Is it possible to die well with dementia?
Most people think of dementia as progressively losing one’s memory.
What’s less well known and understood is that dementia is a progressive and terminal disease.
While people can live well with dementia for many years, it is a degenerative disease.
People living with dementia will experience differing symptoms that may worsen over time, possibly impacting their quality of life, and there is no cure.
Note – this story deals with discussions about end-of-life care. If this article brings up any strong emotions, or you would like support, please call us at any time on 1800 100 500. We are available 24 hours a day, seven days a week, 365 days a year.
Palliative care can enhance quality of life
In the end stages of dementia, most people will likely need total care or more frequent supervision.
It is also possible that palliative care will be needed.
Dying is a normal process, with palliative care offering a support system to help people to live their life as fully and as comfortably as possible until death. It also helps families to cope during the illness and in their bereavement.
Palliative care is specialised care and support, offering relief rather than curing a person’s symptoms.
While often viewed as preparing for death, palliative care is actually focused on enhancing quality of life.
For someone living with dementia, the goals of palliative care are the same as for anyone else facing a life-limiting illness:
- to maximise quality of life
- provide relief from pain and other physical symptoms
- to provide individualised psychosocial and spiritual care.
It is possible to have a ‘good’ death
For Trish, palliative care provided by Dementia Australia’s Nightingale Program allowed her husband Robert to have the kind of death he wanted.
“Robert was at home until the end, surrounded by loved ones, which is what he wanted,” she said.
“I’ve worked in aged care for many years, so I thought I knew what I was doing and I would be able to support Robert myself.
“But without the Nightingale Program I wouldn’t have been able to manage to keep Robert at home, where he wanted to be.
“I also received some amazing support from my GP who came out to do home visits and worked with the nurses from the Nightingale Program to make sure Robert’s needs were met.”
Trish describes Robert’s death as ‘reasonably good’.
“It was incredibly difficult losing Robert. But he was adamant that he wanted to die at home and I take a lot of satisfaction that I was able, with the wonderful help of the Nightingale Program, to give him that.
“My hope is that the Nightingale Program can be expanded nationally so that all Australians can access the wonderful support they provide.”
Advance planning is key to knowing your wishes in end-of-life care
Advance care planning is something Professor of General Practice Dr Dimity Pond encourages her patients to do.
“As a GP I really like it when my patients have an advance care plan,” Dr Pond said.
“It gives me direction as well, it’s not just for carers and the family, but also the health professionals.
“It gives you an opportunity to look at a whole lot of different aspects of end-of-life care. You may, for example, have spiritual needs you would like taken care of; it gives you that opportunity.”
Dr Pond says although she regularly sees the value of advance care planning, one patient living with dementia particularly demonstrated to her how it may help you to die well.
“I knew from discussing her desires in advance that she did not want to go to hospital,” Dr Pond said.
“When she was near the end of her life, living in residential aged care, she developed a severe chest infection.
“I knew then I could keep her in her room at the facility and give her medication there.
“She was actually much more comfortable and for four or five days she was peaceful in bed, sleepy a bit and waking up a little sometimes.
“Her more distant relatives came from interstate, the room was filled with flowers, the staff were very attentive because they knew her and really loved her.
“She ended up passing away surrounded by her relatives, in her own room.
“It was a very peaceful, wonderful way to go.
“If we compare that to having been sent to hospital with advanced dementia, not understanding what is going on, lights on all day and night, various tubes in place, and then being sent back only to go through the whole cycle again because she was at that stage.
“I think she instead had control over how she wanted to go. We were all completely comfortable with it as it was written down and we knew that is what she wanted.
“If we can all aim to have that kind of end-of-life experience, wouldn’t that be wonderful?
“We might not all be able to, but an advance care plan can help promote that.”
Is palliative care the right option?
Making the decision about palliative care and end-of-life care decisions can be confronting for people living with dementia, their family and carers.
A palliative care plan for the terminal stage of dementia will need to consider:
- any legal instructions the person may have provided at an earlier time, for example, an advance care plan
- what the person with dementia would have wanted themselves
- the person’s current and future quality of life
- the views of other family members
- the advice of medical staff.
For more information about what should be considered through a palliative care plan, please read our page on palliative care.
Dementia Australia’s Nightingale Program is a model of palliative care, provided by specialist nurses and occupational therapists. It is the only dementia-specific end-of-life care in Australia.
Established in South Australia in 2016, and soon to be expanded to New South Wales, the Nightingale Program is free and gives people living with dementia assistance to remain independently in their homes for longer, have a voice in their future care options and avoid unnecessary hospital admission.
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 Rosemary Foundation for Memory Support and Country South Australia Primary Health Network funds the service in South Australia.
Dementia Australia continues to seek funding to enable the Nightingale Nurse program to become a nationally available program.
For more information about palliative care options, including the Nightingale Program, please call us at any time on the National Dementia Helpline 1800 100 500.
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