The perspectives of people with dementia and their supporters on advance care planning: A qualitative study with the European Working Group of People with Dementia

Abstract

Background:

Advance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia.

Aim:

To gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care planning is defined and develop recommendations for changes to the definition.

Design:

An in-depth qualitative study was conducted, analysing online focus groups and interviews using thematic analysis.

Setting/participants:

We included 12 people with dementia and 9 supporters.

Results:

Participants suggested several changes to the current advance care planning definition: mentioning people with decreasing decisional capacity; better reflecting the role of family and/or trust-based relationships; reducing focus on end-of-life/medical decisions; strengthening focus on social aspects of care. Elements of the current definition that participants suggested keeping and highlighting include the framing of advance care planning as a continuous process, that is also optional; mention of communication next to documentation of decisions; and the importance of proxy decision makers. Based on this input, we developed three overarching and 16 specific recommendations for a modified definition of advance care planning that is inclusive of people with dementia.

Conclusions:

The perspectives of the European Working Group of People with Dementia and their supporters highlighted the need for a person-centred and dementia-inclusive advance care planning definition. We provide tangible recommendations for future adaptations of the definition that reflect these perspectives.

What is already known about this topic?

• Advance care planning has been defined in an international consensus paper.

• Advance care planning is particularly relevant for people with dementia, however, the definition of advance care planning may not be applicable to them.

• People with the dementia were not involved in the development of current definitions of advance care planning.

What this paper adds?

• The existing definition of advance care planning should be adapted to be more inclusive and applicable to people with dementia.

• A more person-centred approach to advance care planning should be highlighted in the definition, which would emphasise discussions of social aspects of care and what matters most in the future.

• The definition of advance care planning should better reflect the role of families or trust-based relationships.

Implications for practice, theory and policy

• Using a dementia-inclusive and person-centred definition of advance care planning can lead to interventions and policies that better reflect the needs of people with dementia and their supporters.

Introduction

Advance care planning has been advocated as a process that enables individuals to make plans about their future health care. ¹ Over the past decades, advance care planning has been increasingly studied and has been defined in multiple ways.^1–3 Originally seen as a documentation-focused process encouraging the completion of advance directive documents, the concept of advance care planning has shifted towards a broader concept of communication about several aspects of future care and treatment planning.^3,4 Advocates of advance care planning argue that it should be common practice in planning the treatment of patients with all life-limiting illnesses. ⁵

In a recent international consensus paper, supported by the European Association for Palliative Care, advance care planning was 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. advance care planning addresses individuals’ concerns across the physical, psychological, social, and spiritual domains. It encourages individuals to identify a personal representative and to record and regularly review any preferences, so that their preferences can be taken into account should they, at some point, be unable to make their own decisions’. ²

Recommendations for the application of this definition were developed, which deal with aspects such as the readiness of the individual to engage in advance care planning, as well as the content of advance care planning and how to target it depending on the condition. ²

There are several shortcomings in this definition. It requires people to have decisional capacity to engage in the process and can thus not be applied to people who lack decisional capacity ⁶ such as many people with dementia. The process of advance care planning is however particularly relevant for people with dementia and people close to them, as many people with dementia gradually lose their ability to make informed decisions, verbal communication becomes more difficult and people close to them play an increasing important role in decision-making.^6,7 Although loss of capacity may occur in many different conditions, especially when nearing end of life, people with dementia are particularly affected due to the extended duration over which capacity can gradually decrease. ⁸ Several advance care planning interventions for people with dementia have been developed to tackle this, however there is no consensus about what advance care planning for people with dementia should include. ⁹

The inclusion of people with dementia and people close to them in research is essential to ensure that their needs and perspectives are fully understood and considered in the development of interventions. ¹⁰ The definition of advance care planning has been developed mainly based on professional expert recommendations and a small number of patients’ relatives with experience of terminal illness and acting as patient representatives. However, people with dementia and their family members were excluded as experts by experience. ² People with dementia have not been part of the process of describing advance care planning for their group, and more generally, their voices are missing in the scientific developments in this field. Therefore, this research addresses the gap in patient involvement in the work leading to the definition of advance care planning. We aimed to (1) obtain the perspective of a multinational group of people with dementia on how advance care planning is defined, and (2) develop recommendations for changes to the definition of advance care planning based on these perspectives.

