# Negative effects of institutionalization on the sense of self in Alzheimer's Disease

Mohamad El Haj, Karim Gallouj, Ahmed A Moustafa, Catherine Potard, Guillaume Chapelet

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Mohamad El Haj, Karim Gallouj, Ahmed A Moustafa, Catherine Potard, Guillaume Chapelet. Negative effects of institutionalization on the sense of self in Alzheimer's Disease. Geriatric Nursing, 2024, 59, pp.1 - 6. 10.1016/j.gerinurse.2024.06.049. hal-04773169

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## Featured Article

# Negative effects of institutionalization on the sense of self in Alzheimer's Disease

<figure><img src="image_2.png" /></figure>

Mohamad el Haj<sup>a,\*</sup>, Karim Gallouj<sup>b</sup>, Ahmed A Moustafa<sup>c,d</sup>, Catherine Potard<sup>e</sup>, Guillaume Chapelet<sup>a,f</sup>

## ARTICLE INFO

**Article history:**

Received 24 April 2024

Received in revised form 19 June 2024

Accepted 27 June 2024

Available online 6 July 2024

**Keywords:**

Alzheimer's Disease

Institutionalization

Self

## ABSTRACT

In this longitudinal study, we investigated the effects of institutionalization on the sense-of-self in individuals with Alzheimer's Disease (AD). We recruited two groups of participants: one living in care facilities (i.e., institutionalized-group) and another group living in their own home (i.e., non-institutionalized-group). In the two groups, we assessed the "Who-am-I" task on which participants were invited to provide statements beginning with the phrase "I am" that they felt were essential in defining who they are. We assessed this task, in the two groups, at a baseline (approximately one-month before-institutionalization) and at a follow-up (approximately six months after institutionalization). We analyzed whether responses on the "Who-am-I" task reflected physical-, social-, or psychological-self. Unlike at the baseline, fewer statements describing physical-, social-, and psychological-self were observed in the institutionalization than in the non-institutionalized group at the follow up. These findings demonstrate negative effects of institutionalization on the sense of self in AD.

© 2024 The Author(s). Published by Elsevier Inc. This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/)

## Introduction

The institutionalization of individuals with Alzheimer's Disease (AD) has been associated with negative effects such as decreased perceived quality of life ¹⁻⁴ and increased cognitive decline.⁵,⁶ The institutionalization of individuals with AD has also been associated with loneliness³,⁷⁻¹⁰ and mental health symptoms,¹ especially depression.¹,²,¹¹,¹² Considering these effects, we investigated the effects of institutionalization on the sense of self in individuals with AD. This aim was based not only on the above-mentioned research demonstrating negative effects of institutionalization on cognitive and well-being in AD, but also on research demonstrating negative effects of AD on the sense of self.¹³⁻¹⁶

The self can be widely defined as a set of mental processes that provide us with feelings of individuality, unity, and coherence that

define our uniqueness.¹⁷,¹⁸ These feelings are negatively affected by AD.¹³⁻¹⁶ In a seminal study on the sense of self in AD, Addis and Tippett¹⁹ invited individuals with mild AD to provide responses to the question "Who am I" and to rate statements describing personal, social and physical traits. Results demonstrated significant impairments in all these tasks, suggesting a weakened sense of self in AD. Similar findings have been observed in studies reporting low production of statements describing the self (i.e., statements in response to the question "Who am I") in individuals with mild AD.²⁰,²¹ In similar vein, Ruby, Collette, D'Argembeau, Peters, Degueldre, Balteau, Luxen, Maquet and Salmon²² invited individuals with mild AD to rate themselves on a list of 40 adjectives and found decreased self-judgment accuracy in individuals with AD. The weakened sense of self in AD has also been reported in studies of self-defining memories, which are vivid and include emotionally intense memories that help maintain self-consistency and self-coherence.²³⁻²⁷ One study evaluated self-defining memories by asking individuals with mild AD and healthy older adults to retrieve memories that help explain who they are.²⁸ The study reported few specific self-defining memories in individuals with AD. Similar findings were reported by a study

## Introduction

<footnote><sup>a</sup> CHU Nantes, Clinical Gerontology Department, Bd Jacques Monod, F44093, Nantes, France</footnote>

