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Physiotherapy Theory and Practice, 26(4):226–239, 2010Copyright & Informa HealthcareISSN: 0959-3985 print/1532-5040 onlineDOI: 10.3109/09593980903423012
QUALITATIVE RESEARCH REPORT
Physical activity and implications on well-being inmild Alzheimer’s disease: A qualitative case studyon two men with dementia and their spouses
Ylva Cedervall, PT, BSc1 and Anna Cristina Aberg, PT, PhD2
1Department of Public Health and Caring Sciences/Geriatrics, Uppsala University, Uppsala, Sweden2Senior Lecturer, The Swedish School of Sport and Health Sciences, Stockholm, Sweden
ABSTRACT
To improve the understanding of experiences of people with mild Alzheimer’s disease (AD) and their significant
others, related to the physical activity of the afflicted persons and its perceived importance. A qualitative case
study design was used. The study comprised two men with mild AD and their wives. Data were collected by
qualitative interviews and participant observations. Data analysis followed a thematic guideline as described
by Braun and Clarke (2006). Three central themes of experiences related to physical activity in AD were
identified: 1) physical activity as health reinforcement; 2) barriers to physical activity; and 3) adaptation stra-
tegies. Important motivations for outdoor walks were enjoyable experiences of nature, body movement, and
positive attitudes toward physical activity. Several factors were experienced as barriers to physical activity
(e.g., tiredness, difficulties in finding one’s way, and ‘‘peculiar behavior’’). Significant others made considerable
adjustments in everyday life to enable their partners to retain a physically active lifestyle. The findings indicate
that in persons with AD, physical activities such as outdoor walking can play an important part in everyday life
by creating meaningful routines and improving experienced well-being and health.
INTRODUCTION
People recently diagnosed with Alzheimer’s disease
(AD) have stated that their worst worry concern-
ing the diagnosis was fear of public embarrassment
and/or disgrace (Husband, 2000; Phinney, 1998).
Concerns about not being listened to and fear that
others would find out about the illness also charac-
terized their narrations. This resulted in withdrawal
from social activities and a restricted life space. Such
personal experiences confirm the finding by other
researchers of a reduction in physical performance
and in the habitual physical activity level in persons
with early AD compared with nondemented indivi-
duals (Burns et al, 2008).
There are several factors related to the AD
diagnosis that might affect a person’s ability to be
physically active. Memory dysfunction, lack of initia-
tive, and impaired executive function are common
early symptoms and can result in physical inactivity
(Diagnostic and Statistical Manual of Mental
Disorders: DSM-IV-TR, 2000; Goetz, 2007; SBU,
The Swedish Council on Technology Assessment in
Health Care, 2008). Many studies also have shown
that impairment of gait function can occur early in the
course of AD (Camicioli, Howieson, Lehman, and
Kaye, 1997; O’Keeffe et al, 1996; Pettersson, Engardt,
and Wahlund, 2002; Pettersson, Olsson, and
Wahlund, 2005; Sheridan, Solomont, Kowall, and
Hausdorff, 2003; Tsolaki et al, 2001).
The ability to be physically active in early stages of
AD can be impaired as a result both of neuro-
pathological dysfunctions and of psychological
reactions to the diagnosis. In addition, it may be
assumed that these factors will interact and the
afflicted person may become trapped in a vicious
Address correspondence to Ylva Cedervall, PT, BSc, Department of
Public Health and Caring Sciences/Geriatrics, Uppsala Science Park,
Uppsala University, 751 83 Uppsala, Sweden.
E-mail: [email protected]
Accepted for publication 4 March 2009.
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circle, leading to a gradual decline in the physical
activity level. Besides entailing a risk of general
deterioration in motor functions, too low a level of
physical activity may have psychological consequences
such as apathy and cognitive blunting. Furthermore,
limited social interaction, physical inactivity, and
motor impairments in people with AD can accelerate
the risk of dependence and health deterioration (Heyn,
Abreu, and Ottenbacher, 2004; Nelson et al, 2007;
Rolland et al, 2000; Teri et al, 2003).
