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‘The eyes of others’ are what really matters: The experience of living with dementia from an insider perspective

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Abstract

Introduction: This Dutch study is a qualitative interview study. It aims to contribute to our understanding of the day-to-day experiences by providing an idiographic description of what it means existentially to be in the world as a person affected by a form of dementia, taking into account the contextual nature of these embodied experiences. Methods: We used a combination of narrative accounts of people from dementia. We first collected 322 recorded messages of 16 diarists who joined the Dutch Dementia Diaries project. This data was supplemented with 37 interview accounts. Our data analysis was inspired by Van Manen's existential phenomenological approach. Results: The findings show that living with dementia-from a first-person perspective-can be understood as a severely unsettling experience: the people concerned enter a very uncertain, unpredictable and ambiguous period of life. They have to face all kinds of losses that considerably change and disrupt their relationships with 1) their own body, 2) with others and 3) with the surrounding world. This experience is explicated in the following themes: 1a) scrutinizing your disrupted body; 1b) trying to control your bodily loss-of-control; 2a) feeling scrutinized by the suspicious gaze of others; 2b) drifting away from significant others; 2c) having difficulties sharing the struggle; 2d) longing to be taken seriously; 2e) engaging in a world of peers; and 3a) sensing disorientation in an alien place; 3b) feeling closed in within a shrinking space; 3c) trying to control a dreaded future; 3d) trying to control a dreaded future by means of euthanasia. Discussion: Our study demonstrates how the people with dementia are affected by 'the eyes of others'. They longed for a safe and accepting environment, but quite often felt scrutinized by inquisitive and disapproving looks. The outcomes also reveal a connection between dominant social imaginaries and people's self-understanding of dementia. Much of the suffering stems from living under the shadow of negative imaginaries. Furthermore, our study supports the demand for a socio-relational approach by demonstrating that-from a first-person perspective-dementia can be seen a disorder that is related in particular to questions about selfhood, social relations and social roles. For the people involved, instead of what dementia is, the focus is on what Alzheimer's disease means and does and how it affects daily life.
RESEARCH ARTICLE
‘The eyes of others’ are what really matters: The
experience of living with dementia from an
insider perspective
Els van WijngaardenID
1,2
*, Manna AlmaID
3
, Anne-Mei The
2,4
1Research Group Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands, 2Research
organisation Tao of Care, Amsterdam, The Netherlands, 3Department of Health Sciences, Applied Health
Research, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands,
4Faculty of Social and Behavioural Sciences, University of Amsterdam, Amsterdam, The Netherlands
These authors contributed equally to this work.
*e.vanwijngaarden@uvh.nl
Abstract
Introduction
This Dutch study is a qualitative interview study. It aims to contribute to our understanding of
the day-to-day experiences by providing an idiographic description of what it means existen-
tially to be in the world as a person affected by a form of dementia, taking into account the
contextual nature of these embodied experiences.
Methods
We used a combination of narrative accounts of people from dementia. We first collected
322 recorded messages of 16 diarists who joined the Dutch Dementia Diaries project. This
data was supplemented with 37 interview accounts. Our data analysis was inspired by Van
Manen’s existential phenomenological approach.
Results
The findings show that living with dementia–from a first-person perspective–can be under-
stood as a severely unsettling experience: the people concerned enter a very uncertain,
unpredictable and ambiguous period of life. They have to face all kinds of losses that consid-
erably change and disrupt their relationships with 1) their own body, 2) with others and 3)
with the surrounding world. This experience is explicated in the following themes: 1a) scruti-
nizing your disrupted body; 1b) trying to control your bodily loss-of-control; 2a) feeling scruti-
nized by the suspicious gaze of others; 2b) drifting away from significant others; 2c) having
difficulties sharing the struggle; 2d) longing to be taken seriously; 2e) engaging in a world of
peers; and 3a) sensing disorientation in an alien place; 3b) feeling closed in within a shrink-
ing space; 3c) trying to control a dreaded future; 3d) trying to control a dreaded future by
means of euthanasia.
PLOS ONE | https://doi.org/10.1371/journal.pone.0214724 April 3, 2019 1 / 23
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OPEN ACCESS
Citation: van Wijngaarden E, Alma M, The A-M
(2019) ‘The eyes of others’ are what really matters:
The experience of living with dementia from an
insider perspective. PLoS ONE 14(4): e0214724.
https://doi.org/10.1371/journal.pone.0214724
Editor: Vincenzo De Luca, University of Toronto,
CANADA
Received: September 26, 2018
Accepted: March 19, 2019
Published: April 3, 2019
Copyright: ©2019 van Wijngaarden et al. This is an
open access article distributed under the terms of
the Creative Commons Attribution License, which
permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Data Availability Statement: Data cannot be
shared due to potentially identifying information
and lack of participant consent for sharing
anonymized data. The first project obtained
approval of the AISSR (Amsterdam Institute for
Social Science Research) Ethical Advisory Board
and the Faculty Ethics Committee have granted
approval for (2014, number: 2014-AUSSR-3805).
For the second, approval was obtained from the
University Medical Center Groningen (2010,
number: M10.094306). Both approvals were based
on the appointments we made with the study
participants (so not on pre-imposed restrictions).
Discussion
Our study demonstrates how the people with dementia are affected by ‘the eyes of others’.
They longed for a safe and accepting environment, but quite often felt scrutinized by inquisi-
tive and disapproving looks. The outcomes also reveal a connection between dominant
social imaginaries and people’s self-understanding of dementia. Much of the suffering
stems from living under the shadow of negative imaginaries. Furthermore, our study sup-
ports the demand for a socio-relational approach by demonstrating that–from a first-person
perspective–dementia can be seen a disorder that is related in particular to questions about
selfhood, social relations and social roles. For the people involved, instead of what dementia
is, the focus is on what Alzheimer’s disease means and does and how it affects daily life.
Introduction
People affected by a form of dementia undergo an accumulation of progressive and chronic
losses on a personal and social level [1]. Memory loss often threatens a person’s sense of secu-
rity, autonomy and being a meaningful member of society [1]. Theories have been developed
to explain how individuals adapt to dementia and cope with the accompanying losses [24].
One model that has been applied to a wide range of chronic illnesses is the ‘self-regulatory
model (SRM) of illness behaviour’. SRM tries to capture the reciprocal relations between illness
and behaviour [46] and suggests that individual differences in coping are related to different
illness representations [7]. For example, Matchwick and colleagues (2013) showed how so-
called ‘cause and control illness representations’ impact the way people respond to their diag-
nosis and try to make sense of their illness [8].
These psychological approaches deepen our knowledge about how we can facilitate applica-
tion of psychosocial therapies [3] by focussing on cognitive or behavioural strategies, self-regu-
lation, self-management and individual coping strategies. This focus, however, also has its
limitations and may carry the risk of reducing the complexity of how people deal with the dis-
ease and the accompanying losses in at least three ways:
First, we should be aware that it is not enough to understand human nature, consciousness
and meaning in terms of taxonomies, causal and probabilistic explanations. Understanding
the nature and the meaning of everyday existence–and more specifically when the apparent
normalcy of this everyday existence is gravely threatened by a chronic disease such as demen-
tia–goes far beyond cause-and-effect rationality [9].
Second, it tends to psychologize and privatize, as if ‘dealing with the threat of dementia’ and
‘sense-making’ occur within an individual, and more specifically within someone’s mind [10].
Such inwardness is a simplification, as it likely overlooks that ‘dealing with’ is about people
who–as bodily beings–find themselves together with others in time and space within a com-
plex reality of social-cultural structures [10]. Experiences are always embodied and nested
within a larger context [11,12].
