Getting Insight to the Lived Emotional Experience of People with Alzheimer’s Disease Shortly After Diagnosis: A Phenomenological Approach

Abstract

Background:

A diagnosis of Alzheimer’s disease (AD) is a crucial moment in an individual’s existence and represents a major life change that often results in psychological distress, diminish of perceived quality of life, and loss of independence. It is important to better understand the emotional experience of people with dementia to intervene according to their specific needs.

Objective:

The aim of the research was to get insight to the emotional experience of people with AD shortly after its discovery and the consequences thereof.

Methods:

A qualitative exploratory design was engaged, and in-depth interviews were conducted with ten French-speaking participants over 70 years recently diagnosed. Interviews were guided by Heideggerian phenomenology about movements in the worldview of individuals. The transcribed data was subjected to interpretative phenomenological analysis.

Results:

Following the diagnosis, participants experienced either shock or denial. Emotions felt were unpleasant and disturbing for most of them. Especially when participants were confronted with news concerning the illness, they experienced incomprehension. They engaged in an oscillatory motion of connection and disconnection to establish new meanings of their worldview. Thinking about the past seemed to diminish their worries, to reinforce the possibility to fulfil a significant place in their existence and to maintain their autonomy.

Conclusions:

When participants could express their emotional experience and their concerns, they regained a sense of control in their life that seemed du reduce their distress. With this insight, intervention could be adapted to the specific needs of people with AD to enhance their self-determination and quality of life.

Keywords

Alzheimer’s disease dementia diagnosis distress emotions interpretative phenomenological analysis qualitative research quality of life self determination

INTRODUCTION

The diagnosis of a serious illness is a significant challenge in a person’s life; major neurocognitive disorder due to Alzheimer’s disease (MND-AD) is being one of them [1, 2]. Study results suggest that a person receiving the diagnosis is subject to a process where they first experience a state of shock or denial which then triggers an emotional reaction that leads them on to coping strategies that allow them to reorient themselves into their new reality [3, 4]. The meaning and understanding of their life alter as their life from before the diagnosis ceases to exist. The people with AD identity markers tend to disappear gradually; in a kind of ontological death [5]. The individual is confronted by a kind of collapse (Zusammenbruch), “where what dies or comes to an end is not a physiological entity but the ability to understand and make sense of the world and oneself” (p. 56) [5]. They then become “unable-to-be”: the individual is therefore forced to redefine his way of being-in-the-world (Dasein).

In addition, several researchers have shown that there are numerous psychological consequences related to AD including the presence of anxiety, depression, and sleep disorders [6 –9]. Even before a diagnosis, the presence of anxiety or depression symptoms and sleep difficulties can be predictors of future cognitive decline [10 –14]. Moreover, psychological distress (anxiety, depression, and insomnia) is associated with accelerated loss of cognitive abilities [9 , 16], the presence of behavioral and psychological symptoms of dementia [17], loss of independence [9], decreased functionality in daily activities [8], and a poor quality of life (QoL) [18]. Indeed, people with AD often report a decrease in their perceived QoL [19]. Their well-being is thought to be determined in part by their ability to maintain some control over their lives and to be able to act in a self-determined manner [20, 21]. It is therefore important to offer an intervention focused on the specific needs of people with AD to reduce their psychological distress, reduce the frequency of behavioral and psychological symptoms of dementia and allow them to maintain their self-esteem and good QoL [22]. To determine the interventions that adequately meet the specific needs of people with AD, firstly it is important to better understand their subjective experience, that is, to be receptive to the humanistic and existential issues of the disease, especially in the early stages [23]. Gaining this understanding of the issues cannot be done by questioning the caregiver, because they do not have access to the individual lived experience of the person with AD [20]. These authors suggest that the individual experience, even if it seems illogical or different from a person living without dementia, represents the reality of the people with AD and allows access to their expectations and needs. They conclude that according to this the proposed interventions can therefore be based on a real need instead of being presuppositions of what is useful for the person, regularly limited to more medical interventions. This understanding can be achieved regardless of memory loss or lack of awareness of the diagnosis or even the disease. Awareness is a broad concept that is not clearly defined including 1) medical explanations: anosognosia or 2) psychological and motivational definitions: denial [24]. Anosognosia, which is defined as “poor awareness and loss of insight” seems to be linked to daily real-life difficulties, conducting sometimes to risk-behaviors [25]. Denial is a psychological mechanism that reinforces the person’s ability to adapt when faced with a threat to their identity [26]. Regardless of the person’s awareness, emotional experience seems to be preserved in MND-AD [27]. Even if the autobiographical memory declines, people with mild and moderate AD will continue to rely on self-defining memories related to past emotional laden experiences [28]. Stimulating autobiographical memory could lead to its improvement, which could also promote self-awareness in people with AD [29].

In addition, the latest global action plan on the public health response to dementia highlights the importance of developing interventions that focus on the needs of people with AD, reducing their stigma and improving their inclusion in society [30]. The first step would be to focus on the emotional experience and individual needs of people with AD. Recently, several studies have highlighted the importance for people with AD of lived time [31], the perceived evolution of their relationships [32], their need to stay connected and to maintain a feeling of usefulness [33], and the changes in their self-concept and self-esteem [34]. However, few researchers have observed the holistic view of the processes involved, including the surrounding world, relationships, and self-perception of people with AD. Most studies were conducted several years ago [35 –38]: their methodology is not always clearly reported [36, 37] or the research question was limited to a specific aspect of the subjective experience of the person with AD, such as acceptance versus denial [38] or the representation they had of the disease [35, 39].

Considering the shortcomings of these previous studies, the purpose of the current study is to describe the subjective experience of people with AD following the diagnosis and the consequences thereof. More specifically, the aim is to better understand their emotional reaction and identify possible changes in their being-in-the-world, including their environment, their relationships with others as well as their perception of themselves.