In this context the concept of health can be
understood from different points of view. The World
Health Organization (WHO) has constructed a system
for clarifying and defining different aspects of health
(i.e., The International Classification of Functioning,
Disability and Health [ICF]) (WHO, 2001). This
classification describes health as a state of physical,
psychological, and social well-being and not only as
absence of illness or handicap. The term ‘‘well-being’’
is used in ICF as a general term including all human
aspects of life that represent a ‘‘good life.’’ In addition
to the definition in ICF, health can be defined as the
balance between a person’s capacity and his life goals
(Porn, 1993). According to the latter definition, a
person’s ability to adjust to an altered capacity can
influence his/her health. This implies that motor and
cognitive impairments do not necessarily result in
subjective deterioration of health.
In the general population health can be promoted
by regular physical activities (Hillman, Erickson, and
Kramer, 2008; Nelson et al, 2007; Pate et al, 1995).
It has been proposed that this is also true for
persons with cognitive impairments or dementia.
Positive effects of physical activity on such persons
have been reported, not only on physical functions but
also on cognitive functions, behavior, sleep, and mood
(Eggermont and Scherder, 2006; Heyn et al, 2004;
Teri et al, 2003; Williams and Tappen, 2007). Thus,
regular physical activity might be a valuable method
for improving the health of people with AD.
It is important to consider the positive effects of
physical activities in dementia in relation to the impact
of AD on the afflicted person’s ability and potential to
engage in such activities. It may be necessary for
persons with AD in early stages to have personal
support to maintain a physically active lifestyle (Burns
et al, 2008; Husband, 2000; Phinney, 1998). This
means that the responsibility for taking the initia-
tive to engage in regular physical activities may rest
on significant others, with a risk of increasing their
burden of care (Donaldson, Tarrier, and Burns, 1998;
Grafstrom and Winblad, 1995; Gruffydd and Randle,
2006). To our knowledge, however, no studies concern-
ing personal experiences related to physical activity in
AD have been published.
The purpose of the present study was to improve
the understanding of experiences of people with mild
AD and their significant others, regarding the afflicted
persons’ ability to be physically active, and to gain
insight into their perception of the importance of
physical activity in AD.
The study was approved by the Ethical Research
Committee of the Faculty of Medicine, Uppsala
University.
METHODS
Study design
A qualitative case study design was used. Data on the
subjects’ experiences were collected in the course of
qualitative interviews and through participant observa-
tions (Polit and Beck, 2008). All data collection was
carried out by the first author (YC), who is a physio-
therapist with extensive experience of geriatric rehabi-
litation, including assessment of motor disturbances in
people undergoing memory investigation. The thematic
analysis method described by Braun and Clarke (2006)
was used for analyzing and interpreting the data. Efforts
to ensure validity were made throughout the research
process. These measures are described in detail in both
the Methods and the Methodological considerations
and limitations sections.
Selection of participants
A diagnosis of mild AD was the main criterion for
inclusion in this study. In the early stage of AD,
cognitive impairments that interfere with daily activi-
ties are typical. In addition to memory dysfunction
a person with AD may for example have difficul-
ties with orientation, communication, initiating, and
planning (SBU, The Swedish Council on Technology
Assessment in Health Care, 2008). Testing by the use
of the Mini Mental State Examination (MMSE);
a cognitive screening test widely used in research and
clinical settings (Folstein, Folstein, and McHugh,
1975) gives an indication of the level of cognitive
function. The maximum score is 30 points, and a value
between 25 and 30 points suggests normal cognitive
capacity, whereas the lower limit for mild AD is
commonly set to MMSE520 points.
In addition to the main criterion, physicians at an
outpatient memory clinic in central Sweden considered
the following criteria for inclusion: Swedish speaking;
community-dwelling with a spouse; capable of indepen-
dent transfer according to the General Motor Function
Assessment Scale (GMF) (Aberg, Lindmark, and
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Lithell, 2003); no injuries or other illnesses apart from
AD that could affect the ability to ambulate; considered
to have relevant contributions to make regarding the
questions addressed in the study; and regarded as
capable of holding a conversation for at least half an
hour. Criteria for the spouse were the following:
Swedish speaking; considered to have relevant contri-
butions to make regarding the questions addressed
in the study; and regarded as capable of holding
a conversation for at least half an hour. On the basis of
these criteria the physicians suggested two community-
dwelling married men with mild AD for participation in
the study together with their spouses. These two couples
were subsequently invited (by YC) and they all agreed
to participate.
