Struggling for existence-Life situation experiences of older persons with mental disorders.

Abstract

Older persons with mental disorders represent a vulnerable group of people with extensive and complex needs. The older population is rapidly increasing worldwide and, as a result of deinstitutionalization in mental health care, older persons are remaining at home to a greater extent. Although they constitute a large proportion of the population, older persons with mental disorders have been neglected in research as well as in care organizations. As there is little previous knowledge concerning older persons' experiences of their own situations, this study aimed to illuminate the meaning of the life situation as experienced by older persons with mental disorders (excluding dementia disorders). Interviews were conducted with seven older persons and the text was analyzed using a phenomenological hermeneutical research method, inspired by the philosophy of Paul Ricoeur. "Struggling for existence" emerged as a main theme in the older persons' narratives, understood as a loss of dignity of identity and involving being troubled and powerless as well as yearning for respect. The older persons fought to master their existence and to be seen for who they are. The study highlights the importance for caregivers, both formal and informal, to avoid focusing on the diagnoses and rather acknowledge the older persons and their lifeworld, be present in the relation and help them rebuild their dignity of identity. This study brings a new understanding about older persons with mental disorders that may help reduce stigma and contribute to planning future mental health care.

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EMPIRICAL STUDIES
Struggling for existence*Life situation experiences of older persons
with mental disorders
GUNILLA MARTINSSON, PhD student1,2, INGEGERD FAGERBERG, Professor1,3,
CHRISTINA LINDHOLM, PhD4, & LENA WIKLUND-GUSTIN, PhD2,5
1Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden,2School of Health,
Care and Social Welfare, Ma ¨lardalen University, Va ¨stera ˚s, Sweden,3Department of Health Care Sciences, Ersta Sko ¨ndal
University College, Stockholm, Sweden,4Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden,
and5Faculty of Health and Society, Narvik University College, Narvik, Norway
Abstract
Older persons with mental disorders represent a vulnerable group of people with extensive and complex needs. The older
population is rapidly increasing worldwide and, as a result of deinstitutionalization in mental health care, older persons are
remaining at home to a greater extent. Although they constitute a large proportion of the population, older persons with
mental disorders have been neglected in research as well as in care organizations. As there is little previous knowledge
concerning older persons’ experiences of their own situations, this study aimed to illuminate the meaning of the life situation
as experienced by older persons with mental disorders (excluding dementia disorders). Interviews were conducted with
seven older persons and the text was analyzed using a phenomenological hermeneutical research method, inspired by the
philosophy of Paul Ricoeur. ‘‘Struggling for existence’’ emerged as a main theme in the older persons’ narratives,
understood as a loss of dignity of identity and involving being troubled and powerless as well as yearning for respect.
The older persons fought to master their existence and to be seen for who they are. The study highlights the importance
for caregivers, both formal and informal, to avoid focusing on the diagnoses and rather acknowledge the older persons and
their lifeworld, be present in the relation and help them rebuild their dignity of identity. This study brings a new
understanding about older persons with mental disorders that may help reduce stigma and contribute to planning future
mental health care.
Key words: Aged, gerontology, mental disorders, municipal care of the old, phenomenological hermeneutics, psychiatry
(Accepted: 9 May 2012; Published: 7 June 2012)
Older persons constitute an increasing propor-
tion of the world population and are affected by
mental (Martinsson, Wiklund-Gustin, Fagerberg, &
Lindholm, 2011; Meesters et al., 2012; Prina, Ferri,
Guerra, Brayne, & Prince, 2011; Wada et al., 2011)
and/or physical disorders (Garcia-Garcia et al.,
2011; Lin, Zhang, Leung, & Clark, 2011) to a
high extent; the prevalence of such disorders
will likely increase in the aging population. As a
direct result of the push for deinstitutionalization,
initiated in Sweden in the 1990s with psychiatric
care reform (National Board of Health and Welfare
[NBHW], 1999), a larger proportion of persons with
mental disorders, defined as psychotic, anxiety and
affective disorders, are living in their own homes
with support from the municipal home help services,
psychiatry or both. The home is regarded as
important to both younger and older persons with
mental disorders as it is closely linked to their sense
of security and safety (Granerud & Severinsson,
2003),andolderpersons
a wish to remain in their own homes (Ryan,
McCann, & McKenna, 2009). However, older
persons with mental disorders often have very
specific needs involving both physical and mental
aspects (Krach & Yang, 1992). As the size of this
demographic increases, so will the proportion of
older persons living in their own homes with com-
plex disorders and in need of adequate care and
assistance.
