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Listen to people with dementia
Panel recommends that a new model is necessary to ensure that the voices of those in care are heard.
By Dallas Bastian
Advance care planning( ACP) for people with dementia must focus on the individual and a new approach is needed to ensure their voice is heard, a study has recommended. The research puts forward seven key recommendations to assist in developing a national model of ACP for people with dementia and other forms of cognitive impairment.
Project lead professor Meera Agar, from HammondCare and the University of Technology Sydney, said the report highlighted the need to focus on empowering people with dementia and their families to have conversations about their values and wishes.
“ It’ s also important to have a health professional workforce who are highly skilled and place value on supporting these discussions,” Agar said.“ Our research also shows it is imperative that better systems and training are put in place to ensure anyone who is involved in the care of a person with dementia enquires about earlier discussions, involves the person as much as possible, and respects these wishes when decisions about care need to be made.”
Panellist professor Lynn Chenoweth, from the Centre for Healthy Brain Ageing at the University of New South Wales, said people with dementia are often denied the opportunity to make care decisions for themselves.
“ Often the reason for that is because the discussions are held far too late,” she said.“ Instead of speaking with the person about these important matters of their life when they’ re first diagnosed with dementia or the family becomes aware that something is going on, [ it’ s ] often left to the very last moment when a person either enters a residential care facility or they end up in hospital because of some acute condition.” ■
ADVANCED CARE PLANNING GUIDE
ACP should cover an extended period of
1 time and include a wide range of issues:“ The decisions that need to be made as a person’ s cognitive function deteriorates encompass a range of financial, lifestyle and health-related domains, including about medical intervention near the end of life.”
Individuals should receive a timely
2 diagnosis of dementia and information about the potential prognosis:“ Understanding possible disease progression increases the engagement of individuals and family members with the ACP process and can have a significant impact on the choices expressed in an advance care plan.”
ACP should be done as soon as possible
3 after diagnosis of dementia, if not done previously:“ Even if advance care planning has commenced it should be reviewed after a diagnosis of dementia to ensure it still reflects the individual’ s wishes and that relevant health and lifestyle factors have been considered.”
Effective ACP requires conversations that
4 focus on understanding a person’ s values and beliefs, and what is important to them:“ This is especially the case for cultural groups where discussions about death and dying may be highly sensitive.”
The appointment of one or more substitute
5 decision-makers is critical:“ This enables decisions to be made in a timely, context-specific manner based on an understanding of the person’ s values and wishes and avoids relying on finding and following written instructions, which may be unclear or inapplicable to current circumstances.”
They should be involved in discussions
6 and decision-making as much as possible:“ Adopting strategies such as providing explanations in simple language, minimising noise and distractions, and narrowing the range of options presented for decision, can facilitate their meaningful participation.”
Particular care is needed with transfers
7 between health and care settings:“ An individual’ s previously expressed wishes regarding their care can be overlooked when the continuity of care is broken as relevant documents may be unavailable or difficult to access and substitute decision-makers may be unknown.”
Direct quotations from Future planning and Advance Care Planning: Why it needs to be different for people with dementia and other forms of cognitive decline. To view the report, go to: http:// goo. gl / tnDx0f
6 agedcareinsite. com. au