May 12, 2022

We all deserve a good death – especially people living with dementia

Dementia is a terminal illness and appropriate palliative care is an essential element of quality care and end of life care for people with dementia, and for their families and carers.

People living with dementia, their families and carers deserve specialist dementia support to plan for and manage their end of life with dementia.

While people living with dementia will unlikely to be able to communicate clearly at their end of life and we may never know how much they can hear, see, feel and comprehend at that time, we need to support them and include them in decisions about their care through the continuum of the disease right through to end of life.

People with dementia share with us they need to have confidence in the system and the people involved in their care because they know they may not have capacity at the end of life to express their wishes. They rely on their families, support networks and healthcare professionals to ensure they receive quality dementia care and experience a good death.

Caring for someone with dementia can be rewarding and emotionally, physically and financially challenging. Families and carers frequently report feeling stressed and confused as to how and where to access end of life care and services, and can feel pressured to make immediate decisions for their loved ones.

Dementia Australia is calling on all sides of politics to commit to a national dementia palliative care program modelled on an evidence-based, nurse-led model of palliative care already successful in South Australia.

The Nightingale Program is the leading specialist dementia palliative care program in Australia and with the support of a federal funding commitment could be expanded across the country.

I acknowledge the support of existing funders, The Rosemary Foundation for Memory Support and Country SA Primary Health Network Ageing Well in Place initiative.

The Nightingale Program clients have access to specialist nurses who provide palliative care strategies and advice to support those living with dementia and their families and care providers. There is a focus on promoting choice and well-being.

The specialist dementia nurses are trained to deliver a person-centred approach to enable people living with dementia to:

  • Stay at home longer and maximise their independence
  • Promote quality of life and positive relationships
  • Have a voice in their future care options and decision making
  • Avoid unnecessary presentations to acute hospital settings
  • Access clinical advice, including co-morbidity management, pain management, delirium and palliation.

The many benefits of the Nightingale Program include:

  • Specialist nursing advice
  • Comprehensive and holistic nursing assessment, which will identify current issues and anticipate changing needs
  • Referral to other service providers as needed
  • Continuity of care, offering a single point of contact for guidance
  • Advice provided in home, residential aged care, community and hospital settings
  • Consultation in the development of advance care directives for future health care needs
  • Education and emotional support to support family and carers
  • Interdisciplinary teamwork throughout the health and care networks.

I call on all sides of politics to commit to expanding this program nationally to ensure all Australians living with dementia are supported by staff trained and qualified to provide dementia-specific palliative care.

Improving palliative care for people with dementia, no matter where they live, must be a policy priority Australia-wide to provide peace of mind for the almost half a million Australians living with dementia and the 1.6 million people involved in their care.

Advocate Vern Marshall talks about why it is so important to have dementia specialist nurses

Hello I’m Vern, and my late wife Rosemary had Lewy body dementia until she passed away in May 2021.

Caring for a person with dementia be it spouse, partner or parent brings unique strains, stresses and challenge –  emotional, physical and often financial that are often not obvious to those who have not had a lived experience of dementia and dementia caring in their households.

Caring for a dementia patient in a sense means you are continually caring for someone who is both there and not there all at the same time. It can be socially isolating, as many friends and even other family members find it a highly emotive and confronting condition. 

Locating and navigating what support is available can be very challenging.

But most of all the condition smashes its way through the order and sensibleness of patients and family member carers upon whom it impacts. And sadly, often means that many dementia patients enter full time care prematurely. 

The National Dementia Palliative Care program, conducted through the Nightingale Program, means that dementia caring can be survivable and I commend it for serious support by the Australian government.

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  1. Q- My loved one was determined without capacity. He had a EPOA but no Guardian nominated. Did we need a Guardianship to place him in a Nursing Home or could the family have come together and made the decisions? And could we have acted on this until an actual Guardianship application was made?

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