METHODS

Theoretical approach

This study anchors in the Heideggerian phenomenology of perception according to which the ultimate goal of the individual is to explain their being-in-the-world (Dasein) [40, 41]. Being-in-the-world undergoes perpetual change, influenced by constant contact with the world immediately around him (Umwelt), the relationships and interactions with others (Mitwelt) and the relationship to the self (Eigenwelt) of the individual. These three worlds describe their worldview (Weltanschauung) in a general way. During an important change of life, such as experienced by people with AD, these representations are set in motion to allow an adaptation to the new reality they are experiencing.

Participants

Participants were recruited between November 2019 and August 2021 in collaboration with a university-affiliated cognitive clinic located in a large urban area and serving a primarily francophone population. Ethical approval for this study was given in October 2019 by two local Research Ethics Committees (research center and university).

Participants received a formal diagnosis of MND-AD based on the criteria of the DSM-5 manual by a geriatrician [42]. They had to be diagnosed for up to three months and had to be assessed at a mild stage of the disease (Clinical Dementia Rating [CDR] =0.5 –1). As such, we aimed for a homogeneous sample [43]. To be eligible, participants had to be at least 70 years old and be able to speak and understand French. Also, participants were not to be subject to a protection mandate and, therefore, were able to express their free and informed consent. Finally, participants had to have the desire and ability to express themselves about their experience of the disease. Individuals with a high vascular burden (risk of vascular or mixed dementia), those with disability or illness (e.g., severe psychiatric disorders, other neurodegenerative diseases), and those who received an early-onset diagnosis of MND-AD were excluded as they could bias the emotional experience reported with MND-AD. Given that people in the workforce face issues (e.g., production-related stress, work-life balance, etc.) that are not usually experienced by retirees, and considering that these issues may impact the way diagnosis is experienced, we did not include people with early onset of MND-AD [44, 45].

In parallel, sample variation was sought according to socio-demographic data (e.g., gender, origin, education), to explore the disease from different perspectives. Given the complexity and individuality of the experience of a diagnosis of MND-AD, a sample of between five and ten participants was used. Since this research involved a population that had not been directly questioned much in the past, the sample provided rich data with a small number of interviews [46, 47]. The final sample consisted of ten participants, six women and four men, with an average age of 81 years (R = 72–92 years). The participants lived in the community and half lived with their spouses. They could all rely on support from a relative or friend (e.g., spouse, children, nephew/niece, brother/sister, neighbor). The socio-demographic data is detailed in Table 1.

Table 1

Socio-demographic data

Men	Women	All
	(n = 4)	(n = 6)	(N = 10)
Average Age	81,5	80,5	81
Marital status
Married or common-law partner	3	2	5
Single or divorced	–	2	2
Widow	1	2	3
Lives with...
Spouse	3	2	5
Alone	1	4	5
Number of children
0	1	3	4
1	1	2	3
2 et +	2	1	3
Family caregiver
Yes	3	6	9
No	–	–	–
Unanswered	1	–	1
Origin
Canada	3	4	7
Europe	1	2	3
Housing
Private residence	4	2	6
Rented accommodation	–	2	2
Senior housing	–	2	2
Education
Grade 9, secondary &college	–	4	4
University	4	2	6
Income
$9,999 or less	–	1	1
$20,000 –$29,999	–	1	1
$30,000 –$39,999	2	2	4
$40,000 –$49,999	–	–	0
$50,000 and more	2	1	3
Don’t know	–	1	1

Interviews

The first author conducted all semi-structured interviews (N = 10) with an average duration of 61 minutes (R = 45–100 min). She is a doctoral student in clinical psychology (PhD) with a solid professional experience working with older people, especially those living with a particular condition such as dementia. She has worked in this field at various levels over the past 15 years, especially by coordinating the prevention of mistreatment situations (government level) and by intervening with people with AD in nursing homes (psychosocial intervention). She is also involved in research on this topic (i.e., development of adapted interventions for people with AD and their caregivers). She buildout a strong curiosity for her research topic by observing the current dysfunctions of intervention in different contexts, raising the need to better understand the lived experience of people with AD to give them back a voice. It should be noted that from the outset, one-on-one interviews created a high degree of proximity with the participants, enriching corpus data throughout the process [48]. Given the pandemic (COVID-19), interviews were largely conducted by telephone (n = 5) or via videoconference (n = 2). Only three participants were able to be interviewed in their homes. The interviews were digital audio-recorded, transcribed verbatim and checked for accuracy [49]. After obtaining the participant’s verbal consent (audio-recorded), the interviewer began the interview with an open-ended question regarding the purpose of the meeting to ensure that the person is clearly informed about the topic. Throughout the interview, regardless of the method chosen, the interviewer allowed the participants to explore through reflection, active listening, and an empathetic posture [50]. Particular attention was paid to their needs: breaks, moments of reminiscence, etc. [51]. The goal was to allow them to address their individual experience of the disease and to facilitate a co-construction of meaning [48]. Questions targeted the broad topics, for example the guideline for the world immediately around provided: “What is your daily life about? Can you tell me more about a normal day? Have you experienced any changes in your daily life recently? If yes, what kind of changes and how do you manage them?”. The interview concluded with a brief socio-demographic questionnaire and the interviewer inquired about the experience of each participant about the interview process and their actual feelings.