frequentlyexpress
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Correspondence: G. Martinsson, School of Health, Care and Social Welfare, Ma ¨lardalen University, PO Box 883, S-72123 Va ¨stera ˚s, Sweden. Tel: ?46 (0) 21-
103147. Fax: ?46 (0) 21-101633. E-mail: gunilla.martinsson@mdh.se
Int J Qualitative Stud Health Well-being
#2012 G. Martinsson et al. This is an Open Access article distributed under the terms of the Creative Commons Attribution-Noncommercial 3.0
Unported License (http://creativecommons.org/licenses/by-nc/3.0/), permitting all non-commercial use, distribution, and reproduction in any medium,
provided the original work is properly cited.
Citation: Int J Qualitative Stud Health Well-being 2012, 7: 18422 - http://dx.doi.org/10.3402/qhw.v7i0.18422
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Previous studies on older persons with mental
disorders have focused on the experiences of either
professional (Hassall & Gill, 2008; Martinsson,
Wiklund-Gustin, Lindholm, & Fagerberg, 2011) or
informal caregivers in providing care (Chang &
Horrocks, 2006; Tryssenaar, Tremblay, Handy, &
Kochanoff, 2002). Young or middle-aged persons
with mental disorders frequently participate in re-
search focused on their subjective needs (Middelboe
et al., 2001), their experience of their own daily lives
(Erdner, Magnusson, Nystro ¨m, & Lu ¨tzen, 2005),
and of their integration in the community (Granerud
& Severinsson, 2006). However, although constitut-
ing a large part of the community, older persons with
mental disorders have been neglected in research
(Moyle & Evans, 2007) as well as social services and
health care (NBHW, 2012). The extent and quality
of municipal home help services for older persons
with mental disorders has been described as inade-
quate; for example, older persons suffering from
depression receive very little home help service
(Larsson, Thorslund, & Forsell, 2004) and those
with severe deficiencies are the most dissatisfied with
the care and services they receive (NBHW, 2011).
This indicates that older persons with mental dis-
orders are not currently receiving adequate care and
support.
In order to further elucidate the present situation
for older persons with mental disorders and help fill
the knowledge gap concerning this demographic, it
is important to explore their life situation from their
perspective. By deepening the understanding of how
older persons with mental disorders experience their
own life situations, we may help develop a new
understanding about this vulnerable and neglected
group of people. Furthermore, such new knowledge
may serve to reduce associated stigma and form
the basis for much needed discussions on the
changes in care and health care provision for older
persons with mental disorders that are necessary in
order to meet the challenges ahead.
Aim
This study aimed to illuminate the meaning of the
life situation as experienced by older persons with
mental disorders (age]70) living at home and
receiving assistance from home help service and/or
psychiatry.
Methods
The study used a lifeworld approach in order to
explore older persons’ experiences of their life
situation while suffering from mental disorders and
living at home. The lifeworld is our basic reality and
the world that shows itself to our consciousness. The
lifeworld approach reduces the distance between
science and daily life and provides an opportunity
to develop new knowledge through understanding
(Dahlberg, Dahlberg, & Nystro ¨m, 2008). To under-
stand what shows itself to our consciousness
(phenomenology) it has to be interpreted (herme-
neutics), that is, there is no understanding without
explanation. Therefore, to increase the understand-
ing of older persons’ being in the world and to
describe the phenomenon the present study used
phenomenological hermeneutics for the analysis
(Lindseth & Norberg, 2004).