Methods

Study design

We conducted an in-depth qualitative study (focus groups and interviews) with a multinational group of people with dementia and people close to them. We used thematic analysis to explore their perspectives on the definition of advance care planning and to formulate recommendations for the definition of advance care planning.

Participants

Our participants were being a member of the European Working Group of People with Dementia and their supporters. Members of this group are usually accompanied by a relative, friend or a member of staff from their national Alzheimer Association, and these individuals are referred to as supporters. ¹¹ This European group is coordinated by Alzheimer Europe and composed of people with dementia who are nominated by their national associations. ¹¹ The working language of the group is English. In the case that members are not English-speaking, their supporter can act as interpreter.

All members of the group and their supporters were invited to participate in the study by email. AD and DG, who are familiar with the working group, were the main point of contact with the participants. The main inclusion criteria were (1) being a member of the European Working Group of People with Dementia or being the chosen supporter of one of the members, and (2) participants’ expressed willingness and consent to engage in discussions related to advance care planning. All members of the European Working Group of People with Dementia are in the mild to moderate stages of dementia, and thus should have the capacity to understand what is being asked of them. Participants could have any age, dementia type, length of illness and comorbidity or could be from any country.

Our study population was limited to the size of the working group. However, we aimed to include this specific group to ensure diversity of perspectives. The European Working Group of People with Dementia is a multinational group with members from varying backgrounds, experiences, and cultural contexts. Furthermore, we used a combination of data collection strategies, that is, focus groups and follow-up interviews, which allowed us to engage in detailed discussions with all participants. This depth of engagement allowed us to explore the topic thoroughly, ensuring that we obtained rich and nuanced insights.

Data collection

We conducted online focus groups and interviews in English. To support people with dementia during the process and facilitate online participation, we used adapted materials and procedures, which are summarised in Table 1. Supporters played a double role in the process, as they were respondents in both focus groups and interviews, but could also be asked to provide assistance to people with dementia if needed or act as interpreter for not English-speaking participants.

Table 1.

Measures to facilitate online participation.

Measures	Description of measures
Availability of preparation materials	• Preparation materials, that is, information sheets presenting the definition of advance care planning and questions that would be addressed during the study, were sent two weeks before the focus group or interview.
	• All materials were developed considering guidance on how to present materials to people with dementia such as: use of colour, clear wording, page layout and font size.12,13
Focus group or interview procedures	• Limitations in terms of time and number of participants were implemented: six to eight participants were included per focus groups and focus groups and interviews were limited to 1 hour.
	• Clear and structured interview-guides were developed with carefully prepared questions and prompts in case people with dementia needed help understanding the questions.
	• People with dementia could always be accompanied by a supporter to help them if needed.
	• Time was allocated during the focus group/interview to enable participants to reflect on the questions and prepare their answers.

Focus groups

We conducted three online focus groups in November 2020, which were led by two moderators (LP and LVdB) and an observer (FM), who assisted with technical problems, moderated the chat and took notes. AD and DG were also present as they are familiar with the members of group. We used a semi-structured topic guide and PowerPoint slides to give an overview of the extended definition of advance care planning and present the questions to participants. Specifically, the researchers presented a deconstruction of the definition into the ‘what’, ‘why’, ‘who’ and ‘when’ of advance care planning (Figure 1), which was used as visual prompt. Participants were asked to reflect on the definition of advance care planning and to what extent it reflected their experiences. They shared their ideas one after the other to ensure fair participation and then discussed their ideas as a group.

Figure 1.

Deconstruction of the extended definition of advance care planning.