Data analysis

The data was analyzed from the perspective of interpretative phenomenological analyses (IPA) [46]. During an IPA, the double hermeneutic is used, resonating with social constructivism. It signifies extracting meaning from the participant’s speech as they try to make sense of their experience, thus bringing out a joint understanding between the researcher and the participant. The analysis was conducted following the six steps suggested by Smith and colleagues [46]: 1) immersion in the corpus data and listening to the recordings again, which allowed the writing of impressions to raise consistencies and contradictions within an interview; 2) drafting exploratory notes: descriptive, linguistic and conceptual; 3) developing emerging themes: fragmentation and deconstruction of the text; 4) linking emerging themes and creating a link to the research questions; 5) repeating the previous steps for each participant by putting aside any acquired understanding; and 6) understanding repetitions through different analyses. Through these six steps, it appears that the IPA consists on the one hand of an idiographic analysis (intra-case) and on the other hand of a shared analysis (inter-case). Unlike a classical phenomenological approach that would be more descriptive, the IPA has an interpretive element that is particularly suitable for an in-depth understanding of the subjective and emotional experience of the people with AD [38, 39]. It was possible to go beyond their cognitive self, particularly affected, to co-construct the meaning of lived experience based on their experimental self which is much less affected by the disease [52 –54].

Criteria for rigor

In a constructivist and phenomenological study, the reliability of the results is reflected, among other things, by authenticity, which represents an important criterion for rigor [48]. Throughout the entire research process, from interviews to writing, each participant’s experience was explained in an equivalent way according to an ontological approach that postulates that there are different individual truths that are mutable. For this, it was crucial to maintain reflexivity throughout the process by rigorous note-keeping following interviews, during playback and during the analyses. This helped to keep in mind that the researcher’s thoughts and experiences influenced the analytical process, especially during the interpretative component. The length of the interviews, the close contact with the participants, and the regular discussions between the authors contributed, beyond reflexivity, to support the study’s credibility. In addition, it was possible to obtain adequate information power with a sample of ten interviews, related to the specificity of the sample and the quality of the interviews, while establishing rigor in the analyses, supported by theoretical contributions [55]. Each interview was first analyzed individually bringing out subordinate themes. Then, these themes were compared with all the participants to create new ones. Only predominant themes for all were used. Finally, transferability and naturalistic generalization were addressed by an in-depth description of each participant’s subjective experience as well as interpretation beyond discourse [47, 48]. This allows the different stakeholders, whether a caregiver, a professional or a policy maker, to use the results of this study according to their understanding to apply them to other situations, specific to their reality [54].

RESULTS

Participants showed some points of convergence in their response to the diagnosis of MND-AD and the resulting consequences, particularly with respect to the emotions felt. The announcement of the diagnosis represented a major event in the life of the person which changed their worldview. First, the reactions to the diagnosis, including the emotions experienced, that set the participants’ worldview in motion are seen. Then, the description of the change to their understanding of being-in-the-world by a movement of connection and disconnection in their relationship to the world immediately around them, their relationships and interactions with others and their relationship to the self, which allows them to find a new meaning in their lives will follow.

Reaction to the diagnosis

The diagnosis of MND-AD provoked individual emotional reactions in people with AD (Table 2). It was possible to find a dichotomy between participants who were aware of their diagnosis and talked about it openly and those who showed some misunderstanding, or even denial, about the announced diagnosis. The consequences differed.

Table 2

Reaction to diagnosis

Shock
Sadness	Especially because it’s as if I’ve taken all these tests then it was decided, in fact we found that I was Al that I tended to be Alzheimer’s. Alzheimer’s disease, well, it was a big shock. I cried for 3 days... [silence].
Anxiety	Indeed, I was waking up more often and [clears throat] that translated into that even when I was awake, I could worry about what was not working in a bit of an intense way.
Feelings of stigmatization	You know I’m labelled as a... you know my... the illness. I forgot [laughs]. Um [knocks on the table] Alzheimer’s [whispers].
Desire to live in ignorance	That’s the problem, she discovered that I had Alzheimer’s at the beginning of the year, you know. [...] And... it was better not to tell me [laughs] because of that, I started to have a little bit of stress, you know. If I didn’t know, it was better [laughs].
Denial
Physical causes	Confusion in my head, yes, because I fell. You know, my problem there
Lack of awareness	There really are no little glitches.
Misunderstanding
Little or no explanation	That’s the problem when I’m at yours [cognition clinic]. I don’t know how I ended up there. I had a normal routine check, nothing special, you know. I was there and I had...
Absence of information	Shocking, shocking, especially since she was not able to tell me. She didn’t tell me anything, anyway I was sure she wasn’t there to tell me that.
Infantilization	When he tells me “invalid”. Invalid? As far as I know, I’m not yet invalid... I definitely don’t have the energy I had and my head is not as... [laughs]. It’s my whole life nonetheless, autonomous all the time...

“It was said that I have the characteristics of Alzheimer’s”: Shock. Half of the participants openly discussed different emotions experienced following the announcement of MND-AD, like sadness, insecurity, fear, worries, anxiety, and embarrassment. Monique¹ described the sadness and despair she felt immediately after she was diagnosed:

Especially because it’s as if I’ve taken all these tests then it was decided, in fact we found that I was Al that I tended to be Alzheimer’s. Alzheimer’s disease, well, it was a big shock. I cried for 3 days... [silence].²

The shock of the diagnosis caused concern and anxiety related to the continuity of life as known:

Indeed, I was waking up more often and [clears throat] that translated into that even when I was awake, I could worry about what was not working in a bit of an intense way. (Philippe)

The diagnosis also brought fear, especially in relation to stigma:

You know I’m labelled as a... you know my... the illness. I forgot [laughs]. Um [knocks on the table] Alzheimer’s [whispers]. (Pierre)

The news of the diagnosis created a desire to live in ignorance, a strategy probably used to deal with the emotions experienced:

That’s the problem, she discovered that I had Alzheimer’s at the beginning of the year, you know. [...] And... it was better not to tell me [laughs] because of that, I started to have a little bit of stress, you know. If I didn’t know, it was better [laughs]. (Pierre)

This participant spoke of the possibility of living in denial as a refuge from the distress and anxiety experienced when confronted with the disease’s progression.

