Dementia Frameworks

Decision-Making frameworks in advanced dementia – links to improved care was funded by the Australian Department of Health and Ageing.

Professor Esther Chang, from the Aged Care and Palliative (ACAP) research group, led a team of researchers and clinicians to improve the care of patients with dementia for the last three years. This research has provided a decision-making framework of support that will include guidelines for nurses to enable them to assist people in residential aged care facilities. Four major symptoms were targeted - pain, constipation, weight loss and agitation/confusion. These symptoms have been recognised as particularly reducing the quality of life of people with advanced dementia and as being difficult for the primary care providers to treat.

The Steering Committee, Project Officer Sally Easterbrook, Clinical Nurse Consultants from the Sydney West Area Health Service worked collaboratively with specialist aged/dementia nurses to develop the framework. The framework described when to convene a case conference or seek specialist palliative care advice. This research will enhance nurses’ competence and confidence in providing care and improve symptom control for those being cared for, as well as improve communication with family members of those in residential aged facilities.

Team members include: Ms Amanda Johnson, Professor John Daly and Professor Patricia Davidson, working in partnership with Sydney West Area Health Service Primary Care and Community Health Network and the Blue Mountains Division of General Practice. This Department of Health and Ageing funded project has developed, implemented, evaluated and promoted sustainability of a decision-making framework for advanced dementia care.

Decision-Making Framework for Pain Management

• Pain Management Guidelines (opens in a new window) (PDF, 566kb)
• Pain Management Supporting Information (opens in a new window) (PDF, 2.4mb)
• Pain Management Train the Trainer (opens in a new window) (PDF, 1.75mb)
  
  

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Decision-Making Framework for Agitation Management

• Agitation Guidelines (opens in a new window) (PDF, 503kb)
• Agitation Supporting Information (opens in a new window) (PDF, 464kb)
• Agitation Train the Trainer (opens in a new window) (PDF, 390kb)
  
  

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Decision-Making Framework for Weight Loss Management

• Weight Loss Guidelines (opens in a new window) (PDF, 2.7mb)
• Weight Loss Supporting Information (opens in a new window) (PDF, 1.9mb)
• Weight Loss Train the Trainer (opens in a new window) (PDF, 1.7mb)
• Weight Loss Pamphlet (opens in a new window) (PDF, 1Mb)
• Weight Loss Pamphlet A4 Size (opens in a new window) (PDF, 1Mb)
  
  

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Decision-Making Framework for Bowel Management

• Bowel Management Guidelines (opens in a new window) (PDF, 638kb)
• Bowel Management Supporting Information (opens in a new window) (PDF, 2.1mb)
• Bowel Management Train the Trainer (opens in a new window) (PDF, 1.7mb)

Family Information Booklet for Advanced Dementia

During our first project in Dementia we found that carers and families needed to have information on what to expect as dementia progresses. For example, the booklet addressed end-of-life issues – often the most difficult topics for families to discuss. This booklet was then developed and evaluated by health professionals.

The second project evaluated the booklet with family carers throughout NSW. The booklet was enthusiastically received with family carers reporting that the booklet was easy to understand. It is now available in a PDF version  giving access and vital support to families, carers and service providers in Australia as well as internationally.

• Family Information Booklet (opens in a new window) (PDF, 276Kb)

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