Attitude and Culture

The effects of regulation on aged care services for people with cognitive decline

Simon Biggs

Lead Investigator: Professor Simon Biggs

Aged care services are required to conform to a range of regulatory frameworks. This project will examine the role of regulation on the care of people with dementia. We will interview staff and other stakeholders to gauge their opinions on the advantages and disadvantages of regulation and their effects on the quality of care.

Evidence will be gathered on the intended and unintended consequences of regulations. There may be, for example, ‘good’ regulation, ‘bad’ regulation and even ambiguous regulation, which impact on the lives of people with dementia in different ways.

Findings will be used to inform policy makers in government and regulatory bodies in the development of appropriate regulation that promotes seamless forms of care and support for those with cognitive decline and their carers.

The researchers will seek to answer the following questions:

  • What are the benefits and adverse effects that occur as a result of regulation in residential and community aged care?
  • How can the centre produce evidence to help regulators create more effective regulations that facilitate high quality care for people with cognitive decline?

The project will take place over three years, beginning with interviews of a range of senior managers and policy experts to identify key areas where difficulties with regulation have been encountered. A broader, online survey will also take place for front line aged care staff.

The research team will work closely with aged care provider organisations in the design of the interviews and survey. The team will review the qualitative data from the surveys and interviews and identify three areas of regulation that have a significant impact on the design and delivery of aged care services.

These areas will be collaboratively reviewed by the team and relevant parts of government to determine both the positive and adverse effects on care. Alternative regulatory approaches will then be considered, enabling the team and provider organisations to make recommendations that will support high-quality services.

Living with dementia in the community: Assessing the risks

Dimity Pond

Lead Investigator: Professor Dimity Pond

People living with dementia in the community are exposed to a number of risks. Many difficult decisions have to be made, such as whether to restrict the person’s ability to drive, live alone, or take medications alone, and when it is appropriate for them to move into residential aged care.

Such important decisions require an assessment of the various risks involved, a task that is often done in an informal manner by family members, paid carers and professionals. Most of these decision makers are not experienced at working through the ethical dilemmas, risk enablement and other issues involved in the process. Activity 8 is designed to improve this situation, by adapting a British risk-assessment framework.

A risk assessment framework with a checklist of activities included in the assessment process would assist people in the community in making difficult decisions about care for people with dementia. Such a tool exists in the United Kingdom but there is no equivalent in Australia. We intend to adapt this tool for use in Australia in a way that provides an acceptable and useful tool for carers, people living with dementia and professionals who work in the area of community dementia care.

This 18-month project will adapt the existing UK risk assessment framework, exploring its applicability to the assessment of physical and psychosocial risks for people with cognitive decline who live in the community in Australia.

With input from consumers and the Brightwater Care Group, a briefer, simpler version of the framework will be developed as a tool for use in primary and community care settings here. The tool will be trialled with and evaluated by people living with dementia, their families and a range of primary care professionals who work with them.

Dementia in the public domain: attitudes and interventions

Simon Biggs

Lead Investigator: Professor Simon Biggs

As community based care becomes a popular policy option, the visibility of people with dementia in the public sphere will become increasingly commonplace.

To improve public awareness of dementia and dementia care in the community there needs to be better understanding of how dementia is conceived of and represented in the public arena. Analysis of the implementation and effectiveness of public interventions will play a key role in influencing positive identities and empathy of people with dementia and their carers. It will also contribute to the development of appropriate tools for future policy and practice.

This study aims to examine current public perceptions of dementia from a range of perspectives, including those of key professional and consumer groups, and develop in response an evaluation of National and International strategies for greater awareness of key issues and of public education.

Over the three year funding period the study will achieve these aims through a variety of research approaches including one to one interviews with relevant health and care professionals and consumers; Mapping of campaigns in this and other areas (National and International) and a narrative analysis of their content and intent; Interviewing opinion formers and policy makers based on findings from the above; and holding a Future Search stakeholder workshop event aimed at gaining consensus on policy development.

The project will result in a synthesis of existing evidence and activities tailored to the specific needs and context of Dementia; new research data on the overlap and gaps between inter-professional and consumer attitudes and expectations; critical mapping of National and International public health campaigns used to influence attitudes and behaviours in the public sphere, their aims and outcomes; recommendations to improve future public health and interest group campaigning.