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People with dementia must have say in care: panel

Advance care planning (ACP) for people with dementia must focus on the individual with dementia and a new approach is needed to ensure their voice is heard.

These were key points experts raised during a forum on the topic, held in Sydney earlier this month.

The event also launched a new report from a national project that aims to improve the quality and uptake of ACP for people with dementia.

The research, conducted by the Cognitive Decline Partnership Centre and HammondCare, put forward seven key recommendations to assist in developing a national model for ACP for people with dementia and other forms of cognitive impairment.

Researchers conducted a review of literature and interviewed more than 80 people, including people with dementia, carers, health- and aged-care providers, academics and government officials. The recommendations delved into areas such as timeliness and what ACP should cover.

Project lead professor Meera Agar, from HammondCare and the University of Technology Sydney, said the report highlights the need to focus on empowering people with dementia and their families to have conversations about their values and wishes.

“It’s also important to have a health professional workforce who are highly skilled and place value on supporting these discussions,” Agar said. “Our research also shows it is imperative that better systems and training are put in place to ensure anyone who is involved in the care of a person with dementia inquires about earlier discussions, involves the person as much as possible, and respects these wishes when decisions about care need to be made.”

Panelist professor Lynn Chenoweth, from the Centre for Healthy Brain Ageing at the University of New South Wales, said people with dementia are often denied the opportunity to make care decisions for themselves.

“Often the reason for that is because the discussions are held far too late,” she said. “Instead of speaking with the person about these important matters of their life when they're first diagnosed with dementia or [when]the family becomes aware that something is going on, [it’s] often left to the very last moment, when a person enters either a residential care facility or they end up in hospital because of some acute condition.”

Chenoweth recommended holding conversations around advance care planning early.

The seven key recommendations spelled out in the report include:

  • ACP should cover an extended period of time and include a wide range of issues
  • Individuals should receive a timely diagnosis of dementia and information about the potential prognosis
  • ACP should be done as soon as possible after diagnosis of dementia, if not done previously
  • Effective ACP requires conversations that focus on understanding a person’s values and beliefs, and what is important to them
  • The appointment of one or more substitute decision-makers is critical
  • They should be involved in discussions and decision-making as much as possible
  • Particular care is needed with transfers between health and care settings
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