Dementia Care in a Consumer-Directed WorldCarol Bennett, CEO Alzheimer’s Australia21 March 2016

7TH ANNUAL NATIONAL DEMENTIA CONFERENCE

Dementia care in a consumer-directed world

• How do consumers exercise choice?

• What information do consumers need to make informed choices?

• What is quality care and how do we measure it?

• How do we ensure people with dementia are not disadvantaged in a more consumer-directed environment?

2012 Aged Care ReformsMostly positive for consumers - included:

• Expansion of home care packages• Roll out of consumer directed care• Funding to acknowledge cost of dementia care• Additional support for people with behavioral symptoms of

dementia• Initiatives to address dementia in health and hospital system

But limited impact on quality of residential aged care.

How can people with dementia truly exercise choice in their care?

Barriers to choice

• Limitations in service availability and accessibility

• Need for care may be urgent

• Impaired decision making capacity

• Limited advocacy for individuals

• Limited information about quality, to support informed decision-making

Addressing the barriers

• Better access to affordable, quality services that truly see dementia care as core business

• More timely diagnosis and documentation of wishes

• An advocacy framework to ensure that all people with dementia have choice and quality in their care

• Transparent, user-friendly information about quality, to support informed decision-making

What information do consumers need to make informed choices?

Choosing an aged care service

• A difficult choice at a difficult time – if there is indeed choice

• Limitations on information available through MyAgedCare

• We need to demand more!

Customers, service and aged care

• In our connected world we have become accustomed to asking about other people’s experience of a product or service and using this information in making our choices.

• Aged care does not have effective quality measures nor a way that consumers can readily compare the quality of services.

Informed decision-making is key

• Information, education and training for consumers and providers

• Focus on communication and informed decision-making

• CDC across all settings must be supported by relevant, high quality information and education, to ensure informed decision-making is a reality

The need for information will be filled, one way or another…

• Digital disruption is here – people want information, and inevitably it will be created.

• There are useful examples from other sectors.

• If government doesn’t take the lead, it will happen anyway – but perhaps not in the most optimal way.

How do we measure quality?

What quality does not look like!Concerns about:

• Use of physical and chemical restraint

• Staffing levels and training

• Opportunities for social and physical engagement

• Appropriate communication

• Dementia-friendly physical environment

What do consumers want from aged care?

• Consumers want to be treated with dignity and be seen for the person they are, not for the condition they have, in all their interactions

• Supported to achieve highest quality of life possible• Staff that have a good understanding of how to support

people with dementia• Social and physical engagement• Pain management and palliative care when needed

Towards a new model of care

• Move from a one size fits all institutional model to an individualised approach to care

• Psychosocial model of care which supports people to remain as independent as possible

• Supporting people with dementia and their carers to be partners in care

How can aged care support quality?

• A shift in culture and attitudes• Engaging with consumers and supporting them to

meet their goals• A focus on the physical, social and spiritual wellbeing

of residents• New models of care which support independence,

relationships, engagement, and minimise restraint

Issues with a market approach to quality

• Consumers’ reluctance to leave a service once they enter due to the disruption of a move

• Lack of competition in rural and remote areas• Need for urgent access- which limits choice based on

availability• Location preference having a large weight in decisions• Consumers’ lack information about clinical standards and

best practice of care

Consumer-directed care requires consumer participation in quality processes

• Customer centred approaches inform most service industries - restaurants, hotels, car mechanical services, banks, phone companies - all regularly ask for my view

• Aged care does not yet have a consumer experience of care reference point

• Clinical measures of quality outcomes are not sufficient from the consumer perspective

Achieving greater consumer participation in driving quality care

• Consumers need a voice in developing quality measures, assessing services, and providing individual feedback

• Collection of user experience and satisfaction data – a key part of the picture

• International models can be adapted for Australia

Experience from CDC in Home Care Packages

• Administrative Costs

• Lack of information about choices and quality

• Providers not following CDC model

• Limited advocacy or recourse

Recommendations from consumers

• Ensure people with dementia and their carers are able to make informed decisions about their care by providing support for decision making, information about the range of services included, transparent information on costs and quality. This includes access to independent advocacy services.

• Identify areas of market-failure in home care such as remote and diverse communities and develop strategies to address issues around lack of services, limited choice and excessive costs.

Conclusion

• Aged care is moving towards a system of greater choice and control for consumers

• Difficulty in meeting consumer expectations for care• The future lies in approaches that support people with

dementia to achieve meaning and quality of life – that is true consumer-directed care