What matters most? Supporting advance care planning for people with dementia and their families

General Introduction
Advance care planning (ACP) is defined by the European Association for Palliative care as “a process that enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate”.
The practice of ACP has evolved significantly over the decades. Initially, it mostly focused on legal documents for patients to decline specific medical treatments. However, research has shown that ACP should be a dynamic communication process between patients, families, and health professionals, emphasising ongoing discussions and shared decision-making. Despite this, ACP practice still often centres on written documentation and advance directives. The public health approach to ACP stresses the need to explore broader concerns, aligning medical considerations with people’s priorities and values. While ACP conversations often occur in a professional setting, there is a call to expand conversations within the family context (that is outside of professional consultations), fostering a more open and natural dialogue. Both ACP within the family context and ACP with health professionals are seen as complementary approaches, with professionals playing a crucial role in aligning care goals with patient and family preferences.
Dementia is a progressive neurological disorder marked by cognitive decline affecting memory, thinking, behaviour, and daily tasks. It is an umbrella term covering various conditions, with Alzheimer's disease as the most common form. Global dementia prevalence is rising, with an estimated 55 million affected in 2021, and it is expected to double by 2030 and triple by 2050. ACP, though infrequent, is vital for people with dementia, aiding in decision-making preparation and supporting family caregivers as their role becomes prominent. Despite recommendations for early initiation, research indicates ACP engagement remains low, emphasising the need for increased awareness and participation in discussions among people with dementia.
Barriers to ACP in dementia include challenges related to discussing death and the uncertain future, as people with dementia often prefer living in the present and may lack information about the disease trajectory. Cultural factors, family dynamics, and limited knowledge about treatments and decision-making roles can further complicate ACP engagement. Specific needs for ACP in dementia include a clear understanding of the disease trajectory, the increasing involvement of family or friends as cognitive abilities decline, and the recognition of the need for a surrogate decision-maker. Early initiation of ACP is crucial, considering the gradual progression of dementia, and a tailored approach that emphasises personalised care, readiness levels, and communication strategies is essential. Informal conversations within the family context can play a vital role in ACP, providing valuable insights into people’s wishes and preferences. However, both people with dementia and family caregivers may encounter challenges when engaging in ACP conversations, necessitating support to communicate about ACP effectively.
Previous ACP interventions, like professional trainings or documentation booklets, have been primarily aimed at facilitating making decisions for future care and treatment in coordination with healthcare professionals, and have predominantly focused on other patient groups or healthcare professionals, with limited attention to people with dementia. Existing reviews found a scarcity of studies specifically addressing ACP for people with dementia, and those available often involved family caregivers rather than direct involvement of the person with dementia. Challenges in this field include the lack of consensus on a tailored definition of ACP for people living with dementia. Another challenge is the insufficient theoretical underpinning in ACP interventions for people with dementia, as most are either implicit or not validated for this population. Current literature emphasises ACP within professional contexts, leaving a notable gap in guidance for ACP within the family context.
Digital health (the development and use of digital technologies to improve health) offers advantages such as autonomy, tailored support, and accessibility without geographical constraints. Digital health interventions, accessible through various devices such as computers or tablets, have increased in dementia care, addressing diverse needs and promoting independence. Despite potential challenges for older people, including those with dementia, research indicates increasing internet usage and willingness to embrace digital advancements. Building on positive evaluations in other medical contexts, web-based tools hold promise in supporting ACP for people with dementia and their family caregivers. However, existing web-based ACP tools have not specifically targeted or been tested with people with dementia, representing a notable gap in the literature.
Because of the dementia-related changes (e.g. loss of cognitive functions) experienced by people living with dementia, many have recognised the importance of designing dementia-inclusive interfaces. In the evolving field of digital health, user-centred design and patient and public involvement (PPI) are crucial, especially for people with dementia, who have unique needs in navigating digital health interventions. User-centred design prioritises end-users' needs, ensuring the development of intuitive and enjoyable tools. PPI stresses the active involvement of people with dementia in shaping digital health solutions, contributing to the creation of solutions aligned with their unique needs and preferences. This inclusive approach holds promise for increased adoption and benefits, as it reflects the valued input of people with dementia, enhancing usability, satisfaction, and widespread acceptance of digital health tools in this population.
Research aims
The overarching aim of this dissertation is to advance our understanding of how to support people with dementia and family caregivers in advance care planning within the family context. This dissertation is structured around three core aims, each encompassing several objectives.