Follow-up interviews

At the end of each focus group, participants were invited to follow-up interviews. The semi-structured interview schedule was guided by the findings of the focus groups. Interviews commenced with a reminder of the definition of advance care planning using Figure 1. The interviewer (FM) invited participants to elaborate on the main three themes that emerged from the focus groups. Interviews were conducted on Zoom between June and July 2021.

Analysis

Audio-recorded focus groups and interviews were transcribed verbatim. De-identified transcripts were coded using thematic analysis, following steps recommended by Braun and Clarke, ¹⁴ and using NVivo12. Two researchers (FM and CD) first read each transcript thoroughly. The main constructs derived from the existing definition of advance care planning were used as a framework. Next to this, we also used open codes that did not fall within these pre-existing concepts but were reflective of the content resulting from the focus groups and interviews. Both researchers individually coded the data. First, they assigned pre-defined codes and then iteratively assigned preliminary open codes.^14,15 This underwent several rounds of refinement, which included iterative processes of shifting between transcripts and codes while continuously revising the codes. Between these iterations, the researchers met to explore different opinions on the data and finally to agree on a list of codes. Subsequently, our attention turned towards comprehensively interpreting the content as a whole. FM organised the codes into candidate themes and subthemes, reinspected the codes within each theme and identified recurring topics within the content. Finally, FM named and presented the themes and sub-themes. Following the analysis of the focus groups and interviews, the authors developed a list of recommendations based on these findings.

Ethics

Participants received an information letter and link to an online informed consent form. This process required some adaptations in terms of formulation to make the materials as accessible as possible. Additionally, participants were asked to give verbal consent to recording. The study received ethical approval from the Ethics Review Board of the Brussels University Hospital of the Vrije Universiteit Brussel (BUN: 1432020000199).

Results

The focus groups involved 21 participants, of which 12 were people with dementia and 9 supporters. Participants were from Ireland, United Kingdom, Germany, Slovenia, Iceland, Sweden, Austria, Belgium and Portugal. Interviews were conducted with nine people with dementia and seven supporters. Four people with dementia needed their supporter to act as interpreter. Supporters were partners (n = 4), children (n = 2), siblings (n = 1) or friends/members of a national dementia association (n = 3). We identified two themes and nine sub-themes (Figure 2).

Figure 2.

Thematic map of the findings.

Elements to change in the advance care planning definition

Several aspects of the definition of advance care planning were highlighted as either missing or not emphasised enough. Participants reflected on elements which they thought should be improved in the definition to better reflect their experiences with advance care planning. This related to who is involved in advance care planning and what advance care planning entails.

Excludes people with decreasing decisional capacity

Participants highlighted that the focus of the current advance care planning definition on individuals with decisional capacity excluded many people with dementia from the process of advance care planning. They noted that decisional capacity is a gradual process and may be dependent on the situation or the person with whom advance care planning conversations are taking place.

‘I have a friend who lost his communication skills. He stopped talking quite early on in his dementia. And everybody assumed that because he couldn’t talk that he didn’t have capacity. And he still did. He could still read, he could listen, he could think. So you know, you have to take it all into consideration’.

(Person with dementia #1)

Furthermore, participants discussed strategies to support decisional capacity and involve the person with dementia in advance care planning as long as possible. Decisional capacity was seen as knowing what one wants, knowing what one does or as understanding questions and consequences of different decisions. Some participants also reflected on the way that decisional capacity is assessed in practice, and advocated for a triangular process to this assessment, involving the person with dementia, a family caregiver and a health professional.

Role of family and/or trust-based relationships is not sufficiently reflected

Participants reflected on the fact that the definition did not show the importance of families or other trust-based relationships (e.g. friend, neighbour, family of choice) in advance care planning. Many noted that family dynamics may differ among people and that the decision of whom to involve in advance care planning concerned trust-based relationships in general rather than family ties only. Participants found that families or people whom they trust should be involved in advance care planning because of their extensive personal knowledge of the person with dementia.

‘So it’s really important as the disease progresses that the loved ones are involved in their advance care decisions. Because they know their loved ones, they know the person, they know their personality and they know what that person would prefer’.

