Guidance documents on Palliative Care in dementia launched by School of Nursing & Midwifery and Irish Hospice Foundation (IHF).

Photo L to R  Project Team

Dr Catherine Buckley, Dr. Nicola Cornally, Dr Kathy McLoughlin, Dr. Joan McCarthy, Dr Suzanne Timmons, Dr. Irene Hartigan, Dr Alice Coffey, Dr. Elaine Lehane.

A suite of guidance documents for healthcare staff to enhance palliative care for people with dementia was launched at University College Cork. The seven Irish Hospice Foundation (IHF) guidance documents are designed to support healthcare staff in addressing specific aspects of dementia palliative care in all care settings.

Recent research conducted in Ireland by the IHF estimates that each year only 20% of people with dementia die in their own homes. The documents were developed as part of the Irish Hospice Foundation’s Changing Minds: Promoting Excellence in End-of-Life Care for People with Dementia programme, funded by Atlantic Philantrophies. These documents were developed in collaboration with University College Cork to fill an identified gap in practice guides for people providing palliative dementia care.

Senior lecturer, Dr. Alice Coffey led the overall team of researchers at the Catherine McAuley School of Nursing and Midwifery at University College Cork to produce the most recent four of the new guidance documents. Each of these guidance documents was led by an academic staff member with a keen interest in the guidance area in partnership with their clinical colleagues:

- Medication and dementia: Palliative assessment and management (Dr. Elaine Lehane)

-Pain assessment and management (Dr. Nicola Cornally)

-Management of hydration and nutrition (Dr. Irene Hartigan)

-Ethical decision making in end-of-life care and the person with dementia (Dr. Joan McCarthy)

Dr Coffey said: “The purpose of these guidance documents is to support healthcare staff in delivering excellence in end-of-life care for people with dementia. The guidance will also assist all caregivers in understanding the palliative care needs of people with dementia. Ultimately, the benefits will be to the person with dementia and to their care and comfort.” Broadcaster Valerie Cox, who spent two years studying for a Master’s Degree in End-of-Life Healthcare Ethics at University College Cork, launched the documents. Ms Cox said: “These guidance documents are an excellent resource for professionals in all care settings and for caregivers of persons with dementia. There are fact sheets highlighting key points to guide practice. The guidance provided is up to date and evidence based.”

The guidance documents consider all stages of dementia and include consideration of all people impacted by dementia including young people with dementia and people with intellectual disabilities. The initial 3 guidance documents developed by the IHF were in the areas of

·         Facilitating discussion on future end-of-life care with a person with dementia.

·         Advance care planning and advance health care directives with a person with dementia.

·         Loss and grief in dementia.

Case studies have been developed for the guidance documents representing scenarios that occur in clinical practice. While recognising that each person should be cared for on an individual basis; the case studies act as guidance to healthcare staff on ways to respond in certain situations for example when a person with dementia is experiencing loss and grief. Some case studies have been developed as a guide to illustrate the advance care planning process and the role of advance healthcare directives in practice. The guidance documents are available on-line to download and can be accessed here:  Hard copies of the fact sheets can be obtained by contacting: Deirdre.shanagher@hospicefoundation.ie

Project Team and Invited Speakers

Back: Dr Irene Hartigan, Prof Bridie McCarthy (Chief DON of South South-West Hospital Group), Dr Kathy McLoughlin, Ms Deirdre Shanagher (IHF), Dr Elaine Lehane,

Front: (Left to right): Dr Joan McCarthy; Dr Catherine Buckley; Prof Eileen Savage; Ms Marie Lynch (Head of Health Care Programmes, Irish Hospice Foundation); Mr Tadgh Daly (Chief Executive at Nursing Homes Ireland), Dr Nicola Cornally; Ms Mary Manning (HSE Director and National lead for Dementia). Dr Alice Coffey (Project Lead); Ms Valarie Cox (Broadcaster).