Advance Care Planning in young-onset dementia: Perspectives of people with dementia, family caregivers and physician

Onderzoeksoutput: PhD Thesis

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Advance care planning (ACP) is considered as an essential element of high quality and ethically sound long-term care after a diagnosis of dementia. ACP is a process of communication between patients, family caregivers and professional caregivers in which the patient's preferences regarding (future) care are explored, including end-of-life care. The overarching goal of ACP is to increase the chance that individuals will receive the care they desire, even at times when they are no longer able to make or to express their own choices. This aim immediately clarifies why ACP can be meaningful in Alzheimer's dementia and related neurodegenerative disorders. After all, dementia is a progressive condition, with no current options to halt or reverse the disease. As a result of Alzheimer's dementia, individuals will increasingly develop difficulties in cognition, memory and day-to-day functioning. Disease progression in dementia will sooner or later result in patients no longer having cognitive capacity. Especially at the end of life, family caregivers of persons with dementia will face potentially difficult medical choices for their loved-one.
Although there is agreement on the potential added value of ACP in dementia, the rate of ACP uptake is particularly low in this population. Evidence suggests that ACP in dementia is associated with specific challenges. Among others, it wasshown that physicians recognize the importance of ACP, yet experience clinical, as well as moral stumbling blocks to initiate the process. For example, physicians express uncertainty about prognosis, how to communicate this, and not wanting to deprive patients of hope or instill fear. Nonetheless dementia is often associated with old age, up to 9% of people with dementia develop symptoms before the age of 65, signaled by the term young-onset dementia (YOD). It is estimated that nearly four million people worldwide suffer from the condition, once again underscoring the need for adequate care. Dementia at a younger age potentially affects individuals ‘in the prime of their lives’. Not only are they possibly still active on the labor market, but they might also have young children and significant financial obligations. Due to the active phase of life in which people with YOD find themselves, it is suggested that they have other needsregarding palliative care and specifically ACP: they are hypothesized to want more autonomy and greater involvement in decision-making regarding care.
Despite the hypothesis above, the views of persons with YOD regarding ACP remain unexplored in scientific research. Moreover, the views of their caregivers are poorly
understood, despite the general recommendation to involve them as early as possible in the process of ACP. Persons with YOD and their caregivers are a longstanding and systematically under-researched population in (end-of-life) care. This study would like to change that.
Within this doctoral dissertation, we wish to gain insight from both caregivers of, as well as individuals with YOD themselves on how ACP can be tailored to their needs and preferences.
To this end, we will also explore physicians' views on ACP in both younger and older dementia.

Based on our exploratory, as well as sensitive research questions, a qualitative research design was chosen for this entire doctoral study. Four studies are based on individual semi structured interviews with family caregivers and persons with YOD, a fifth study is based on focus groups with physicians. These 5 studies were divided into two parts, and more specifically based on their respondents. Part 1 involves research with caregivers of persons
with YOD, both family caregivers and physicians. Part 2 includes persons with YOD themselves, along with their respective caregivers.
A total of 48 individual interviews were conducted, including 38 with family caregive A total of 48 individual interviews were conducted, including 38 with family caregivers and 10 with persons with YOD. For the focus groups, we included 21 physicians from several disciplines essential within dementia care (neurologists, psychiatrists, geriatricians and
general practitioners). All interviews and focus groups were transcribed verbatim forsubsequently using the method of ‘constant comparative analysis’, which allows for identifying differences and similarities, both within and between groups.

