
Almost 50,000 people in Ireland have dementia. Of these, over 30,000 are cared for in the home, while the rest live in nursing homes.
Although the Government and Atlantic Philanthropies have pledged €27.5m to the provision of integrated dementia services, the bulk of the funding has been "specifically ear-marked" to just 500 people in need of intensive support at home.
Professor Suzanne Cahill, director of the Dementia Services Centre at St James's Hospital in Dublin, said the high-support provisions will only reach a fraction of families who require the home care services.
She told the Sunday Independent: "The winners are basically only a very small fraction of the overall 30,000 Irish people with dementia living at home and being supported by community care policy. From that point of view, it is disappointing for other people who aren't in these designated areas and are struggling to provide homecare with limited formal support."
According to Professor Cahill, the fortunate 500 families are, she believes, linked to areas with "well-known hospital overcrowding problems".
Although dementia is usually associated with people over the age of 65, Professor Cahill said younger people can get early onset dementia and that they too are the "losers" of this initiative.
"There is no specialist services or supports for the 4,000 people under 65 who have dementia in Ireland. They often remain undiagnosed, misdiagnosed or have real difficulty finding a clinician to talk to," she added.
"Other losers include those with advanced dementia as there is no ring-fenced budget set aside for them," she said.
In response, a spokeswoman for the Health Service Executive (HSE) said: "In supporting 500 people it is as a clear alternative to them being in long-stay care. The provision of intensive Home Care Packages (HCPs) is more appropriate than early admission to residential care."
Though there are significant numbers of people with dementia living in communities all over the country, the HSE said "not all of them are at risk of being admitted to long-stay care prematurely".
"Those that will benefit from intensive HCPs will be identified by clinical assessment and where it is clear that they are at high risk of needing residential care services," said the HSE official. Meanwhile, the HSE also revealed that 600 people are currently on the national placement list for the Nursing Home Support Scheme.
The provision of intensive HCPs is one of the main priorities of the National Dementia Strategy announced last December.
This package includes: additional home help hours, nursing services, therapy services, potential house adaptations, aids and appliances, frequent respite both in home and in nursing homes.
Other supports to be rolled out over the next three years include the upskilling of GPs and a focus on reducing stigma.
Although Professor Cahill stressed that the strategy is a "good start" reflecting the Government's commitment to the area, she is concerned about what will happen when the strategy ends in 2018.
"My overall feeling is positive and that things are looking up. The concern would be that funding is available now for a limited time and so what is going to happen after the three years is up?" she said, adding the impact of the policy "must be measured". Professor Cahill believes this week's World Health Organisation projections that most Irish adults are likely to be overweight by 2030 will have "further ramifications" for the looming dementia crisis.
"Obesity would be a risk factor for dementia. Smoking, hypertension and lack of exercise are all recognised as risk factors for Alzheimer's disease," she said.
Sinead Grennan, CEO of Sonas aPc, a charity dedicated to improving the quality of life for people affected by dementia, is also critical of the strategy's narrow reach. "Why is 80pc of the funding for the National Dementia Strategy going to intensive support packages for 500 families when a further 31,000 families are also caring for a person with dementia in the family home, often with little support?" she said, adding "8,000 more will have joined them by the time this strategy ends."
Ms Grennan is also concerned about the lack funding to improve dementia care pathways and community supports.
Consultant geriatrician Prof Des O'Neill, who co-led the first national audit of the quality of dementia care in Ireland's acute hospitals, this weekend called for the immediate upskilling of GPs and nursing staff involved in dementia care.
"The problem is now, not in the future. We need all nursing care to have a qualification encompassing dementia care in nursing homes and across adult care," he told the Sunday Independent.
He is also concerned about stigma created by negative language in media coverage of dementia.
Meanwhile, Professor Graham Stokes, global director of dementia care at Bupa, claims governments all over the world are "under-investing" in dementia care. After crunching Ireland's numbers, he said: "I'm not sure the strategy will make a dramatic difference to service provision in the years to come with dementia rapidly rising".
Over the next two days, Ireland's biggest dementia event, orgaised by Sonas aPc, will take place at the Crown Plaza Hotel, Santry in Dublin. It will explore issues, hopes and challenges faced by people affected by dementia.