Setting and participants
One urban and four rural districts in Sweden formed
the geographical basis of this study. Invitations
for participation were forwarded to the caregivers
of older persons fulfilling the inclusion criteria
(outlined below) by the heads of four psychiatric
wards specialized in psychotic disorders. Potential
participants were approached by the caregivers
with whom they had the most regularly contact.
The caregivers then either returned the willingness
to participate to the interviewer, including a set date
and time for the interview, or provided a phone
number by which the interviewer could directly
contact the potential participants. The interviewer
contacted all persons that had provided phone
numbers and more thoroughly explained the study.
Allpotential participants
opportunity to ask further questions or to decline
participation.
The sampling was convenient and seven older
persons, two men and five women, agreed to
participate. The inclusion criteria of this study
were as follows: aged 70 years and older; currently
receiving treatment or under examination for, men-
tal disorders by primary health care or psychiatric
care; current or previous contact with home help
services, caregivers in primary health care or
psychiatric care; not subjected to compulsory in-
stitutional care; not diagnosed with a dementia
disorder; and able to communicate in Swedish. All
participants were living in their own homes and
receiving support from the municipal home help
services and/or psychiatry. Their ages ranged from
71 to 75 years at the time the interviews were
conducted, with a mean age of 72.6 years. All
informants were diagnosed with (or under investiga-
tion for) schizophrenia, schizotypal and delusional
disorders (F20?29 International Classification of
Diseases, version 10 (ICD-10)). Three of the older
persons included were also diagnosed with affective
disorders (F30?39 ICD-10).
were givenanother
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Data collection
Data was collected, October 2009 to March 2011,
via interviews with the seven older persons. All of the
older persons invited to participate accepted and
determined the time and place for the interview.
Three interviews were conducted at the psychiatric
outpatient wards with which the older persons were
familiar, and four interviews were conducted in the
older persons’ own homes. At the beginning of each
interview, the interviewer orally provided thorough
information about the purpose of the study and
voluntariness. Though they were given yet another
opportunity to decline participation, each of the
older persons agreed and their participation was
considered informed consent.
The older persons were asked to narrate daily
situations and various situations in which they had
encountered their caregivers. Clarifying questions,
such as ‘‘What do you mean by that?’’ or ‘‘Can you
tell me more about that?’’, were then asked to
encourage further narration. The interviews lasted
from 55 to 110 min and were transcribed verbatim
by the interviewer. In order to ensure confidenti-
ality, all personal information was replaced with
specific codes; the codes and transcripts were stored
in locked cabinets in different locations at the
university.
Analysis
In order to interpret the interview texts and illumi-
nate the meaning of the life situation as experienced
by older persons with mental disorders, a phenom-
enologicalhermeneutical
used, inspired by the philosophy of Paul Ricoeur
(Lindseth & Norberg, 2004). The analysis began
with naı ¨ve reading, progressed to explanatory struc-
tural analysis, and ended in a new understanding or
comprehension.
During the naı ¨ve reading phase, the whole text was
read in order to grasp a first understanding. After
verbalizing the naı ¨ve reading, the text was structu-
rally analyzed with the naı ¨ve reading in mind. The
text was then divided and represented by meaning
units, which were condensed by thorough analysis
(see Table I). The condensed meaning units were
analyzed and compared with respect to differences
andsimilarities, and
to sub-themes, themes and then one main theme.
In relation to the naı ¨ve reading, the sub-themes,
themes and main theme were reflected on to make
sure the naı ¨ve reading was validated. Finally, the
naı ¨ve reading, structural analysis, relevant literature
and the authors’ pre-understandings were brought
together to develop a new understanding about being
in the world as an older person with mental disorders.
research method was
subsequently abstracted
Ethical review
Interviewing vulnerable older persons stricken by
severe disorders may pose a threat to their integrity.
