A new consumer guide that sets out the level of care that people with dementia and their carers and families should expect is now available.
One of the first of its kind, the Consumer Companion Guide – Diagnosis, treatment and care for people with dementia, was developed by people living with dementia, carers, researchers and clinicians from the National Health and Medical Research Council’s Cognitive Decline Partnership Centre (CDPD).
Dr Kate Laver, NHMRC-ARC Dementia Research Development Fellow at the Department of Rehabilitation, Aged and Extended Care Faculty of Medicine, Nursing and Health Sciences at Flinders University is the lead co-ordinator of the Consumer Companion Guide.
Dr Kate Laver was also involved in the development of the Clinical Practice Guidelines and Principles of Care for People with Dementia, 2016 which were launched in March this year by the Health Minister, Sussan Ley, at the Alzheimer’s Australia National Consumer Summit.
“The objective of this project was to develop a companion guide for members of the public to complement the Clinical Practice Guidelines to ensure that the information in the Guidelines is more accessible to those who need it most, regardless of their varied levels of health literacy,” Dr Laver said.
The Consumer Companion Guide includes information about the Principles of Dignity of Care, including:
- Zero tolerance of all forms of abuse
- Support people with the same respect you would want for yourself or a member of your family
- Treat each person as an individual by offering a personalised service
- Enable people to maintain the maximum possible level of independence, choice and control.
- Listen and support people to express their needs
- Respect people’s privacy
- Ensure people feel able to complain without fear of retribution
- Engage with family members and carers as care partners
- Assist people to maintain confidence and positive self-esteem
- Act to alleviate people’s loneliness and isolation
Alzheimer’s Australia National President Professor Graeme Samuel AC said consumers played a key role in the development of the Consumer Companion Guide to ensure the document is relevant to the needs of people living with dementia and their carers.
“These guidelines are an example of the significant impact that can be achieved when consumers partner with clinicians and researchers,” Professor Graeme Samuel AC said.
Dr Jane Thompson who cared for her husband who died of Alzheimer’s disease in 2007 was one of the five consumer representatives on the collaborative working group.
“There were no Australian clinical practice guidelines for dementia when I was caring for my husband, let alone versions summarising the information in an accessible form,” Dr Thompson said.
“I know I would have benefited enormously from having had access to such an up-to-date summary of the best available evidence.
“I welcome the availability of the Consumer Companion Guide and hope that it will improve the quality of care for those people currently living with dementia, their carers and families.”
A copy of the Guide can be found here https://www.fightdementia.org.au/national/about-dementia-and-memory-loss/resources/clinical-practice-guidelines
The development of the Clinical Practice Guidelines and the Consumer Companion Guide were funded through the NHMRC Partnership Centre: Dealing with Cognitive and Related Functional Decline in Older People.
Source: Alzheimers Australia website