The Irish Hospice Foundation research estimates that 2, 310 people with dementia die in residential care settings every year. A further 1,680 die in acute hospitals.
But the national charity estimates that only 210 people with dementia die in their own homes.
“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 there wish,” IHF Head of Health Care Programmes Maire Lynch said.
She added: “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 with in their local communities.
“However the needs of people with advanced dementia are not often discussed and little is known about what supports people with dementia need to enable them to live well and die well in their own homes.”
It’s estimated that the IHF’s Nurses for Night Care Service reaches about half of the dementia patients who die at home every year.
The IHF noticed an increase in referrals of people with dementia to the service in recent years. It carried out an audit of the 52 people with dementia referred to the service over a six month period in 2015.
In over half of the cases the decision to die at home was made in advance by the person with dementia or their families.
The average age of people with dementia cared for by the programme was 81. Almost three out of four lived in their own home and one in four were living with a family member.
Two out of five of the sample reported that having a supportive GP was essential. GPs carried out weekly home visits to 63 per cent of people in the sample.
Three out of every four families were providing 24 hour care to the person with dementia in the home. Many families were supplementing home care packages using personal income and 7 per cent of families were paying for live-in 24 hour care privately.
There were a higher number of females supported to die at home – 74 per cent – than males. The care recipients’ homes were evenly divided between urban and rural locations.
The IHF study found 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.
Having a supportive GP who discusses preferences with people about their future and end-of-life care, shares this information and is flexible in relation to providing home visits and telephone support also improves the likelihood of someone with dementia achieving a home death.
The availability of family and friends to provide care to the person with dementia in their home is one of the most significant factors in achieving a home death.
Based on the findings of the audit the IHF is now calling on healthcare workers and service planners to support more people with dementia to die well at home.
In a series of recommendations the IHF is calling on healthcare workers to create early and repeated opportunities for people with dementia to engage in discussions about their preferences relating to their future and end-of-life care.
It is calling on GPs and Out-of-Hours Services to continue to provide flexible home responses for people with dementia.
It is pledging to advocate for incentives which would facilitate GPs to carryout home visits for people with advancing life-limiting illness, including those living with dementia who wish to die at home.
It wants the HSE to continue to fund home care packages that responds to the needs of people with dementia and enable them to be cared for and die at home.
A recent IHF poll showed that three quarters of people would like to die at home but only about one in four people do.
The IHF estimate on the overall number of people with dementia who get to die at home in Ireland is extrapolated from UK figures.
The new study – Supporting people with dementia to die at home in Ireland – is published by the Irish Hospice Foundation.
Note to Editor: Nurses for Night Care Service has been funded by the IHF for people with conditions other than cancer since 2006. The service enables people to receive expert care, support and reassurance at night time in their own home during their final days. The number of people with dementia referred to the service has increased by approximately 30 per cent every year and 118 referrals were received in 2015. It’s estimated the Nurses for Night Care Service will cost €700,000 this year and will support over 700 people to die at home.