“No, there really are no small glitches”: Denial. For some participants, it was preferable to stay in denial regarding the diagnosis, either through misunderstanding or to maintain hope. Anosognosia, often present in MND-AD could represent another possible explanation for this phenomenon. Mathilda felt that her memory issues were related to a fall on her head that happened some time ago:

Confusion in my head, yes, because I fell. You know, my problem there

For her, although she saw a change in her current life, the hope of healing continued to exist, which allowed her to reduce her emotional load.

Conversely, other participants, such as George and Josée, did not seem to be aware of their difficulties:

Interviewer: Has anything else changed in your life? In terms of your memory or concentration? Things like that? George: No, not so much. - Josée: There really are no little glitches.

Denial seemed to trigger feelings of boredom and frustration among participants. Lisette continually repeated the inevitability of her life situation and the boredom she felt:

One day at a time, we can’t change that.

“Saying for what reasons”: Misunderstanding. The consequences that arose immediately after diagnosis differed between participants who experienced shock and those who lived more in denial. However, anger and irritation were emotions shared by all participants. These expressed a misunderstanding of the situation, like the perceived lack of communication from the health system and being judged by loved ones. Irritation felt towards the health system was mainly due to losing their driving license, feeling ignored, a lack of consideration towards them during medical visits or at home and the lack of clarity when the diagnosis was given.

The perception that little or no explanation had been received from health professionals regarding the disease was a common concern for several participants. Given their cognitive difficulties, some participants may not remember it or prefer to put this difficult diagnosis to one side:

That’s the problem when I’m at yours [cognition clinic]. I don’t know how I ended up there. I had a normal routine check, nothing special, you know. I was there and I had... (Pierre)

Paule has an unpleasant memory of her meeting with the doctor who told her of the diagnosis and who also revoked her driver’s license. According to her, there was no communication, leaving her with little information about her condition:

Shocking, shocking, especially since she was not able to tell me. She didn’t tell me anything, anyway I was sure she wasn’t there to tell me that.

In fact, she clearly described her incomprehension of the doctor’s reasons for withdrawing her driving license, which seemed to have increased her distress:

Say “for what reasons you do this, I have no problem driving, I have never had any accidents. I don’t speed. So, it’s clear to me that I know I shouldn’t go 100,000 an hour.” (Paule)

The feeling of being treated like a child was very present. This same feeling also appeared in connection with the behavior of some loved ones which was perceived as being protective and undermining the sense of autonomy of the people with AD. For Monique, she felt infantilized when her son mentioned putting in place a protection mandate:

When he tells me “invalid”. Invalid? As far as I know, I’m not yet invalid... I definitely don’t have the energy I had and my head is not as... [laughs]. It’s my whole life nonetheless, autonomous all the time...

Following the diagnosis of MND-AD, participants experienced either shock or denial. The emotions felt were disturbing and unpleasant for most of them. These emotions were accompanied by questions regarding their condition and a feeling of incomprehension, especially when they were faced with news of the disease. To be able to explain and make sense of their experience, participants were subject to a dynamic and oscillatory motion, to adjust their being-in-the-world according to a new worldview including their world immediately around them, relationships and interactions with others, and the relationship to the self. Indeed, their memories of past experiences seemed to be essentially related to a connecting motion (e.g., professional life, sense of purpose, autonomy, and accomplishments), while their current experiences and future-oriented thoughts were related to a disconnecting motion (e.g., living environment, feelings of exclusion, dependence, and loss of bearings). This back and forth between the past and the present helped them individually and dynamically adjust their being-in-the-world. Existential questions, such as freedom, the meaning of life, old age, finitude, and death were then raised and dealt with to give meaning to everyday life.

Modification of the worldview: An oscillatory motion

“Maybe I’m starting to no longer be a part of the world I live in”: World immediately around. Participants defined their relationship to the world immediately around them as being in perpetual motion. Their past life (e.g., their professional life) allowed them to have a connection linked to a sense of belonging and integration. Their current life (e.g., their living environment) was more linked to a disconnection felt as a excluding movement (Fig. 1). Josée’s perception clearly illustrates this oscillatory motion. She felt a strong sense of belonging in her professional life, while her interest in the world around her seems to have disappeared with her retirement:

Fig. 1

The connection-disconnection oscillatory motion as a means of adjusting the worldview.

From the moment I retired... I was in the situation of an individual taking their retirement. I wasn’t with any group... any project... except trying to live retirement.

She explained her current feeling of being excluded as:

Maybe I’m starting to no longer be a part of the world I live in. I often feel left out of it.

For Mathilda, the environment appeared threatening and dangerous. Her apartment was a safe place where she could find refuge, but which distanced her from the world:

I prefer to stay at home and alone because I live alone and... It was like that, it’s not easy.

She had voluntarily withdrawn from the world around her:

I don’t go out much []. I have days, where I’m shut indoors because of the cold, winter... even during summer, I am always at home.

Conversely, to continue to feel part of the world around them and so perceive themselves as connected to the life around them, participants could take an interest in events and maintain interest in current topics:

Well, I still want to be [...] what is going on in the world and be more or less aware and a little to say and then... . (George)

“I would like to stay in touch with my friends even if it’s difficult”: Relationships and interactions with others. As with the world around them, when participants discussed their relationships and interactions with others, they tended to define themselves by their former relational roles (e.g., mother/father, husband/wife) and past social activities (e.g., travel, choir). The connection with others was thus created by a sense of belonging and purpose. Conversely, present and future-oriented thoughts were generally defined by disconnection, a sense of dependence and isolation. Sometimes, participants even reported that they voluntarily withdrew themselves from relationships, creating greater isolation, which in turn reduced their sense of control over their lives and their self-determination (Fig. 1).

