Down Syndrome Ireland says the country is not equipped to handle a growing number of adults who have both Down syndrome and dementia, warning that families are being left to find their own way through a system that few people fully understand.
The charity's branch advocacy coordinator, Gina Grant, told RTE's This Week that Irish society needs to recognise how likely people with Down syndrome are to develop dementia as they get older. According to RTE.ie, she estimated that 85% of people with Down syndrome who live to 65 will go on to develop the condition.
Ms Grant said planning needs to start now, with families brought into the process rather than left to work things out alone. Ireland, she noted, has one of the highest rates of Down syndrome in the world.
Why it matters
The warning points to a demographic shift that Ireland's health and disability services have yet to absorb. Because medical care and services for people with Down syndrome have improved, many now live longer and more independent lives. But that progress has run into a hard barrier: Alzheimer's disease.
Dr Antoinette O'Connor, a consultant neurologist at the National Intellectual Disability Memory Service at Tallaght University Hospital, told RTE that the connection between Down syndrome and dementia is closer to a rule than an exception. She said changes linked to Alzheimer's disease begin developing in people with Down syndrome from around age 40, and that cognitive decline follows almost certainly by the time they reach 65.
That pattern, she explained, has placed a ceiling on life expectancy. While lifespans rose sharply over the past century, they have levelled off for people with Down syndrome over the last two decades and have not kept pace with gains in the wider population — a stall she attributes to Alzheimer's disease.
RTE.ie reports that more than 80% of people with Down syndrome in Ireland die with an Alzheimer's-related complication.
A system built around a different age group
Ms Grant said support for people with Down syndrome in Ireland is inconsistent, and especially thin for those who develop dementia. In her view, dementia is treated in Ireland as a condition of old age, which means services generally do not open up until after a person turns 65.
That cutoff leaves younger adults and their families with few options. The youngest person Ms Grant said she has met with both Down syndrome and dementia was 38.
She called on the Health Service Executive to do more, saying it needs staff who are reachable and easy to deal with, because families struggle badly when they go looking for additional supports. She also said responsibility for forward planning rests with local councils, the HSE and the Government.
One family's experience
RTE's reporting follows David Azzie, a man with Down syndrome who has started showing signs of cognitive decline. His condition has worsened since the death of his mother, after which he lived on his own for the first time.
His sister Bernadette Azzie told RTE she has seen a clear decline in her brother since the summer. Mr Azzie now receives two hours of home care on weekdays from Bluebirds, arranged on behalf of the HSE.
Ms Azzie and her brother's disability social worker have tried to secure more support without success. She said he does not qualify for mainstream services because he is too young, and that his intellectual disability adds further complications because no supports appear to exist for people in his position.
She described herself as being at the end of her rope, and said the help the family needs simply is not available. Ms Azzie and another brother visit David most days to keep him engaged and comfortable at home, but she said they do not know what the future holds for him.
According to RTE.ie, the social worker has raised the case with her manager and tried every route open to the family, without managing to obtain anything further.
Ms Grant said David Azzie's situation is becoming more and more typical within Ireland's Down syndrome community.
It is not known exactly how many people with Down syndrome live in Ireland, which makes planning harder still.
What to watch: whether the HSE, local authorities and Government set out concrete plans and age-appropriate services for adults with Down syndrome who develop dementia, and whether families like the Azzies see any change in the support they can access.