Data collection
The data collection lasted for about 1 month for each
couple and took place in the following sequence:
1) interview with the man with AD; 2) participant
observation of the man with AD; 3) interview with the
spouse; 4) interview with the man with AD; and
5) participant observation of the man with AD. There
was an interval of approximately 1 week between
each of the occasions. Each interview lasted for about
45–60 minutes and each participant observation lasted
45–120 minutes (Appendices A and B). The reason for
carrying out two interviews with each of the two men
with AD was to obtain a deeper understanding of their
experiences of the issue under study. The second
interview provided an opportunity to further elucidate
experiences described previously and to obtain clarifi-
cations. The participant observations were made on two
different days during different physical activities to
obtain the most detailed picture of the issue in question.
Interviews
Each interview was conducted at the subject’s home,
without the spouse being present. An interview guide
with open-ended questions was used (Appendix A).
The areas of questioning dealt with how the subjects
felt that the AD had influenced the men’s ability to be
physically active and the participants’ thoughts about
the importance of physical activity. The opening
question to the men with AD was: ‘‘What do you
think about your ability to move about and be
physically active now, compared with the time before
you had problems with your memory?’’ The wives, at
their interviews were asked: ‘‘What do you think about
your husband’s ability to move about and be physically
active compared with the time before he developed
memory problems?’’ At the interviews free narration
was encouraged, and the same areas were highlighted
on several occasions during the interviews to achieve
a deeper understanding. The interviews were tape-
recorded in their entirety and transcribed verbatim
(by YC).
Participant observations
The focus of the observations was to obtain a more
detailed picture of the experiences described at the
interviews. The observations took place in each man’s
home environment. An observation guide listing areas
to be observed was used (Appendix B). The men’s
ability to perform physical activities in everyday life
was observed, and suitable times were chosen in
agreement with the participants. The observations
were made during outdoor walks with and without the
wife being present, during time spent at a day care
center, when riding a bike to go shopping, at meal-
times, and at teatime. The participants initiated the
physical activities during the observations, and efforts
were made to maintain a personal, yet expectant
attitude, to not influence the situation more than
necessary. During the participant observations field
notes were taken, and these were summarized imme-
diately afterward, resulting in a written text that
described the observed event in a concrete manner.
Data analysis
The use of multiple triangulation in data collection, inclu-
ding method-, time-, space-, and person-triangulation,
enabled a thick description and provided a basis for
establishing validity (Polit and Beck, 2008). The data,
consisting of written material from the six interviews and
the four participant observations, were analyzed accord-
ing to the thematic analysis guideline described by Braun
and Clarke (2006). Data analysis was carried out in
conjunction with the data collection, enabling new angles
of approach to be identified and allowing any unclear or
indistinct questions to be probed further. The thematic
analysis involved repeated reading of the material to
obtain an overall picture of the data. Important features
of the data were coded into potential themes and were
checked in relation to the coded extract and the data set.
This stage in the analytic process was followed by a
preliminary definition of themes and subthemes based on
analyses and interpretations of the entire data set. In an
effort to establish credibility, repeated peer debriefings
were held between the two authors to explore various
aspects of the information obtained. Analysis, interpre-
tations, and preliminary definitions of themes were
discussed and refined in an ongoing process during the
analytic procedure (Polit and Beck, 2008). The analysis
was performed both on a descriptive level and from a
more comprehensive perspective, seeking patterns and
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models that could explain the statements and observa-
tions. Themes and subthemes relevant to the aim of the
study were eventually confirmed. Finally, findings in the
present study were considered in relation to theoretical
perspectives and compared with results from other
studies to obtain a comprehensive insight. This under-
standing is described in the discussion section.
Participants
The two couples are presented in the context of their
everyday lives with focus on physical activities.
Assumed names are used in the presentation.
Couple 1: Anders and Anna
Anders was 74 years old and had been married to Anna
for 40 years. They had two children and two grand-
children. During his childhood and youth, Anders had
spent a great deal of time outdoors with his parents. He
had never engaged in any competitive team sport, but
he had played tennis with friends. When their children
were young, the family used to spend winter holidays in
the Swedish mountains and often went skiing. As a
couple, Anders and Anna had also been physically
active during their leisure time by taking regular walks
in the countryside. Anders retired from his work as a
business manager at the age of 65. His wife, who had
worked as a civil servant, retired at the same time. Up to
the age of about 70, Anders was healthy and fit, but
then he started to notice memory failure and was
diagnosed with AD 1 year later at the age of 72. He and
his wife Anna lived in a modern flat in the central part
of a Swedish town with a population of about 150,000.
