Effectiveness of interventions to increase participation in advance care planning for people with a diagnosis of dementia: A systematic review

Abstract

What is already known about the topic? • • Advance care planning is important for people with dementia given the progressive nature of the disease and its impact on cognitive capacity. • • No systematic reviews have synthesised the evidence about strategies that increase participation in advance care planning for persons with dementia. What this paper adds? • • Very few methodologically rigorous studies have examined the effectiveness of interventions in increasing participation in advance care planning for persons with dementia.

A narrative review of facilitating and inhibiting factors in advance care planning initiation in people with dementia

“…In addition, families' coping mechanisms played a pivotal role in impeding ACP initiation. Family members who were still in denial of [16,38,43,47], avoided [12,13,15,22,36,37,44] the diagnosis or were fearful of imposing stress and anxiety on PwD [14,39] all hindered ACP initiation.…”

“…This could have been due to family members presuming they would know what would be in PwD's best interests and did everything in their power to help PwD, but neglected PwD's wishes by doing so. Knowledge Coping mechanisms Acceptance of the diagnosis [46] Denial [16,38,43,47] Avoidance [12,13,15,22,36,37,44] Fear of causing PWD stress and anxiety [14,39] Disease knowledge Aware of dementia trajectory [39,45] Poor understanding of the trajectory of dementia and that dementia is a terminal illness [12,15,19 [16,48,49] Familiar with PwD's wishes [7,48] Feeling responsible for PwD's well-being [47] Increasing carer burden beyond capacity [13,16] Changing role in the family [16] Able to balance the needs of PWD and other family members, including themselves [7,40,47] Negative family dynamic [15,38,39,44,51] 'Fly-in' relative [25,40] Caring obligation to PwD [16] Wider relationships Others to confide in and support in making an ACP [7,16,48] Family has good relationship with HCP…”

“…Regarding HCP attitudes, the most frequently mentioned barrier was the HCP's assumption that PwD lacked the capacity [27, 31, 38-40, 51, 54]. They also mentioned the fear of putting stress and anxiety on PwD and their families [14,37,39,43] and expressed some reservations about discussing end-of-life issues [15,17,41].…”

“…As for their knowledge, HCPs did not view dementia as a terminal illness [14,15,17,27,37,41,44,50,51] and thus did not feel the need to initiate ACP. The lack of ACP knowledge among HCPs was commonly mentioned in various articles.…”

“…Although more countries are encouraging the use of ACP, or even legalising advance directives (AD) which is a document that enables any individual to state their preferred treatments in the future, they are still not fully utilised [4]. This may come from several causes: a lack of ACP awareness [13], lack of confidence in initiating ACPs amongst HCPs [14], or an ACP discussion format that focuses mainly on medical and end-of-life issues, thus reducing ACPs to a tick-box exercise for HCPs [12,15]. Furthermore, contextual factors such as limited access to care [16] and cultural and religious beliefs may also be barriers to embedding ACPs as an integral part of care [17].…”