<footnote><sup>b</sup> Unité de Gériatrie, Centre Hospitalier de Tourcoing, Tourcoing, France</footnote>

<footnote><sup>c</sup> School of Psychology, Faculty of Society and Design, Bond University, Gold Coast, Queensland, Australia</footnote>

<footnote><sup>d</sup> Department of Human Anatomy and Physiology, the Faculty of Health Sciences, University of Johannesburg, South Africa</footnote>

<footnote><sup>e</sup> Laboratoire de Psychologie des Pays de la Loire, LPPL EA 4638, SFR Confluences, UNIV Angers, Nantes Université, Maison de la recherche Germaine Tillion, 5 bis Boulevard Lavoisier</footnote>

<footnote><sup>f</sup> Université de Nantes, Inserm, TENS, The Enteric Nervous System in Gut and Brain Diseases, IMAD, Nantes, France</footnote>

<footnote>*Correspondence author at: Faculté de Psychologie, LPPL – Laboratoire de Psychologie des Pays de la Loire, Université de Nantes, Chemin de la Censive du Tertre, BP 81227, 44312 Nantes Cedex 3, France.</footnote>

<footnote>E-mail address: mohamad.elhaj@univ-nantes.fr (M. el Haj).</footnote>
demonstrating low production of self-defining memories in individu-
als with mild AD.²⁹ In a similar vein, a study showed that self-
defining memories were less frequently tied to the self in AD.³⁰

The diminished sense of self in AD can be illustrated by the Auto-
biographical Memory in Alzheimer's Disease model (AMAD),³¹
according to which a compromise in autobiographical memory,
which is memory for personal experiences, plays a key role in the
diminished sense of self in the disease. More specifically, the AMAD
model suggests that the decline in the ability to retrieve specific auto-
biographical memories in AD leads to the de-contextualisation of
memories and a shift from reliving past events to a general sense of
familiarity. This autobiographical decline limits access to memories
that shape self-consciousness, self-knowledge, and self-image (e.g.,
self-defining memories), leading to a diminished sense of self and
identity. However, and while the diminished sense of self in AD can
be attributed to decline in autobiographical memory, individuals
with mild AD can be able to draw on their available emotional and
meaningful memories to maintain a continuous sense of self or even
to reflect on situations in which they are concerned about their self-
continuity.³² Regardless of the autobiographical account, the dimin-
ished sense of self in AD can also be attributed to difficulties with
updating self-knowledge in people with AD. For example, Klein et al.
(2003) asked a patient with AD to describe personality now and
before the onset of AD, and found that the current personality, as
described by the patient, reflected self-knowledge before the onset of
the disease. These findings reflect a loss of an updated representation
of the self in individuals with AD. According to several models, the
sense of self can be, to some extent, intact, due to unimpaired seman-
tic knowledge,³³ but outdated.³⁴,³⁵

While research has extensively evaluated the sense of self in peo-
ple with AD, there is, to the best of our knowledge, no published
study on the effects of institutionalization on the sense of self in AD.
This issue is important because, while there is a wealth of research
on the effect of institutionalization on cognitive and psychiatric func-
tion in AD, little attempt has been made to evaluate this effect on the
sense of self. The study of the effects of institutionalization on
the sense of self in AD would allow for understanding how placement in
nursing home may affect, in the long term, not only the general cog-
nitive and behavioral functioning of individuals with AD but, criti-
cally, their ability to cope with existential concerns. Finding a
negative effect of institutionalization on the sense of self in AD should
help with making decisions regarding institutionalization in the
future; alternatively, nursing homes, or any care facility, should tar-
get the sense of self as a core element of care.

In our attempt to evaluate the effect of institutionalization on the
sense of self in AD, we used the “Who am I” task as this task has been
widely used in research on the sense of self in AD.¹⁵,¹⁹⁻²¹,³⁶ This sim-
ple task allows not only quantitative evaluation (i.e., the number of
statements to the question “Who am I”) but also qualitative evalua-
tion of the self as “Who am I” statements can be analyzed regarding
three self-dimensions (i.e., the physical, the social, and the psycholog-
ical self). These categories, based on the initial description by William
James,³⁷ were proposed by Charlesworth, Allen, Havelka and Mou-
lin³⁸ who defined physical self as knowledge about attributes that
are related to one's own appearance (e.g., I am fat, I am tall, I am
bald), social self as knowledge about one's own social category (e.g., I
am a psychologist, I am a researcher, I am French), and psychological
self as knowledge about one's own personality traits (e.g., I am
decent, I am kind, I am helpful). In relation to AD, this distinction has
been tested in a cross-sectional study demonstrating how autobio-
graphical retrieval affects physical, social, and psychological selves of
people with AD.