The first aim revolves around exploring current definitions of ACP and providing recommendations from the perspectives of people with dementia and their families. This included gaining insight into the ACP content on dementia associations’ websites in Europe (objective 1). Additionally, it entailed gathering the perspectives of the European Working Group of People with Dementia (EWGPWD) and their supporters on how ACP is defined and developing recommendations for changes to the definition of ACP (objective 2).
The second aim focuses on developing an ACP support website for people with dementia and their families and evaluating user experiences. This involved describing the protocol for a study aiming to develop and simultaneously test the usability of a user-centred ACP support website designed for, and with, people with dementia and their families (objective 3). Then, it entailed developing and testing an evidence- and theory-based website to support people with dementia and their family caregivers when engaging in ACP within the family context (objective 4). Finally, it included evaluating the use and the experiences of people with dementia and their family caregivers with two interactive web-based tools for reflecting and communicating about ACP (objective 5).
The third aim is to draft recommendations for future web-based tools targeting communication and decision-making for people with dementia. This involved identifying usability requirements, usability testing methods, and design suggestions from studies focusing on web-based tools for communication and decision-making support in dementia care (objective 6).
Methods
To meet the first research aim of this dissertation, we used several methodologies. First, we conducted a content analysis of ACP information on European dementia associations’ websites. Eligible websites, were assessed in multiple languages and screened for ACP content aimed at a broad audience. All relevant content, including webpages and PDF documents, was extracted from the websites. Qualitative content analysis was employed to identify themes, using a reference framework based on international ACP definitions. The accessibility and readability of the websites were also assessed, based on specific criteria outlined in the DEEP guides on creating dementia-friendly websites and information. Second, a qualitative study was conducted involving focus groups and interviews to explore perspectives on the definition of ACP among a multinational group of people with dementia and their family caregivers, specifically members of the European Working Group of People with Dementia (EWGPWD) and their supporters. Data collection included online focus groups and individual interviews. Discussions covered the presentation the consensus definition of ACP supported by the European Association for Palliative care. Data analysis followed a thematic analysis approach. The analysis identified themes and sub-themes, leading to the development of recommendations for changes to the definition of ACP.
To address the second research aim, we used a user-centred approach to develop an ACP support website for people with dementia and their family caregivers. Following Elwyn et al.’s process map for developing web-based decision support interventions and the and Medical Research Council (MRC) framework for complex interventions, the development integrated user-centred design principles and continuous stakeholder engagement. It comprised two stages: content specification and creative design. Needs assessments and evidence synthesis informed content specification, while iterative prototyping and usability testing were conducted during the creative design phase. Several website prototype versions were evaluated through think-aloud sessions and semi-structured interviews, with iterative adaptations based on user input and advisory group feedback. Framework analysis was applied to notes from think-aloud sessions during sprints 1 to 3, and to interview transcripts in sprint 4. Then, we used data from an eight-week convergent parallel mixed methods evaluation study, to provide an overview and evaluate two web-based reflection and communication, which were part of the ACP support website. Data collection involved web log data capturing interactions on the website and semi-structured interviews with dyads or individual family caregivers. Descriptive statistics analysed sociodemographic characteristics, and RStudio was used for log data analysis. Transcribed interviews underwent a framework analysis, initially using pre-established codes and introducing new codes for emerging themes.
Finally, to address the third research aim, we conducted a systematic review to identify usability requirements, testing methods, and design suggestions from studies focusing on web-based tools for communication and decision-making support in dementia care. Searches were performed in MEDLINE, Embase, PsychINFO, Web of Science, and Scopus. Data extraction covered study information, participant demographics, tool descriptions, methods for usability evaluation, and results. A narrative synthesis was then conducted to report patterns across the included studies.
Main findings
In Chapter 2, we analysed 26 dementia association websites in Europe, of which 16 provided content on ACP. Only three addressed all ACP themes in our reference framework, which covered defining ACP, legal and medical aspects, and the quality of life, social and practical aspects of ACP. ACP was explicitly defined on four websites, and the predominant focus across websites that provided ACP content was on legal and medical aspects, particularly advance directives. Less attention was given to themes concerning the quality of life, social and practical aspects of ACP. Additionally, specific to dementia needs emerged, such as gradual loss of decisional capacity and challenges in ACP conversations. While most websites demonstrated clear formatting and structure, essential features like print options and text-to-speech functionalities were less common, and the use of supportive visuals like pictures and videos was not consistently implemented.