Three times a week he participated in day care activities
organized by the community. He enjoyed these activi-
ties, which included quizzes, seated exercises, reading
aloud from newspapers, and socializing with the other
participants and staff. Anders walked on his own to
and from the day care center, a distance of about
2 kilometers in each direction. In addition he took
regular walks with his wife. When tested with the
MMSE, Anders scored 21 out of 30 points.
Couple 2: Erik and Eva
Erik was 63 years old and had been married to Eva for
about 10 years. They had no children. Erik grew up in
the country and as a child he spent quite a lot of time
in the countryside, playing with his friends. As a young
boy he also played football, not in a team, but just for
fun. As an adult he had not been physically active
regularly, but from time to time had exercised in the
form of jogging and dancing. He had also participated
in occasional bicycle runs but had not been engaged
in any competitive sport. Erik had worked as a civil
servant in the chemical industry until 4 years pre-
viously. He retired prematurely after a period of sick
leave because of memory problems. He was diagnosed
with AD at the age of 61. At the time of the current
study, Eva still worked as a nurse. Erik and Eva lived
in a terrace house in a suburb of a Swedish town with
a population of about 150,000. There were beautiful
surroundings, with forests and meadows nearby. Erik’s
physical activities consisted mainly of daily walks with
the family dog. He also went shopping locally on his
bicycle and drove his car when necessary to do
errands. When tested with the MMSE, Erik scored
22 out of 30 points.
FINDINGS
Three themes that describe experiences related to the
ability to be physically active in AD, and the perceived
importance of such activities, emerged from the study
(Figure 1): 1) physical activity as health reinforcement;
2) barriers to physical activity; and 3) adaptation
strategies. Important motivations for physical activity
(i.e., for outdoor walks) were enjoyment experienced
Tiredness
Physical activity ashealth reinforcement
Barriers to physicalactivity
Difficulties infinding the way
Peculiarbehavior
Alteredwalkingability
Adaptatationstrategies
Practical strategies andaltered habits
Mentalstrategies
FIGURE 1 Three themes and subthemes describing experiences related to the ability to be physically active and the perceived
importance of such activity in two men with mild Alzheimer’s disease and their spouses.
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from nature, body movement and positive attitudes
toward physical activity. Several factors were experi-
enced as barriers to physical activity (e.g., tiredness,
difficulties in finding the way, and ‘‘peculiar behavior’’).
In the following account of the findings, each theme
with its subthemes is presented. When required,
clarifications by the authors are inserted in brackets.
To elucidate the similarities and differences between
the experiences of the two men with AD and those
of their wives, the findings regarding each theme
are presented in conjunction between the men and
their wives.
Physical activity as health reinforcement
This theme reflected the way in which the participants
experienced physical activity, beyond the basic activ-
ities of daily life, and their feelings related to these
experiences. It also reflected the motives of the men for
being physically active and those of their spouses for
supporting them. Both men with AD appeared
enthusiastic about this aspect of their lives and
expressed positive feelings about being out in the
forest and fields. They also showed positive attitudes
toward physical activity in general. Erik said:
I run up hills and I enjoy it. I also feel good
walking, I really do. You look everywhere and
realize that nature changes, and other things
like that.
During the interviews and participant observations
Anders talked about how much he enjoyed the walks to
the day care center. He said:
It’s probably a bit far to go to the day care
center, but I like it. It makes the walking
orderlyyWhen you walk long distances the
goal is clear. Then there are no problems.
Ander’s feelings of well-being when walking long
distances were confirmed during the participant
observation to the day care center. During this walk
he took long steps and moved freely.
Field note:
You get the impression that he really enjoys
walking. He often remarks that it’s a lovely
day. He looks alert and radiates joy.
A considerable difference from this was noted when
Anders walked with his wife along streets with lots of
people and the route was not decided in advance. On
these occasions, he walked rather slowly and somewhat
hesitantly. This was also the case when he walked
indoors in their apartment.
Both wives talked about the ways they had noticed
that their husbands benefited from physical activity.