By narrating situations from their daily lives as well
as from their encounters with the caregivers, they
may be sensitized to their physical and mental state;
this could consequently evoke detrimental, some-
times destructive, thoughts and feelings. In order to
alleviate the older person’s mind and/or prevent
destructive thoughts from unfolding, the interviews
all concluded with off the record conversations in
which the participants were able to express their
thoughts about what the interview involved. The
older persons were then also encouraged to talk to
their caregivers whenever they felt it necessary.
Additionally, all participants were scheduled ap-
pointments with their caregivers, either with psy-
chiatry or municipal home help service, shortly after
the interviews.
The caregivers were informed about the study
in advance, and read the inquiry of participation
together with the older person at the next regular
appointment and remained available for questions
and/or referral to the persons conducting the study.
The caregivers were informed about the risks
associated with the interviews and were encouraged
to be observant for any changes in the individual
needs of the older persons. The participants were
informed about the voluntariness and the fact that
declining participation would in no way impact the
care they receive.
Although there are several ethical challenges
involved in interviewing older persons with severe
mental disorders, it is important to note that the
participants may simultaneously benefit from the
interviews (Wiklund-Gustin, 2010). For instance,
the interviews gave them the time necessary to
verbalize their thoughts and provided the opportu-
nity to be heard and listened to while discussing their
situation with someone outside their daily life.
Importantly, it may have provided some clarity for
the older persons by raising their awareness about
the good things in life, as well as knowing that one
can make a difference, contribute something sig-
nificant, and over the long term affect the care of
others. This study was revised and approved by the
regional ethics board (Dnr 2008/345).
Findings
Naı ¨ve reading
To be an older person with mental disorders meant to
be alone, both socially (no close friends) and men-
tally (alone within). One was typically encumbered
with thoughts concerning why the disorders had
Life situation experiences of older persons with mental disorders
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developed, what to do and which potential resources
were available. One was dejected, troubled and saw
life as being without meaning; this was further
reinforced by a continuous listlessness and help-
lessness. Worries about the stigma and restrictions
associated with a mental disorder diagnosis resulted
in a fear of being labeled. One was weak and
decrepit, and aware of the own mental and physical
changes.
The own home provided a sense of security and
the freedom to act according to the own will,
whereas contact with others left one feeling mis-
understood, cheated and helpless, and generally
excluded from conversations. One was at mercy of
others; powerlessly watching while others controlled
one’s life. The need for advice and knowledge was
immense as one attempted to understand the causes
leading up to the present situation. Furthermore,
being limited to the own knowledge and not able to
profit from the knowledge of others was frustrating.
Needing and asking for help evoked a troubled
conscience; although not wanting to trouble others,
one longed for the help needed as well as the
security, companionship and attention such help
entails.
Structural analysis
The main theme ‘‘Struggling for existence’’ emerged
from the structural analysis. It constituted three
themes: Being vulnerable, Being powerless, and Want-
ing to be respected as a person, as well as the 13
sub-themes, listed in Table II. The main theme and
the three themes are described in the following
sections.
Struggling for existence
The struggle for existence represented a struggle
against futility, decrepitude and invisibility. Various
difficult questions arose; for instance, why is a
life entailing only meaninglessness worth continue
Table I. Examples from the structural analysis of meaning units and their corresponding condensation.
Meaning unitsCondensation
Interviewer (I): How would it be if, you said that you haven’t figured her
[caregiver] out yet, what would be better if you figured her out?
Interview person (IP): To talk as I did with the two previous ones.
I: Can you tell me about that?
IP: You know, from the heart and such, tell her how I feel and, but she rarely
answers ... She doesn’t come to any conclusions. No, she just listens, but you
want some advice and so from her ... No ... It doesn’t result, no ... Yes well,
it is how it is.
I would like to get advice from my
caregiver but she just listens.
I: Did you get an offer on meeting someone else when your current caregiver
retires?
IP: No I haven’t.
I: How does that feel?
IP: It was a disappointment because I was thinking that they would say that if I
wanted to continue I could meet with, for example. Ehm ... it was sort of and
maybe because I didn’t get that offer I sort of took the decision myself that I
well, ok then it is over then, but I’m not sure that it would be over if I got an
offer to continue, but now I don’t want to say to them that I want to continue
and then get a no. No.
