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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