Palliative/End of life care

End of life and/or palliative care have only recently been highlighted in the context of dementia. In NI only one report was identified and this highlights the inadequacy of the current health and social care system. In ROI reports are generally related to relatively small scale projects but these range from efforts to build consensus on palliative dementia care, to developing guidelines for end of live care in long stay residential settings, supporting care home staff to engage in discussions on end of life with residents and developing a model of best practice palliative care interventions.

Supporting people with dementia to die at home in Ireland

The Irish Hospice Foundation
The Irish Hospice Foundation
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.

The Development of End of Life Care Standards for People with End Stage Dementia (Undated)


This report documents a study comprising two phases; phase one completed a qualitative enquiry into how 16 older spouse caregivers had experienced their spouses’ end of life care in a long stay care environment in ROI and NI.

Phase two involved the development and dissemination of draft guidelines to assist Nursing Homes to develop policies and practices on end of life care for residents. The draft guidelines were then amended based on feedback from health professionals based in both jurisdictions. Most spousal caregivers participating in the study were satisfied with the level of care received by their spouse. The draft guidelines focused on five key areas: person-centred care; good personal care; staff training; a partnership approach with the nursing home fully integrated into local health care systems; a shared approach to care.

Opening Conversations: Developing a Model for the Alzheimer Society of Ireland of best practice palliative care interventions for people with dementia and their families

MacConville, U.
Alzheimer Society of Ireland

This was a small-scale qualitative research project based in ROI that aimed to develop a model of best-practice palliative care interventions for people with dementia, integrating palliative care interventions into Alzheimer Society of Ireland service planning.

 Two key areas are the focus of the model: the transition from Alzheimer Society of Ireland services to long term care and end of life care.  The report produced by the Alzheimer Society of Ireland makes fourteen recommendations addressing: raising awareness; removing barriers to a clear diagnosis; providing a continuity of care; active management of the transition of care; addressing end-of-life care needs; and supporting family members and carers.

My Life until the End: Dying Well with Dementia

Lane, M.
Alzheimer’s Society (UK)

This report by the Alzheimer’s Society (UK) describes the policy landscape in England, Wales and NI relating to end of life and palliative care for people with dementia (see Living Matters, Dying Matters in the policy section of this review), summarises existing evidence, including examples of go

od practice and provides new evidence in the form of interviews with carers and people living with dementia. Seven key areas relating to dementia and end of life are highlighted as problematic: lack of public awareness and discussion about death and dying; provision of dignified care for people with dementia at the end of life; difficulty with communication affecting a person’s ability to articulate basic needs such as pain, discomfort, hunger and thirst; implications of the uncertain nature of dementia progression for planning palliative care including withholding and withdrawing treatment; little regard for emotional or spiritual support; differences in the quality of experience related to place of death - hospital, home, care home or hospice. The report concludes that the current health and social care system does not meet the needs of people with dementia at the end of life and makes a series of recommendations linked to the seven key areas listed above.

Building Consensus for the Future: Report on the Feasibility Study on Palliative Care for People with Dementia

Alzheimer’s Society, Irish Hospice Foundation
Alzheimer Society of Ireland

This report documents a joint partnership project in ROI between the Irish Hospice Foundation and The Alzheimer Society of Ireland that aimed to build consensus on palliative dementia care.

The report is set in the context of international and national policy, reviews examples of best practice, societal and service challenges and incorporates the perspectives of family members and health care professionals. A series of recommendations are presented thematically: services; education and training; research; policy and advocacy.

Planning for the Future Project Initiating End of Life Discussion with People with Dementia, Final Report Phase 1 (Undated)

Hayden, C., Parke, M., Lynch, M., Kelly, S.
Irish Hospice Foundation, HSE

This report produced by the Irish Hospice Foundation and the HSE documents the results of a joint project based in ROI between a residential care facility for older people and a specialist palliative care in-patient unit that aimed to develop a framework to support staff to engage in end of life

care discussions with residents.  The project took an action research approach and includes a series of planned actions to address: staff difficulties in initiating discussion; confidence in engaging with residents on this topic and on dealing with difficult situations; recording information gathered;  recognising the dying phase; finding clarity between palliative care and end of life care; supporting families.  A post project evaluation was completed six months later and a series of future action plans is included.