Third, the language of sense-making strategies, self-regulation, self-management and cop-
ing presupposes a rational, active and choosing human being. This ignores the fact that not
only do people act and are capable of deciding, they also always passively undergo diseases,
actions of other people, context and atmosphere [10]. Indeed, for a comprehensive under-
standing of the lifeworld of people with dementia and the way they relate to their illness, it is
crucial to acknowledge this tension between activity and passivity. Dealing with the threat of
‘The eyes of others’ are what really matters: Living with dementia from an insider-perspective
PLOS ONE | https://doi.org/10.1371/journal.pone.0214724 April 3, 2019 2 / 23
Parts of the interviews are publicly available at
https://www.pratenovergezondheid.nl/dementie
and https://www.dementieweb.nl/verhalen/
dementiedagboeken/. Data from the Institutional
Database of Tao of Care is available from Jaap van
Scherpenzeel, who is in charge of the data-
management and ICT, and may be contacted at:
jaap.vanscherpenzeel@tao-of-care.nl. Data from
the PratenOverGezondheid study is available from
Dr. G.J. Dijkstra, Head of the Department of Health
Sciences of the University Medical Center
Groningen, and may be contacted at: g.j.
dijkstra@umcg.nl.
Funding: The first and third author received no
specific funding for this work. The second author
works for the project PratenOverGezondheid. This
PratenOverGezondheid study was supported by a
grant (314010301) from the Netherlands
Organization for Health Research and Development
(ZonMw), research program “National Care for the
Elderly”, appointed by the Ministry of Health (VWS)
and the Netherlands Organization for Scientific
Research (NWO).
Competing interests: The authors have declared
that no competing interests exist.
dementia means “going through motions of possible uncertainty, anxiety and unexplained
deterioration of his or her conditions” [10]. These more passive experiences are on a different
level than actively making choices and coping with things, and therefore require a different
scope and language.
Although most health professionals and health researchers are profoundly aware that good
care not only requires interventions, therapies and/or treatment, but also implies that profes-
sionals foster attunement to how an individual experiences things [13], the number of robust
studies that contribute to a deeper understanding of the nature and meaning of living with
dementia is still limited. Experiences of living with dementia from the perspective of people
with dementia have been explored in a number of valuable studies [1,7,1419], but, again, the
results focus mainly on psychological impact and coping strategies.
This qualitative study aims to contribute to our understanding of the day-to-day experi-
ences by providing an idiographic description of what it means existentially to be in the world
as a person affected by a form of dementia, trying to understand how the experiences are medi-
ated and conditioned by the context (such as other persons, situations, events, certain places
and the broader society).[11] Such an approach can assist health professionals by increasing
attentive thoughtfulness–described as a minding, heeding and caring attunement–[20] which
facilitates practical tactfulness, as well as a questioning mood with respect to the people
concerned.
Methods
Context
This study is conducted in a collaboration between researchers who work in different contexts
and are involved in different projects. (See S1 File for an elaboration on the context of these
projects.).
Ethical approval
For the first project, we obtained approval from the AISSR (Amsterdam Institute for Social
Science Research) Ethical Advisory Board and the Faculty Ethics Committee (2014, number:
2014-AUSSR-3805). For the second, approval was obtained from the University Medical Cen-
ter Groningen (2010, number: M10.094306).
Data collection
In this study, we define dementia as a chronic decline in cognitive function that causes
impairment relative to a person’s previous level of social and occupational functioning [21]. It
is a medical condition that can result from diverse causes, the most common of which is Alz-
heimer’s disease. Other dementias include Lewy body dementia, frontotemporal disorders,
and vascular dementia, MCI or Parkinson’s disease dementia [21]. Given our aim and
phenomenologically inspired methodology, this study does not focus on differences or similar-
ities arising from these distinct forms of dementia. Instead we attempt to grasp the overarching
existential meaning of living with a form of dementia in order to facilitate a deeper empathic
understanding (rather than explanation) of this experience.
We analyzed a combination of narrative accounts from people with a form of dementia,
which were generated in two related projects: A large part of the data used in this present
study came from the Dementia Diaries project. In the first year (from November 2016 to
November 2017) sixteen people with dementia joined this project. Participants were recruited
through presentations in Alzheimer Cafes by the project advisory panel, an advertisement on a
‘The eyes of others’ are what really matters: Living with dementia from an insider-perspective
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digital platform and through the snowball method. They were included if they had a type of
dementia, if they had sufficient verbal ability to participate in the diary project and if they were
able to give informed consent. Before joining, they received information about the aim of the
project. To ensure a careful informed consent procedure, both the people with dementia and a
significant other gave full written permission to use their stories for our website (https://www.
dementieweb.nl/verhalen/dementiedagboeken/), as well as for research purposes. On a regular
basis (some more frequent than others, see Table 1), the participating diarists reflect on what it
means for them to live with dementia. They use mobile handsets (customized for maximum
simplicity) to record audio diary entries. They also have a contact person to assist them if nec-
essary. For this study, we used all 322 recorded messages from the first year, which were tran-
scribed verbatim (median 203 words per message). See Table 1 for an overview of diarists’
characteristics.
In order to gain a deeper understanding of the complex experiences at stake, we chose to
combine and complement our diary data with interview data. [22] These interviews were con-
ducted in the context of a similar project PratenOverGezondheid Nederland [the Dutch coun-
terpart of the Database of Individual Patient Experiences of health and illness (DIPEx)] [23
25]. Thirty-seven Dutch informants nationwide were interviewed about their experience of
Table 1. Overview of participating diarists’ characteristics.
Gender Number of diarists (n = 16)
Male 8
Female 8
Year of birth
1930–1939 4
1940–1949 8
1950–1959 3
1960–1969 -
1970–1979 1
Partner status
Living with a partner 7
Living alone 9
Living situation
At home 11
Assisted living 4
Unknown 1
Number of years since diagnosis (in 2018)
2 years 4
3 years 3
5 years or more 6
Unknown 3
Type of dementia
Alzheimer’s disease 9
Vascular dementia 4
Frontotemporal dementia 1
Parkinson’s disease dementia 1
Unknown (still in the diagnosis trajectory; the diagnosis was not official yet) 1
Number of recorded diary messages
up to 39 13
more that 40 3
https://doi.org/10.1371/journal.pone.0214724.t001
‘The eyes of others’ are what really matters: Living with dementia from an insider-perspective
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living with dementia. The interviews were collected using maximum variation sampling [26].
Participants were recruited through specialized case managers, support groups, GPs, day cen-
tres, the project advisory panel, advertisements, and through the snowball method. They were
included if they had a type of dementia or were in a diagnostic trajectory, if a professional or
informal caregiver believed that the person with dementia had sufficient verbal ability to par-
ticipate in an interview and if the person with dementia was able to give informed consent. For
an overview of interviewees’ characteristics, see Table 2.
Prior to the interview, informants received an information letter outlining aim, research
procedure, privacy and contact details. Before the interview, the informant gave full written
informed consent to use the interview for research purposes. The interviewer conducted face-
to-face in-depth interviews in the informants’ home environments, which were audio- and
videotaped with their permission. The interviews were in-depth narrative interviews,
Table 2. Overview of participating interviewees’ characteristics.