I: What do you think about that?
IP: I think I will get a no and that I don’t want to, but then I rather, rather take
the decision myself than letting someone else take it for me and say no to me.
I don’t want to ask for more help and
risk getting a no, I prefer to make my
own decisions.
IP: Well, I can’t go out on my own, not without a girl from the home help service.
And I am supposed to have 1?2 h of social activity in the afternoon, so that
they can go out with me or we can go and shop for example.
I: So you have 1?2 h scheduled?
IP: That’s the schedule. So it ... But, you know, being able to go out for yourself
when you feel like it. It’s hard just sitting inside. So it is.
It feels hard and lonely to not be able
to go out alone without being referred
to the caregivers.
I: What is hard then?
IP: You feel alone ... It is a bit lonely. Not being able to, you see, don’t have
anybody and not being able to visit them. My sister, she lives here, and I can’t
go there because then I need one of the home help service personnel with
me ... and ...
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living? Though aware of the fatalistic prospect of life,
one seeks sanity, security and safety. The manage-
ment of daily life was under the jurisdiction of
others, which resulted in being deprived of the
possibility of being one’s true self. Although ex-
cluded from decision-making, one longed for the
help necessary to take an active role in managing the
own life and to facilitate the recognition of the own
existence. To not disappear from the mercy of others
one submits oneself to them taking charge of one’s
own life. The struggle for existence involves being
vulnerable and powerless, yearning for respect while
simultaneously dreading to bother family, friends or
caregivers. Although being discouraged by the fear of
being labeled, one opposes oneself to the categoriza-
tion supplied by others in order to maintain one’s
dignity. Struggling for existence meant wanting and
trying to obtain respect and help in order to facilitate
the mastering of the own existence.
Being vulnerable
Being vulnerable meant being restrained by fear:
fear of being excluded, of bothering others, of being
negligible and labeled. Labeling diminished the
sense of self and restricted the opportunity to be
oneself; in effect, such labeling implied being less
worthy,despised,alienated
retreated in order to avoid bothering others and
the risk of losing the access to help. Being inferior to
andforlorn. One
others meant not deserving to take space or be
heard.
... Maybe I’ve been helped for so long that I have
to be satisfied. [Crying] [...] I don’t dare ask for
anything else. [...] If I ask for something more
they [caregivers] might think, it might be, you
know, convenient for them not to make an effort.
If they were to fill the space that I myself am
not aware of, then they have to make an effort and
I am afraid that they won’t. It feels like a minor
accusation against them, and that is why you take
it on yourself instead of demanding things from
others and so, you know, it is just that common
sense that ‘‘Now you have to be satisfied!’’. Little
me. Ya. So, I guess I have to ...
Lacking mental strength entails lack of physical
strength and vice versa. This lead to a vicious circle
in which one is enfeebled and dejected, lacking the
will to live and struggling with destructive thoughts.
Being vulnerable meant being alone and powerless
against a constant deterioration.
Being powerless
Being powerless meant being in the power of others
and left in uncertainty. Despite a strong desire to
have answers to the various questions that had been
raised, such answers were left untold. In order to
resolve situations and understand the effects of
certain disorders, one tried to access the knowledge
of others.
... I am not embarrassed to be labeled as a
madcap but, hell! I have been trying to get
a new mental exam, but to, or at the same time
get access to the first mental exam I went through.
I don’t even know where I should search for it.
I was recommended by the psychiatry that I
search for it myself, well, how many should I
call? You know, it was a man, he tested, the only
thing I remember of the test was that he, we sat
around a table and he had a paper and pen. ‘‘Draw
a tree and sign your name’’, he said, and then I did
that. That’s all I remember. I would like to know
more. [...] Those were the previous theories but
now, I know of at least five different mental exams.
[...] I would like to know how mad I am, if the
first test was right or completely wrong, or, I don’t
know, I was, yes ...