All participants could count on the presence of family members and friends, as described by Philip:

Well, my spouse is fine; most importantly we are here. (...) I continue to see friends. I see them regularly. (...) Everything is normal from that point of view.

However, the perception of their relationships with others was changing. For most of them, they had gone from equal relationships to relationships based on help and support:

My niece [and I], we were not very close but since I have been ill, she is there for me... (Monique)

This phenomenon deprived the participants of the sense of usefulness they had experienced in their past lives:

That’s it, not to disturb the person: I like helping another person very much. If I can, I like to help others more than others help me [laughs]. (Mathilda)

Another participant clearly illustrated the change in her relationship with her son whom she had raised alone, which gave her a sense of purpose and pride in her role as a mother:

Yes, a son that I raised on my own who later found his father. (Monique)

Since her diagnosis, she felt dependent on her son’s help to take care of her medical file and to accompany her to her appointments, thus depriving her of some of her independence:

He is the one who takes care of my health file and it’s him who communicates with doctors and doctors communicate with him: so that’s good. He’s here. This week, I have two appointments and he will come with me both times. (Monique)

However, even though she bemoans this dependence and loss of independence, she was grateful for the help she received, as she felt that she could not cope with her situation any other way:

Yeah, in every way. Physical first of all, I don’t have a car anymore, and it’s not always close by [...] And then sometimes you have to walk for quite a long time. He [my son] is really interested so that’s it: I have him or if he can’t, it’s my niece who comes with me. (Monique)

Participants also spoke of their past social activities describing them as fulfilling and satisfying. For example, one of the participants was in a choir, which gave them a sense of belonging and being integrated. This memory allowed them to continue to feel connected to others, even if the absence and the current feeling of loneliness triggered more of a disconnection from their relationships:

With my interests that I had... That is that I sang in a band when I was younger, and it was fun because we actually toured a little and all that. I also had friends from tennis. I still play tennis, but relationships are more just to play tennis... We don’t socialise much. (George)

For this participant, this memory also resulted in feelings of regret since the desire to connect with others remained strong:

I would like to stay in touch with my friends even if it’s difficult, because we’re seeing less and less of each other. (George)

Conversely, for another participant, decreased social relationships and perceived exclusion resulted in disinterest and disengagement towards others, which would have increased their sense of disconnection:

You withdraw... You no longer participate... It no longer tempts you... It no longer interests you... [...] It’s like you have no interest. (Josée)

The evolution of interpersonal relationships thus drew an oscillatory process between the connection, linked to a sense of belonging and usefulness, and disconnection, translated into withdrawal and exclusion.

“My life before was normal”: Relationship to the self.

In the same way that relationships in the world immediately around them and the relationships and interactions with others, the relationship to the self, including self-awareness, definition of identity and self-esteem, was also subject to an oscillatory motion between connection and disconnection (Fig. 1). To maintain a sense of self and to preserve their identity, participants referred to their past accomplishments (e.g., roles) creating a movement of connection with their identity. When they discussed their present lives or projected themselves into the future, a movement of disconnection took place resulting in a loss of bearings, a blurring of identity and a threat to one’s self-esteem.

Indeed, the participants were subject to a loss of their bearings in relation to what defined them as an individual during their lives:

Yes, it has changed a lot. I’m not the same person anymore. (Mathilda).

This vagueness led to a decrease in their self-esteem and triggered worries and insecurity:

Then I realised that I was no longer good at anything [laughs]. But hey... I have resumed, I am afraid. I’m afraid to go into the shower, I’m afraid to fall over everywhere. (Monique)

To restore their self-awareness and maintain their self-esteem, participants held tight to past accomplishments allowing them to value themselves as individuals and experience a sense of pride:

I think I had a good self-image. Was it because of my work... I don’t know,... I think I had a good self-image. I was someone who was autonomous I knew how to meet the demands in my life. And that is important to me. (Josée)

Past achievements thus had an important place in the definition of one’s self and maintaining an identity:

My life before was normal: I worked, I come home, I take care of our things. I had a car. I drive, I buy a lot of nice things in my life. (Mathilda)

These memories have made it possible to bring a new meaning to today’s life:

I am asked because of my experience, because of my publications, because of... I am occasionally asked about the differences, about the indigenous issue or about Latin America where I worked a lot. (Philip)

Whilst holding on to their past accomplishments, this participant had managed to maintain consciousness of their identity as they felt they had control over their life:

I agreed to stop at that moment in time and I accepted without necessarily considering myself as retired. I accepted I was retired two to three years ago: “Well there, I leave everything.” I also don’t oblige myself to write texts because I am asked by different sources for articles. [ ] I only do what I care enough about to mobilise significant energies. (Philip)

Pride in past accomplishments has also made it possible to accept a certain inertia in today’s life while maintaining self-awareness:

I’m proud of what I did and at my age, I am 79 years old, it’s normal to sit on your butt a little bit [laughs]. (Monique)

To maintain a good self-image in their current life, maintaining autonomy and functionality in daily life was also an important factor:

Well, imagine, I’m alone here. I do everything a family does, but alone, in an apartment. I have three bedrooms; I have a music room with a piano. (Pierre)

Past accomplishments appear to have played an important role in maintaining the identity, self-awareness, and self-esteem of participants in this study. The memory allowed the people with AD to value themselves and maintain a sense of pride to compensate for a loss of identity and self-awareness as well as a decrease in self-esteem in their current lives.

As illustrated above, the oscillatory motion of connection (past) and disconnection (present and future) concerning their world immediately around them, their relationships and interactions with others and the relationship to their self seems to have allowed the people with AD to establish a new meaning to their worldview and to modify their own way of being-in-the-world, based on existential concepts of life.

“I’m really happy... with my life; I am emotional.”: Being-in-the-world.

