Introduction

Advance care planning is defined as a process that “enables individuals who have decisional capacity to identify their values, to reflect upon the meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and health-care providers” [1]. Advance care planning provides an opportunity for individuals to indicate, ahead of time, the type of care they want if they become unable to express these preferences themselves. Advance care planning will often lead to the completion of an advance care directive and/or the appointment of a substitute decision maker to help ensure care preferences are respected. Optimally, advance care planning should occur as a series of conversations, and patients’ priorities and preferences should be reviewed and updated over time as needs change [2]. Systematic reviews indicate that engaging in advance care planning has numerous benefits. These include improving the likelihood that care provided aligns with the patients’ goals and values, reducing unwanted and unnecessary admission to hospital at the end of life, improving patient satisfaction and quality of life, and relieving family anxiety and burden of decision making [3–5]. Healthcare savings have also been found for some patient groups including community-dwelling people with dementia and people residing in nursing homes [6, 7]. Within Australia, all Australian states and territories recognise advance care planning under either statutory law or common law, however there are differences between jurisdictions in terminology and requirements for completing and enacting advance care planning processes.

The significance of advance care planning for people with dementia is widely acknowledged [2, 8, 9]. Dementia refers to a collection of neurological disorders that are characterised by progressive memory loss and cognitive impairment [10]. In 2022, it is estimated that there are 487,500 people living with dementia in Australia, with this figure projected to increase to more than 1 million people by 2058 [11]. Ensuring people diagnosed with dementia are supported to engage in advance care planning is critical given the unpredictable progressive nature of the disease, and its impact on decisional capacity [12]. Despite this, there is little data available about participation in advance care planning by people with dementia. A recent medical record audit estimated that only approximately 60% of Australians with dementia have advance care planning documentation located in their medical records [13]. Other studies conducted in the UK have shown that people with dementia are more likely to have undertaken financial planning (e.g. completing a will or appointing an individual to make financial and legal decisions on their behalf) than documented future health care wishes [14].

Initiating and facilitating discussions about advance care planning with patients and their families is a complex task that requires the provision of clear and easily understandable information delivered in a way that is sensitive, compassionate, empathetic and is tailored to the individual needs of each patient [15]. While advance care planning can be initiated at any time in a person’s life, it is likely that a diagnosis of a terminal disease like dementia may prompt discussions. Known barriers to discussing advance care planning include difficulties with defining the right moment and expressed attitudes from some healthcare providers that the patient should initiate advance care planning [16]. Choosing the right time to have discussions with people with dementia can be challenging given the unpredictable duration and trajectory of the illness, and that dementia is often not perceived as a terminal disease [17, 18]. There has been debate among professionals involved in the care of people with dementia about the optimal time to commence advance care planning discussions [19, 20]. Given the progressive nature of the disease, it is too late to commence advance care planning discussions when dementia is significantly progressed and decision-making capacity significantly impacted [20, 21]. While some suggest advance care planning should therefore start as soon as the diagnosis is made when the person is able to be actively involved and patient preferences, values, needs and beliefs can be elicited [19], others consider the point of diagnosis too early, and suggest the right time to raise advance care planning remains unclear [20]. While caregivers of people with dementia generally agree that discussions about advance care planning are both appropriate to have but also difficult [22, 23], considerably less research has examined when persons with dementia and their caregivers think discussions should occur, and work that has been conducted is qualitative. Sussman et al examined perceptions about optimal timing of discussions about future care amongst people with dementia and their caregivers and found variation in perceptions; while some people with dementia were ready to have discussions, many more persons with dementia and their families felt threatened by discussions that necessarily required them to consider future deterioration [23]. As caregivers witness firsthand the impact of cognitive decline and play a significant role in providing day-to-day support and making care decisions for the person they support, they have a unique perspective to offer about the potential benefits and consequences of different timing of advance care planning discussions.

Research has shown that advance care planning conversations are not often initiated by the person living with dementia [24]. Facilitating advance care planning is therefore the responsibility of health care providers involved in a patient’s care [8, 25]. However, there is continued debate about which professional group should take overall responsibility for encouraging engagement with advance care planning among patients, with many healthcare providers reporting that they lack the skills, resources and training to support patients to engage with advance care planning [20]. The process of diagnosis and ongoing management of dementia typically includes multiple healthcare providers, yet it is unclear who is most often involved in advance care planning discussions for people with dementia. It has been suggested that general practitioners have a key role to play in initiating advance care planning with persons with dementia given they often have long lasting relationships and act as gatekeepers in the healthcare system [8, 26]. To date, few studies have explored who initiates advance care planning conversations. This information is critical to understand current practices and preferences, and to guide the provision of advance care planning for people with dementia.

Materials and methods

Results

Sample

A total of 198 carers of people with dementia participated (48% consent rate). The sociodemographic characteristics of carers, and the people with dementia they support, are outlined in Table 1. Most participants were female (74%), were a partner (78%) or parent (19%) to the person with dementia they were caring for, and time since diagnosis of the person they cared for was less than 5 years (73%). The average age of carers was 70.6 years (SD = 11.4).

