Only one in 20 dementia patients who die each year pass away at home, research by the Irish Hospice Foundation shows.
The IHF is now calling for more support for people with dementia to live out their lives in their own homes.
According to the research, of the 4,200 people with dementia who die in Ireland each year, only 210, about one in 20, die at home while 2,310 die in residential care settings, and a further 1,680 die in acute hospitals.
That contrasts with the one in four of the general population who die at home, which in itself is far fewer than the three out of every four who say they would like to die at home.
Maire Lynch, the IHF’s head of health care programmes, said the study raised questions about the involvement of people with dementia in plans for their final days.
“While we recognise that dying at home may not be feasible or desirable for everyone, more can be done to facilitate people at end-of-life to be cared for and die in their home if that is their wish,” she said.
“The needs of people with advanced dementia are not often discussed, and little is known about what supports they need to enable them to both live well and die well.”
The IHF’s Nurses for Night Care service reaches about half of the dementia patients who die at home each year, but demand for the service is growing.
An audit of 52 dementia patients who were referred to the service over the six-month period from June to December last year found families put enormous effort into caring for their loved ones to the end.
Three quarters of the patients lived in their own home, while the others lived with family members, and three-quarters of the families were providing 24-hour care to their loved ones.
Many families used personal income to supplement home care packages, and 7% were paying privately for 24-hour live-in care.
Retired pharmacist, Mona O’Riordan, died peacefully at home at the age of 92 in 2014 with her family by her side as she had wanted, and her daughter, Áine, said they felt lucky to have been able to honour her wish.
“She had a really good life and a really good death, in her own bed, in her own home. You couldn’t ask for better than that,” she said.
She said having a member of the Nurses for Night Care team with them was a vital resource in providing both medical expertise and support for the family.
“I’m not a nurse and I’d never been present at this stage of someone’s life before,” she said. “The nurse was wonderful. From the moment she arrived, she could not have been better. We knew she was going to mind our mother from a medical point of view, but she also minded us.”
The study found that having access and early referral to specialist palliative care services in the community almost doubled the likelihood of a person remaining at home and achieving a home death. The IHF has called on the HSE, GPs and service planners to be more responsive to the needs of those with dementia as they near the end of their life.
“With the publication of the National Dementia Strategy, there is a welcome emphasis on early diagnosis and establishing a dementia-friendly Ireland to enable people with dementia to live in their local communities,” Maire Lynch said.
She said the same effort should go into ensuring people could die in their community if that was their wish.
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