Supporting people with dementia to die at home in Ireland
This study is an audit on referrals of people with dementia in 2015 to Nurses for Night Care (NNC), a service funded by the Irish Hospice Foundation for people with conditions other than cancer. It enables people to receive expert care, support and reassurance at night time in their own homes during their final days. The study focused on what enables people with advanced dementia to live well and die well at home, and was undertaken in the context of increased referrals for the NNC service. An audit tool, informed by a literature review, was developed and used to gather information by telephone from the Specialist Palliative Care teams on 52 people with dementia referred by the teams between June and December 2015. The study provides a profile of these people, the contribution of their families to their care and their use of home care services. Over half of the persons with dementia or their families had made the decision to die at home in advance. The literature review identified a range of factors that increase the likelihood of people with dementia dying at home: availability of family and friends to provide care; availability of additional income to supplement formal care; having none or one other co-morbidities; the person with dementia making the decision to die at home in advance and communicating this with their family. 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/telephone support to the family was identified as almost doubling the likelihood of a person remaining at home and having a home death. In this study, having a supportive GP was reported as essential by 40% of the sample, and GPs carried out weekly home visits to 63% of people in the sample. PHNs were involved in 77% of the sample, 70% were known to Specialist Palliative Care teams for less than one week. Access to home care packages, local services, access and early referral to Specialist Palliative Care services in the community increases the likelihood of a person remaining at home and achieving a home death.