Our interviews with Flemish family caregivers (Chapter 1) of persons with YOD revealed that -together with the patient- they had mainly undertaken plans in areas other than medical care (e.g., finances). The limited extent of undertaken ACP was clarified through several reasons. These included that sometimes ACP is simply not perceived as helpful, that the person with YOD sometimes exhibits behaviors that hinder ACP (e.g., a denying attitude), and that a day-to-day lifestyle is sometimes explicitly preferred over worrying about the future. In addition, family caregivers explained their avoidance of bringing up ACP by their desire to spare themselves from possible guilt (e.g., from emotionally burdening the patient by talking about the future). Finally, the question arose as to the extent to which the person with YOD might interpret the conversation diffrently than intended by the family caregiver. Apart from these reasons, however, there was support for ACP as shown by the preferences expressed by the family caregivers for how to participate in the process. According to them, ACP was best initiated ‘timely’, by a third party (many preferred a physician) and should focus on the
remaining capabilities of the person with YOD. Finally, these interviews also revealed a need for information (about dementia, ACP and available care services) and a need for high-quality, tailored care for younger people with dementia and their families.
The interviews with Flemish caregivers were subsequently reanalyzed against interviews with American informal caregivers of persons with YOD. Overall, three differences and three similarities between the two respondent groups emerged from this comparative study (Chapter 2). The main similarities were that (1) both respondent groups had a limited notion of the concept of ACP, (2) the completion of written advance directives was accompanied by only limited discussion regarding their content, and (3) that both Belgian and American family caregivers expressed a preference for the timely initiation of ACP. The main differences were that (1) the end-of-life decisionsthat family caregivers discussed were those embedded in the legal framework of their respective countries; namely, where Belgian caregivers mentioned euthanasia, their American peers talked about refusal of treatment, or suicide, (2) that American family caregivers placed greater emphasis on financial matters, and (3) that when professional help was sought to complete advance directives, American caregivers turned to lawyers, whereas Belgian caregivers turned to physicians.
Based on five focus groups, we explored physicians' experiences with and views of ACP in dementia at both younger, and older ages (Chapter 3). This revealed that physicians
hypothesized that the social stigma attached to dementia partly determined how individuals responded to their diagnosis. According to them, this reaction was sometimes characterized by a patient’s catastrophic expectations for the future. In this view, physicians also clarified how patients sometimes raised the subject of euthanasia at the very beginning of their disease trajectory. Although physicians agreed with a perception of ACP as being a broad communication process, they paid particular attention to certain end-of-life decisions throughout focus groups, such as ‘do not resuscitate’ orders or euthanasia. Physicians expressed a sense of responsibility to provide individuals with adequate information, both in terms of dementia as a condition and regarding the legal framework for ACP. Notwithstanding physicians recognized the potential value of ACP, it was simultaneously apparent that certain challenges (such as a fear of depriving patients of hope) hindered initiation of the process.
Most physicians believed that the extent to which patients with dementia and their caregivers experience a need for ACP stems from who they are as individuals rather than from their age. However, they expressed that ACP communication in persons with YOD tends to encompass more life domains, due to patients’ stage of life. Finally, it became clear that there was high congruency among physicians of different disciplines.
Chapter 4 concerns an interview study in which we asked 10 persons living with YOD and 10 of their respective caregivers about their experiences with and their views on ACP. Again, we found that there was only low awareness among respondents regarding ACP, and especially as a process of communication. Although they had not or barely engaged in ACP, they mentioned certain benefits they felt would be associated with it. It was mainly suggested that family caregivers may experience less emotional burden when they know the patient's wishes. Initially, persons with YOD and their family caregivers equated ACP with making end of-life medical decisions. When they were informed about the current understanding of ACP as a communication process and discussed ACP as such, they broadened their thought framework to "what is important, now and in the future?". Within this frame of thinking, they paid ample attention to non-medical aspects of care and discussed medical, psychological and social health as intertwined.
The final chapter of this dissertation is a secondary analysis of the interviews from Chapter 4, focusing on statementsregarding euthanasia (Chapter 5). Although the researcher did not ask questions about euthanasia, the topic was spontaneously raised by the majority of respondents. Individuals with YOD and family caregivers who had previously discussed the topic (among themselves) reflected a similar context in which this communication had taken place. Specifically, euthanasia came up during certain ‘key moments’, usually with family caregivers and stemmed from patients' considerations regarding the impact of their disease (progression) both on themselves and their loved-ones. Moreover, the negative image surrounding dementia, as well as dementia care, appeared to influence individuals' expectations and thoughts regarding the future.

