Innovative palliative dementia care project wins grant

An Integrated Care Framework for people facing end of life due to advanced dementia will be made widely available to health professionals, people living with dementia, families and carers, thanks to a grant won by HammondCare from the National Quality Dementia Care Initiative.

About $290,000 in funding from the National Quality Dementia Care Initiative (NQDCI) round two project awards will allow ICF-D to be developed into a national web-based resource for best practice palliative dementia care.The Integrated Care Framework for Advanced Dementia (ICF-D) was developed in a previous collaborative research phase led by HammondCare's Associate Professor Meera Agar, Director of Palliative Care at Braeside Hospital. It is designed to guide and train palliative care for the increasing number of people facing end of life with advanced dementia.

A total of six projects shared $3 million in round two funding from NQDCI which is an initiative of Alzheimer's Australia and the Consumer Dementia Research Network (CDRN) and is unique in that research priorities are driven by consumers.

The grants were announced and presented on June 1, 2012 by President of Alzheimer's Australia, Ita Buttrose, AO, OBE who thanked the 25 members of the CDRN who had worked hard to ensure the funding would be used to "deliver the largest possible benefit to the most people and that these efforts will be made in areas that will make the biggest difference in their lives."

"And more importantly we hope that this program and what it achieves over the next 18 months will sow the seeds for similar efforts from ourselves, from government and from the health and aged care sectors in the years to come."

Outcome of HammondCare's expertise in dementia, palliative care

HammondCare's expertise in both dementia and palliative care was the platform for the much-needed development of the ICF-D. With 280,000 Australians living with dementia, an increasing number of people are facing end-of-life with advanced dementia, presenting aged care and health staff with new challenges in providing appropriate, sensitive and effective care during this time.

A/Prof Agar said that while integrated palliative care pathways had been developed in acute hospitals it had become clear with increasing knowledge of dementia that "one size does not fit all."

"The duration for care frameworks in acute hospitals is hours and days, while in an aged care setting, palliative care frameworks might be weeks and months. So we have re-framed the care approach, using principles that are similar but taking into account the specific needs of dementia."

Fellow HammondCare researcher, Senior Dementia Consultant Meredith Gresham, said that it can be very difficult for family carers or staff to know if the person with advanced dementia has entered the active dying stage.

"If you can't recognise if someone has entered the very last stages of life, you don't know when to call in the palliative care experts. Recognising these distinctions can be very difficult and to date there has been little help available."

Phases of research development

The earlier phase of research developed the ICF-D matrix that comprises:

  • Eight domains of function and care (such as swallowing and toileting) that characterise the stage of illness of the individual;
  • Resources to support effective communication between staff and relatives, at the right time; and
  • A series of care decision maps for each domain backed by eight modules of staff learning.

The next phase of the project, covered by the new funding announcement, will allow for the refining and transforming of the paper-based framework into a web-based resource that can be accessed by consumers and staff when and where they need it.

The project will be lead by Director of Palliative Care at Braeside Hospital, A/Prof Meera Agar. Dementia expertise is provided by HammondCare's Dementia Centre through Director Colm Cunningham and Senior Consultant Research and Design, Meredith Gresham. Collaborating organisations are HammondCare, Alzheimer's Australia, Alzheimer's NSW, CareSearch (Flinder's University), Palliative Care Australia, Palliative Care NSW, Aged Care Channel, and the UTS Centre for Health Communications.