Gender Number of interviewees (n = 37)
Male 17
Female 20
Partner status
Partner 31
No partner 6
Year of birth
1920–1929 6
1930–1939 13
1940–1949 11
1950–1959 3
1960–1969 0
1970–1979 1
Unknown 3
Age when receiving the diagnosis
50–59 5
60–69 11
70–79 8
80+ 9
Unknown 4
Number of years since diagnosis
1 year 14
2 years 7
3 years 5
4 years 3
5 years or more 4
Unknown 4
Type of dementia
Alzheimer’s disease 22
Vascular dementia 3
Mixed dementia (Alzheimer and vascular dementia) 2
Frontotemporal dementia 1
Dementia with Lewy bodies 1
Mild cognitive impairment (MCI) 1
Unknown (still in the diagnosis trajectory; the diagnosis was not official yet) 7
https://doi.org/10.1371/journal.pone.0214724.t002
‘The eyes of others’ are what really matters: Living with dementia from an insider-perspective
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conducted with a view to uncovering experiences of dementia across a range of topics. The
first part of the interview had a narrative structure in which the informants were encouraged
to tell their story. Narrative interviewing was selected to enable informants to articulate their
experiences, perspectives and concerns in their own way [27]. In the second part, a semi-struc-
tured interview approach was adopted to ask about topics of interest that had not been raised
yet and to explore key topics in-depth. (See S2 File for the topic list). Data collection was com-
pleted when the interviews did not reveal new ideas, experiences, or insights and the data were
saturated. The interviews lasted from 29 minutes to 138 minutes (median 72 minutes). Inter-
views were transcribed verbatim.
Data analysis
Our iterative data analysis was inspired by Van Manen’s existential phenomenological
approach.[9,28] This approach allows for an investigation of experience as it is lived rather
than conceptualized, and consists of a dynamic interplay between the following activities:
eliciting concrete and contextualized lifeworld descriptions;
reflecting on the essential themes which characterize the phenomenon by moving back and
forth between the sense of the whole and its details;
describing the general meaning structure of the phenomenon through the art of writing and
rewriting [9,20,28].
The first step of the analysis was reading the complete transcripts to understand the overall
meaning. The first author used Atlas.ti for MAC, version 1.5.3 to facilitate organization, coding
of the data, and easy comparison of meaningful fragments and clusters. However, higher levels
of interpretation occurred through our collaborative analysis and reflection by the authors [9,
28]. The significance of structuring our phenomenological description around the ‘lifeworld
existentials’ of relationality (lived relationship between the self and others), embodiment (lived
body), spatiality (lived space), and temporality (lived time) [9] turned out to be helpful during
our analysis. In phenomenological research, these four lifeworld existentials are seen universal
themes of life, arguably pervading the lifeworld of all human beings, regardless of their situat-
edness [9,2830]. They proved to be helpful guides in exploring the meaning structure of ‘liv-
ing with dementia’ in terms of interpersonal relations, body, space and time. They are used in
an inductive way: together they form a lens that enables to illuminate the textured, embodied,
experienced world, each emphasizing particular nuances of the experience in an explorative
way. (See S3 File for an elaboration on these lifeworld existentials).
A full description of a meaning structure should always be accompanied by an analysis of
particularities, nuances, and unique contextual variations in the meaning of the phenomenon.
It is this full structure of both generality and particularity that enhances our understanding of
the issue.
Maximizing the rigour of the study
We applied the following framework commonly used for maximizing the rigour of phenome-
nological studies: rigour, relevance, resonance and reflectivity [31]. To enhance rigour, we
aimed for variation and information richness of cases [22,32], resulting in a combination of
in-depth interviews and longitudinal diaries. Outcomes were validated in dialogues among the
research team. Besides, for a member check, the first author visited three of our most actively
participating diarists to discuss the final themes, not only for validation but also for ethical rea-
sons [31].
‘The eyes of others’ are what really matters: Living with dementia from an insider-perspective
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Regarding the value of the study in terms of its relevance, we tried to provide a rich and
accurate but also contextualized description of the phenomenon. In coherence with the under-
lying phenomenological paradigm, the results are not perceived as universal, factual, and/or
quantitatively generalizable, but rather as existential, meaning-based understandings that
should provide insight into life as it is essentially lived. [28,33]. In order to be resonant and
enable the reader to engage with the people in question, the rich and vivid descriptions should
help the reader to actually feel what it might be like to live with dementia. It is an attempt to
find the ‘I in the Thou’ [29]. In addition to being true to the phenomenological approach, this
also aligns with our deep conviction that people with dementia are people like ourselves, shar-
ing full humanity; thus, it is an attempt to go beyond stigmatization and medicalization. In
line with the phenomenological approach, the main purpose of our member check (with the
three most active diarists) was not about agreement, but rather about whether the outcomes of
the study resonated with participants’ experiences [30,33]. In terms of reflectivity we have
aimed for an attitude of openness, susceptibility and sensitivity to the participants and to the
phenomenon during the whole research process.
Results
In this section, we describe the experiences of living with a form of dementia from a first-per-
son perspective. The relationship with one’s own body, with others and with the surrounding
world is severely disrupted because of the dementia. People with dementia have to face all
kinds of losses and difficulties, but we found that the attitude of others is what has most impact
on daily life. Below, we first provide a thematic overview (Box 1).
Box 1. Overview of main themes
‘The eyes of others’ are what really matters
Disrupted body
Scrutinizing your disrupted body
Trying to control your bodily loss-of-control
Disrupted relationships
Feeling scrutinized by the suspicious gaze of others
Drifting away from significant others
Having difficulties sharing the struggle
Longing to be taken seriously
Engaging in a world of peers
Disrupted sense of space and time
Sensing disorientation in an alien place
Feeling closed in within a shrinking space
Trying to control a dreaded future
Trying to control a dreaded future by means of euthanasia
‘The eyes of others’ are what really matters: Living with dementia from an insider-perspective
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Disrupted body
Scrutinizing your disrupted body. From the moment participants started noticing that
something was seriously wrong, they became much more aware of their body, so clearly and
movingly expressed by one of the diarists:
This morning, I stood in front of the mirror and–while looking at my face, closely observing
it–I thought: nothing has really changed yet. You know, I don’t have that glazed, staring
look you sometimes see in people with dementia. In contrast though, I pondered, within
my head, the dementia has definitely changed everything! It’s like a kind of grey veil has
fallen over your brain and I really want to clean it up. I’ll do my best, but clearing up doesn’t
seem to work. Talking about it, however, does, so I’m trying to be happy about that. (V40)
Participants started scrutinizing their familiar body for its unusual behaviour, clumsy ges-
tures, inappropriate language and uncontrolled mind. It increasingly felt like an alien body on
which they can no longer rely, controlled by unfamiliar, foreign forces. The body they had
always relied on now showed signs of betraying them. Against their will, the dementia took
charge, and their body is becoming a constant source of loss and disruption. Paradoxically,
this strange body is also undeniably their own. There is no other option than to somehow
relate to it.
Participants often experienced the diagnostic tests in the hospital as exams which they are
doomed to fail. Most realized that the tests are quite easy and yet too difficult for them, which
confronted them even more with their deteriorating body, strengthening feelings of failure
and loss:
At the start of the test, I thought: Well, this really is a piece of cake. The questions and sums
were so silly, so obvious! But at a certain point, (starts crying) I noticed that it was not clear
to me at all . . .(DEM18)
After receiving the diagnosis, many participants found themselves navigating between
shock and relief. Suddenly, their suspicions were confirmed. There is no way back, their bodily
state will never improve, it will only deteriorate. What awaits them is an unclear but gravely
threatening future. About his worrying, one man said:
After receiving the diagnosis, I was constantly thinking of it. In fact, I often lay awake all
night, which was really an attack on my body, but even more on my mind. You know, if I
cannot sleep, lots of things go through my mind. It’s one large teeming snake pit then, this
head of mine, a teeming snake pit. At that moment nothing is good, everything is negative
. . .(V158)
While the ‘verdict’ is often experienced as terrible, for many it is also a relief. Many partici-
pants had become preoccupied with a bodily sense that something was seriously wrong. Now
that their problem was defined medically, their strange behaviour could be ‘explained’. When
confronted with disturbing symptoms, at least they could now tell themselves: ’This is what it
is. This is what I have to live with.’ In a way, the diagnosis allowed them to fit their disrupted
bodies into their life. Besides, the diagnosis gave them access to professional health care and
support systems. The outcomes of the diagnostic process, however, did not always correspond
with people’s daily experiences. Sometimes, the body seemed to ’say’ something different than
the scans. In such cases, the diagnosis could be experienced as quite confusing:
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Last week I visited the geriatrician (. . .). It turned out that my whole brain is affected by
the. . ., well. . ., in fact, I don’t exactly know how to put it. Actually, they were completely
white . . . So, it seems that I have quite a widespread form. . . I, however, tend to think that–
when I evaluate my daily functioning–it’s actually not too bad yet. I’m still able to manage a
lot all by myself. So in the end, I have no idea how to interpret the diagnosis. . . But I cannot
change it, that’s for sure.(V195)
While some expressed their scepticism about the insufficient medical knowledge on
dementia, others experienced the medical language mainly as alienating, a language they could
not understand, as if it is not about them or their bodies.