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Table 1. Sociodemographic characteristics of carers, and the people with dementia they support (n = 198).

https://doi.org/10.1371/journal.pone.0286261.t001

Participation in future medical and financial planning

Table 2 shows which documents participants had prepared and when they were prepared. Almost all participants reported that the person with dementia they support had made a Will (97%), appointed an Enduring Guardian (93%), and appointed an Enduring Power of Attorney (89%). Only 47% had completed an advance care directive. Most documents were reported to have been completed before being diagnosed with dementia. Overall, 3 (1.5%) carers reported that the person with dementia they support had not completed any of the four documents asked about. In contrast, 45% (n = 89) of carers reported that the person with dementia they support had completed all 4 documents, 44% (n = 87) had completed 3, 5.1% (n = 10) had completed 2, and 4.6% (n = 9) had completed only one. There were no significant associations between the characteristics of the person with dementia, and whether they reported having prepared an advance care directive (Table 3).

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Table 2. Number (%) of participants who have completed advanced care planning (N = 198).

https://doi.org/10.1371/journal.pone.0286261.t002

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Table 3. Characteristics associated with having an advance care directive (N = 159).

https://doi.org/10.1371/journal.pone.0286261.t003

Discussion of advance care planning following a diagnosis of dementia

Table 4 reports the categories of people reported as having spoken about advance care planning with either the carer or person with dementia following diagnosis. Discussions about advance care planning had most often occurred with Geriatricians (53%, n = 103) and GPs (51%, n = 100). Nineteen percent of respondents (n = 38) indicated that no one had talked to them or the person they support about advance care planning following the dementia diagnosis.

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Table 4. Who advance care planning was discussed with following a diagnosis of dementia (N = 196)^*.

https://doi.org/10.1371/journal.pone.0286261.t004

Discussion

Overall, 88% of participants reported that the person living with dementia who they support had appointed an enduring guardian, and rates of financial planning were greater than 90%. These rates are consistent with other studies internationally [14, 20]. In contrast, carers reported that almost half of people with dementia did not have an advance care directive, despite being at substantial risk of future decisional incapacity as a result of their diagnosis [14, 20]. Other work has explored engagement in and preferences for advance care planning from the perspective of family caregivers caring for loved ones with young-onset dementia [29] and found similarly low levels of engagement in advance care planning, with plans for the future typically relating to non-medical affairs. Careful consideration should be given to the discrepancies in participation in financial planning compared to medical planning and understanding the reasons underpinning these differences. It is unclear what accounts for the disparate rates of completion of these differing advance care planning processes. It is possible that low rates of completion of advance care directives may be the result of uncertainties about the trajectory of deterioration of health, unwillingness or inability to anticipate potential future ill-health scenarios, the complex discussions and decisions involved in making future healthcare decisions, and/or a lack of understanding of the likely trajectory of disease, particularly in the case of dementia [24, 30].

Almost all carers of people with dementia believe advance care planning should be discussed by healthcare providers following a diagnosis of dementia. In this sample, advance care planning discussions with GPs and geriatricians occurred for approximately half of the sample, and advance care planning conversations had occurred with a lawyer/solicitor or family member for more than a third. Discussion of advance care planning with lawyers and solicitors may be a result of opportunistic discussions about advance care planning during financial planning. However, one in five had not had any discussions about advance care planning. Barriers and enablers to engaging in discussions about advance care planning have been well explored from both patient [31–33] and healthcare provider [16, 32, 34, 35] perspectives across settings, countries and population groups. There is strong evidence that positive perceptions about advance care planning and beliefs about its benefits do not necessarily translate into more end-of-life conversations [4]. Healthcare providers report lacking the time, resources, training and confidence to initiate and implement advance care planning [14]. Recent work has explored educational strategies to encourage discussion of advance care planning with people with dementia by general practitioners, finding that the inclusion of interactive and didactic components, targeting patients motivated and/or willing to participate in advance care planning, and the discussion of non-medical preferences as a starting point to discussions were key to effective advance care planning uptake [36, 37]. Other work has suggested that adequate knowledge and skills amongst patients, family and health-care professionals, patient and healthcare provider willingness to participate in advance care planning, strong relationships, effective administrative systems and contextual factors including embedding advance care planning into routine or standard care are important in residential aged care settings [38]. Effective models that promote discussion and documentation of advance care planning documents for people with dementia are needed.

There was variability in preferences for timing of discussion about advance care planning, however more than half of participants believed advance care planning discussions should occur at diagnosis or in the weeks/ months following a diagnosis. A further quarter of participants believed that healthcare providers should decide the appropriate time for discussion. Previous studies have highlighted the difficulties in understanding the right time to commence advance care planning discussions given the complexities of balancing the need to understand and accept the diagnosis of a serious illness, and having advance care planning documents in place before capacity is impacted [14, 19, 39, 40]. In interviews, people with dementia often expressed a reluctance to plan or consider too far into the future when considering advance care planning [14]. While patients’ readiness to engage in advance care planning is often considered a prerequisite for starting advance care planning conversations by healthcare professionals, uncertainty about a patient’s readiness to discuss advance care planning has been shown to impede the uptake of advance care planning in clinical practice [41, 42]. Our findings suggest that caregivers of patients with dementia are overwhelmingly supportive of healthcare providers initiating discussions early, or at the discretion of their healthcare provider. Further studies are needed to explore whether this finding aligns with the preferences expressed by people with dementia. Information could also be provided to caregivers soon after diagnosis about how they can initiate these conversations with the person they support and the type of questions they could consider together.

Conclusions

Despite being at substantial risk of future decisional incapacity, more than half of people with dementia do not have an advance care directive. Carers of people with dementia believe advance care planning should be discussed by healthcare providers following a diagnosis of dementia.