A new set of resources has been developed to help frontline aged care staff initiate end-of-life conversations with people with dementia.
Produced by dementia specialist aged care provider HammondCare, The Advance Project features a free online toolkit of training and resources to empower aged care staff to begin planning for the palliative care needs of people living with dementia in aged care homes and community settings.
Many people living with dementia are missing out on palliative care and end-of-life support, said HammondCare general manager of health and palliative care Dr Andrew Montague. “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.”
Funded by the Australian Government under the National Palliative Care Projects scheme, the toolkit has been produced by a team of HammondCare clinicians and researchers led by Professor Josephine Clayton and clinical care consultant Jon San Martin.
A national expert advisory group, people living with dementia and their families, GPs, nurses, allied health professionals, care workers, and aged care managers provided input and feedback.
Featuring videos and e-learning tools, the toolkit aims to help build capacity in people working in aged and primary care to:
- start conversations about advance care planning with people living with different stages of dementia
- empower and prepare families to advocate for the person’s end-of-life care wishes
- systemically assess the palliative care needs of the person living with dementia
- identify people with dementia who would benefit from a structured assessment of their palliative care needs
- identify those people with dementia who would most benefit from referral to specialist palliative care services.
“It doesn’t sink in that this is ultimately a fatal disease.”
Lynne Sewell’s husband Rick was diagnosed with dementia in 2014. She said there was a need for honest conversations following a dementia diagnosis.
“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.”
There are a number of important end-of-life decisions that need to be considered, said Ms Sewell. “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.”
Such consideration of a person’s end-of-life wishes is not only important but respectful said 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.”
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