Better end of life for dementia patients

International dementia expert Professor Julian Hughes has today called for a more person centred approach to end of life planning for people living with dementia.

During his visit to Melbourne as part of a national speaking tour for Alzheimer’s Australia, Professor Hughes, Consultant, Old Age Psychiatry, North Tyneside General Hospital, UK presented “International developments in ethical decisionmaking frameworks for people living with dementia” at Alzheimer’s Australia Vic’s ‘Who Decides? Dementia and Decision Making’ forum.

The series of lectures, supported by Bupa Health Foundation, has seen Professor Hughes discuss a variety of issues around Australia relating to the subject of end of life care.

“Unlike other chronic diseases, such as cancer, a person with dementia loses the ability to be directly involved in decision making at end of life because of loss of capacity,” Professor Hughes said.

“Dementia has a long and unpredictable trajectory that can make it difficult to know when palliative care services should begin.

“Advance care planning needs to be part of an ongoing, broad conversation between the person with dementia, the carer, the doctors and any other parties. This needs to happen from the diagnosis stage and as new carers or other key people become involved.

“The person with the diagnosis must be allowed to be involved in this planning as much as possible, for as long as they have capacity,” Professor Hughes said.

He also spoke of the need to ensure a framework is put in place that makes better use of, and encourages the development of advance care plans.

“As soon as a diagnosis is received the person living with dementia needs to start planning while they are still in the early stages of the disease,” Professor Hughes said.

“End of life is a topic that many people shy away from and don’t discuss until absolutely necessary. There needs to be more conversation about end of life care between people living with dementia and their loved ones.”

Alzheimer’s Australia Victoria chief executive, Maree McCabe, said that this tour would give people living with dementia and their carers, guidance to better plan for appropriate end of life care.

“People with dementia have specific care needs and it is our role to ensure their needs are met,” she said.

“Our hope is that Professor Hughes’ tour will prompt this important discussion between family members and carers as well as encouraging policy makers to think about the changes that are needed in health policy to ensure best quality end of life care for people with dementia.”

Dr Daniel Valle Gracia from Bupa Health Foundation said that as people grew older and their health deteriorated, it was clear their views on the type of care they want and need should be acknowledged and respected.  

“The need for better end of life care and a consistent approach to advance care planning is paramount in connecting care in Australia,” Dr Gracia said.