Step Up for Dementia Research

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Supporting People with Dementia in their Decision-Making

Friday, October 11th, 2019

Making decisions about our lives and having these respected is an essential human right; and whilst this can sometimes be more difficult when a person has dementia, there are many things that can be done to help.

Researchers at the universities of Western Australia and Sydney conducted a study looking into how Australian health and legal professionals provide decision-making support to people living with dementia[1]. The team analysed 28 in-depth interviews with practitioners from across aged care, hospital, general practice and community and private legal settings, about their experience in assessing capacity and supporting people with dementia to make decisions.

Finding out what is meaningful to the person

Understanding the person’s priorities was seen as the critical first step in decision-making.  Participants spoke about considering factors like familiar environments, typical best times of day and having trusted persons present, when working through decisions with a person with dementia.  Knowing the person well and involving family and friends was also recognised as important in helping interpret the individual’s needs and wishes.

Most participants spoke about talking clearly and directly with the person with dementia, explaining all the options (simplifying them where needed), and giving the person time to process the information. Other approaches included using photos or pictures to trigger memories, as well as the use of devices such as tablets and apps to assist with communication difficulties.

Different across professions

Having enough time was identified as one of the biggest barriers to supporting decision-making with people with dementia. Professionals also cautioned about well-intentioned family members unwittingly “taking over” the process. This appeared to be one of the main rationales behind legal practitioners advocating towards a more individualist approach – putting the person with dementia at the centre of the decision at the exclusion of all others. The downside of this was that it was quite “all-or-nothing”, in that it relied on legal professionals feeling satisfied that the person with dementia had decision-making capacity, and that if not, excluding them from the process.

Health professionals opted for a more relational practice that was inclusive of the person’s support network. However, they described trying to maintain distance between the person and their supporters so as not to influence the decision, particularly when it was about something “risky”, such as a hospital discharge, finances or will-making.

An opening for training

The people who volunteered to participate in the study likely reflect the practices of those with a special interest in dementia care or rights-based approaches.  Still, competency in providing decision-making support varied within professional groups, and the authors suggest that this represents an opening for formal skills training in the practice. The authors also acknowledge that risk averse regulatory frameworks can sometimes see people with dementia receiving less support for substantive decisions.

Nothing about me without me

Future research would benefit from direct observation of actual practices in dementia care. The presence of cognitive impairment is not a reason to exclude someone from decision-making.  The study confirms the importance of supported decision-making in the provision of consumer-directed care in Australia. It is the process of enabling a person to make and communicate decisions about their own life. The decision is supported, but ultimately, the decision is theirs.

 

[1] https://journals.sagepub.com/doi/abs/10.1177/1471301219864849?journalCode=dema

Note: Resources including guides, videos and webinars are available on the CDPC website at http://sydney.edu.au/medicine/cdpc/resources/supported-decision-making.php

 
The University of Sydney

Please note: This service is in the early implementation phase. Find out more.