New approach needed so people with dementia can control their future

A national project aiming to improve the quality and uptake of advance care planning (ACP) for people with dementia has found a new approach is needed to ensure their voice is heard in decisions affecting lifestyle, financial issues, care and health.

The recommendations include that individuals receive a timely diagnosis, that ACP is done as early as possible and that it should cover an extended time period and range of issues. Full recommendations below. The research, conducted by the Cognitive Decline Partnership Centre and HammondCare, provides seven key recommendations to assist in developing a national model for ACP for people with dementia and other forms of cognitive impairment.

Empowering people with dementia

Professor Meera Agar, Palliative Care Physician and Academic, who led the project, says 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,” Prof 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.”

Control in the future

Kathy Williams, consumer representative from Alzheimer’s Australia’s Consumer Dementia Research Network, supported the findings of the report.

“For the people I know who have dementia, what’s really important to them is that they have some control over what might happen to them," Ms Williams said. “And that’s not just about their medical condition, it’s about where they’re going to live, who’s going to be caring for them, what kinds of activities they still want to participate in and who can visit.

“Good advance care planning enables control in the future when you don’t have a voice, and it releases family from the burden of decisions.”

Associate Professor Josephine Clayton, Greenwich Hospital, member of the Stakeholder Advisory Committee, welcomed the findings and the focus they would bring to a growing community issue.

Avoiding family conflict

“Its not uncommon for families to be in conflict as they try and work out what their family member would want at a time when they are no longer able to express this. Its vital we find a way to hear the person’s voice,” A/Prof Clayton said.

"It is important that health professionals learn how to engage people who have been diagnosed with dementia about the importance of ACP and sensitively offer to have these conversations early in the course of the illness.”

The project highlights quality of healthcare received by people with dementia as a key reason why a new approach to ACP is vital.

“When people with dementia are admitted to hospital they often receive sub-optimal care, have longer, more costly hospital stays and have poorer health outcomes.”

Full recommendations

Researchers conducted an extensive review of literature and interviewed more than 80 people including people with dementia, carers, health and aged care providers, academics and government officials. The seven key recommendations are that for people with dementia:

  • 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