Researchers predict as many as one in four people aged over 65 years will be diagnosed with dementia by 2020. To confront this looming health problem, a team of health care researchers led by the University of Western Sydney’s Professor Esther Chang, has been working on a series of related projects which aim to improve the lives of people with advanced dementia, their carers and families.
Dementia is a progressive brain dysfunction which causes those with the disease to lose memory and the ability to carry out simple tasks. The most common types of dementia are Alzheimer’s disease and vascular dementia. There is no cure and people with advanced dementia eventually require 24-hour, 7 days-a-week care in a residential aged care facility.
Professor Chang has completed two projects to date. The first developed a booklet providing information for carers and families on what to expect as dementia progress based on comprehensive assessment of the needs of people with end stage dementia and the people caring for them. The booklet also addressed end-of-life issues – often the most difficult topics for families to discuss.
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 on the Internet giving access and vital support to families, carers and service providers in Australia as well as internationally. It can be found at http://www.uws.edu.au/research/nforce/projects/2006.
Professor Chang is now leading a third project which received a $247,500 three-year grant from the Australian Department of Health and Ageing. Clinical nurse consultants are working collaboratively with specialist age/care dementia nurses to develop a decision-making framework to improve care and the quality of life of people with advanced dementia. The project will be completed in 2009.
“The research will enhance nurses’ competence and confidence in providing and improving symptom control for those being cared for, as well as improve communication with family members of those in residential care facilities,” says Professor Chang.
All projects are in collaboration with Sydney West Area Health Service Primary Care and Community Health Network and the Blue Mountains Division of General Practice.