With dementia the second leading cause of death in Australia — and the leading cause of disability — you’d think services for people with dementia would be easily accessible and stress free.

Unfortunately, this is not the case, a new report has found. According to members of the National Institute for Dementia Research, Australia “does not currently meet the human rights of people with dementia to timely and accessible health services of appropriate quality or to participation in health care decisions”. The report says Australian services for people with dementia are “fragmented, challenging to navigate and hard to access”. The health experts published their findings in the Medical Journal of Australia (MJA) on Monday.

“Dementia is the leading cause of disability, the second leading cause of death in Australians aged over 65 years, and the leading cause of death in women in Australia,” the authors said.

“In 2020, it is estimated that Australia will spend $8.1 billion on health care and $3.8 billion on social services for people with dementia, with a further $6.1 billion in lost productivity and earnings.”

The authors noted that Australia’s last National Framework for Action on Dementia (2015-2019) has expired. And said despite the National Framework it can be difficult for people with dementia to obtain a diagnosis, adding there are also limited health and social services for early dementia, including post-diagnostic support, and existing services are often poorly coordinated.

The authors identified principles that should apply to models of service delivery for dementia. The models should:

• have an overarching objective to maintain positive health and wellbeing of people with dementia, their care partners and families;
• recognise dementia as a disability, consistent with the World Health Organization Convention on the Rights of Persons with Disabilities, and promotes autonomy, social participation and rehabilitation;
• take into account the cognitive disability of people with dementia in accessing support and being a partner (along with their families) in planning care through supported decision making;
• be delivered by a multidisciplinary workforce with knowledge and skills around dementia;
• be accessible for all people with dementia and care partners;
• be ongoing, cost-effective and economically sustainable;
• be needs-based, not capped according to central budgets;
• be integrated for seamless experience for people with dementia and care partners, within and across primary, acute and subacute health care, aged care and social services; and
• be evidence-based.

The authors have since called for the development of a new National Framework which “should include the development of a model of service delivery that considers accessible pathways to diagnosis and effective and seamless ongoing support of health and wellbeing throughout the course of dementia”.

It is estimated there are between 400,000 and 459,000 Australians living with the disease today, and that number grows each year. Dementia is not one specific disease, but describes a collection of symptoms that are caused by disorders affecting the brain. It can affect thinking, behaviour and the ability to perform everyday tasks.