To summarize, previous research has demonstrated negative
effects of institutionalization on the quality of life,¹⁻⁴ cognitive
function⁵,⁶ and psychological well-being in AD.¹ We, therefore,

investigated the effects of institutionalization on the sense of self in
AD. Specifically, we conducted a longitudinal study in two groups:
institutionalized participants vs. those who remained living at home.
In the two groups, we assessed three categories of the self (i.e., physi-
cal, social, and psychological self) with the “Who am I” task. In the
institutionalized group, this task was assessed at a baseline (approxi-
mately one month before institutionalization) and at a follow-up
(approximately six months after institutionalization). In the non-
institutionalized participants, we assessed the “Who am I” task at
baseline and after about six months. We expected a lower quantity
and quality of the “Who am I” statements in the institutionalized
compared with the non- institutionalized participants. This hypothe-
sis was based on the research demonstrating negative effect of insti-
tutionalization on cognitive and psychiatric function and psychiatric
function in AD.¹,⁵,⁶

Method

Participants

The study included two groups: 26 institutionalized (16 women and 10 men; M age = 71.73 years, SD = 6.18; M years of formal education = 9.12, SD = 2.70) and 26 non-institutionalized individuals with AD (15 women and 11 men; M age = 70.19 years, SD = 3.99; M years of formal education = 8.81, SD = 2.30). All participants had a clinical diagnosis of probable mild AD and diagnosis was made by an experienced neurologist or geriatrician based on criteria of the National Institute on Aging-Alzheimer's Association.³⁹ All participants were native French speakers. They freely consented to participate in this study and were given the opportunity to withdraw whenever they wished. There were no significant differences between the two groups in terms of gender [X² (1, N = 52) = .08, p = .77], age [t(50) = 1.07, p = .29], or years of formal education [t(50) = .44, p = .66].

Procedures

The institutionalized and non-institutionalized groups were
assessed the “Who am I” task at a baseline and at a six-months fol-
low-up. Regarding the institutionalized participants, the baseline
occurred nearly one month (M = 31 days, SD = 2.59) before nursing
homes admission. To recruit these participants, we contacted local
and regional nursing homes and attended the pre-admission inter-
view with participants, which occurred at the individuals' homes one
month prior to admission and assessed the “who am I” task during
this baseline. At follow-up, we further assessed this task again
with the same participants, but this time at retirement homes
(M = 178.32 days, SD = 6.51). Regarding the non-institutionalized par-
ticipants, they lived at home all along the study and they were
assessed the “who am I” task during a baseline, defined as the
moment when they provided consent to participate, and at the fol-
low-up (M = 177.11 days, SD = 5.32). These participants were
recruited through local clinics and community centers specializing in
elder care and AD support. Recruitment involved contacting potential
participants through these centers and ensuring they met the inclu-
sion criteria. This process ensured that non-institutionalized partici-
pants had similar clinical profiles to those in the institutionalized
group.

Although there was a slight difference between the six-months
delay in the institutionalized group (M = 178.32 days, SD = 6.51) and
non-institutionalized group (M = 177.11 days, SD = 5.32), this differ-
ence was not significant [t(50) = .73, p = .47]. Another precaution
was that we matched the two groups regarding cognitive function-
ing. More specifically, we assessed each group at baseline and at
follow-up using the Mini Mental State Examination.⁴⁰ No significant
differences were observed between the institutionalized group
(M = 22.62 points/30, SD = 1.88) and non-institutionalized group (M = 23.08 points, SD = 1.55) on this test at the baseline [t(50) = .96, p = .34]. Furthermore, no significant differences were observed between the institutionalized group (M = 18.24 points/30, SD = 3.28) and non-institutionalized group (M = 18.81 points, SD = 3.76) on this test at follow-up [t(50) = .58, p = .56]. Therefore, we ensured that any potential differences in the sense of self between the groups would not be due to differences in cognitive ability.

