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Navigating the System
Maree McCabe, CEO, Alzheimer’s Australia
23 February 2017
8TH ANNUAL NATIONAL DEMENTIA
CONFERENCE
Dementia – the public health challenge of the 21st century
278,707
553,285
942,624
0
100,000
200,000
300,000
400,000
500,000
600,000
700,000
800,000
900,000
1,000,000
2012 2030 2050
Projected Dementia Prevalence in Australia 2012 - 2050
Source: Access Economics ,2011
What do people living with dementia want and need?
• What we all want – a meaningful life
• Dignity, social inclusion, enablement, engagement
• The ability to remain independent and live in the
community for as long as possible
• Quality residential care when it’s needed
• The ability to die with dignity
Consumer Directed Care
• CDC in aged care links funding to consumers and enables them to choose their service providers, potentially offering greater choice and flexibility, and potentially driving competition and quality
• However people living with dementia face challenges in participating in Consumer Directed Care
Achieving effective Consumer Directed Care
Three crucial elements to effective CDC:
• Educated, informed and engaged consumers,
• Ensuring safety and quality across service delivery, and
• Protecting consumer rights through a comprehensive advocacy framework.
Educated, informed and engaged consumers
• Entire interactive communication process must support informed choice – this is not possible without good information and education
• Dignity and respect, information sharing, participation and collaboration are paramount
• Consumers have provided guidance on the kinds of information they need – these needs must be met
Ensuring safety and quality across service delivery
• Aged Care must include consumer perspective and experience in performance measures
• Need to move away from a narrow focus on standards and accreditation, to a broader focus on delivering real quality
• Need for consumer-driven Quality in Dementia Care program
Protecting consumer rights through a robust advocacy framework
• Critical element to support the implementation of Consumer Directed Care
• The scale of reform is very significant
• Consumers must be supported and empowered, and have their rights protected
Improving primary health care for people with dementia
There is a need for:
• Improved incentives for general practice to provide
timely diagnosis and continuing care for people with
dementia
• Care co-ordination (navigation support) for people with
dementia
• Consistent referral pathways for people with dementia,
to navigate specialist services and support services.
Improving hospital care for people with dementia
• Dementia should be identified and managed.
• Families and carers should be enabled to be actively
involved.
• Staff should be trained to more effectively communicate
with and care for a person with dementia.
• Physical environments should be dementia-friendly.
• Alternatives to psychotropic medications should be
used.
• The Dementia Care in Hospitals Program should be
widely adopted.
The Virtual Dementia Experience https://vic.fightdementia.org.au/vic/about-us/virtual-dementia-experience
The social impact of dementia
A diagnosis of dementia can have profound social
implications for the person living with dementia, and
their carers. Social attitudes are concerning:
• 63% of people admit to knowing very little about
dementia
• 57% of people would rather not think about dementia
• 25% of people find people with dementia frightening.
Ipsos (2015) Perceptions and Understanding of Dementia: Report for Alzheimer’s Australia
The movement in Australia
Dementia Friendly national campaign launched in 2014
– six pilot sites
Establishment of local dementia alliances, inclusive of
people living with dementia and carers
Businesses and other organisations committed to
working towards becoming dementia friendly
Dementia Friendly Communities in Australia – some highlights
• Social engagement
• Volunteering programs
• Toolkits
• Environmental audit tools
• Ourplacemap.com
Helping people living with dementia navigate the home environment
There is already a range of equipment and technology
available that is helpful for people living with dementia
and their carers. This equipment can help people live
safely at home for longer – which is what most people
with dementia want.
(http://www.innovationsindementia.org.uk/Getting%20equipped%20to%20tackle%20forget
fulness.pdf; https://wa.fightdementia.org.au/wa/about-dementia-and-memory-
loss/resources/resources-wa/assistive-technology-product-information-sheets
“Smart homes”
CNN report, October 2014: Mary Lou doesn’t know she’s being tracked. The
77-year-old is in the middle stages of Alzheimer's and though she lives on her
own, her family keeps close tabs on her. If she leaves her home between 9 pm
and 6 am, a silent sensor on her front door texts her daughter an alert. There
is a sensor on each of Mary Lou's two key chains that detects when she goes
outside her condo's grounds. A motion sensor in the kitchen helps monitor her
eating habits, and another in the bedroom notes when she wakes up in the
morning and catches any sleeping issues. There is even a flood sensor in the
laundry room. The sensors relay the information back to a small wireless hub.
Her two daughters, who act as her caretakers, can monitor it all on a
smartphone app and set up special notifications. "It's kept her to the point
where we haven't even had to have in-home care yet. Our goal is to keep her
in her home for as long as possible," said her daughter. http://edition.cnn.com/2014/08/25/tech/innovation/alzheimers-smart-home/
Conclusion
For people living with dementia and their carers, one of
their biggest challenges is simply navigating the system –
whether this be the aged care system, the health care
system, or local communities and home environments.
We know what needs to be done to meet these challenges,
and we can all play our part in achieving a better future for
people living with dementia and their carers.