To redefine their being-in-the-world, participants were all confronted with existential questions, including the values they defended such as freedom, solitude, finitude, and death. They demonstrated a need to feel in line with their values to rebalance their worldview and value their current life. Past accomplishments seem to have reinforced their perception of retaining the ability to maintain a place in their existence:

I worked in the field of human rights for about thirty years [ ] It cements people’s lives, their possibility of freedom, their possibility of choice. [...] I have lectures to give, and I am in the field because of my experience as a political scientist. (Philip)

For this participant, the continuity of his life could take place in connection with the values related to his past work experience where he was able to find meaning via the importance he attached to the transmission of his knowledge. For others, there was a separation between their past accomplishments and their current functioning, which consisted in placing more importance on the quality of relationships and experiences. Their self-understanding was now defined more markedly by “who they are” than by “what they did”:

I’m less active... I’m still active with [my old workplace], but I’m less and less active.... But for example, every Sunday night, I tell tales to my grandchildren and that’s becoming more and more important: it’s very pleasant. (Gérard)

As a first existential theme, freedom was essentially a concept oriented towards the past, but which allowed participants to stay connected in their current existence:

I was a free woman, very free... I’ve done everything I wanted to do in life and now, I’m very limited [laughs] but I have a good morale in general I think... (Monique)

The idea of freedom and independence also allowed participants to continue to feel able to face their daily lives, while allowing them to grieve over some irreparable losses. Connecting with past abilities made it possible to adjust expectations of oneself while maintaining meaning in life:

Whilst I’m still able to, that’s what I want to do. It’s going to be difficult when I’m not going to do it anymore, I know that. But when I can’t anymore, maybe I’ll finally accept that I can’t anymore. Because right now, I do not accept that I can no longer do it, because I still can. I can do less because there are certain things that I no longer do. I say to myself, “Well, that’s less important, I don’t need to do it.” (Ursula)

The second existential theme that was central to the participants when reflecting on their current lives was loneliness. Although they had maintained their existing relationships, they felt a decrease in their quality and frequency:

The circle is getting smaller and smaller. I see less and less people [silence]. (Josée)

Some participants tended to normalise their withdrawal, which allowed them to make sense of the decrease or absence of contact and involvement in the world:

I told you; you are withdrawing. You don’t participate anymore... So, you do this on an individual basis. (Josée)

The third existential theme among participants was finitude and death. When they turned to the future, thoughts about the remaining time of life and their own death emerged:

Concerns, I wouldn’t say. Clearly at 82 [years old] you say to yourself you don’t have twenty years left [laughs]. That’s certain, and so that is a concern. Clearly, I only have a few years left. (Gérard)

For some, it was necessary to become active to prepare for death, for example by getting their affairs in order:

Based on their suggestions also I am organising a plan of... there is a name for it... to organise my stuff. (Ursula)

When participants reflected on existential issues, present life and the future became a source of worry. The thought of loneliness and death triggered a reorientation of their thoughts towards past experiences, a source of pleasant memories. These thoughts were positive and tended to calm worries related to the current experience, thus fulfilling an adaptive function.

DISCUSSION

The aim of this study was to better understand the subjective and emotional experience of people with AD faced with the diagnosis of the disease and the consequences resulting from it. According to the meaning co-constructed between the researcher and the participants, announcing the diagnosis of MND-AD would trigger two types of reaction: shock or denial. This resulted in people with AD experiencing numerous emotions, such as sadness, anger, and a sense of helplessness. They reported feelings of misunderstanding regarding the communication at the time of diagnosis and during medical follow-ups, as well as the feeling of being judged. To adjust their shaken worldview, a dynamic and oscillatory process between connection and disconnection would take place ultimately allowing the individuals met to find a new way of being-in-the-world. This movement could be observed as much in connection with their world immediately around them, their relationships and interactions with others, and their relationship to the self. Existential questions then emerged on the themes of freedom, solitude, finitude, and death. The process demonstrates different individual coping strategies to allow each individual to find new meaning in their life thus modifying their way of being-in-the-world.

The results of the present study crystallize a dichotomy in the reaction to the diagnosis: shock and denial. MacQuarrie reported similar reactions in her research results with the same population that she described as acceptance and denial and that would coexist in a movement of acknowledgment and resistance [38]. For her, this movement is part of a tension between agency and objectification. The first notion refers to the autonomous individual who retains their independence and control over their life. The second describes the individual who experiences a loss of control, from which there is then a transition towards “becoming a patient” and dependency. The results of the present study show similarities to those observed by MacQuarrie. Participants maintained a sense of control over their lives when they could decide in a free and self-determined manner whether to share certain responsibilities with those around them (e.g., finances). Conversely, they felt deprived of this control when constraints were imposed on them (e.g., loss of driving license or the threat of a protection mandate to which they had to passively submit). This loss of control resulted in a decrease in their sense of independence and self-esteem, which they then tried to restore using their past accomplishments. Similar results are reported in another case study: agency and action create continuity in the social role and thus offer good QoL to the individual [56]. According to this author, empowerment of people with AD represents an important component to reducing stigma and improving the interventions offered, so they are more focused on the specific needs of each individual [54]. The present study, by allowing participants to express their needs and experiences, made it possible to observe that they regained a sense of control over their lives that reduced their distress.

Similarly, acknowledgement and resistance are experienced during a bereavement where the individual oscillates between the orientation towards the loss of the loved one and the reconstruction of their identity [57, 58]. These two orientations sometimes lead to confrontational behaviors towards what has been lost and at other times to the avoidance of different situations and places. Since the individual cannot live with confrontation and awareness of loss continuously, avoidance appears to be adaptive. According to these authors, even if no research has been conducted to confirm it, this mechanism could also be applied to other situations of bereavement, such as the announcement of an incurable and progressive disease [57]. The present study confirms this suggestion since the diagnosis of MND-AD forced participants to confront the loss of life they had experienced until now. The oscillation between confrontation and denial observed allows them to preserve a sense of self and their existence. At the time of diagnosis, participants experienced either shock or denial. The wish to remain in denial was also mentioned by one participant which would have allowed him to continue his life and possibly manage his emotions better. Since the interviews represent a picture of a single moment in the lives of the participants, it is possible to postulate that this movement between confrontation and denial was present in all participants. The results of the present study therefore seem to be consistent with this bereavement theory [57].