Eva said:
He feels much better when he’s out in the woods
walking. He is calmer afterwards. I can see that
he is content. He says that he feels alive. It’s
good for him. He enjoys walking.
Anna expressed her opinions as follows:
All people benefit from walking. yWe
walk, we still do at least once a day because
that is really the only thing Anders enjoys
nowadays.
Anders confirmed his wife’s remarks and spoke of
the importance of open-air activities in general as a
motivation for staying physically active on a regular
basis. He talked about many delightful experiences of
outdoor life throughout his childhood and adult years
and explained his feelings as follows:
It must be hereditary in some way. It’s sort of
automatic. On a beautiful winter day you take
the opportunity. You really want to get out in
the open air. That is the motiveyYou can say
that physical activity is a necessary ingredient
in life.
Erik was able to initiate and carry out many of his
daily routines. He said that he felt good taking walks in
the woods, and expressed positive attitudes toward
physical activity. The relationship with his dog and his
concern about its well-being also seemed to be an
important reason for his daily walks. His wife also
stated that the dog’s needs were important for Erik.
Erik said:
It’s mostly because we have a dog. She (the
dog) needs to get out, but I like it too. Going
out by yourself is not much fun. With a dog
something is happening all the timey. I think
it’s better to move about than to sit and look at
the walls. I think that makes you passive.
Field note:
Erik is happy, walks fast and laughs a lot.
He puts the dog on the leash and chats with her
all the time. On several occasions there have
to be certain rituals with the dog. He lets the
dog go along a path and takes another path
himself. He whispers to me that the dog is
going to stop at a certain place and look for
him, and this happens. Later we get to a hill,
Erik is laughing and gets the dog to rush uphill
with him. He tells me that the dog will get fitter
that way.
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Barriers to physical activity
During the interviews, both Anna and Eva talked
about how the AD diagnosis had changed and
complicated their husbands’ ability to be physically
active and through this the daily life of the two couples.
Anders and Erik also said that they had noticed some
of these impacts of the illness, but they did not appear
to dwell on them to the same extent as their spouses.
In addition, the two wives stated that it was hard for
them to understand and cope with changes in their
husbands, such as tiredness, difficulty in finding the
way and, in their opinion, ‘‘peculiar behavior.’’
Tiredness
The two men and their spouses were in agreement that
the men had been more tired since becoming ill.
Anders needed more sleep, including an afternoon
nap. He said:
When I get home now I am much more tired
than I used to be. I like to lie down then and
sleep for a while. It has become necessary since
this mess (the AD diagnosis) began.
Anna referred to her experiences of her husband’s
tiredness and said:
So, when he is at home I think that he more or
less always just lies in bed and I find that very
hard to watch.
Erik described his experience as a diffuse feeling of
being ‘‘tired in the head’’:
I find the mornings hard in some ways. I am
kind of tired. I have noticed that I am not quite
clear in my head in the morning, but it dis-
appears. ySometimes I also have a headache
in a strange kind of way; I am tired inside my
head.
Eva also described how Erik’s sleeping habits had
changed:
He is always more tired in the mornings. He
goes to bed very early in the evenings and he
sleeps very late in the mornings.
Difficulties in finding the way
A contradictory picture emerged when the wives
described their feelings and experiences of their
husbands’ problems in finding the way. On the one
hand, both Anna and Eva talked about the difficulties
they found that their husbands had in deciding which
turn to take when they were out walking. They also
told about incidents when their husbands had been
gone for hours and were found only after the police
had been notified. On the other hand, both men took
outdoor walks on their own almost daily.
Anders said that he was a little insecure when taking
a walk on his own, although he made the long walk
without company to the day care center and back
home three times a week. He said:
It’s not advisable nowadays to let me take
walks on my own.
It was notable that during the participant observa-
tion of Anders walking to the day care center, no such
insecurity was evident. The route led through city
blocks, over open green spaces, parking lots, and
streets crowded with traffic. During the walk, Anders
explained that he had learned the way some years ago
and thus had no difficulty in finding his way. He did
not worry about getting lost during these walks.
Field note:
He shows me the way he usually walks and we
start walking. He carefully looks out for cars at
crossings and reminds me to be careful. In the
blocks near the day care center there are houses
being restored, and it is therefore difficult to
pass on the pavement. He suggests that we cross
the street. Anders does not seem to be disturbed
by this altered route, and he continues in full
control on his way to the day care center.
