From CareSearch Newsletter
“Having an awareness of dementia is not just acknowledging that the disease is progressive, but it is about acknowledging that people with dementia should be able to make their own decisions and express their own preferences”. Professor Craig Sinclair (Research Fellow from the Rural Clinical School of Western Australia) highlighted the social context of decision-making and the importance that decisions occur over time, starting with overall goals of care before moving to individual treatment decisions. Meera Agar (palliative care physician and Professor of Palliative Medicine at UTS) suggested that planning should begin at diagnosis, be iterative and include facilitation and informational context from health professionals as necessary. Meera suggested that investment in experiential teaching methods might be the best means of equipping health professionals for these roles.
The University of Technology Sydney (UTS) hosted a forum on dementia care planning during National Palliative Care Week. It was highlighted that it is important to talk about end of life early on and care decisions should be person-centred instead of being according to the wishes of surrogate decision-makers. Hospital Clinicians were also highlighted to face a dilemma in deciding whether an advanced care plan should be accepted as an accurate and updated reflection of a person’s wishes. Health Professionals were also encouraged to call the persons with dementia to help them decide.
New resources to support dementia care planning developed by forum participants and available online include:
- A CareSearch website supporting family case conferencing for people with advanced dementia
- A report supporting the quality and uptake of advance care planning across the dementia trajectory
Read the full article here.