Dementia Australia is calling on the Government of Victoria (in collaboration with the Commonwealth Government) to systematise and customise palliative and end of life care for people with dementia in a discussion paper released 30 October, at an event hosted by Parliamentary Friends of Dementia.

Maree McCabe CEO Dementia Australia said in the end of life stage, people with dementia face frequent hospitalisations and may be given unnecessary procedures and treatment.

“They can be unsuitably admitted into acute beds in unfamiliar and stressful settings where staff do not have the capacity or the specialised training and skills to recognise and provide tailored palliative care for people with dementia,” Ms McCabe said.

“As a result of this, people with dementia end up being caught in a cycle of transfers from home to hospital to residential aged care and back to hospital.”

Kim Gould who cared for her mother who had Lewy body disease, a form of dementia, said her mother was described as ‘non-compliant’ in a hospital because she didn’t want eye drops on one occasion and the label travelled with her on her file from home to hospital to residential aged care.

“In the aged care home for five days my sister and I tried our best to make our mother comfortable but we had had no experience of someone slowly dying,” Ms Gould said.

“It took two days for moistening swabs to be provided and four days before the introduction of effective pain relief.

“I am haunted by the images of my mother suffering and the never fading feeling that I had contributed to my mother’s discomfort, pain and suffering.”

“While we acknowledge the contextual complexities of dementia care within the different health care and community settings, it is essential that streamlined services are developed and accessible for more effective home and community palliative care experiences,” Ms McCabe said.

“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.”

The paper, ‘Dying well: Improving palliative and end of life care for people with dementia’, indicates in Australia that palliative care services for dementia are inconsistent in the way they are delivered.

“The system lacks equitable service provision, and the services provided lack unified standards and accepted definitions,” Ms McCabe said.

“Improving palliative care for people with dementia, no matter where they live, must be a policy priority, Australia-wide, across the states and territories.

“Families and carers frequently report feeling stressed and confused about accessing end of life care services, and feel guilt and pressure to make immediate decisions for their loved ones.”

The paper calls for more education and support to encourage the creation of advance care plans for people diagnosed with dementia to be paramount. It emphasises the need for the planning and communication with health professionals and family about the plan, to occur early – at the point of diagnosis, considering the nature of cognitive decline that occurs with disease.

“Increased awareness and development of advance care plans can have a remarkable influence on easing the stressful decision-making required later on when a person with dementia is unlikely to be able to decide for themselves,” Ms McCabe said.

Ms Gould said for her mother documenting and discussing her preferences on how she wished to be treated near the end of life was important to provide her with some peace of mind about her future.

“If I had not had many discussions with my mother regarding her wishes and if we had not set up the medical enduring power of attorney, I know her care would have been worse.

“I was empowered by my mother’s wishes to fight for the care she wanted and deserved.”

The paper is available online at www.dementia.org.au with other Dementia Australia discussion papers or directly through this link.