It is a process, of course, with all kinds of concepts (. . .) going right over my head. Many
Latin concepts, you know, when it comes to the pills and the treatment. And there is little
support to build up a new story. I’d prefer it if they said: it states ’blah blah, but this is what
it means’. But that is not what happens . . .(DEM02)
Trying to control your bodily loss-of-control. For most, dealing with ongoing loss-expe-
riences and deterioration was a very hard process. Many participants were never again at ease
with their body. It generated uncertainty not only about what they could do but also who they
are. Their whole bodily existence was profoundly put into question by the suspected signs of
dementia. Some participants no longer dared to trust their perception and became quite
uncertain about their own bodily performance. Confronted with their physical limitations,
they tried to control the symptoms by feigning normalcy, and hiding the strangeness.
I used to engage in conversations with other people but now I sometimes notice that I don’t
give the right answers, you know, stray from the theme. That makes me terribly insecure. I
can’t trust myself. (. . .) Right now, I’m scrutinizing my choice of words, but still I say crazy
things. It makes me think: ‘You stupid fool!’ (. . .) Most people are very decent, they’ll never
joke about it (. . .) but I have this annoying feeling that I’m not equal anymore. I’m
different. . .(DEM37)
Most participants wanted to stay involved in life as much as possible, but they felt thwarted
in their ambition by the limitations of body and mind:
I went to Dave [son] to solve a software problem in a program I developed myself for him
in the past. Before I left I had a pain in my stomach. I really dreaded going there. Could I
postpone it. . .? That would perhaps be the easiest way, but it seemed unsatisfactory. Luck-
ily, Dave was not as chaotic as he can be, and he did not fly into a rage like the last time.
That made it more pleasant. But unfortunately, after much trying, I didn’t succeed in solv-
ing the problems for him. I was very disappointed. Again, it was confirmation that I don’t
function well any longer.(V118)
All kinds of bodily symptoms and complaints were related to dementia, such as stumbling,
difficulty riding a bicycle, sleep problems, but also intestinal complaints, diabetes and heart
failure. Participants told us that they do not want to ‘attribute everything to dementia’. Simul-
taneously, though, in their search for explanation and causality, they tried to regain control of
a highly uneasy process and get a grip on the bodily losses.
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Disrupted relations
Feeling scrutinized by the suspicious gaze of others. Participants scrutinized themselves,
but they also feel scrutinized by the gaze of others. The diagnostic process was about locating
dementia in their bodies, as well as within their social relations. With the diagnosis, all kinds of
conceptualizations and stigmatizations of dementia emerged and reshaped other people’s
ideas and interpretations about the new situation. For many, this created deep uncertainty
about the interpersonal contact with others and their social position: Can I still be myself?
How do others view me? Do others immediately recognize that something is ‘wrong’? Am I
still considered worthy and capable of doing things? In many cases, participants immediately
sensed a change in the relationship with others:
If you are diagnosed with dementia, to others it sounds like, all of a sudden, you are
assumed to be incapable of anything. But actually, that’s ridiculous (..) You know, I have
lots of experience, and that’s not all gone at once.(DEM15)
Well, you’re going one step down in society. You’re no longer considered a full member of
society. And in discussions you’re also a ‘quantite
´negligable’. Someone who is now avoided
by everyone.(DEM37)
Most participants expressed a longing for a shared journey, but often felt quite alone; being
thrown back upon their own resources. Sometimes they even exacerbated the loneliness by
masking or hiding manifestations of dementia from others, in an attempt to avoid the risk of
judgment and stigmatization. In many cases, participants explicitly mentioned that ‘the sense
of being looked at’ was what troubled them most.
Longing to be taken seriously. Several participants were upset by the interventions of
others. Well-intentioned but often unsolicited, people tended to take over certain tasks: decid-
ing that they were no longer able to work, drive a car, or participate in a hobby club. In some
cases, there was even reluctance on the part of spouses when their loved one wanted to join the
dementia diary project, because the spouses feared failure. A side effect of this attitude was that
participants frequently felt patronized. ‘Their restrictions are imposed on me’ and ‘more and
more, my freedom is taken away’. It is experienced as a dehumanizing experience. Instead of
having a sense of ‘us together’, they now felt like it was ‘them against me’. One lady told us
about her family purchasing an induction plate for her ‘behind her back’:
I really don’t think it was necessary yet; it was still safe for me to cook. But they didn’t trust
me anymore. The bad thing is: it’s decided for me, but I have to pay for the new plate! (. . .)
I really have trouble with the fact that things are forced on me.(V1)
Another participant said that, after the diagnosis, he really wanted to continue working on
a therapeutic basis, but unfortunately, that did not work out. His colleagues could not handle
it. He was told that ‘he drove them mad’. It strengthened his feelings that ‘everything is slipping
away’. Another man was frustrated that, due to dementia, he was not even considered eligible
for volunteer work, while he felt that he still could be of use to the organization. For many, it
felt as if the diagnosis immediately degraded them to ‘second-class citizens’; all serious respon-
sibilities were taken away by others.
Most participants were aware of the increasing limitations and losses they had to face. Yet
they wanted to be directly involved in how to deal with those limitations. For example, one
man dealt with the painful loss of his driving licence by transferring his insurance to his wife.
For him, doing this transfer himself was a way to ‘stay in charge’. Other participants spoke
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about choice making regarding their next holiday. They themselves decided that a holiday
abroad might be too distracting, and therefore opted for a domestic vacation. Others chose not
to organize huge birthday parties or wedding anniversaries anymore, preferring a celebration
in a small, familiar group. Although these decisions in themselves were often painful, taking
preventative measures to reduce the effects of dementia, redrawing their own boundaries and
setting out new preconditions gave participants a sense of self-worth and mastery, even in the
context of loss.
While a sense of not-being-taken-seriously-anymore prevailed in the accounts, participants
also told stories about feeling respected. One man, for example, expressed his deep apprecia-
tion about still being ‘tolerated’ as a ‘respected member’ of a board, being allowed to chair the
board meeting. Another man was still involved in the checkers club, and even joined the com-
petitions. While they kept in mind that at some point they would have to stop, they felt they
were not ready to do so.
Within the context of the shrinking social environment, competences and possibilities, sev-
eral participants succeeded in finding other/new ways to express themselves. One diarist
posted two beautiful sound messages on which she played the piano (instead of talking about
her daily life) as if saying: ‘This is me as well, this is how I express myself best.’ Others joined
artistic initiatives such as ‘DemenTalent’ (http://dementalent.nl) or a dance performance
‘Brain Shadows’. In terms of the valuation of activities that were specifically organized for peo-
ple with dementia, several participants stressed that they valued the challenge to learn new
things (instead of ‘being kept busy’). Some started writing short articles for the support group
magazine, others developed new skills, such as painting or sculpting or writing poems. Some
diarists explicitly noted that joining our research project gave them a sense of meaning. One
participant suggested that we should rename our dementia diaries and call them ‘Brain Power
Diaries’, which reflects the importance he attached to his expertise.