(Supporter #5)

Participants highlighted that for the sake of clarity, it is of utmost importance that families and people whom they trust are up-to-date concerning the wishes of the person with dementia. Additionally, they also commented on the importance of discussing the potential role of family and people they trust in advance care planning, both in the present and as the condition evolves in the future. People with dementia particularly noted that considering the importance of families or trust-based relationships in the process, support systems are needed to conduct advance care planning conversations and to deal with any potential negative consequences of these conversations, such as emotional burden.

Advance care planning is not only about end-of-life and medical decisions

The members of the group and their supporters perceived an emphasis on medical decisions and end-of-life care within the definition of advance care planning. Although the definition mentions other aspects within advance care planning such as psychological, social or spiritual needs, they noted a stronger emphasis on preferences for medical treatments. Participants also found that emphasis on medical decisions was reflected in their experiences in practice, where the focus was solely on medical treatment decisions and end-of-life care preferences. They emphasised the importance of considering advance care planning as a process that enables them to identify what matters most to them in the future, including but not limited to medical decisions and end-of-life care preferences.

‘Well, I think when we talk about advance care planning there’s a concentration on how we are going to leave this world. Advance care planning to me is how we’re going to live in the world as well’.

(Person with dementia #3)

Social aspects of care should be emphasised

Participants found that social aspects of care were of utmost importance within advance care planning, and should be emphasised in the definition. They described social aspects of care as: (1) future daily activities, (2) future psychosocial interventions, (3) place of residence, (4) place of death.

‘When I think about social aspects of care, it could be for example that: my husband is a very social person and he wants to be among people even if he can’t contribute in the way somebody without dementia can. You know those types of social aspects. To do all the things he always loved doing. If he was still able to walk, he’s always gone walking. It could be seen in a care setting that he is wandering. No he’s not wandering, he’s always gone out for walks’.

(Supporter #2)

Participants also reflected on the fact that social aspects of care can be difficult to discuss, particularly with health professionals. They noted issues with recording their preferences for these aspects of care, as most advance directives may not provide this option.

Elements to keep in the advance care planning definition

Several aspects of the definition of advance care planning were positively perceived by the participants. Overall, they found that the definition was comprehensive in terms of what the process involved and when it should be done.

Advance care planning as a process that needs to be reviewed regularly

Participants supported the notion that advance care planning should be a process, rather than a one-off event. All emphasised the need to give people with dementia the opportunity to regularly review their advance care planning decisions.

‘It says advance care planning is a process rather than a one-time event. And I agree with that it’s extremely important that it is a process and that it is revised regularly’.

(Person with dementia #8)

Some people with dementia also mentioned that in many cases people may not know that they can change their wishes if they want to, and that more effort to raise awareness about the process itself should be made.

Encourages the choice of a proxy decision maker

All participants agreed with the part of the definition dealing with the choice of a proxy decision maker. They mentioned that the proxy decision maker should be a person they trust, and someone who understands the wishes of the person with dementia. Furthermore, they reflected on the difficult role of the proxy decision maker, which includes advocating for the person with dementia and advocating for his/her wishes, as well as coordinating care with families and health professionals according to what is considered in the best interest of the person with dementia.

‘ The role of the proxy decision maker is to implement as far as possible the wishes of the person who has made that decision. And it has to be as far as possible. Because you can’t always do it. But at least you have an idea, some parameters to go by. You know what they want and you do your best to do that’.

(Supporter #7)

Communication and documentation about wishes for future care

Participants highlighted the importance of: (1) communicating about advance care planning with both families or people they trust, and health professionals; and (2) documenting preferences in advance directives. They reflected that communicating about and documenting advance care planning decisions could give a sense of control to the person with dementia, less burden for the family and people they trust in moments when decisions have to be made, and finally a sense of relief for both parties.

‘[In the context of moving to a care facility] That’s going to be a tough day for me and that’s going to be a tough day for them. But they will know, if it’s done early enough, that this is what I’ve asked for and this is what I want’.