Note that the sample size was defined as the maximum number of individuals with mild AD who could consent to participate as well as the maximum of individuals that could be handled within the logistics of the study design. The final sample size of the institutionalized group (n = 26) was obtained after several exclusions at follow-up, eight individuals did not wish to continue the study (mostly due to health problems), four individuals changed retirement homes and were drop out to exclude potential effect of this change, four individuals presented significant cognitive decline, especially aphasia, preventing the “Who am I?” assessment. Regarding the non-institutionalized group, the final sample size (n = 26) was also obtained after several exclusions at the follow-ups, five individuals did not wish to continue the study (most for health problems), two individuals presented significant cognitive decline, especially aphasia, preventing the “Who am I?” assessment, two individuals were no more living at their homes and were drop out to exclude potential effect of this change. We also excluded three individuals who performed two standard deviations above the mean of their group on the Mini Mental State Examination, to avoid significant differences regarding general cognitive performances between the institutionalized group and non-institutionalized group. Regardless of this precaution, it should be noted that we only included individuals with mild AD because those with moderate to advanced AD may demonstrate dramatic cognitive decline at the follow-up assessment, making it impossible to assess the “Who am I” task.

### The “Who am I” task

As mentioned above, the “Who am I” task was assessed in the institutionalized and non-institutionalized groups at baseline and follow-up. We replicated the procedures of previous research using this task in individuals with AD.<sup>19-21</sup> More specifically, we invited participants to produce 20 verbal statements to the question “Who am I?”. We instructed participants that they had to provide very short statements beginning with the phrase “I am” that they felt were essential in defining who they are. We explained that responses should reflect stable and enduring aspects of identity and that these aspects might include roles, personality, or physical traits. Participants were given one minute, and the duration was made explicit from the outset so that they could plan accordingly.

Responses were categorized according to three categories: physical, social and psychological self. In line with previous research,<sup>21,41</sup> statements were considered as reflecting physical self if they described attributes that were apparent from physical appearance (e.g., I am beautiful, I am thin, I am sick, I am old, I am alive), social if they described a social attribute or role (e.g., I am grandfather, I am grandmother, I am a good neighbor, I am married, I am a volunteer), and psychological if they described a personality trait (e.g., I am confident, I am friendly, I am honest, I am helpful, I am faithful, I am sincere, I am curios), or an emotional state (e.g., I am happy, I am joyful, I am calm, I am sad, I am anxious, I am nervous). In line with the recommendations of Rhee, Uleman, Lee and Roman,<sup>42</sup> statements describing two self-dimensions were analyzed in terms of the principal unit. For instance, the statement “I am a good father” was attributed to social self as the unit (“a father”) is the principal unit of meaning, rather than the evaluation (“good”). When responses contained several closely related meanings (e.g., “I am happy and joyful”), only the first meaning was coded. Repeated statements and

those not beginning with “I am” were excluded (e.g., some participants answered, “I like to be honest”, an answer that was not included). Vague descriptions were also excluded (e.g., “I will be in good shape”).

Data were coded by two independent judges (who are not co-authors of this study) and a post-coding comparison revealed 91 % agreement between the judges. Cases of disagreement were discussed until a consensus was reached. The score referred to the total number of statements, as well as the number of those that were attributed to each self-category.

### Statistical analysis

We compared differences on the production of “Who am I?” statements as related to the three categories of self (i.e., physical, social, and psychological self) between the institutionalized group and non-institutionalized group at baseline and follow-up. Because data were not distributed normally as observed by Kolmogorov-Smirnov tests, non-parametric tests were used. Results are provided with effect size: d = .2 can be considered a small effect size, d = .5 represents a medium effect size and d = .8 refers to a large effect size.<sup>43</sup> Effect size was calculated for non-parametric tests following the recommendations by Rosenthal and DiMatteo,<sup>44</sup> and Ellis.<sup>45</sup> In all tests, the level of significance was set at p ≤ .05, p values between .051 and .10 were considered as trends, if any.

