Significant reform areas ignored in National Dementia Action Plan: experts

The Federal Government’s draft 10-Year Dementia Action Plan has failed to address some fundamental areas for reform, according to multiple leading advocacy bodies.

The publicly available consultation paper, released in November 2022, sets out the Government’s vision for greater public awareness of dementia, and great post-diagnostic support for those living with the condition, as well as their carers.

The action plan emphasises seven key objectives, namely:  

1. Tackling stigma and discrimination, including that experienced by marginalised groups such as First Nations, Culturally and Lingustically Diverse (CALD), and LGBTQI+ older Australians.
2. Minimising risk, delaying onset and progression of neurodegenerative conditions.
3. Improving dementia diagnosis and post-diagnostic care and support, including through local Brain Hubs which will provide multi-disciplinary care, including allied health.
4. Improving treatment, coordination and support along the dementia journey.
5. Supporting people caring for those living with dementia.
6. Building dementia capability in the workforce.
7. Improving dementia data and maximising the impact of dementia research and innovation.

In OPAN’s monthly e-newsletter, The National Advocate, Craig Gear OAM, CEO of the Older Persons Advocacy Network (OPAN), says that while the action plan is a positive start, it is missing some vital components.

“It’s really welcome, and we believe it will raise awareness of, and provide appropriate services and supports to, people living with dementia as well as their carers and families,” Gear says.

“But we are concerned that the current draft makes no mention of the human rights of people living with dementia.

The seven objectives of the draft plan are undoubtedly welcomed, however advocates in the sector are concerned about a variety of omissions.

Analysis of the draft document reveals that the paper fails to explicitly address multiple royal commission recommendations, such as a human rights-based framework; establishment of deinstitutionalised, home-like facilities, available to older Australians even in the later stages of dementia; and enabling ‘self-determination’ and ‘dignity of risk’, even when one is living within residential care settings.

“We recognise that the shift to a new human rights based Aged Care Act is very new and evolving… but we really would like to see that understanding that taking away someone’s liberties is a big thing…,” Gear tells Aged Care News.

“Removing some of those institutionalised elements [of residential aged care] is a really important strategy… and we need to be making sure that people are still engaged with their communities.”

Gear furthermore states that members of OPAN’s National Older Persons Reference Group have drawn particular attention to the draft plan’s lack of action around locked dementia units.

“And, as we note in our recent submission paper, people living with dementia are also frequently denied their rights in community and health care settings, and by family or appointed guardians or attorneys.”

Tamar Krebs, founder and CEO of deinstitutionalised dementia care provider Group Homes Australia, tells Aged Care News that she is also concerned about the lack of attention to the common practice of locking up persons with dementia.

“Locking people up is against human rights, and so the fact that we’re going to have a 10-year action plan that doesn’t include deinstitutionalisation makes me scratch my head, thinking we’re going backwards in time.”

Krebs adds that while the references to added support during the dementia journey is promising, she emphasises that expert nursing staff must be deployed to provide clinically sound support for the person with dementia and their next of kin.

“If you get diagnosed with breast cancer, you have someone who’s going to walk alongside you through your diagnosis, and so we should have a dementia care nurse that, when you get diagnosed, you’re gonna get absolute support to learn how to live.

“And this is not just for the person living with dementia, because there’s always two people: there’s the partner and the person.

“One’s living with dementia inside and one’s living with dementia outside, and so we need to be able to change that conversation, post diagnosis, and I’m not sure that there’s enough of that in the action plan.”

Grassroots advocacy group Aged Care Reform Now poured hours of work into their own independent submission during the action plan’s consultation process, informed by their diverse membership’s diverse expertise, comprising clinical experience, legal expertise and lived experience of the system.

ACRN’s submission emphasises that eliminating systemic harm needs to be a central feature of the Federal Government’s mission statement.

“While we agree with many of the objectives and actions, we believe there are additional enabling components that should be included to support best practice dementia care,” ACRN’s submission says.

It emphasises the need to mitigate against abuses of power related to substitute decision making arrangements, and to abolish the practice of giving bureaucrats absolute authority over isolated persons with dementia.

“We understand the Public Trustee is not appropriate in aged care settings as they do not have day-to-day involvement with the person they are supporting, and they are relying on the aged care facility to provide health and other information.

“There has to be a mediation system to deal with family and other disputes related to the care of people with diminished capacity.”

According to OPAN, supported decision-making processes must be embedded within the country’s dementia action plan, an alternative to substitute decision-making that provides people with dementia the support and information they need to make their own choices.

“Supported decision-making supports people to exercise their own preferences in the context of making legal and day-to-day decisions,” Gear explains.

“As I told the Disability Royal Commission, there is a common misunderstanding within the community and the aged care sector, that if a substitute decision-maker has been appointed for medical decisions, an older person cannot make day-to-day decisions for themselves or participate in larger decisions relating to their lifestyle, health and wellbeing.”

Rigorous training of all aged care staff and professional advocates is necessary, Gear says, to ensure older persons are supported in exercising their own preferences, even as their condition progresses.

“This needs to be a core competency, to support those living in aged care, but also the family members,” Gear says.

“When people have the privilege of being nominated someone’s supported decision maker, they need to receive the necessary training and support to ensure they are allowing the older person ongoing choice and control over their decisions.”

The 10-Year Dementia Action Plan will be finalised by the end of 2023.

Although public consultations have closed for this strategy framework, Gear says that organisations such as OPAN, as well as the general public, will have further opportunities to advocate for additional reforms throughout the year.  

“One of the other opportunities this year will be engaging with the development of the new residential aged care accommodation framework… we’re hoping some of our suggestions relating to deinstitutionalisation will be picked up through that,” Gear says.

“We saw that is did take a while in the mental health and disability space, and so we really need to start the process now in aged care.”

Gear encourages the public to get involved in the ongoing aged care consultation process through the Aged Care Engagement Hub, accessible via this link.  

• To read the summary or full draft of the 10-Year Dementia Action Plan, follow this link.
• Translated summaries of the consultation paper, available in 10 different languages, are available to read via this link.