In Chapter 3, we gathered insights on the definition of ACP from the EWGPWD and their supporters through online focus groups and individual interviews. While the EWGPWD members expressed support for key aspects of the current ACP definition, such as its emphasis on being a continuous process and promoting communication and documentation of decisions, they urged for a more inclusive approach, addressing individuals with declining decisional capacity, acknowledging the role of families, and emphasising social aspects of care. The EWGPWD and their supporters advocated for a broader definition applicable to both people with and without conditions influencing cognitive capacities, and recommended adapting the current definition to better reflect these perspectives.
In Chapter 4 and 5, we focused on the development of an ACP support website for people with dementia and their families. In Chapter 4, we described the study protocol of the development and usability study of the ACP support website. In Chapter 5, we presented the results of the development and usability study. The study followed the process map and MRC framework, focusing on content specification and creative design to develop an ACP support website for people with dementia and their family caregivers. Employing a 'what matters most' approach, the website promotes ACP conversations by providing comprehensive information, including ACP definition, benefits, advance directives, legal frameworks, and communication tips. Two web-based tools, the ‘Life Wishes Card’ (Levenswensen kaarten in Dutch) (i.e. a card tool with preformulated statements) and ‘Thinking Now About Later’ tool (i.e. a fill-in reflection tool) facilitate engagement in ACP conversations between people with dementia and family caregivers. The website's non-linear and flexible navigation, along with features like font size change, text-to-speech, and contrast options, accommodated diverse user needs. Usability testing with 17 people with dementia and 26 family caregivers revealed factors influencing usability, leading to improvements such as shortened and simplified textual content, reduced abbreviations, and adapted navigation. Tutorial videos were integrated to address challenges experienced by people with dementia to use the two web-based reflection and communication tools.
In Chapter 6, we described in detail the two web-based reflection and communication tools, namely the ‘Thinking Now About Later’ tool and the ‘Life Wishes Cards’ (Levenswensen kaarten in Dutch). We then investigated the usage and experiences of people with dementia and their family caregivers with the two web-based reflection and communication tools. We included 52 participants (21 with dementia and 31 family caregivers) in the study. 22 participants actively used the tools. For those that did use the tools, we found that they facilitated discussions about preferences and wishes for current and future care. Both people with dementia and family caregivers appreciated the structured guidance provided by the web-based reflection and communication tools. Participants experienced some barriers to the use of the tools, including a lack of concrete steps post-tool completion. People with dementia also had some difficulties with using the web-based tools on their own. Family caregivers often played a facilitating role, offering technical, emotional, and cognitive support, and raised concerns about the independent use of web-based tools by people with dementia.
Finally, in Chapter 7, we presented the findings of a systematic review on usability requirements for web-based tools targeting communication and decision-making for people with dementia and their family caregivers. Our search across five databases identified seven studies meeting inclusion criteria, employing methods like surveys, interviews, and cognitive walkthroughs. Key usability requirements included visual appearance, emphasising sophisticated design, simple colour schemes, larger fonts, and image-centric content. Navigation challenges were identified as barriers, emphasising the need for intuitive designs. Content delivery was also an important point, with recommendations for clear, concise textual content, visual examples, and a balanced presentation. Personalisation and flexible, independent use enhanced usability. Despite tools being deemed user-friendly, additional support needs were identified. Solutions to address these needs included embedded tutorials, step-by-step guidance, and face-to-face training.
General Discussion
ACP is deemed crucial in palliative care for people with dementia, yet, at the time of this dissertation, there was a lack of consensus on its definition in this context. We sought the perspectives of a the EWGPWD to fill this gap, identifying three overarching and 16 specific recommendations for a modified, inclusive definition of ACP. These insights informed the content of an ACP support website, ensuring alignment with the preferences of people with dementia. At the end of 2023, the European Association for Palliative Care established a consensus definition of ACP in dementia (based on an international Delphi study). Our study with EWGPWD contributed to this research, through consultations with the group of authors, by emphasising key issues such as capacity or family involvement and engagement. While their approach is dementia-specific, our research underscores the preference of the EWGPWD for a dementia-inclusive adaptation of the existing ACP definition, highlighting an ongoing debate in dementia care regarding inclusive versus specific approaches.
This dissertation reveals disparities in the conceptualisation and implementation of ACP for people with dementia and their family caregivers. While existing definitions emphasise a comprehensive communication process beyond advance directives, our studies find a predominant focus on medical aspects of care in practice. Our participants expressed a desire for a broader ACP approach, incorporating social aspects of care. Accordingly, we propose a 'what matters most' approach to ACP, advocating for inclusive ACP conversations covering not only medical preferences but also current and future social care needs. Our research also underscores the significance of family involvement in ACP. Therefore, we recommend a flexible and family-focused approach that addresses both individual and relational aspects within ACP.
