A new toolkit has been developed for aged care workers to help them initiate difficult end of life conversations with aged care residents and clients living with dementia to better assess their needs and wishes.
The Advance Project online toolkit is a free, practical, evidence-based suite of resources, including team-based training, to empower workers to initiate Advance Care Planning and effective screening for palliative care needs for people living with dementia in aged care homes and community settings.
A high number of older Australians living with dementia in aged care facilities are missing out on palliative care and end of life support, resulting in avoidable suffering for them and their loved ones.
The toolkit was produced by a team of clinicians and researchers from aged care provider HammondCare, led by Professor Josephine Clayton and Jon San Martin, with input and feedback from a national expert advisory group, people living with dementia and their families, doctors, nurses, allied health professionals, care workers, as well as aged and primary care managers.
HammondCare’s General Manager Health and Palliative Care Doctor, Andrew Montague, said the resources support a relationship-based approach to care that requires getting to know the individual and their needs and preferences at an important stage in their life.
“Sadly, it is often the case that people living with dementia haven’t had the same opportunities as everyone else to express their needs and wishes for care at the end of life,” he said.
“These valuable resources, specifically designed to support our residential and community aged care professionals, can help deliver palliative care to those most in need at a critical time.”
While a person with dementia may live with symptoms for many years, HammondCare said dementia is a terminal illness.
Recent figures show only about 6% of residents in aged care homes access palliative care, despite the increasingly complex needs of these residents.
This dementia-specific toolkit includes training videos and eLearning with real life scenarios, offering various approaches and tips to help aged care workers initiate conversations about Advance Care Planning and palliative care with a person living with dementia and their family.
The toolkit followed successful Advance Project resources that were developed to support Australian General Practitioners (GPs) and nurses working in general practice settings.
Professor Clayton said a better understanding of the needs of aged care residents and clients with dementia would help relieve needless suffering.
“It’s important to have ongoing conversations about the person’s end of life wishes initiated by staff members who already know the person with dementia and their family, and in a way that is respectful, supportive, and centred on the care of the person,” explained Professor Clayton.
“The ultimate goal is to enable people living with dementia to have the opportunity to express their needs and preferences for care at the end of life, and have better access to palliative care when required, and support for their families and carers.”
Lynne Sewell, whose husband Rick Sewell was diagnosed with Primary Progressive Aphasia and Frontotemporal Dementia in 2014, said honest conversations are necessary after a dementia diagnosis even if they were “confronting”.
“When someone is diagnosed with dementia, they get handed brochures and other material, but it doesn’t sink in that this is ultimately a fatal disease,” Ms Sewell said.
“We were told to go and enjoy the rest of our life, no discussion about planning for the future or getting things in order.
“It’s really important to know in advance whether a person living with dementia would like to be resuscitated no matter what, whether they would like to die at home, for instance, or even their wishes for celebrating their life with a funeral or something else, or to be cremated or buried.”
The toolkit is funded by the Australian Government under the National Palliative Care Projects scheme.
To access these free dementia training and resources, go to The Advance Project website.