Having difficulties sharing the struggle. Many participants had difficulty sharing their
sadness or frustration about their struggle with the disease with their network. Friends and
acquaintances seemed to keep more and more distance from the person with dementia.
As far as relationships are concerned, I just notified everyone what the diagnosis was, but
nobody responded, except someone who exclaimed: I’m so sorry for you! But, eh, no one
has asked me what it really means for us, for our relationship. So yes, I really feel a bit disap-
pointed, because [through my exposure] I felt very vulnerable, but I did not get a single
reaction.(V140)
People had trouble sympathizing. They tend to look away, try to cover it up with well-inten-
tioned but relativizing comments or platitudinous remarks like: “Luckily it’s not too bad yet.”
One participant, who reflected on her feelings of not being appreciated, put it this way:
Well, sometimes it’s not fun at all to have vascular dementia. Oh man, there are moments I
climb the walls. I just had a call from a friend, and you know, because of this illness, I some-
times have a short fuse. People just don’t understand. The same goes for this friend, she’s
covering it up, cloaking it in silence in a way that makes me want to vomit. Then I think,
damn, just let me finish my story without trying to avoid the issue (. . .) She just leaves me
with my frustrations.(V48)
Although friend stayed away in quite a few cases, there were also many people who felt gen-
erously supported by their network. In some cases, the network was even enlarged and
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strengthened. However, even good support from the network did not always take away feelings
of helplessness and hopelessness:
We are happy with the support we have from all sides now. Really. . ., really. . . But I still feel
hopeless. Presumably, you can hear it in the tone of my voice, both helpless and hopeless.
(V242)
The support was often practical. Sharing the emotional or existential struggle seemed much
harder, both for the person with dementia and for the significant other.
Drifting away from significant others. The support of close family members or friends
had become indispensable, as they put things in perspective and provide much needed guid-
ance in an uncertain world. For most participants, this support was both a source of gratitude
and deep concern. Many respondents were haunted by the uneasy feeling of being a burden to
their network. Some felt so deeply dependent on their partner that they did not dare to go any-
where without them, being very worried about the possibility of losing their partner. “Then I’ll
be completely lost, nowhere, you know (. . .) those are things that are going through your mind
all the time, and that’s a highly unpleasant feeling, I can tell you."
Slowly but surely participants felt they drifted away from their significant others. They
talked about thinking on different levels, living in different worlds, assessing things differently.
They were unable to keep up with things adequately. Many came to the sad conclusion that
they do not feel like equals anymore. For some, the reality of a compromised relationship due
to the dementia created a deep feeling of uncertainty and inequality. In their experience, the
disease caused tension with respect to intimacy.
The daily communication with my partner is becoming a problem. To put it like this: if you
draw two lines, her line continues on the same level, but mine deflects in a downward
curve. Clearly, our communication no longer runs in two parallel lines. As a result, I tend
to withdraw. I don’t really want to isolate myself, but actually, that’s what I do. I also feel
that, at times, I don’t have much to contribute anymore. More than before, I hesitate to ask
or discuss things with her. That’s a rotten side-effect of dementia.(V177)
Several people explicitly talked about a negative polarization of roles in relationships. From
the diagnosis onwards, previous roles such as spouse, father, employee or friend were in many
cases unwittingly replaced by being a ‘care-receiver’ first and foremost. Instead of being
together and taking care of each other, the persons diagnosed with dementia experienced
themselves as ‘solely the one being cared for’. Gradually, the relationship became more imbal-
anced and one-sided, losing a sense of mutual complementarity, responsibility and reciprocity.
While many participants were very aware of the fact that they were unable to cope with life
without help, they also had a strong wish to continue to contribute in other ways, but often
they felt without value in many aspects of life.
I’ve been at the centre of many kinds of things that I’ve been involved in for a long time, but
now, it’s exactly the other way around. Right now, I’m just set aside so to speak.(DEM14)
Clearly, tension in relationships was present in most accounts. There were, however, also
various stories about improved relationships, especially with close family members. Partici-
pants talked about deepening the relationship from a cognitive to a more emotional level,
enjoying meaningful moments more intensely, appreciating little things more fully, and feeling
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safe and able to surrender yourself to your loved ones. One man talked about his relationship
with his partner’s grandchildren towards whom he had always felt somewhat inhibited:
The relationship with my granddaughter suddenly became so much better. I opened up a
bit more to her and immediately I got very nice feedback: ‘hey grandpa Danny’. And eh, for
me as a childless figure, that’s a very pleasant experience. Apparently, I didn’t lose the ability
to love my grandchildren, well my partner’s grandchildren. And that’s just really nice.
(V164)
Engaging in a world of peers. For many respondents, contact with people in the same
position was experienced as a relief. Not because they talked about living with the disease and
exchanged advice, but mostly because they did not need to talk about it. There was what they
called ‘unspoken understanding’ or ‘a kindred spirit’. Participants spoke about other people
with dementia in terms of ‘dementia colleagues’, ‘dementia comrades’, ‘dementia supporters’
or ‘fellow members of the dementia club’. They shared the sense that they were ‘kind of in the
same boat’. One man–who joined a support group called ‘The Boosters’–said:
It’s just a group of people who have also been told that they have Alzheimer’s. One is in a
more advanced stage than the other, but I feel comfortable. We value and fully respect each
other. We laugh, talk, drink coffee, and we do nice things.(V2)
Most participants felt at ease amongst others of their kind, who were perceived as peers.
‘It’s just the relaxed atmosphere, you know, I can just be myself.’ Participants especially valued
that–among peers–they did not have to ‘hide’ the symptoms of the disease. In ‘normal life’,
some felt that people trivialized the impact of the problems they faced. For them, it was a relief
to be acknowledged and taken seriously by their peers:
I’m so glad I got in touch with them. For me, those are the days I feel good. When we are
together, we can just be ourselves and I don’t have to defend myself each time against peo-
ple who downplay it and say: ’Oh, don’t you pay it any mind, I forget so much myself’.
(V134)
Whereas a sense of reciprocity was often decreasing in many aspects of life, the support
group for most participants strengthened the feeling of being involved and being able to pro-
vide help or advantages to each other. For example, by encouraging each other to stay active:
One of our fellows, the youngest one, is now recovering from a recent stroke. Since this
occurrence, we always go and pick him up at his clinic on Thursdays and take him with us
in a wheelchair. And then we go for a good walk, and we visit a museum. We have done
that two or three times already, and he looks forward to it.(V22)
While participants were at ease and felt ‘normal’ when they were with so-called ‘like-
minded people’, it also made them sad. One man talked about his decision to go on a multi-
day trip for people with dementia. On the one hand, he really enjoyed the time together and
perceived it as a relief that he ‘didn’t have to fight all the time (. . .) Things just ran much
smoother’. But it also led him to a ‘deeply sorrowful conclusion’ about the relationship with
his beloved wife. In his words: ‘I’ve come to the realization that the differences between the
two of us have become unbridgeable.’
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Disrupted sense of space and time
Losing grip on the basic familiarities of life. Most participants recounted the experience
of becoming strangers in their own world; they often feel disorientated or lost. Gradually, the
world becomes an increasingly alien place. The feeling of basic familiarity diminishes. Mean-
ingful connections between the self and the outside space are interrupted, creating feelings of
not-being-at-home and insecurity. Due to the dementia, life gradually loses its coherence and
continuity. Their pattern of daily life is disarranged. Often the natural rhythm of time, of day
and night is disrupted. In many cases, their untimely, forgetful or repetitive behaviour made
participants feel quite uncomfortable.
