Supporting people with dementia and their carers at end of life: The Nightingale Program

This article is part of our showcase of the 2020 Future of Ageing Awards. Dementia Australia’s Nightingale Program was awarded highly-commended in the Palliative Care category.

When people living with the advanced stages of dementia need care – or their carers require more support – the Nightingale Program can step in with a specialised palliative care service that few can provide.

The South Australian program, operated by Dementia Australia, delivers the only dementia-specific end-of-life care in the country.

It offers nursing and social supports to those living with the terminal condition and their families through a person-centred and nurse-led approach.

In a submission to Inside Ageing’s Future of Ageing Awards, a spokesperson for the Nightingale Program said there was a significant need for a specialised program for people living with dementia to access palliative care services.

“Many people, including health professionals, do not understand the terminal nature of dementia and therefore do not seek out end of life support or palliative care services,” they said.

“Additionally, there is a lack of clinicians with expertise in both palliative care and dementia care. This results in significant missed opportunities to identify the end-of-life stage, to work through future planning and to discuss the complexity of symptoms experienced in dementia.”

Through the Nightingale Program, people living with dementia are assisted to remain independently in their homes for longer, have a voice in their future care options, avoid unnecessary hospital admissions and gain clinical advice on pain, delirium, incontinence and palliation.

Nurses work with individuals and families to give specialised assessments and advice on clients’ current and future needs, including consulting on advanced health directives. They provide a single point of contact who understand dementia and can help navigate the health system.

The program was founded in 2016 following demand from Dementia Australia clients. Founded by the Rosemary Foundation for Memory Support, consumers do not pay to access the service.

Referrals come from a range of sources, from the National Dementia Helpline, to medical, nursing and allied health professionals, friends and families of those affected, and community service providers.

The client is assessed at the outset using the Functional Assessment Staging Test and the Abbey Pain Assessment.

The Nightingale Program is focused largely on those who are experiencing the final two stages of dementia, when people’s functioning can progress from difficulty in dressing oneself to an inability to hold up one’s head.

Dementia Australia says it “fills the gap in the current models of care” and reduces hospital admissions.

“We have identified that people at [the stages six and seven of dementia] are the most underserved and most at risk of needing specialist palliative care,” they said.

“Through a flexible approach, best practice care interventions are used, which upskill and empower families and carers.

“No two people or circumstances are the same. The approach to care needs to be flexible, dynamic and directed by the person living with dementia and their families, with respect to their goals, personal preferences and religious and spiritual beliefs.”

One of the key features of the program is an emphasis on identifying and managing pain. Nurses can educate carers to better recognise symptoms and triggers of pain and respond to its presence.

“It is often observed that once pain is managed, symptoms such as agitation, pacing, loss of appetite, impaired sleep and reluctance for care, improve,” they said.

But the service is also focused on providing longer-term care than the standard palliative period of four weeks.

Given the complexity of dementia, the Nightingale Project seeks to assist individuals and carers throughout that journey.

“Most palliative services only look at the last months of life and will discharge anyone not actively in the terminal stages,” they said.

“As this is so variable in dementia, there is great value in a clinical service that can provide ongoing support throughout the end stages of life (FAST scale stage six and stage seven) to ensure that each person is supported in their end-of-life choices, including place of palliation.”

For further information contact Dementia Australia:

Entries are currently open for the 2021 Future of Ageing Awards


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