(Person with dementia #1)

Advance care planning as an option

Both people with dementia and supporters highlighted that advance care planning should remain optional, and that if the person with dementia did not wish to discuss it, they should be free not to. Furthermore, many noted that the advance care planning process should be conducted at the pace of the person with dementia, and that they should be able to stop whenever they wish to. Some also mentioned that ideally, advance care planning should be conducted as early as possible after, if not before, diagnosis.

‘As family, you can encourage, gently encourage and use some gentle persuasion to say it is for your best to discuss it. But some people with dementia are hard nuts to crack and so stubborn. So if they won’t, you cannot force the’.

(Supporter #3)

Recommendations

Table 2 summarises recommendations for the definition of advance care planning derived from the input of the European Working Group of People with Dementia and their supporters. They range from the need for a dementia-inclusive definition, elements from the current definition that should remain, to elements that should be adapted or stressed.

Table 2.

Recommendations for the advance care planning definition, comparison to the current extended definition, example quotes.

Recommendations	Comparison to the extended definition. 2	Example quotes
1. The current definition of advance care planning should be adapted in a way that is dementia-inclusive. A separate definition for people with dementia is not needed, but the current one should be adapted to be inclusive. More specifically:	The European Working Group of People with Dementia noted that currently the definition of advance care planning excludes many people with dementia, as its focus is solely on ‘individuals who have decisional capacity’.
a. Advance care planning should be accessible and inclusive to all, including people with diminishing decisional capacity.		‘So I think that that needs to be taken into consideration, but to be honest with you, I think a generic definition with smaller changes for our needs is all that is required because we’re no different’ (person with dementia #2).
b. Loss of decisional capacity is a gradual process and may be situation- or task-specific, and should therefore not be seen as a ‘black and white’ event that excludes people from taking part in advance care planning.		‘Well we think that yes somebody can become very advanced in their dementia, but they still may be able to make an informed decision with the correct support of somebody who knows them well, or the health care practitioner. So just because somebody has reached a certain stage, we mustn’t forget that they may still be able this kind of. . . If they can’t make the decision, at least give us some hmm input as to how they feel about it’ (dyad – person with dementia #4 and supporter #4)
c. Clear strategies to assess the level of capacity of a person should be put into place, adopting a triangular process involving the person, the family caregiver and health professionals.		‘We have to invite them every time there is a decision made. We have to invite them for their opinions and their thoughts. The fact that they may not be able to articulate to our level, then that’s our fault. We need to facilitate as best we can that they understand the question being asked and that they elicit the answer that they want to give us. Not the answer that we want it to be’ (supporter #6)
2. Several elements of the current extended definition of advance care planning have been identified and stressed by the European Working Group of People with Dementia as important for advance care planning in the context of dementia, and therefore should remain and be highlighted in a dementia-inclusive definition. They relate to the goals, content and timing of advance care planning:	These elements are currently already present in the extended definition of advance care planning or its accompanying recommendations and were stressed as particularly important. Excerpts from the extended definition that relate to the recommendations made by the European Working Group of People with Dementia:
a. Advance care planning should encourage communication and documentation of decisions about preferences for future care and treatment, but should not be limited to the completion of advance directives.	‘[. . .] to define goals and preferences for future medical treatment and care, and to discuss these with family and health-care providers [. . .] and to record and regularly review’	‘For her it is important that this topic is sufficiently talked about in the family. And whether the family knows the person, in this case her, well enough. And she is aware that this depends on her, that she has to talk about it now with her family and the people who support her’ (person with dementia #12)
b. Advance care planning can involve the identification and appointment of a proxy decision maker, whose role is to advocate for the person with dementia, implement their preferences for future care and be involved in the coordination of their care in the event that the person with dementia cannot do so themselves.	‘[. . .] It encourages individuals to identify a personal representative [. . .]’	‘But there may be the odd one or two who may have motives of their own. And that’s the point of the proxy. It’s always important to appoint a strong advocate. Because the job is so difficult’ (supporter #1)
c. People with dementia should be given the opportunity and be encouraged to regularly review previous choices and wishes stated as part of the advance care planning process.	‘[. . .]and regularly review any preferences’	‘advance care planning lifts a weight from your shoulders, because I’m not afraid to die. I don’t want to but I’m not afraid to. It’s the manner in which you die that concerns me. I’m terrified absolutely that I’ll end up on the sidewalk somewhere and of just fading away. And so I’ve got advance directives in place. I’ve got a proxy to make sure that these happen and we review them regularly, yearly almost’ (person with dementia #3)
d. Advance care planning should ideally be initiated early; at a time where the person is healthy or at least as soon as possible after a dementia diagnosis.	Recommendation 19: ‘Individuals can engage in advance care planning in any stage of life but its content can be more targeted as their health condition worsens or as they age’	‘The problem with the whole thing around advance care planning and the whole thing about capacity is that usually these questions are asked too late’ (supporter #2)
e. The advance care planning process should be conducted at the pace of the person with dementia, according to their readiness to discuss and engage in advance care planning.	Recommendation 2: ‘Advance care planning should be adapted to the individual’s readiness to engage in the advance care planning process’.	‘But if you don’t want to talk about it, then that’s fine! Absolutely fine. Nobody should be forced to put advance directives in place’ (person with dementia #10)