Sometimes I’m in one of my moods, and I am worried sick about the future, not being able
to organize things, occasionally taking the wrong bus or forgetting to get off, failing to
remember street names, searching for words . . . But most times, I manage to handle myself
. . . I try to stay active and keep doing as much as possible with the help of my iPhone and
iPad.(V5)
Feeling unable to change the dementia, they instead made adjustments in their lives and
houses to try to counter this sense of estrangement in terms of time and space. They added
objects and tools (such as clocks, calendars and schedules on the wall full of memos, or iPads)
to their lives in an effort to orientate themselves, maintain grip and “remember” the daily
routine.
In the beginning, I had lots of trouble determining what day it was, and eh, which date. But
they designed special clocks for us, so I bought one. In big letters, it shows me that it’s Fri-
day, December 2, and I can read it when I sit at my desk, working with the computer. So,
I’m on time, and up-to-date again.(V8)
My iPhone is becoming more and more a concatenation of memories and appointments. It
beeps all day long. Without it, little would come of anything.(V5)
Other participants talked about the importance of going beyond the shame and asking for
help, thereby increasing freedom and space.
I like cycling (. . .) but I have to pay attention, because this is a forest area. So one time I got
lost and couldn’t remember anything. But, then, I went to a house, rang the doorbell, and
introduced myself–who I am, and that I have Alzheimer’s–and I asked whether they could
help me. [laughs]. Usually, though, I can find my way because we have a big church here
(. . .) with a very tall tower. So I just look for it and then I know exactly where I am.
(DEM20)
Participants realized that their pace is not the same as before. They fall behind their loved
ones. Although some strongly resisted it, others seemed able to accept it:
When I see others, being busy and doing lots of things, easily remembering everything they
need to do, then I think: I used to do that as well, but I can’t anymore. I have to write every-
thing down. Everything goes much slower now. (. . .) Do I suffer because of that? No, not
really. I notice it and I’m irritated for a moment, but then I tell myself: it’s just part of life,
that’s the price you pay for a long life, for being old. I can’t change it.(V138)
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Feeling closed in within a shrinking space. Not only is the world becoming more unfa-
miliar and less like home, it is also getting smaller. Participants constantly had to adjust to
more limited horizons. They talked about deliberately creating this limitedness by withdraw-
ing from a wider social community into a close circle of intimate family and friends, thereby
seeking the safety of familiar and comfortable surroundings. Other times, the outside world
was also restricted by others who take over their place, and determine the boundaries for
them.
This year we started to have dinner at one of us, once a month. But when it was my turn, I
found my neighbour–who is my charlady and my friend as well–in my kitchen. She had
already prepared everything, everything was ready. You know, she had already been in con-
tact with the others, about how to organize it all. I was incredibly surprised, I was . . ., it was
well-intentioned, but you know . . ., the annoying thing is that, that whole group has now
judged, decided–without me–that I’m no longer able oversee it all. Yes, well-intentioned,
but you know. . .(V9)
Yet mostly it was just the inevitable consequences of the advancing disease that reduced the
possibilities for pursuing individual projects, hobbies or other leisure activities. In an attempt
to avoid (further) hassle, participants often felt forced by the circumstances to put an end to
those activities.
Recently, I unsubscribed myself from the Chamber of Commerce. That is another step on
my way to a complete dead end. . .(V137)
After deep reflection, we decided that our way of going on holiday is no longer possible. In
addition to the usual problems with me, the journey by train has become too burdensome
for us. (. . .) Regrettably, another piece of our freedom is lost and that’s on me. . .(V209)
Not only the physical, outside space is changing, many participants also experienced mental
distance. They reflected on an aching sense of ‘existential outsideness’, a feeling of no longer
belonging in the same space. Even while loved ones were physically near, mentally the distance
was getting bigger and bigger, leaving them in a limited and separated space:
I’m afraid tonight I don’t have a very positive message. Actually, I’m really suffering due to
the influence of dementia. You know, I have a lot of problems with the growing distance
between me and my relatives. With my wife, and also with my brother-in-law and my sister
who live nearby. . . They just go on with their lives, and I cannot keep up with them any lon-
ger. I know it’s just one of the consequences of dementia, this distance between you and the
ones you love. (. . .) but it makes me very sad.(V298)
Trying to control a dreaded future. Receiving a diagnosis had a strong effect on the
meaning people attached to time. On the one hand, the diagnosis came with a relative clarity: a
very uncertain and disruptive period of not-knowing has come to an end. On the other hand,
the diagnosis was also experienced as a new rupture, and the start of an even more uncertain
and ambiguous period of life. There is no clarity about the progression of the disease, how
long it will take, and where it might bring them. Mostly people were very worried about possi-
ble scenarios. Not so much the increasingly tangible proximity of the end of life, but rather the
fear of mental deterioration, loss of decorum and eventually fading into oblivion.
The fear about the future considerably changed the experience of the ‘now’. Participants’
accounts are full of references to the awareness of the limited time span of still being able to
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enjoy their relationships, family life and holidays. They became very apprehensive about the tempo-
rality of daily life. Living in the ‘now’ constantly alternated with ‘looking ahead’ to the future that is
approaching. While some were able to face this uncertain future–or even talked about ‘accep-
tance’–, other participants found it very difficult to deal with this realization. They tried to live on
and let it happen, but their attempts were steadily overshadowed by a tense fear of the future.
Nothing could be taken for granted anymore. Some diarists were engaged in an inner dia-
logue about whether their assessments are still realistic, making adjustments, rethinking their
future plans and rearranging priorities. Participants often contemplated the idea of decreasing
possibilities and the lack of a meaningful and welcoming future. For some, this resulted in mel-
ancholy, a remembering yourself the way you were in the past, when you could still trust your-
self. It also resulted in active future planning:
I have asked my geriatrician for advice, as I want to be eligible for ‘The Guest House’, which
is small-scale housing for demented people that will be established here in the near future. I
am going to an information evening about this next Tuesday.(V77)
Trying to control a dreaded future by means of euthanasia. Several participants antici-
pated the feared future by making a request for euthanasia. This may be related to the specific
Dutch context of this research project in which euthanasia in case of dementia is an option
(See Box 2 for background information). A few respondents said they wanted euthanasia in
Box 2. Background information about euthanasia in the Netherlands
Euthanasia in cases of dementia
In 2002 euthanasia was legalized in the Netherlands under strict requirements laid down
in the Termination of Life on Request and Assisted Suicide (Review Procedures) Act.
Legal requirements of due care for performing euthanasia in the Dutch context are that:
1. the physician is satisfied that the request by the patient is voluntary and well
considered
2. the patient’s suffering is lasting and unbearable
3. the physician has informed the patient about their situation and prospects
4. the physician agrees with the patient that there is no reasonable alternative
5. the physician has consulted at least one other independent physician who has seen
the patient
6. the physician has exercised due care in terminating the patient’s life or assisting in
the patient’s suicide
A growing group within the Dutch public is making euthanasia requests. Requests
regarding the ‘foreseeable future’ increased from 13,400 per year (in 2011) to 17,900 (in
2016). Requests ‘in due time’ almost doubled, from 33,900 (in 2011) to 67,700 (in 2016).
[34] Part of those requests ‘in due time’ are based on the fear of dementia, a disappearing
identity and eventually the fear of an ‘untimely and undignified death’.