Our research also highlights a significant lack of comprehensive information on ACP on websites. ACP information focused predominantly on legal and medical aspects, neglecting crucial ACP themes like communication with family and health professionals, personal values, and life goals. This information gap acts as a barrier to ACP for people with dementia and their family caregivers, who express concerns about limited access to information on dementia trajectory, ACP, and available care options. Our reference framework, based on recent ACP definitions, can serve as a guide for comprehensive online ACP information. The framework encompasses categories such as legal frameworks, preferences for care and medical treatment, communication, documentation, and personal values.
Moreover, we developed an ACP support website for people with dementia and family caregivers in the family context. This means that the website aimed to support ACP conversations between people with dementia and family caregivers outside of professional consultations. Our approach aligns with the public health perspective in palliative care, aiming to reframe ACP as a health-promoting activity. It is crucial to note that ACP within the family context and ACP with health professionals should not be seen as opposing but rather complementary approaches. The website serves as a valuable tool for people with dementia and family caregivers to facilitate ACP conversations within the family, which can provide insights into individual wishes and preferences before deciding on care and medical treatments with health professionals. While health professionals play a central role in the ACP process, particularly in medical decision-making, the website can serve as a preparatory tool for health professionals, ensuring alignment between conversations within the family context and medical decisions regarding future care and treatment.
Within the development process of the ACP support website, the content specification phase revealed that many existing web-based tools followed a step-by-step linear approach to support ACP. Such a predetermined sequence of steps, encompassing information provision, reflection stimulation, communication support, and written documentation, may not be universally suitable due to variations in individuals' readiness, barriers, and preferences toward ACP. In response, we adopted a flexible and non-linear navigation for the ACP support website, allowing people with dementia and their caregivers to engage in ACP conversations at their own pace. Recognising diverse entry points into the ACP process, we enable users to choose specific sections of the website without navigating the entire content, and pause and resume their interaction. This approach is meant to empower people to address topics aligned with their current readiness level, facilitating autonomy and personalised ACP experiences.
This dissertation emphasises the importance of usability testing in developing technology for people with dementia, involving both their perspectives and those of family caregivers. Usability testing is crucial for considering diverse user needs and experiences. While prior studies often relied on opinions of proxies for people with dementia, we used various methods to gather insights from both people with dementia and family caregivers regarding the usability of the ACP support website. Thorough usability testing led to the development of a website that was deemed as user-friendly. We also demonstrate that different people prefer using the website in different ways. For instance, people with dementia seemed to prefer using the ACP support website together with a family caregiver, leading to family caregivers often taking a facilitating role when using the website. To reduce any potential burden associated with this facilitating role, it is crucial to address technological challenges and implementing personalised support strategies.
Finally, taking into account the digital literacy of people with dementia and family caregivers is essential. Despite the widespread use of the Internet, there are significant differences among age groups, with older people, including many people with dementia, experiencing more challenges. The results of this dissertation highlights the diverse digital skills among people with dementia and family caregivers. While some possess considerable computer experience, others have minimal skills. Our studies highlight that despite user-centred website development, support is required, particularly with the use of the web-based reflection and communication tools. Our findings stress the importance of considering digital exclusion and literacy when developing web-based tools to provide tailored support. The dissertation identifies various forms of support, such as tutorials and face-to-face training, emphasising the need for individualised approaches based on capabilities, preferences, and needs.
Recommendations for practice, policy and research
Recommendations for practice
•ACP could be introduced more as conversations about ‘what matters most’ for the future.
•Encourage accessible design of web-based tools according to the following criteria: visual appearance, navigation and delivery of content, and support use.
Recommendations for policy
•Raise awareness of ACP as a communication process about ‘what matters most’ for the future.
•Ensure that professional organisations provide comprehensive ACP information and resources and ensure that health professionals are trained on how to provide comprehensive ACP information as part of a flexible communication process.
Recommendations for research
•Further evaluate the effects of the ACP support website and study how people with dementia and family caregivers can be optimally supported when using the website.
•Further investigate ACP in the family context and its relationship with ACP with health professionals.
•Use a dementia-inclusive definition of ACP in the development of interventions.
•Facilitate and encourage the participation of people with dementia and family caregivers in research and development of technology.
•Carefully plan patient and public involvement from the start of a project and avoid tokenistic involvement of people with dementia and family caregivers.
•Involve a variety of stakeholders such as people with dementia, family caregivers, and local and regional stakeholders in research and consider diversity.