The Irish Hospice Foundation (IHF) received a grant from Atlantic in support of a project to enable older people, including those with dementia, to live and die at home with dignity. One of the main outcomes envisaged by the programme is that palliative care for people with dementia will be prioritized, particularly for people living at home.
The cornerstone of this work was the Changing Minds Programme, which concentrates on ensuring that people with dementia have the best possible end of life experience.
Its focus is to support people with dementia to die well at home and to give them the means, choice, independence and peace of mind to be able to think and plan for their end-of-life themselves.
It does this by inter-weaving progressive practices from many of the IHF’s existing programmes (for example palliative cancer care) into dementia, as well as introducing innovate care models and resources into care settings and into the skills sets of care staff and care givers.
A further programme, Think Ahead, arose from a Forum on End of Life, a gathering of stakeholders, to support people to have more autonomy at their end of life.
On the Ground
The programme has already had quite a profound impact on the approach to end-of-life. The IHF has carried out an evaluation of 100 sites where the programme has been operating. As a staff member in one of those sites summed up “We do death differently now.”
The Assisted Decision Making Capacity Act 2015 formally recognised, for the first time, Advanced HealthCare Directives. The IHF and other groups are actively urging government to complete the necessary statutory instruments required to bring this Act fully into being.
The Impact on People
Prioritising End of Life Wishes
“Ireland does death well, we don’t do dying as well,” said Marie Lynch. Care givers and family in Ireland tended to avoid or were not trained to deal with people’s wishes, wills, or even pain because of dementia. However, the work of the IHF has begun to change this by treating end-of-life wishes as importantly as prevention and treatment of the disease.
Marie Lynch, Head of Healthcare Programmes, Irish Hospice Foundation