Even though only people with AD were interviewed in the present study, according to some other studies, the oscillation process experienced by participants appeared to have a different meaning from that experienced by older adults not living with dementia [28 , 60]. For all individuals regardless of age, autobiographical memory played a dynamic role in giving meaning to present and future life, particularly related to maintaining self-understanding [61]. This mechanism was also observed in the present study: to be able to make sense of their current lives, participants tended to escape to their past. Although present during normal aging, moments of reminiscence seemed to be very significant for the participants of this study. This could be partly explained by the evolution of the disease itself: episodic memory is preserved longer than semantic memory including projective memory [60 , 63]. In other words, memories of past life remain preserved longer while the encoding of recent events is quickly affected at the beginning of the disease. This causes frequent forgetfulness in people with AD (e.g., names, appointments, etc.) and difficulty planning for the future [60]. Although a progressive cognitive decline that affects recall and planning abilities occurs during normal aging, it is more pronounced in people with AD. A research team suggested that the ability to see oneself in the future would be better preserved during normal aging than in people with AD since abstract thinking would remain accessible [60]. As suggested recently by another research team, the experience of lived time seems to play a core role [31]. They argued that reminding the past allows people with dementia 1) to recall the effectiveness of their past coping strategies, and 2) to create continuity in their identity because they feel to have remained the same person. In the present study, this awareness of past experiences seems to have allowed participants to keep a connection with the world immediately around them, relationships and interactions with others and above all, the relationship to the self in the present. Furthermore, by visiting their past, they were able to modify their worldview to adjust it to their changing reality, thus giving a new meaning to their current life.

According to a recent meta-synthesis, the self-awareness by people with AD seems to be modified in all dimensions of time: past, present, and future [31]. Moreover, people with dementia appear to prioritize “being” over “doing” to maintain a sense of usefulness [64]. Thoughts that were part of a dynamic movement between the past and the present allowed our participants to follow a trajectory from their past value that was defined by “what they accomplished”, to a current usefulness that is more defined by “who they are”. However, the results of the present study show that the sense of usefulness would be maintained as much in the “doing” which was related to past achievements as in the “being” which indicated more the current understanding. These two opposing elements appeared as complementary in the worldview of the participants. Since they reported the need to maintain their independence while accepting a certain dependence on others, it is possible to qualify agency as a means of maintaining independence through “doing” [38, 64]. Conversely, objectification refers to depending on others where the individual would still have the opportunity to define themselves by who they are (“being”) in order to keep a sense of usefulness in their life thus offering them new meaning. In both cases, the individual was able to establish a sense of purpose and maintain a good self-image. According to these findings, all types of interventions (medical, psychological, social) for people with AD would be more focused on what the person “is” rather than what they know how to do, making it possible to rely on the remaining resources of each individual while providing them with a sense of usefulness and meaning to their existence.

Implications for practice

The results of the present study indicate that most participants considered themselves aggrieved by the healthcare system at some point during or after the diagnosis period. They deplored the lack of communication, information, and availability of the professionals in charge of their follow-up. At the time of diagnosis and during follow-up, participants would have appreciated it if professionals had been more transparent and provided them with more information about the disease. These perceptions appear to have triggered anger, worry, frustration and fear. However, participants may have forgotten their discussions with the health professionals, because of anosognosia or because of denial to suppress emergent unpleasant emotions [65]. Research findings suggest that people with AD who remember the diagnosis experience more intense emotions compared to those who control their memory [65]. These findings represent an opportunity to reflect on how we communicate with them. In line with these suggestions, findings reported in a systematic review highlighted that it is equally burden to disclose a diagnosis for healthcare providers than it is for people with AD and their caregivers to receive it [66]. What adjustments could be made to communicate effectively to allow a better understanding of the diagnosis and management of the emotions that accompany these difficult times? Communication strategies to promote well-being and a good QoL since announcing an AD diagnosis could include good timing, individual person-centered approach, and appropriate language [22]. They would help to reduce perceived harm, taking into account individual possibilities and desires to maintain their independence and strengths. We suggest helping the newly diagnosed person to accept her disease, while promoting the implementation of adaptive coping strategies. Further studies are needed to fully investigate ways to provide adequate communication adapted to the needs of each individual when announcing the diagnosis, but also during the following months. As the disease advances, cognitive abilities decline (self-criticism, insight, etc.), we believe that it would be necessary to communicate differently with individuals at the beginning of the disease compared to those with more advanced disease. Since the worldview is part of a dynamic concept that is constantly evolving to allow the individual to adjust their being-in-the-world, it is likely that these concepts will continue to change with the progression of the disease. For example, loss of autonomy and dependence on the people around them generally increase with the progression of the disease, thus modifying the individual’s sense of usefulness towards the importance of who they are (“being”) contrary to what they accomplish (“doing”) [64]. Communication focused on self-determination (e.g., about different decisions affecting them) and on conserved resources, would allow people with AD to maintain some control over their life thus improving their self-perception.

Strengths

Several studies have focused specifically on the continuity and maintenance of identity in people with AD [64 , 68]. The present study is different because it includes all the aspects that allow the individual to define their being-in-the-world (environment, relationships, self). The combination of an interaction between these three components allowed our participants to establish their worldview which would necessarily be subject to change with the diagnosis of MND-AD. As raised by Górska et al., the interaction of these different factors (i.e., environmental, interpersonal, and personal) would be complex; it would influence the individual’s perception and shape their ability to adapt [69]. It is understood that the present study is the only one to include these three aspects and examines the dynamic and oscillatory motion between connection and disconnection for each of them.