Erik said that he was good at finding his way. He
could not remember being lost, except once when he
had taken a ‘‘wrong turn.’’ He considered this situation
to have been accidental:
I go out walking in the woods and all goes well.
I recognize every piece of wood on the track that
I follow. I have never lost my way there. y
But once I got a bit lost, though it turned out
okay too. I took a taxi.
Eva described Erik’s ability to orientate himself in a
different way. She talked about his difficulties in
knowing which way to choose, but she did not
mention any worries about Erik’s long daily walks on
his own. She said:
It’s finding the way that is most difficult for
him. The spatial part. He doesn’t know where
we are heading when we are out somewhere. He
can go in any direction.
The first participant observation on Erik was made
in connection with one of his long daily walks. We
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walked for about an hour and took the route that Erik
usually took with his dog at least once a day. At one
place, Erik spontaneously pointed out a path and said
that he had once ‘‘got a bit lost’’ there. He said that he
very quickly realised it and explained how he had
walked to get on the right path again. He spoke of this
in a matter-of-fact manner, and there was no
indication that he worried that it might happen again.
Field note:
Our walk does not follow a simple route, but we
walk on both wide and narrow paths, over
meadows and in the woods. Erik walks briskly
all the time and does not hesitate when choosing
which path to take.
Peculiar behavior
Both Eva and Anna talked about behaviors of their
husbands that they thought were unusual and that had
begun after the AD diagnosis. Anna mentioned several
situations in which her husband had behaved in a way
that she considered peculiar and incomprehensible.
She described this as follows:
One thing is very strange. If, for instance, I put
the vacuum cleaner in the middle of the floor,
he doesn’t see it if he doesn’t expect it to be
there. The other day a stool was in the middle of
the floor, and he walked straight into it. I don’t
know why he does things like that. He can walk
straight into a lamppost, for example. He did so
the other day and his vision is perfect! It seems
as if he is totally occupied with just walking. As
if he cannot absorb information from the sur-
roundings. I don’t know. I think he behaves
strangely. I don’t understand it.
Anders also talked about some remarkable events,
but did not express any explicit worry:
Sometimes when I am walking, especially when
I am going round a corner and have to turn my
whole body, then suddenly I can find myself
completely out in the periphery.
Eva reported how Erik had changed his behavior in
many ways and performed daily activities differently
than he had done earlier. She talked about her feelings
as follows:
The worst thing is his restlessness. He clears the
table before we have eatenyHe is often in the
way. It is as if he has no idea of where he should
be. He can put things in the middle of the
doorway too.
Altered walking ability
Neither Eva nor Erik thought that Erik’s ability to walk
had declined since he became ill. This was confirmed
during the participant observations, where a picture
emerged of a man who had no difficulties in walking
briskly, running uphill, or riding his bike. Anna, on the
other hand, described Anders’s walking abilities as
having deteriorated in many ways. Anders’s own
picture of his walking ability was in accordance with
that reported by his wife and was partly confirmed
during the observations. Anders said:
My balance is not very good, sometimes I
stagger a little. I also fall sometimes. There is a
constant deterioration. Never the other way.
My whole mechanism is affected.
Adaptation strategies
The findings indicate that adaptive measures had
permeated the lives of the two wives since their
husbands had become affected by AD. They fre-
quently talked about changes in daily routines in
attempts to enable their husbands to fill their days with
meaningful activities, such as regular outdoor walks.
The adaptation strategies were practical, as well as
mental. The two wives also described how emotionally
difficult it was for them to observe and cope with
changes in their husbands’ abilities and behaviors.
Practical strategies and altered habits
Anders spoke about the different ways in which he
tried to make up for his difficulties in being physically
active. He described the strategy he used during his
outdoor walks:
I lose energy but then I have learnt to slow
down my pace and sort of start again.
Anna’s life had changed considerably since her
husband fell ill with AD, as she had to initiate all
activities for Anders. Moreover, because of his
impaired balance and difficulties in finding his way
she had to use practical strategies to make it possible
for Anders to be physically active. She said:
If I have no time to go out, if I have booked the
laundry-room, he goes by himself, but he just
takes a walk close to home. We have agreed
that half an hour is okay.