3. Several elements of the current extended definition of advance care planning should be adapted to better reflect the experiences and perspectives of people with dementia and their family caregivers in the context of advance care planning. They relate to the content of advance care planning, as well as the people involved in the advance care planning process and their roles:	These elements are currently either missing from the extended definition of advance care planning or its accompanying recommendations, or are part of the definition/recommendations but are not stressed or elaborate enough. Excerpts that are concerned:
a. Advance care planning should be a communication process about what matters most to the person with dementia in addition to their values and preferences for their future care and medical treatment.	‘identify their values, [. . .], to define goals and preferences for future medical treatment and care, and to discuss these’. The notion of what matters most to the individual is lacking from the definition.	‘She wants to go out in the fresh air, also if she cannot walk anymore. Then somebody should bring her out in the garden. And she can hear the birds twittering and feel the sun on her body or her face and she can smell the flowers and. . . yeah it is very important for her to be close to the nature and in the fresh air. And sometimes she says she wants to have her cake every day. Also, if the parameters in her blood speak for it, she still wants it. And she would like that somebody comes and takes her hand and gives her a hand massage, and things like that’ (person with dementia #8)
b. Advance care planning should focus on preferences for how people with dementia want to live with dementia, including but not limited to medical treatments or end-of-life care.	‘identify their values, [. . .], to define goals and preferences for future medical treatment and care, and to discuss these’. The notion of preferences for the future life is missing from the definition.	‘I think that these are such important issues but the difficulty is that people recognise advance care planning as a death contract, but it’s not. It’s how you want to be treated from the day of diagnosis. What pathways you want to go through, what steps you want to take’ (person with dementia #1)
c. While eliciting preferences for future care and medical treatment is important, a stronger emphasis is needed on social aspects of care such as wishes for meaningful future daily activities, choice of place of residence/care and place of death and wishes for future psychosocial interventions.	‘[. . .]. Advance care planning addresses individuals’ concerns across the physical, psychological, social, and spiritual domains’. The social aspects of care were found to be particularly important and should be further highlighted in the definition.	‘So I mean I am more for the natural things. You know I’m at peace when I’m at home. I’m at peace when I am surrounded in nature and I want to die peacefully’ (person with dementia #6)
d. People with dementia should be able to discuss their wishes and preferences concerning social aspects of care with families and health professionals as part of advance care planning. Measures should be put in place to ensure that arrangements for social aspects of care are put in place for as long as possible in the dementia trajectory.	‘[. . .]. Advance care planning addresses individuals’ concerns across the physical, psychological, social, and spiritual domains’. The social aspects of care were found to be particularly important and should be further highlighted in the definition.	‘So if there is really a cut, like it is necessary to go into a nursing home, then we have already decided for one which is really next to our apartment that we have currently and then there should be a good possibility to still communicate and so we have foreseen some things like that. So it’s not far away from where we live right now and so there is also the benefit that I know the region and maybe I don’t get so easily lost in the case that I walk alone and things like that’ (person with dementia #7)
e. Advance care planning should be embedded within a broader person-centred care planning approach to enable people with dementia to discuss social aspects of care with their health professionals and document related wishes.	‘[. . .] Advance care planning addresses individuals’ concerns across the physical, psychological, social, and spiritual domains’. The social aspects of care were found to be particularly important and should be further highlighted in the definition.	‘these medical things you can write down in a directive. But the social things are very difficult to include, they are necessary of course, but it is difficult the way it is now’ (supporter #1)
f. The role of family in advance care planning may depend on family dynamics, hence the involvement of families in advance care planning should be flexible and in line with the wishes of the person with dementia. Families might be involved from the start of the advance care planning or asked to step in later in the process when capacity starts to decline. Roles might vary and range from being involved in the decision-making process, supporting the person with dementia in their decisions, or ensuring that the decisions of the person with dementia can be implemented.	‘[. . .] discuss these with family and health-care providers’. Family involvement and the role of family should be more explicit and elaborated on in the definition.	‘Well you know my family knows me better than anybody else. And they also know the old me. And I think that’s really important. Hopefully they can support me in my decisions. There is always the more unscrupulous members of some families, but you’ve got to put your trust in someone you know’ (person with dementia #5)
g. The essential role of trust-based relationships in advance care planning and the choice of a proxy decision-maker in the context of dementia should be emphasised. This implies that people of trust have personal knowledge of the person with dementia and can be relied upon to respect their wishes. Trust-based relationships may include family members such as partners, children, parents or relatives, but also other people close to them such as friends.	‘[. . .] discuss these with family and health-care providers’. More than familial ties, trust-based relationships were valued in the advance care planning process and the choice of proxy decision-maker, and thus should be added to the definition.	‘the most important persons are family. But also people who know me well and who accompanied me for a longer time before. It is very important that there is trust’ (person with dementia #1)
h. Support systems should be put in place for people with dementia and their families or people close to them to have advance care planning conversations and deal with any issues that may arise such as: emotional difficulties with the topic, difficulties to understand the wishes of the person with dementia, unwillingness of one of the parties to discuss advance care planning or familial conflicts.	‘[. . .] to discuss these with family and health-care providers’. In addition to discussing advance care planning with family and health-care providers, people may need additional support in engaging in advance care planning.	‘But it should be something that is offered. I like the idea of maybe somebody coming independently in and negotiating with the family. Because sometimes it can be very difficult for a wife or a son or daughter or husband to hear: please, if something happens, don’t resuscitate me’ (supporter #7)

