The Irish Hospice Foundation (IHF) guidance documents are designed to support healthcare staff to improve palliative care for people with dementia.
They were developed by the IHF in collaboration with researchers at University College Cork to fill an identified gap in practice guidelines for people providing palliative dementia care.
Mary Manning, General Manager, National Dementia Office, HSE said: “It is my hope that these documents will bridge this gap so that all people with dementia in Ireland have access to appropriate levels of palliative care throughout their disease journey and their families and loved ones will receive the support they need.”
She added: “It is helpful that the guidance documents are relevant to all stages of dementia and are applicable to all care settings.”
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.
Ms Manning who spoke at the launch at UCC said: “The challenge now is to support the translation of these documents into practice so that people in Ireland can be assured their palliative care needs are addressed appropriately throughout their illness trajectory as well of course as the 4,000 people who die with dementia in Ireland every year.”
Irish Hospice Foundation, Head of Healthcare Programmes Marie Lynch said the palliative care needs of people with dementia are not easily or routinely recognised.
She said: “People dying from dementia – with or without other illness – are a particularly vulnerable group. They require staff to have knowledge, skills, competence and confidence in both dementia and palliative care.
“Providing this care and comfort can present services and staff with a significant challenge as each person’s journey through dementia is unique with changes in communication, variability in the final phase and lack of awareness about the terminal nature of dementia. While there is growing recognition of the complexities involved in this care there was a notable void in practice guidance for staff.
“These new guidelines will help to fill that void and help fulfil the IHF vision that no one should face death or bereavement without the care and support they need.”
Senior lecturer, Dr Alice Coffey led the team of researchers at the Catherine McAuley School of Nursing and Midwifery at University College Cork to produce four of the seven new guidance documents.
She 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.”
Dr Suzanne Timmons, consultant geriatrician, senior lecturer at the Centre for Gerontology and Rehabilitation at UCC’s School of Medicine said palliative care is a holistic approach to care that assesses and addresses all the needs of a person with a life-limiting disease, like dementia.
She said: “At the time of diagnosis, the need might be for information or support; later, the need might be for practical support to continue doing what’s important to the person, or relief of a bothersome symptom, or a chance to plan for the future. And at all stages, the person with dementia needs to be confident that, whatever their need, healthcare workers have the tools and guidance to best manage that need.
“This suite of guidance documents provides practical, evidence-based guidance on the assessment and management of common needs in dementia. Above all, the guidance documents promote communication and open discussion and planning for the future, which are all vital parts of palliative care. “
Broadcaster Valerie Cox who spent two years studying for a Master’s Degree in End-of-Life issues in UCC officially launched the documents.
She said: “I can not imagine the amount of work that went into these documents. They are absolutely amazing. I love the message they sends out; that all lives, whatever stage are valued, that there must be a respect and that capacity must be presumed, that there must be an autonomy centred perspective.
“This I would say to medics and carers. In caring for a person with dementia you go far beyond their physical needs, you are dealing with their soul, that inner manifestation of personhood, that place that remember the past, captures their dreams and their loves . You are in a position that can assist them in making those final choices in valuing their lives and restoring their dignity.”
Key areas were selected as a focus for the guides:
- 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.
- Management of hydration and nutrition.
- Pain assessment and management.
- Ethical decision making in end-of-life care and the person with dementia.
- Medication and dementia: Palliative assessment and management.
There are about 55,000 people living with dementia in Ireland with the number expected to triple to 132,000 over the next thirty year as the population ages.
Recent research conducted by the IHF shows that 4,200 people with dementia die in Ireland each year. About 2,310 people with dementia die in residential care settings in Ireland every year and a further 1,680 die in acute hospitals. But the national charity estimates that only 210 people with dementia die in their own homes.
The guidance documents are available on-line to download for free and can be accessed here
There is a fee payable for hard copies of the guidance documents. Hard copies of the accompanying fact sheets are free and can be obtained by contacting: Deirdre.email@example.com
The World Health Organization is currently holding a consultation process to develop a draft global action plan on the public health response to dementia. Despite the huge need, and the availability of strong evidence in support of palliative care for people with dementia, there has as yet been no mention of palliative care in the zero draft.
To participate in the consultation, visit the World Health Organization website and email Claire Morris, Worldwide Hospice Palliative Care Alliance Advocacy Director for advice at firstname.lastname@example.org.
This article was originally published on the Irish edition of ehospice.