### Results

#### Between groups comparisons

Scores on the “Who am I” task are shown by group in Table 1. At the baseline, Mann-Whitney U tests showed no significant differences between the institutionalized group (M = 2.14, SD = .55) and non-institutionalized group (M = 2.22, SD = .69) on the mean number of statements (Z = .30, p = .77, Cohen's d = .08), regardless of the self-category. However, and relative to the non-institutionalized group (M = 2.08, SD = .70), the institutionalized group generated lower mean number of statements at follow-up (M = 1.28, SD = .69) (Z = 3.43, p = .001, Cohen's d = 1.08), regardless of the self-category. Regardless of the baseline/follow-up assessment or the self-category, the institutionalized group generated lower mean number of statements (M = 1.71, SD = .41) compared with the non-institutionalized group (M = 2.14, SD = .52) (Z = 3.06, p = .002, Cohen's d = .94).

Regarding the baseline, Mann-Whitney U tests showed no significant differences between the institutionalized group and non-institutionalized group on statements describing physical-self (Z = .33, p = .74, Cohen's d = .09), social-self (Z = .58, p = .56, Cohen's d = .16), or psychological-self (Z = .15, p = .88, Cohen's d = .04). Regarding the follow-up, lower statements describing physical-self (Z = 2.22, p = .026, Cohen's d = .64), social-self (Z = 2.41, p = .016, Cohen's d = .71), and

<caption>**Table 1**</caption>

Number of statements produced during the “Who am I” in the institutionalized group and non-institutionalized group at the baseline and follow-up.

<table><thead><tr><th></th><th></th><th>Institutionalized group</th><th>Non- Institutionalized group</th></tr></thead><tbody><tr><td rowspan="3">Baseline</td><td>Physical self</td><td>1.31 (1.05) <sup>n/s</sup></td><td>1.50 (1.14)</td></tr><tr><td>Social self</td><td>2.31 (.79) <sup>n/s</sup></td><td>2.42 (1.27)</td></tr><tr><td>Psychological self</td><td>2.69 (1.29) <sup>n/s</sup></td><td>2.73 (1.48)</td></tr><tr><td rowspan="3">Follow-up</td><td>Physical self</td><td>.69 (.68)*</td><td>1.35 (1.09)</td></tr><tr><td>Social self</td><td>1.46 (1.14)*</td><td>2.35 (1.44)</td></tr><tr><td>Psychological self</td><td>1.69 (1.16)*</td><td>2.54 (1.46)</td></tr></tbody></table>

Note. Standard deviations are given between brackets; differences between groups were significant at: *p < .05; n/s differences were non-significant.
psychological-self (Z = 2.33, p = .020, Cohen's d = .68) were observed in the institutionalized group than in the non-institutionalized group.

### Within groups comparisons

Friedman tests revealed significant differences between the production of physical, social- and psychological self statements at the baseline in the institutionalized group [$X^2$ (2, N = 26) = 9.26, p = .010, Cohen's d = 1.49] and non-institutionalized group [$X^2$ (2, N = 26) = 7.90, p = .019, Cohen's d = 1.32]. Wilcoxon signed rank tests revealed fewer physical-self statements than social-self statements in the institutionalized group (Z = -2.88, p = .004, Cohen's d = .70) and non-institutionalized group (Z = -2.76, p = .006, Cohen's d = .69), fewer physical-self statements than psychological-self statements in the institutionalized group (Z = -3.12, p = .002, Cohen's d = .73) and non-institutionalized group (Z = -2.78, p = .005, Cohen's d = .60), but similar numbers of social-self and psychological-self statements in the institutionalized group (Z = -1.59, p = .11, Cohen's d = .51) and non-institutionalized group (Z = -.84, p = .40, Cohen's d = .36). Regarding the follow-up assessment, Friedman tests revealed significant differences between the production of physical-, social-, and psychological-self statements in the institutionalized group [$X^2$ (2, N = 26) = 13.23, p = .001, Cohen's d = 2.03] and non-institutionalized group [$X^2$ (2, N = 26) = 12.02, p = .002, Cohen's d = 1.85]. Wilcoxon signed rank tests revealed fewer physical-self statements than social-self statements in the institutionalized group (Z = -3.08, p = .002, Cohen's d = .73) and non-institutionalized group (Z = -3.05, p = .002, Cohen's d = .73), fewer physical-self statements than psychological-self statements in the institutionalized group (Z = -3.04, p = .002, Cohen's d = .73) and non-institutionalized group (Z = -2.72, p = .007, Cohen's d = .68), but similar numbers of social-self and psychological-self statements in the institutionalized group (Z = -.57, p = .57, Cohen's d = .30) and non-institutionalized group (Z = -.31, p = .75, Cohen's d = .22).