One of the criteria for lawful euthanasia is that the physician should be fully convinced
that the request is the patient’s actual wish. Therefore, being competent and able to
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the short term, some wanted euthanasia in the future if they had to move into a nursing home,
while others remained relatively vague about the timing of their wishes. Basically, the wish
regarding euthanasia was driven by uncertainty and anxiety about an assumed future. Those
who had an advanced directive for euthanasia often perceived it as a form of security. It
seemed that having a choice (euthanasia) gave them a sense of retaining or regaining some
control over dreaded future time:
When it comes to a worthy and dignified end of life, my keyword is self-determination. I
want to end my life as a rational, sane person. At the moment, my thinking abilities are
already a little compromised, I have to admit, but I really want to stay in control till the end
of my life.(V187)
In most cases, however, the thought of euthanasia also gave rise to many dilemmas, such as
gradual shifts in the wish to die over time, disagreements between those involved, and diffi-
culty determining the appropriate moment. With regard to their euthanasia request, several
respondents told us about a tension between the lived now and the feared future. Often against
the odds, they still enjoyed daily life on the whole, but they were so afraid of the future that it
constantly affected the lived now. One respondent went to see her GP every three months to
confirm her wish for euthanasia, just to be sure, but on the other hand she expressed her sur-
prise and gratitude for all beautiful days.
Thus there seemed to be a substantial difference between the ‘right’ to choose and the actual
‘content’ of the choice. On the one hand, the fact in itself that participants had a right to die at
a self-chosen moment provided them some relief and assurance. On the other hand, deciding
on the how,when and/or why also turned out to be a quite demanding existential struggle. The
legal right-to-die provided no directions for their emotional state and moral attitude.
Discussion
This study seeks to deepen our understanding of what it means existentially to be in the world
as a person with dementia. The results demonstrate that living with dementia can be under-
stood as an ongoing, severely disruptive experience: the people concerned enter a very uncer-
tain, unpredictable and ambiguous period of life. They have to face all kinds of losses that
considerably change their relationships with others and the surrounding world. As the disease
develops, social relations constantly shift and should be realigned again and again in order to
accommodate the new reality. Also, the relationship with themselves and their body changes
engage in a meaningful communication is seen as a crucial condition. In case people are
no longer capable of expressing their wishes, there is also a law-based possibility to
request euthanasia based on an advanced directive, which is a written statement of their
preferences regarding decisions about euthanasia should they become incompetent.
Consequently, people diagnosed with dementia (on their own or a relative’s initiative)
increasingly want to talk about an advanced directive for euthanasia ‘in due time’ in an
early phase of dementia.
It should, however, also be noted that many Dutch physicians are reluctant to perform
euthanasia in cases of dementia. In the Dutch legal context, euthanasia is never a per-
son’s right: people are free to ask for euthanasia, but the actual decision is always based
on the individual and collegial considerations of the physicians involved.
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significantly. The familiar and trusted body–often unconsciously and silently performing in
the background [35]–is now very much in the foreground as an alien body, controlled by unfa-
miliar forces, they can no longer rely on. They often find themselves confronted by the very
‘otherness’ of their bodies [36]. The body is ‘taking over, displaying a life of its own’, and yet it
is their own. This is a highly unsettling and ambiguous experience, threatening a sense of
intactness [3537].
The eyes of others
The most obvious finding to emerge from our analysis is that ‘the eyes of others’ are of enor-
mous importance. The impact of the reaction of others to the diagnosis; the desire to still be
taken seriously and be recognized; the attempt to avoid disapproval; the increasing tendency
to withdraw: all these themes were implicitly or explicitly related to this bottom-line theme. In
some cases, ‘the eyes of others’ created a safe and accepting environment in which the person
with dementia might find ways to relate to the disease, but more often people seemed to feel
scrutinized by an inquisitive and disapproving view. This objectifying gaze had a severe impact
on daily life, as in several cases it provoked a sense of being patronized. They felt they were no
longer taken seriously in an equal, reciprocal relationship, and in some cases even felt they
were no longer approached as a ‘complete human being’. Our results suggest that this sense of
marginalization and alienation is evoked, not so much by harsh, explicit words, but mainly as
a result of tacit, insensitive practices and/or actions.
Interplay between experiences and social imaginaries
Our outcomes also reveal a connection between people’s experiences of dementia on the one
hand and dominant social imaginaries on the other hand (which we define as: often implicit
shared notions and images of certain socio-cultural groups, involving moral claims about the
basic values of society, that guide the ways in which members of a socio-cultural community
imagine their existence [3840]). Although experiences of dementia may be very personal,
they do not arise in a vacuum. Indeed, personal experiences of dementia are nested within a
socio-cultural environment: the meaning of these experiences is framed and conditioned in
interaction with this context [11]. In our research, this interplay was reflected in the following
ways:
First, as phenomenological researchers have already described, after receiving the diagnosis,
people’s experiences become ‘scientized experiences’ [41]. In our contemporary culture,
abstract scientific knowledge is highly valued. With the medical diagnosis, objectifying knowl-
edge is intermingled with subjective, daily experiences. The diagnosis calls something into
being, but the way this ‘new reality’ is put into words often creates distance from, and some-
times even contrasts with immediate bodily experiences [41,42]. Our research accords with
these earlier observations, and indicates that diagnostics may lead to healing clarity as well as
disrupting estrangement [41,42], or both at the same time.
Second, when affected by dementia, the experiences of the people concerned are shaped by
prevailing ‘social imaginaries’. Gilliard and Higgs, among others, have thoroughly described
how our collective image of aging is defined by negativity and otherness [43], and that the rise
of dementia has created an even more fearful, abject image of old age [44]. According to Tay-
lor, this negative picture derives from a society in which we regard cognitive capacities (such
as memory, language and cognition) “as the necessary foundation of individual identity, per-
sonhood, and the capacity to relate to others” [45]. And Post states that ‘the ethos of selfhood
is one of hyper-cognitivity that privileges rationality as the seat of the self’ [46]. These domi-
nant perceptions result in negative labelling that ‘contributes to social abandonment and
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isolation of the person living under the description of dementia’. Our study clearly illustrates
that much of the suffering related to dementia indeed stems from living under the shadow of
these negative social imaginaries.
Third, the experienced and internalized disapproval should not be understood as a one-way
process that is evoked only by the scrutinizing view of others. Giddens (1991) already demon-
strated convincingly that the self is not a passive entity, determined by external influences. On
the contrary. He argued that individuals also contribute to and directly promote certain social
influences [47]. Personal and social spheres should thus be seen as fluidly interwoven spheres
[38,47]. Consequently, social imaginaries on dementia can be perceived as ‘lived spaces’ in
which people share, shape and challenge the meaning of their existence [39,40,48]. Consistent
with this theory, we found that participants constantly scrutinized themselves with a criticizing
and judging view, influenced by negative, defining societal imaginaries. Simultaneously, by
participating in our research (the Dementia Diary Project and PratenOverGezondheid, the
Dutch DIPEx) they make comparable, but also contrasting experiences of dementia public,
which may lead to a nuancing or even a shift in existing public views.
Practical implications
The central strength of this study lies in the fact that it is one of the few in-depth studies that
give a voice to people diagnosed with dementia. To date, these voices often remain unheard
and insufficiently acknowledged. This might lead to misalignment, both in research and prac-
tice [49]. For health professionals, it is essential to take into account human, embodied experi-
ence in all its complexities. By providing empathic insight into precisely these complex
experiences, our study may foster a deeper understanding of the illness, its impact on people’s
lives, and its existential meaning [50]. A phenomenological approach to dementia is promising
in that it goes beyond the prevailing reductionist and objectifying view [51,52]. Indeed, it pro-
vides a non-judgmental tool [50] that allows a receptive view which is characterized by open-
ness towards the world and the needs of the other” [51] [52].
