ABSTRACT
Advance care planning (ACP) is a process of discussion about a person’s goals and values for future care, which is aimed at extending personal autonomy into a time when they cannot make decisions. We know the loss of decision-making capacity is more certain for those with dementia, hence the importance of ensuring people with dementia and their carers participate in ACP, with the opportunity to discuss support and the ‘type’ of care they would prefer, thus extending their autonomy as far as possible. This chapter is based on broad consultation with health professionals and consumer organisations across Australia, to identify how to increase uptake of ACP among people with dementia and their carers. Respondents indicated that the traditional approach focussing on medical end-of-life interventions was less appropriate for people with dementia, while approaches oriented to a psychosocial philosophy of care were considered more suitable. These might include, for example, family- and person-centred approaches, incorporating values and spiritual, cultural and lifestyle issues. Respondents across all settings emphasised the relational aspects of ACP: what matters most are conversations that value and inform ‘rest-of-life’ not just end-of-life, as well as the appointment of trusted substitute decision-makers. Rather than focusing on medical decision-making, ACP models need to incorporate broader social, personal and community contexts to ensure that outcomes reflect those identified as important by people with dementia.