In the institutionalized group, Wilcoxon signed rank tests revealed fewer physical-self statements (Z = -2.34, p = .019, Cohen's d = .63), social-self statements (Z = -3.03, p = .002, Cohen's d = .73) and psychological-self statements (Z = -2.34, p = .019, Cohen's d = .63) at the follow-up than at the baseline. In the non-institutionalized group, no significant differences were observed in follow-up and baseline regarding physical-self statements (Z = -.69, p = .49, Cohen's d = .33), social-self statements (Z = -.08, p = .93, Cohen's d = .11), or psychological-self statements (Z = -.73, p = .46, Cohen's d = .34).

## Discussion

This study investigated the effect of institutionalization on the sense of self in individuals with AD. To this aim, we compared the sense of self using the "Who am I" statements between institutionalized and non-institutionalized individuals with AD. Results demonstrated no significant differences on the "Who am I task" between the institutionalized and non-institutionalized group at the baseline but lower production of the "Who am I task" in the institutionalization than in the non-institutionalization group at the follow-up.

Our findings demonstrate a negative effect of institutionalization on the sense of self in people with AD. These findings can be compared with research demonstrating deleterious effects of institutionalization on perceived quality of life by individuals with AD,¹⁻⁴ cognitive function,⁵,⁶ and mental health.¹ Institutionalization has also been found to be associated with loneliness³,⁷⁻¹⁰ and depression in AD.¹,² For example, Nikmat, Hawthorne and Al-Mashoor³ evaluated physical function, quality of life, and social isolation in 30 institutionalized individuals and 19 non-institutionalized individuals. Results demonstrated higher physical function, quality of life and social connection in the institutionalized than in the non-institutionalized

individuals. While institutionalization may provide multidisciplinary care (physicians, psychologists, nurses, physiotherapists, nutritionists...) as well as optimal health support (exercise programs, dietary counseling...), it may also have negative effects on cognitive function and, as shown in our study, on the sense of self.

Several factors may contribute to the diminished sense of self in institutionalized individuals such as reduced social network, loneliness, or even depression as may be experienced in individuals with AD.³,⁷,⁸ For instance, due to reduced social network, institutionalized individuals may experience few opportunities to transmit their life story and, consequently, to reflect on the continuity of their self. Furthermore, institutionalization for individuals with AD may be associated with intensive care, significant decline, and, ultimately, with the concept of the end of life and discontinuity of the self. While these assumptions are plausible, empirical studies on the exact processes that may yield a reduced sense of self in institutionalized individuals with AD are needed. Nevertheless, our findings are relevant as they are the first to demonstrate the effects of institutionalization on the sense of self. These findings should be considered when a decision on institutionalization is taken by individuals, caregivers, and health professionals. Of course, the choice between staying at home and moving into a care institution is a complex decision for individuals with AD and caregivers, and most of individuals with AD would prefer to stay in their home.⁴⁶ However, institutionalization may increase life expectancy.⁴⁷ Institutionalization may also be necessary to manage significant health deterioration, significant cognitive decline (e.g., spatiotemporal disorientation) and/or psychiatric symptoms (e.g., hallucinations) as may be observed in moderate to advanced AD.

Given that institutionalization is sometimes unavoidable, it is crucial to develop strategies to mitigate its negative effects on the sense of self. Nursing homes and clinicians should consider implementing rehabilitation programs that specifically aim to enhance the sense of self. While there are few empirically validated programs addressing the sense of self, existing interventions such as reminiscence therapy, life story work, and social engagement activities show promise. Activities that encourage family visits, intergenerational programs, and community involvement could help maintain and even enhance the social and psychological selves of individuals with AD.

