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

Navigating the aged care system

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

Navigating the health care system

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.

Navigating the community and home living environment

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

Dementia Friendly Communities

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

Dementia Enabling Environment Project (DEEP)

www.enablingenvironments.com.au

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.