Conversations among caregivers and family mem-
bers are generally held without regarding the will,
interest or ambitions of oneself. Being denied access
to the knowledge of others was frustrating and one
Table II. Structural analysis. Sub-themes, themes and main
theme that emerged from the narratives of the older persons.
Sub-themes ThemesMain theme
Being feeble
Fearing not being able
to be oneself
Being alone and
isolated
Stepping back
Being dejected
Being
vulnerable
Struggling
for existence
Being in the power of
others
Being left in a state of
uncertainty
Being
powerless
Being dependent on
others
Needing help
Searching for one’s
sanctuary
Shielding one’s sanity
Wanting
companionship
Being able to be
oneself
Wanting to
be respected
as a person
Life situation experiences of older persons with mental disorders
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must be self-sufficient in order to maintain sanity.
Paradoxically, one must also rely on others for
adequate care and decision-making; without the
help of the caregivers one is left alone, isolated and
resigned.
Wanting to be respected as a person
Wanting to be respected as a person meant to both
want and ask for help in coping with life and
facilitating the ability to be oneself. One was aware
of the own needs and held on to the help of others
for maintaining the sense of being human.
... I would, well I’ve tried to explain to them [care
personnel] that I, I feel, I feel, that I don’t feel
well. I feel restless and anxious and I would like
some peace of mind but I can’t get to it. I would
like help to find that peace. Because I, I don’t feel,
I don’t know what it is but I feel overall dis-
contented and not, well, at ease. I am not at ease
and I cannot be my own master and say that I am
at ease. No, there is frequent disturbance in my
way of thinking and I don’t get any peace. [...]
Perhaps you can’t find your peace but I am
searching for it. I don’t want to give up on it ...
Desiring respect for oneself meant yearning to be a
part of something bigger, be confident and safe, and
to be seen as an equal human being. When shielding
the own sanity one attempted to decrease worries
about the future and to maintain the hope that life
will improve with time. To be a part of something, to
contribute and be seen as a human being made life
easier as one strived to avoid being disparaged,
diminished or forgotten. Wanting to be respected
as a person meant to build strategies for oneself and
to try to finalize things that needed to be done in
order to cope with the challenges of daily life.
Comprehensive understanding and reflections
The life situation of older persons with mental
disorders involved struggling for existence. Although
the older persons tried to protect their sense of self,
they were often defeated by the lack of self-respect
and the subjectively experienced views and attitudes
of others.
This struggle for existence may be further under-
stood with respect to Nordenfelt’s philosophy con-
cerning dignity of identity (Nordenfelt, 2004).
Dignity can be understood as a state characterized
by balancing willfulness and obedience (Aristotle,
1952). It entails value, respect and is grounded
within the subject (Nordenfelt, 2004). Although
the concept of dignity has been challenged and its
relevance is under debate (Gallagher, 2011), it is a
very prominent feature in policies for old age care
and legislation; for instance, the National Social
Services Act in Sweden states that older persons
should be able to live a dignified life (SFS, 2011).
Dignity of identity is inextricably linked to the older
person’s body, mind and self-image and is affected
by the changes within oneself as well as the acts of
other persons in close proximity (Nordenfelt, 2004).
Dignity of identity is particularly relevant for older
persons with mental disorders; they are subjected
to both the natural processes of aging and severe
mental disorders. Maintaining dignity of identity
thus becomes an important aim for both the older
persons and their caregivers.
A previous study suggested that the loss of dignity
of identity is not primarily due to the changes within
oneself, such as being struck by disorders, but rather
that dignity is lost as a consequence of the cultural
stigma surrounding the disorders (Edgar, 2004).