Our findings can be compared with research on the sense of self in AD. Research has demonstrated a reduced ability to retrieve memories that shape the sense of self (i.e., self-defining memories) in individuals with AD.²⁸,²⁹ One study has also shown that self-defining memories are less often tied to the self in AD.³⁰ These findings can be interpreted in light of the AMAD model,³¹ according to which a decline in the ability to retrieve specific autobiographical memories in AD limits access to memories that shape self-consciousness, self-knowledge, and self-image (e.g., self-defining memories), leading to a diminished sense of self and identity. A reduced sense of self in AD has also been reported in research demonstrating that, compared with individuals with mild AD, those with advanced AD tend to demonstrate difficulties to recognize themselves in the mirror.⁴⁸⁻⁵⁰ The diminished sense of self has also been reported in research showing difficulties of individuals with AD in updating their self-knowledge.³⁴,³⁵ Our findings add to this literature by demonstrating how institutionalization can lead to a limited sense of self in AD. As this literature has been mainly considered with cognitive processes that may yield the diminished sense of self in AD, our study adds to this literature by demonstrating, for the first time, how environmental changes (i.e., institutionalized) can also limit the sense of self in AD.

Another finding of our paper was that both institutionalized and non-institutionalized groups have produced fewer statements related to physical self than to social or psychological self at both baseline and follow-up. These findings replicate a previous study
demonstrating a relationship between autobiographical memory and the three categories of self in AD.²¹ These findings can be attributed to the negative effects of AD on the physical condition of individuals, resulting in few statements describing the physical self in individuals with AD. In other words, the low production of these statements may reflect the significantly decreased physical function, compared with the psychological or social function in AD. As shown in our study, the decreased sense of physical self is observed in both institutionalized and non-institutionalized individuals, and regardless of the assessment time (baseline vs. follow-up). In other words, compared with their images of social- or psychological-self, images of physical-self in individuals with AD, or even their perception of their physical condition in general, seem to be significantly worse.

While our study did not find significant differences between institutionalized and non-institutionalized individuals with AD in terms of gender, age, or years of formal education, it is crucial to consider other factors that could influence the living arrangements and daily experiences of the participants. For institutionalized participants, the activity and engagement models of the various long-term care facilities might vary significantly. These models can impact residents' daily routines, social interactions, and overall sense of self. Conversely, non-institutionalized individuals might retain a stronger sense of self due to greater autonomy and more frequent interactions with family. Future research should aim to include assessments of home safety, activities of daily living, and family support to understand their impact on the well-being and sense of self in individuals with AD. Also, while we focused on categorizing responses into physical, social, and psychological self, this approach may involve certain limitations, particularly in how it handles evaluative adjectives. For example, the statement "I am a good father" was categorized under the social self due to the primary unit of meaning being the social role (father), rather than the evaluation (good). This decision was made to maintain consistency with previous research methodologies and to ensure a clear and systematic categorization process. However, this approach might overlook the evaluative aspect of such statements, which can indeed change the meaning significantly. Evaluative adjectives like "good" or "bad" add an important layer of meaning that pertains to the individual's self-assessment and emotional state. However, the primary goal of our study was to categorize the fundamental aspects of self-identity, rather than to conduct a detailed qualitative analysis of the content. Despite this potential limitation, our current methodology provides a clear and replicable framework for categorizing self-descriptions, which is crucial for comparing across different groups and time points.

To summarize, while research has primarily focused on cognitive factors affecting the sense of self in individuals with AD, our study extends this body of research by demonstrating how environmental changes, specifically institutionalization, can also impact the sense of self. Critically, our findings underscore the need to consider these effects when making decisions about institutionalization and in the management and rehabilitation strategies within care institutions. Understanding the sense of self in individuals with AD and how it interacts with their environment can help develop personalized programs and activities that address their socio-psychological needs. Prioritizing activities that enhance social and psychological selves, such as family visits and intergenerational programs, should be a key component in supporting individuals with AD in nursing homes.

## Declaration of competing interest

The authors declare no conflict of interest

# CRediT authorship contribution statement

**Mohamad el Haj:** Supervision, Resources, Project administration, Methodology. **Karim Gallouj:** Validation, Supervision, Resources, Project administration. **Ahmed A Moustafa:** Writing – original draft. Validation, Resources. **Catherine Potard:** Writing – review & editing, Validation, Resources. **Guillaume Chapelet:** Writing – original draft, Validation, Supervision, Project administration, Conceptualization.

## Author contributions

Study design and conception: MEH and KG; Assessment: MEH; Supervision: GC, PA & KG; data analysis and interpretation: MEH, CP and AAM; manuscript drafting: MEH, KG, AAM, CP, and GC.

## Funding

Mohamad El Haj was supported by LABEX Distalz

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