ACP was often still perceived by participants in our study as medical planning for the actual end of life. Such a view, however, does not correspond to the thought framework that patients and caregivers put forward once they were informed about ACP as a communication process, i.e. "what is important now and in the future?" and with ample attention to non medical domains. In order to meet the views of patients and family caregivers, ACP as a broader communication process (as already embraced in academia) should trickle down further into clinical practice. Patients' and caregivers' unawareness of the term ACP and what it entails appeared to be only one part of a more extensive information need. Similarly, according to respondents, insufficient information was provided regarding dementia, the associated course of the disease and possible care services. Adequate information about ACP, dementia and the care landscape seemed an indispensable prerequisite to enable individuals to plan for the future. Despite the finding that individuals in our study had little or no experience with ACP, there appeared to be support for it among all respondents. Thus, we concluded that currently the prerequisites for actually engaging in ACP appear to be insufficiently met in case of YOD.
A second theme was the important role of family in ACP in YOD. Specifically, it emerged that wanting to protect loved-ones was a consideration that people make within their intention to engage or not to engage in ACP. Family caregivers, as well as physicians, indicated that they sometimes avoid conversations regarding the future in order to spare the patient of burdensome emotions. On the other hand, patients, physicians, as well as family caregivers themselves indicated that ACP and knowing the patient’s preferences might lead to some peace of mind for family caregivers. Consequently, based on these findings, ACP could be considered an act of care by the person with YOD toward his or her loved-ones. Furthermore, it was pointed out, by all respondent groups, how a diagnosis of YOD impacted an entire family and a multitude of life domains. Care tailored to family, rather than exclusively to the person with YOD, therefore appeared appropriate.
Further, it was suggested that a view of ACP in which the process is prioritized over the product (e.g., an advance directive) might facilitate ACP. Such a view and implementation potentially address several stumbling blocks that currently exist to participating in ACP. For example, among other things, a step-by-step information provision regarding ACP and dementia would potentially facilitate patients and caregivers to think about the future, despite their choice to live ‘from day-to-day’. In addition, an ongoing and dynamic dialogue regarding ACP would potentially address the challenge of patients' changing wishes and experiences throughout their disease trajectory. Both care preferences for the present and for the future would preferably be a starting point within ACP in YOD. In doing so, it also appeared desirable to prepare patients and family caregivers to make ‘acute’ decisions, since uncertainty was presented as an inevitable feature of dementia. Notwithstanding the fact that persons with YOD and their relatives expressed a preference to focus on the present, and that physicians indicate that giving prognostic information is challenging (e.g. due to moral considerations), it appeared that mainly family caregivers experienced a need for honest and open communication regarding future expectations. ACP in YOD therefore requires a balancing act between maintaining/providing hope on the one hand and having/representing a realistic image of the future on the other.
Moreover, the societal, often stereotypical portrayal of dementia was found to potentially impact ACP. Our studies highlighted that the stigma surrounding (young-onset) dementia possibly impacted how patients viewed their future. The negative way in which dementia is often presented in the media was also seen by clinicians as fueling catastrophic reactions to the diagnosis. On the other hand, patients and family caregivers within our study also portrayed a more nuanced image of living with YOD when they indicated that, despite the condition, there was still room for enjoyment. As persons with YOD indicated in interviews that they often felt underestimated by others, ACP could possibly be considered as a way to counter stereotypical images about dementia: ACP could make individuals with YOD feel that
their capabilities are being addressed and utilized. It also appeared that the low quality of care for YOD, as by patients and their loved-ones, possibly reduced the incentive
for ACP.
Additionally, our studies showed that the legal framework for ACP partly shaped the framework in which individuals thought about end-of-life decisions. Whereas many Belgian
respondents spontaneously discussed euthanasia throughout interviews, none of the American participants did so. When a particular end-of-life decision was legalized within a
country, it naturally seemed to be incorporated in end-of-life considerations. Consequently, we suggested that differences in legislative frameworks between countries may influence communication (strategies) within ACP. Besides the recommended holistic view of ACP (namely including medical, social and psychological aspects), it seems simultaneously recommended that physicians pay attention to these differences and address specific concerns or questions that patients may express (such as euthanasia). The debate that is currently going on in Belgium, particularly regarding the legality of an advance euthanasia directive for persons who have lost cognitive capacity, also resonated within the interviews, with sometimes divergent opinions. At a minimum, our research shows that the perspectives of persons with YOD and their loved ones can help shape possible policy developments regarding the euthanasia law.
Finally, we addressed the specific aspects of ACP in YOD that were found across our studies.
These appeared to relate primarily to the content of ACP, rather than the extent to which individuals wish to participate in ACP: namely, ACP in YOD would cover a wide range of topics given the plurality of life domains potentially affected by the diagnosis. For example, the financial implications for a family (e.g., informal caregivers who need to reduce their own work to care for their loved-one) and the importance of financial planning were mentioned several times. Furthermore, the need for care provision to be directed to a family, and not merely to the patient, was also frequently mentioned. Lastly, the importance of social and physical activity for the patient with YOD was also highlighted.
In general, it is not possible to determine with certainty whether our findings stem from the younger age of persons with YOD and their caregivers or whether they are a consequence of dementia as a condition (regardless of age). While some results seem age-specific (e.g., regarding inadequate residential care), others seem rather dementia-specific (e.g., day-to day lifestyle and its impact on ACP).

For practice:
- ACP as a dynamic and relational process
- ACP as a conversation with a holistic focus
- ACP with attention to the societal and legal background against which it takes place
For policy:
- Provide a uniform message regarding ACP as a communication process
- Re-evaluating care for YOD and improving as needed
- Including people with (young-onset) dementia’s and their family caregivers’perspectives within policy developments
For research:
- Repeating and expanding studies of this dissertation within a different societal andlegal context
- Including different groups of people with YOD in research (e.g., those without informal caregivers)
- Studying the actual clinical practice of ACP to complement individuals' narratives about how this practice is experienced
Originele taal-2English
KwalificatieDoctor of Social Health Sciences
Toekennende instantie
  • Vrije Universiteit Brussel
  • Van den Block, Lieve, Promotor
  • De Vleminck, Aline, Co-Promotor
  • Engelborghs, Sebastiaan, Co-Promotor
Datum van toekenning10 mei 2023
StatusPublished - 2023


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