This is supported by the findings of the present
study, in which dignity of identity of older persons
with mental disorders was not necessarily diminished
by the disorders themselves, but rather by the
anticipated prejudice of the people nearby. Worthi-
ness, an aspect of dignity, was shown to be strongly
associated with how a person was viewed by others
(Statman, 2000). The struggle for existence involved
fear of being stigmatized and labeled; in fact, the
label in itself entailed both demotion (less worthy)
and restrictions (denied the opportunity to be
oneself). The objectification of older persons can
violate their dignity; interestingly, this can arise from
either the caregiver’s attitude or the older person’s
own perception of themselves as non-existent and
mere objects in the eyes of caregivers (Moody, 1998).
In line with the Aristotelian works on friendship,
Ricoeur suggested that we are all dependent of one
another; self-esteem and friendship exist in a dialec-
tic state in which one must first befriend others in
order to befriend oneself (Ricoeur, 1992). The older
persons experienced objectification and being equa-
ted to their disorder; they were not permitted to
participate in conversations and experienced an
existential vulnerability. Although the older persons
of the present study suffered from different disor-
ders, the findings are in agreement with research on
older women with depression demonstrating the
tendency of the women to resign as a result of
their own self-pity and firm conviction that their
caregivers depreciated them (Allan & Dixon, 2009).
An older person’s personal belief that they lack
dignity and worth in the eyes of others can intensify
their existential vulnerability. However, degradation
by others could also help contribute to the inability
to appreciate oneself. Previous studies have shown
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that older persons with mental disorders are sub-
jected to stigma and discrimination (Carlos, Levav,
Jacobsson, & Rutz, 2003) and that humiliation
impairs one’s self-esteem, thereby reducing the
ability to appreciate oneself and the own life
(Edgar, 2004). Consequently, the older persons
may be defeated in their struggle to be acknowl-
edged, as the acts of surrounding people can hinder
their achievement of a higher self-esteem and self-
respect. The struggle for existence involved the
desire for recognition, respect and the opportunity
to understand and participate in decision-making;
this suggests that relational aspects of care were very
important to the older persons. This finding is
supported by a previous study indicating that in
order for older persons to experience their care as
positive, they must feel appreciated and acknowl-
edged for who they are, contribute to decision-
making and maintain their relationships (Bridges,
Flatley, & Meyer, 2010).
Research on younger persons with mental disor-
ders showed that they had the knowledge but lacked
the initiative to improve their lives (Erdner, Nystro ¨m,
Severinsson, & Lu ¨tzen, 2002); in contrast, the older
persons tried to shield their sanity and find their
sanctuary. In their desire to be respected as indivi-
duals, older persons with mental disorders developed
strategies to cope with daily life, maintain their sanity
and exist as equal human beings. However, the
subjective deterioration facing the older persons
gave rise to a fatalistic view of life. The lack of
autonomy over the own life entailed loss of dignity
of identity and older persons often were dejected
and experienced a meaninglessness and powerless-
ness that could impair the will to live. This finding
is in accordance to a previous study showing that
loss of dignity is connected to feeling ashamed or
degraded, and subsequently decreases the will to
live (Chochinov et al., 2002). Importantly, the
actions of caregivers and relatives can result in a
diminished self-image and self-respect among older
persons. A previous study demonstrated that older
persons depend on the behavior of caregivers to feel
healthy (From, Johansson, & Athlin, 2007); there
is no evidence to indicate that this differs for older
persons with mental disorders. Consequently, to
facilitate the maintenance of dignity of identity and
thereby increase the will to live, the older persons
need to be acknowledged and respected.
In addition to suffering from mental disorders,
the older persons faced the natural degenerative
processes of aging. In his philosophy, Ricoeur
described the personal identity as dynamic and
changing with the inner dialectic of the personality
(Ricoeur, 1992). The combination of mental dis-
orders and aging may increase the experience of
a changing identity, thus rendering dignity of iden-
tity more fragile and easily shattered. Wainwright
and Gallagher (2008) argued that if the notion of
dignity of identity is affected by changes in identity,
induced either by the actions of others or one’s own
self-image, all persons will eventually lose their
dignity as a consequence of the natural process of
aging. This study, however, implicitly suggests that
dignity of identity among older persons with mental
disorders can be retained provided that they are
recognized as equal human beings, as opposed to
labeled with their diagnoses, and that their identity,
integrity and wisdom are respected.
