Cutting edge approach to research

With $3.3 million funding over 3 years, this Initiative will work to improve the quality of dementia care in Australia through better use of research evidence, and to provide a high-level platform for consumer-involvement in dementia research.

The Quality Dementia Care Initiative has two parts:

1. The National Quality Dementia Care Network – which will fund projects aimed at increasing the use of best-practice evidence in dementia care;
2. The Consumer Dementia Research Network – a nationally representative group of people with dementia, families and carers who will decide where and how the project funding should be spent, and advise on and participate in all levels of dementia research.

Translating research evidence into better care outcomes

Academic research can take a long time to make a practical difference in mainstream health care (an average of 17 years by one estimate). To accelerate this process, the Quality Dementia Care Network will be supporting ‘Knowledge Translation’ projects that address significant gaps between evidence and practice in dementia care.

These will not be research projects. Rather, they will involve the development and rollout of innovative strategies for achieving significant national improvements in the quality of dementia care by making use of the best national and international evidence on what can and should be done.

In most cases, projects will be led by Alzheimer’s Australia state and territory organisations in collaboration with their members, service providers and government and research partners.

Members of the Consumer Dementia Research Network met in early September, 2010 to discuss areas of dementia care that most need to be addressed. As a result, knowledge translation projects will be supported that focus on:

1. Person-centred care
2. Advance Care Planning
3. Support for carers
4. Timely diagnosis of dementia
5. Non-pharmacological treatments for behavioural and psychological symptoms of dementia
6. A palliative approach to caring for people with dementia

A consumer voice in dementia research

The value of consumer input in health research has been increasingly acknowledged by various organisations and funding bodies in Australia and overseas. Consumer involvement leads to research that has greater relevance, has better outcomes and is more likely to be put into practice.

Alzheimer’s Australia is committed to meaningful consumer engagement in all steps of the research and knowledge translation process, and to that end, established the Consumer Dementia Research Network in partnership with the Dementia Collaborative Research Centres. The aim of this national network is to support individuals with dementia and their family carers and friends in having an active role in informing the research process and contributing to better care practice and outcomes.

Twenty-three individuals were chosen for the consumer network based on their backgrounds and experience. The group is made up of individuals from every state and territory and includes individuals from various backgrounds including culturally and linguistically diverse, Indigenous, regional/remote, gay and lesbian, and individuals with younger onset dementia. The majority of the participants in the group have not been involved in consumer advocacy in the past. They have a wide range of both personal and professional experience with dementia, research and aged care. The Consumer Dementia Research Network will play a key role in all stages of the projects funded through the National Quality Dementia Care Network, from priority setting to implementation, monitoring and Evaluation. They will also be involved in providing consumer input to research that is conducted through the Dementia Collaborative Research Centres.

The Consumer Dementia Research Network is possible through support from the Dementia Collaborative Research Centre - Carers and Consumers as part of the Australian Government’s Dementia Initiative. Alzheimer’s Australia would also like to thank the ANZ Wicking Trust and Bupa Care Services Australia for providing financial support for this important initiative