Palliative dementia insight

Dementia palliative care: Professor Rod MacLeod says it's time for a rethink

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INTIMACY: "They want to feel skin-on-skin. That desire does not go away with dementia," says Professor Rod MacLeod.

INTIMACY: "They want to feel skin-on-skin. That desire does not go away with dementia," says Professor Rod MacLeod.

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'We need to get better at this'. Palliative care expert puts spotlight on dementia.

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NOW IS the time to rethink how we deal with people with dementia at end of life.

That’s the opinion of leading palliative care specialist Professor Rod MacLeod from Hibiscus Hospice in New Zealand.

He said the Royal Commission into Aged Care is a timely reminder to focus on what makes quality aged care – particularly the role of palliative care - in the care of people with dementia near the end of life.

“My primary message is this: When caring for someone, we must find out who they are. That is far more important than what is wrong with them.

EXPERT: Professor Rod MacLeod was speaking at a symposium organised by the Wicking Trust, managed by Equity Trustees, in Melbourne.Photo: Janie Barrett

EXPERT: Professor Rod MacLeod was speaking at a symposium organised by the Wicking Trust, managed by Equity Trustees, in Melbourne.Photo: Janie Barrett

“This means looking at the physical, psychological and social and spiritual needs of patients and families and how they can be met.”

Currently almost 50 million people worldwide have dementia, and that figure is predicted to double by 2030. New Zealand figures show there are now more people with evidence of dementia, than cancer, as the cause of death.

“I have been doing palliative care for over 30 years and dementia has only in recent years become recognised as a terminal illness. Increasing numbers of people will die with dementia,” said Professor MacLeod.

He said while palliative care aims to improve the quality of life for people with dementia, the real challenge is finding out what quality of life for each person might be.

“There are those in our society who think that if you are diagnosed with dementia it is your duty to “shuffle off” and allow resources to be diverted to such things as finding a cure for cancer in babies. That is because of fear.”

He said palliative care is applicable to everyone with a life-limiting illness and it should be person-centred and address family care and involvement.

“A challenge for those who have a friend or family member die of dementia is often there is a double whammy of bereavement,” he said. “There is often a social death and then a physical death.”

He said there needs to be conversations with families about preferred place of care, and death.

There are those in society who think if you are diagnosed with dementia it is your duty to 'shuffle off'. - Professor Rod MacLeod

He also thinks there needs to be recognition of the desire for intimacy.  “When I go and see people at their own home or in the wards I work in, one of the things they do most commonly is never let go of my hand...what they want is to feel skin on skin. That desire does not go away when you get dementia.”

He said there also needs to be support for funeral planning so the real person is represented in grief. “Finally we need to better support families and caregivers through the end of life for patients with dementia. 

“Carers experience high levels of stress, strain and burden. They are carrying around too much. We have to help them decide what bit of the burden they can put down.”

“The message is clear – we need to get better at this – it could be us.”

  • Honorary Professor in Sydney Medical School, Professor MacLeod was speaking at a symposium organised by the Wicking Trust, managed by Equity Trustees, in Melbourne.

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