In addition, the use of IPA was a strength of this study. Although people with AD did not always seem to be able to make sense by their own of their actual experience, it was possible, using IPA, to co-construct it between the interviewer and the participant [46]. The way of leading in-depth exploration interviews of the lived experience made it possible for conduct to be adjusted to the specific needs of each participant [51].

In the present study, it was possible to take into consideration the voices of people with AD while 1) respecting the ethical issues related to the recruitment and consent of people, 2) being attentive to what participants say, and believing in its credibility and the meaning given to their beliefs, and 3) qualifying them as able to report their subjective experience and thus break social representations, struggle against stereotypes and a phenomenon of invisibility [51 , 54]. By giving a prominent place to participants’ subjective experiences that only they can provide, it was possible to give them back power and control over their lives and to shed a different light on the disease [54]. The interpretative part of the IPA allowed access to this information through an exploration of the emotional experience. Since the IPA is based on an idiographic approach, it was possible to access the unique view of the phenomenon for each participant. Instead of focusing on loss, disabilities and invalidity, the focus has been placed on their resources and how they access them. From this individual understanding adaptation of policies and interventions specific to the needs of the people with AD could emerge.

Experienced difficulties: Conducting research with people with AD

Recruitment. Recruiting people with AD meeting specific criteria (age, diagnosis of less than three months, etc.) proved challenging [70, 71]. In this study, several factors, like the reluctance of the person themselves and their relatives to engage in research, but also the proximity of the diagnosis (< 3 months) and the degree of commitment required, could have influenced recruitment [71, 72].

Conducting interviews. Cognitive weaknesses appear even at a mild stage of MND-AD, such as difficulty finding words, accessing abstract thinking, or concentrating over a long period of time [51]. In the present study, these difficulties were observed during the interviews. It was then necessary to reformulate the questions, to support the formulation of the answers through active and empathetic listening. When the participant felt confident, it was easier for them to express themselves about their individual and emotional experience [73]. Moments of reminiscence and not setting a specific length for the interview in advance were helpful in exploring the phenomenon [51].

Research limitations

This research was conducted with a community-dwelling Francophone population, recruited from one cognition clinic in Canada with a recent diagnosis of mild to moderate MND-AD. Thus, limiting the results obtained to the close period after diagnosis, and excluding people living in other environments. However, the choice of homogeneous criteria was made to allow an in-depth understanding of the phenomenon. The results reported are therefore limited to the selected sample, even if a large socio-demographic variation was obtained (Table 1). To obtain a broader understanding of the issues experienced by people with AD during their illness, other groups of individuals should be met using an in-depth-approach (e.g., different cultural and living environments). Besides, as reported in the previous section, it is possible that a difference will be found in the emotional experience lived according to the stage of disease progression.

In our study, participants were assessed by geriatricians at the cognition clinic. The assessment method was not unified, and we decided to rely on their clinical judgment. In order to solidify the method, it would have been interesting to add specific measures for memory abilities, such as an autobiographical memory assessment or a unified scale to measure cognitive decline.

Conclusion

Past life memories were important for the participants of this study. They leaned on their accomplishments to preserve their worldview and give meaning to their current lives. Recently, a research team concluded that reminiscence therapy would be effective for people with AD [74]. It could improve their cognitive functions, their functionality in everyday life and their QoL. Indeed, their mood would be more stable (i.e., a decrease in depressive symptoms), the emotions experienced more pleasant, and it would decrease the expression of behavioral and psychological symptoms of dementia. According to the results of this study and in our opinion, this therapy represents a promising avenue of intervention within the target population. Reminiscence-based interventions should be routinely used to allow people with AD to experience a good QoL while decreasing their emotional burden related to the announcement of the diagnosis and the progression of the disease. This would them allow, based on their past experiences to adapt to their new reality, including their understanding of the world immediately around them, their relationships, and interactions with others, and their self-definition. However, further research is needed to explore these avenues.

Finally, a better understanding of subjective experience of their disease by people with AD over time appears necessary to adapt interventions appropriately to their real needs, regardless of the progression of the disease. Further studies are needed to shed light on this issue, for example by conducting in-depth interviews with people with AD on several occasions during the course of the disease.

Notes

Participants have been assigned fictitious names for confidentiality reasons.

Quote excerpts have been corrected in form for ease of reading (e.g., removal of repetitions, hesitations, and oral markers). These stylistic changes have not altered the meaning of the participants’ comments.

AUTHOR CONTRIBUTIONS

Simone Gamm (Conceptualization; Data curation; Formal analysis; Funding acquisition; Investigation; Methodology; Project administration; Writing – original draft); Deborah Ummel (Conceptualization; Methodology; Supervision; Writing – original draft); Nancy Vasil (Resources; Writing – original draft); Sébastien Grenier (Conceptualization; Resources; Supervision; Writing – original draft).

Footnotes

ACKNOWLEDGMENTS

First of all, we would like to express a huge thank you to all participants for their involvement, openness, and authenticity; we were truly touched by your stories and experiences!

Furthermore, we thank Manon Fleurent and Dr. Nancy Vasil (IUGM) who facilitated the recruitment of participants. We would like to express our gratitude to Catherine Dupuis-Fortier and Lina Boyer for their involvement in interview transcripts.

FUNDING

This research was partially supported by the Advisory Committee for Clinical Research (CAREC), IUGM Research Centre under Grant # UA300287. The first author was supported by the Alzheimer Society Research Program (ASRP) Doctoral Award, Alzheimer Society of Canada under QoL Regular Grant #20-11.

CONFLICT OF INTEREST

The authors have no conflict of interest to report.

DATA AVAILABILITY

The data supporting the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

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