When Graham Gilmore developed some memory “hiccups” in his late 50s, his wife, Imelda, reasoned that all would be fine once he retired at 60.

Retire he did, but by the time Graham turned 61, it was apparent there was something seriously wrong; he and his wife had many deep discussions about what the future might bring. By age 64, he had a diagnosis of Younger Onset Dementia.
Now in his late 60s and living in an aged care facility, he is entirely dependent and prone to falls and respiratory illness.

Imelda Gilmore described her husband’s experience this week at a forum at the University of Technology Sydney which posed the question, “What is needed to improve care planning for people living with dementia?”.

She and other panel members identified clear and candid communication, family case conferences, education and attitude, and appropriate care – right time, right place, right person – as critical elements of better dementia care.

Dementia care experts emphasised the importance of having an advance care plan – ideally drafted before diagnosis, but at least as soon as possible afterwards. General practitioner Dimity Pond, a professor at the University of Newcastle, said advance care plans were “not just for the over-70s” and she recommended people keep copies “in their wallets, at the front door, with relatives”.

The forum was chaired by Jane Phillips, Professor of Nursing (Palliative Care) at UTS, and held to coincide with National Palliative Care Week. Professor Phillips said she had spent most of her professional life working in palliative care, with the aim of keeping people “as well as possible for as long as possible”.

An estimated 353,800 Australians are living with dementia, including about 25,000 people with Younger Onset Dementia (a diagnosis made under the age of 65, including people as young as 30).

UTS Professor of Palliative Medicine Meera Agar, who led research that developed national recommendations on dementia care, said all aspects of a person’s life – from the medical to the legal and financial – needed to be considered in patient assessment and care delivery.

“Health professionals should not ask ‘what do you want done for your mum?’; they should ask, “what would your mum want at this point?’,” said Professor Agar.

She said family case conferences needed to be scheduled when a critical trigger point arose, rather than held as an annual review, and should be led by a skilled facilitator. The family should be included in setting an agenda ahead of time, decreasing stress and angst on the day of the conference and ensuring even the trickiest topics were raised.

Dr Pond said more GPs needed to embrace psychosocial care as well as medical care and routinely include family members and the broader community in their conversations.

Other forum participants also emphasised the importance of designing care that takes account of the needs and desires of people with dementia:
• The rights, values, beliefs, history, likes and dislikes – all the things that make people human and unique – should dictate how we provide care. Who is this person? What is it that makes them tick? – Professor Lynn Chenoweth, UNSW Centre for Healthy Brain Ageing
• People with dementia continue to experience their world. There is a stigma about what people with dementia can and can’t do. – Craig Sinclair, psychologist, University of Western Australia
• Communication, communication, communication. Unfortunately, the least used medical instrument these days is the telephone. – Professor Sue Kurrle, University of Sydney
• The palliative approach toolkit addresses the question “how do you know what to do when?” through advance care planning, case conferences and an end of life pathway. – Professor Deborah Parker, Western Sydney University