Methodological considerations
To reach as many older persons as possible, sev-
eral different organizations in municipal home
help services and psychiatry were contacted. Gate-
keeping, defined as caregivers preventing access
to eligible patients (Sharkey, Savulescu, Aranda, &
Schofield, 2010), was a major hurdle during the
recruitment phase of this study; consequently only
seven older men and women participated. Gate-
keeping occurred at different levels within these
organizations, most notably by the older persons’
closest caregivers. Whether the caregivers’ primary
objective was to protect the older persons or rather
themselves remains unclear and calls for further
studies. In line with the lifeworld perspective in
which the quality of the sample depend more on
variation and richness than exact numbers of parti-
cipants (Dahlberg et al., 2008), it was concluded
that the participants’ narratives in this study offered
enough depth to be included in the analysis. As the
older persons narrated different situations, positive
as well as negative, were both men and women and
lived in different municipalities, the phenomenon
has been allowed to vary to the extent possible and
thus the generalizability increases. However, with the
specificity of the phenomenon, generalizations to
others than older persons with mental disorders
must be made with consideration.
This study provides one interpretation of the text;
other interpretations are also possible (Ricoeur,
1976). A philosophy on dignity of identity was
determined to be appropriate for deepening the
understanding of the text, following the evaluation
of various philosophies and theories. The chosen
philosophy was fruitful for the study and congruent
with the aim and theory of science behind the
method and design. The new, deeper under-
standing that emerged from this study contributes
to theongoing discourse
persons with mental disorders, by highlighting the
importance of acknowledging the older persons and
concerningolder
Life situation experiences of older persons with mental disorders
Citation: Int J Qualitative Stud Health Well-being 2012; 7: 18422 - http://dx.doi.org/10.3402/qhw.v7i0.18422
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Page 8

their existence. Although pre-understanding consti-
tutes an important aspect of the analysis bracketing
pre-understanding is never fully feasible. How-
ever, the authors discussed various aspects of
pre-understanding and minimized the impact of
prejudice and assumptions. Objectivity was main-
tained during the entire research process by being
open for the phenomenon. Objectivity implies allow-
ing the phenomenon to appear through the assump-
tions and thoughts held in relation to it (Dahlberg
et al., 2008). The first author has been responsible
for data collection, analysis and manuscript prepara-
tion. However, all four authors have been involved in
the entire research process and the findings were
thoroughly scrutinized and discussed amongst all
authors until consensus was reached. The authors’
different experience and knowledge background
contributed to trustworthiness.
Implications
The findings suggest that caregivers, both formal
and informal, must acknowledge the lifeworld of
older persons and help preserve their dignity of
identity. By intruding on integrity and autonomy,
regardless of the original intention, caregivers can
alter the identity of older persons and leave them
feeling alienated and less worthy. The loss of dignity
of identity among older persons with mental dis-
orders results in an increased need to be cared for as
an equal human being in need of assistance.
Research on younger persons with mental disor-
ders suggestedthat caregivers
sense of belonging in the community (Granerud &
Severinsson, 2006); the present study on older
persons supports this conclusion. At present, daily
activity centers and other organizations for persons
with mental disorders are generally open to persons
under the age of 65. Such discrimination, whether
intentional or not, prohibits older persons from
belonging to the community and consequently
places more responsibility on caregivers to reinforce
a sense of existential belonging. Such reinforcement
requires that caregivers focus on the awareness of
older persons and appreciate their experience and
worth in order to facilitate their active participation
in the relationship (Barker, 2000). Such proactive
measures on the part of caregivers help to rebuild
dignity of identity.
mustfostera
Conflict of interest and funding
No conflicts of interest. The Karolinska Institutet
Health Care Sciences Postgraduate School, the
School of Health, Care and Social Welfare at
Ma ¨lardalen University and the Ragnhild and Einar
Lundstro ¨m foundation granted financial support to
this study.
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