Discussion

Main findings

Our study reports the perspectives of the European Working Group of People with Dementia and their supporters on the extended definition of advance care planning and makes recommendations based on their input. They expressed support for several aspects of the current definition that they considered essential, such as advance care planning being a process that is reviewed regularly and that is optional. Participants also agreed that advance care planning should encourage communication and documentation of decisions about future care, and should not be limited to the completion of advance directives. The European Working Group of People with Dementia also made important and tangible suggestions for changes to the current definition of advance care planning. They highlighted the need for the definition to include people with declining decisional capacity, better reflect the role of families or trust-based relationships, and better address social aspects of care.

A central point raised by the group is the need for a dementia-inclusive definition of advance care planning. Dementia introduces specific challenges compared to other serious illnesses, such as the gradual – although fluctuating – loss of decisional capacity. However, advance care planning should be applicable to all regardless of their condition. Our participants highlighted that the main aspect excluding them in the current definition was the clear focus on people with decisional capacity only. At the same time, they emphasised that there is no need for a separate definition for people with dementia. Instead, the existing definition of advance care planning should be adapted to be more inclusive of people with dementia and applicable to people with or without conditions that influence cognitive capacities. This is consistent with the work of Alzheimer Europe calling for inclusive research and the ethical involvement of people with dementia. ¹⁶ Other approaches have also advocated for dementia-inclusive research, such as dementia-friendly communities, which aim to ensure that people with dementia are entitled to equal opportunities in all aspects of life as well as equal access to care. ¹⁷