As shown by the study, disruption of social relationships and roles is a great burden for
dementia patients. While ageing scholars have been pleading to take into account the social
context of dementia for many years now [5356], the main focus in research so far is still on
the biomedical and psychological approaches of dementia [57]. Our study supports the
demand for a socio-relational approach by demonstrating that–from a first-person perspec-
tive–dementia can be seen as a disorder that is related in particular to questions about self-
hood, social relations and social roles. Our study also underlines the importance of
appropriate social interventions for people with dementia, and confirm the idea of Johnston
et al. that such interventions should seek to enhance personhood, facilitate meaningful
engagement and offer the potential for the person to leave a legacy [58]. Rather than what
dementia is (e.g. a medical condition, clinical diagnosis, disrupted bodily functions, some-
thing that must be cured), for the people involved the focus is on what the disease means
and does, for example, that it deeply affects their ability to continue their lives, relations and
activities.
The outcomes of our study thus provide further support for the thesis that research and
medical practice are perhaps still too preoccupied with causes and symptoms, overlooking the
meaning for the persons involved. Based on our research [5961], we conclude that substan-
tive change in the current focus is necessary. This is not, however, a plea for a new dichotomy.
Conversely, dementia should be seen neither as a cognitive dysfunction nor a socio-relational
construct only. Instead, to do justice to the complex reality of living with dementia, our
research and practice should include both sides.
‘The eyes of others’ are what really matters: Living with dementia from an insider-perspective
PLOS ONE | https://doi.org/10.1371/journal.pone.0214724 April 3, 2019 19 / 23
Limitation of the study
There are some considerations that should be taken into account when interpreting our
results: First, following from our aim to grasp the overall existential meaning of living with a
form of dementia, we deliberately chose to include people with different forms of dementia, in
different stages of the disease. The member check we conducted demonstrated that the
described bottom line of this study strongly resonated with participants’ experiences.
The fact remains, however, that different people, different forms of dementia and different
contexts will result in unique experiences and emphases. Researchers and practitioners should
therefore always strive for a balance between a shared, general understanding of the experience
of living with dementia and a unique, personal understanding of this specific case [22,62].
Second, our findings are somewhat limited by the fact that joining our study (and our proj-
ects the Dementia Diary Project and the Dutch DIPEx) requires certain cognitive linguistic
skills. While some diarists were assisted by their loved ones, our approach unavoidably
excluded those who are not able to express themselves through talking or writing. This is an
important issue for future research. To develop a full picture of what it means to live with
dementia, additional qualitative studies will be needed that shed light on the experiences of
those who are unable to join common interviews or keep a diary.
Third, this study was conducted in The Netherlands; a high-income Western-European
country with an advanced and sophisticated system of dementia diagnosis and care. In addi-
tion, it is a country that has the option of euthanasia. This specific context certainly influences
the outcomes, and the results may not be directly generalized to the lived experience of people
living with dementia in other socio-cultural and economic environments. This is, however,
typical for qualitative phenomenological outcomes; they should never be seen as final and
absolute outcomes. While phenomenological research strives to describe the essential meaning
of the phenomenon under research, it is also clear that meaning should always be viewed as
contextual and infinite.[22,28,33] In the context of this study, generalization should thus not
be understood as universal, factual, and/or quantitative generalization, but as an ‘existential
generalization’ [28] which means ‘a meaning-based, essential understanding of the phenome-
non’ that should help to ‘make contact with life as it is lived’[28].
Supporting information
S1 File. Context information about the projects.
(DOCX)
S2 File. Topic list interviews.
(DOC)
S3 File. Elaboration on the lifeworld existentials.
(DOCX)
Acknowledgments
First, we owe many thanks to all our interviewees and diarists who shared their stories with us.
We also thank the whole Tao of Care-team for thinking and working along with us. Specifi-
cally, we thank Rikke Komen for her assistance in project administration, data curation, and
for her comments on an earlier version of this article. We also want to thank Zerline Henning
for reviewing an earlier version of this paper. Last but not least, we want to thank Rikke, Heiba
Targhi Bakkali, and Bram de Man for establishing and maintaining contact with our diarists.
‘The eyes of others’ are what really matters: Living with dementia from an insider-perspective
PLOS ONE | https://doi.org/10.1371/journal.pone.0214724 April 3, 2019 20 / 23
From the PratenOverGezondheid team, we would like to thank Griet-Anne Banga who con-
ducted the interviews.
Author Contributions
Conceptualization: Anne-Mei The.
Data curation: Manna Alma.
Formal analysis: Els van Wijngaarden.
Investigation: Els van Wijngaarden, Manna Alma.
Methodology: Els van Wijngaarden, Manna Alma, Anne-Mei The.
Supervision: Anne-Mei The.
Writing – original draft: Els van Wijngaarden.
Writing – review & editing: Els van Wijngaarden, Manna Alma, Anne-Mei The.
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There has been an increasing drive towards the legalization of physician-assisted suicide (PAS) in patients with dementia, particularly in patients with advanced disease and severe cognitive impairment. Advocacy for this position is often based on utilitarian philosophical principles, on appeals to the quality of life of the patient and their caregiver(s), or on economic constraints faced by caregivers as well as healthcare systems. In this paper, two lines of evidence against this position are presented. First, data on attitudes towards euthanasia for twenty-eight countries, obtained from the World Values Survey, is analyzed. An examination of this data shows that, paradoxically, positive attitudes towards this procedure are found in more economically advanced countries, and are strongly associated with specific cultural factors. Second, the literature on existing attitudes towards PAS in cases of dementia, along with ethical arguments for and against the practice, is reviewed and specific hazards for patients, caregivers and healthcare professionals are identified. On the basis of these findings, the author suggests that the practice of PAS in dementia is not one that can be widely or safely endorsed, on both cultural and ethical grounds. Instead, the medical field should work in collaboration with governmental, social welfare and patient advocacy services to ensure optimal physical, emotional and financial support to this group of patients and their caregivers.
Thesis
The PhD dissertation explored: 1) a multilayered image of the dementia experience and dementia care provision among labor migrant families, and 2) methodological pathways to contribute to more ethical research involving this population. The findings of this dissertation are based on five studies. The findings show that the experience of dementia and the dementia care trajectory is defined by the intersectional social position of older labor migrants and their families, inviting us to move beyond the binary division between migrants and non-migrants with “having a different culture” as the division line. This while recognizing the impact of having a migration background, a non-normative culture and religion on care provision. The current dementia care is provided by a complex and dynamic transnational network of informal and formal caregivers that also includes alternative care forms. This picture of care provision is sought by family caregivers as an answer to their unmet care needs: A “complexity-sensitive person-centered responsive care” considers the multilayered identity of the older migrant with dementia. This reflects individual and structural professional care gaps to provide inclusive dementia care. Understanding this complexity can advance the provision of better dementia care for older migrants with dementia. Therefore, a new conceptual lens to examine dementia care for a diverse population is suggested. This dissertation also contributes to the debate on how to conduct ethical research on dementia among older migrants by moving away from the culturalist frame where it is currently embedded with biased and narrow assumptions about this population as a result. This dissertation suggests therefore a further exploration of decolonial frameworks as compass for an ethical gerontological research praxis: a praxis that engages us into a process of awareness of and resistance to the historically rooted coloniality of mind in our own knowledge production.
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ARCTT is a peer-reviewed all-purpose journal covering a wide variety of topics of interest to the mental health, neuroscience, and rehabilitation communities. The mission of ARCTT is to provide systematic, periodic examinations of scholarly advances in the field of CyberTherapy and Telemedicine through original investigations in the telemedicine and cybertherapy areas, novel experimental clinical studies, and critical authoritative reviews. It is directed to healthcare providers and researchers who are interested in the applications of advanced media for improving the delivery and efficacy of mental healthcare and rehabilitative services. www.arctt.info
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