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Comfort, choice and peace - a dementia palliative care program

The Nightingale Program is Australia's first speci
Photo: Comfort, choice and peace - a dementia palliative care program
For Jayne Littledike, working as a Clinical Nurse Consultant for Dementia Australia’s Nightingale Program has been her most professionally and personally fulfilling role, allowing her to empower patient choice when it comes to end of life care.

The program is unique in being an innovative nurse-led program, which was developed to improve planning opportunities and enable early access to a palliative approach for dementia patients and their families.

“There was one client who was referred to our service for end-of-life care. He was living at home and his health had declined rapidly following an infection.”

“He wished to die at home, but his family needed support to care for him,” Ms Littledike told HealthTimes.

“The Nightingale Program team provided support and information to the client's wife, including education around what to expect in the final weeks and days.”
“In a short space of time, the team liaised with multiple service providers to arrange appropriate equipment to assist with care and increase the client’s comfort, and to arrange other support services and supplies.”

“The man and his family wanted him to die at home – and this was achieved.”

“He died at home very peacefully. His family understood what to expect and they were with him.”

At the Nightingale Program, the ultimate goal is to effectively support the choices of people living with advanced dementia and their families through holistic and practical support.

For Faye Green, whose mother lived with dementia for several years before passing away in 2014, her family would have appreciated having access to the Nightingale Program.

“Before dementia, mum had always said that she wanted to die at home, in her own bed.”

“But sadly, she didn’t. She passed away in hospital. I wish it could have been different. I so wish we all could have been at home with her, where she wanted to be.”

“We just didn’t know how to make it possible, with everything else that was going on”, said Ms Green.

“It’s great that more people are having these talks with their loved ones about their end-of-life goals, and that as a community we are having more conversation around palliative care”

“But if families don’t know how to achieve these wishes, or don’t know what dementia-specific resources are available and how to access them, it’s really hard”, Ms Green added.

The Nightingale Program is now demonstrating how this key gap in dementia care can effectively be filled. 

“This is the first specialist dementia palliative care program in Australia providing dementia-specific education and clinical support to people living with dementia, their families and carers in South Australia”, Ms Littledike said.

“We aim to enable choice and proactively support people living with dementia, their families and carers.”

“The program recognises the importance of wellbeing and personhood of people with dementia within a model of palliative care”, Ms Littledike explained.

“We provide specialised nursing support which is free and does not impact on any other support the person may be receiving whether this be in the community, residential care or in an acute care setting.”

Ms Littledike said that professionally and personally, her involvement with the Nightingale Program has been tremendously fulfilling.

“My time in the [the program] has been my most personally and professionally fulfilling clinical role.”

“I love the autonomy and scope of practice that a nurse-led service can offer and particularly enjoy working closely with my clients and their families living in the community who choose to remain at home through to the end of life.”

“The complexities that are overcome and the relationships that are formed through strong partnerships with these clients have been life-changing”, she said.

Funding for the Nightingale Program in South Australia is provided by the Rosemary Foundation for Memory Support Inc (Trustee for the Rosemary Charitable Fund), an independent registered charitable fund supporting people with dementia in South Australia.

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Charlotte Mitchell

Charlotte is a published journalist and editor, with 10 years of experience in developing high-quality content for national and international publications.

With an academic background in both science and communications, she specialises in medical and science writing. Charlotte is passionate about creating engaging, evidence-based content that equips the community with important information on issues around healthcare, medicine and research.

Over the years, she has partnered with organisations including the Medical Journal of Australia, Cancer Council NSW, Bupa, the Australasian Medical Publishing Company, Dementia Australia, MDA National, pharmaceutical companies, and state and federal government agencies, to produce high-impact news and clinical content  for different audiences.