Participants strongly emphasised the role of families and trust-based relationships in the advance care planning process, which they found to be under-addressed in the definition of advance care planning. Families or others one trusts are generally considered to have personal knowledge of the person with dementia, and they are often an important point of contact in communication and decision-making in the later stages of dementia. Our study suggests that the involvement of others should be flexible in terms of timing and extent of involvement. The importance of families and trust-based relationships contrasts with traditional conceptualisations of advance care planning or decision-making that are framed in highly individualised terms. ¹⁸ Our findings highlight the need for a more relational approach to advance care planning, but also emphasises that the person with dementia should be able to choose how others get involved.

Another clear point made by our participants was the importance of social aspects of care within advance care planning. Participants felt that the definition of advance care planning currently focuses too much on medical care, while it should include broader conversations on what matters to people in the future, on social care, and on future meaningful daily life activities. These perspectives reflect current debates about conceptualisations of advance care planning. In past conceptualisations of advance care planning, significant emphasis was placed on the written preparation process, which involves creating documents to specify end-of-life treatment preferences, as well as designating a proxy decision maker. ¹⁹ Under the impulse of public health approaches to care in the last phase of life, advance care planning has evolved to a broader concept of an iterative communication process between the person concerned, people close to him/her and health professionals, about future care and what matters most.^3,4,19,20 However, our participants highlighted that this evolution is not reflected enough in the definition nor in practice. Our study provides further support for discussion about what matters most for the future as part of advance care planning. It calls for a more person-centred care planning approach to advance care planning and for the corresponding changes in its definition.

Strengths and limitations

This study filled an important gap in the involvement of people with dementia and their supporters in the work leading to the definition of advance care planning. This inclusive approach helps to ensure that the perspectives of people with dementia and their supporters are considered in the definition of advance care planning. Our study enriches the palliative care practice by shedding light on the specific needs and perspectives of people with dementia and their supporters in the context of defining advance care planning. We advocate for a more inclusive, holistic and person-centred approach that is sensitive to the unique challenges presented by dementia and provide practical guidance for adapting the definition of advance care planning. The use of a dementia-inclusive definition of advance care planning in practice could lead to interventions and policies that better reflect the needs of people with dementia and their supporters and that are more acceptable to them. Our study is also a successful example of meaningful involvement of people with dementia as participants in qualitative research. It demonstrates that this group can meaningfully participate in online focus groups and interviews. Furthermore, while interviews and focus groups were not conducted in the mother tongue of most participants, our approach allowed individuals who were not fluent in English or who felt more confident expressing themselves in their native language to actively contribute. This was made possible through the presence of their supporters who were fluent in both the native language and English and acted as trusted interpreters. This approach enhanced the quality and richness of the data collected, ensuring that the perspectives of participants who might have otherwise been excluded due to language barriers were effectively captured in our study. This study also has several limitations. The participants are members of an European advisory group, and tend to be rather politically and socially active, which may not reflect the whole of the population of people with dementia. Our study should be replicated in other populations to increase the diversity of the perspectives presented in this paper. Furthermore, it should be noted that not all participants in the focus groups took part in the follow-up interviews, which also may limit the diversity of perspectives in our study.

Conclusion

The perspectives of the European Working Group of People with Dementia emerging from our study contribute to the understanding of advance care planning in dementia and highlight the need for a dementia-inclusive advance care planning definition. Participants stressed important aspects of the current definition of advance care planning such as the description of advance care planning as an optional process that focuses on both communication and documentation and that needs to be reviewed regularly. Our participants highlight several aspects of the definition of advance care planning which should be changed or addressed in more depth, among which are the issues of decisional capacity, family involvement and social aspects of care. We provide tangible recommendations for an adapted definition of advance care planning in line with the perspectives of people with dementia and their supporters.