Erik did not experience any difficulties with his
balance or fitness. But he mentioned how he tried to
use regular routines to structure his days. He used
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almost the same routines day after day. He liked that,
and did not seem to find the routines boring:
Well, you have your routines and they are fun!
Erik took long daily walks, and apart from enjoying
the positive experiences of outdoor life and the
interaction with his dog, he mentioned that he used
these walks strategically to counteract his morning
fatigue. He also said that he did not know what else he
would do if he did not take the dog for a walk.
After an incident when Erik got lost for several
hours on a cold winter day, he and his wife developed
strategies for keeping in touch. Both mentioned that
they felt safe when they kept in touch by using their
cell phones. During the participant observations, Erik
contacted his wife by cell phone on several occasions to
tell her where he was and what he was going to do, etc.
It appeared as if the cell phones made the couple feel
secure when Erik went for long daily walks on his own.
Erik stated:
Then I have my cell phone. It gives me security
if anything should happen. I could hurt myself
or something. Eva leaves her phone switched on
all the time, so that we can get in touch with
each other.
Erik used to drive his car for doing errands, but
because of his illness he and his wife had decided that
he should restrict his driving. Eva said:
He drives the car, but always on the same
route. We try to play it safe.
Mental strategies
A common attitude of both the men and their wives
was to take life as it came and not to worry in advance.
Possible future problems and difficulties would have to
be dealt with when they arose. Anna described this by
saying:
I take things day by day, I know that he is
getting worse. It’s a one-way street.
Anders’s humble attitude, saying that he was still
fortunate despite his severe illness and forced changes,
became evident in his description:
I have no pain. That is good. I think this is an
incredibly gentle way to end one’s life...But
I miss tennis. I have to have something to do and
I fill my day. But this happens automatically
because you can’t lie down and sleep forever.
Erik expressed no negative thoughts or feelings
about being forced to change his life. His attitude
seemed to be that he was content with his life as
it was:
You mustn’t complain too much. I suppose
I have all I want.y I have not planned to stop
taking walks—not yet anyhow. One just has to
see what happens. What I mean is that there is
no need to worry in advance.
Eva described how she tried not to notice changes
due to the illness:
I suppress a lot, tend not to notice things.
I don’t want to see.
She also believed that Erik suppressed difficulties
caused by the disease, but speculated that he had to do
so in order to feel good. In line with this, Erik
remarked:
I don’t like driving into town. It is chaotic to
drive there. And I have nothing to do there.
However, it was evident that the wives had made
adjustments in their daily lives to try to make life
meaningful for their husbands now that they had
developed AD. Sometimes they both appeared to find
this difficult and frustrating. For example, Eva said:
Sometimes when I think he is in my way I put
my hands on him and move him. You might
think that knowing he is ill would make it easier
to resist the temptation to point things out to him,
but it is not easy when you have to live with it.
Anna also talked about frustrations:
It takes an incredible amount of time to adjust to
his illness. I don’t always have time to go out
walking with him both in the mornings and in
the afternoons, just walk. But I do, and he comes
alongyI am not anxious that he might fall. It
wouldn’t work if I thought like that. If I did so,
I wouldn’t dare to let him walk on his own.
Anna also described the challenge of finding
meaningful and positive activities for her husband:
What I look for, what I always think about is,
what could amuse him?
DISCUSSION
The present findings indicate that physical activity in
the form of outdoor walks may play an important part
in the everyday life of people with mild AD, by
improving their well-being and health, and by creating
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meaningful routines. In addition, despite experienced
barriers to physical activity, such as tiredness, difficulty
in finding the way and ‘‘peculiar behavior,’’ the
findings also indicate that significant others may be
willing to make considerable adjustments in their daily
lives to enable their partners with AD to be physically
active, especially to take regular walks. The current
findings may thus improve the understanding of
experiences related to everyday physical activity among
people with AD in early stages and their significant
others.
Physical activity as health reinforcement
In the two men with AD in the current study,
enjoyment of nature, body movement, positive atti-
tudes toward physical activity and—in one of them—
also the company of a dog, seemed to be the strongest
motives for taking regular walks. Both men now gave
priority to outdoor walks over other, previous physical
activities such as tennis, cycling, and dancing. These
findings are in agreement with a report that older
people, irrespective of their level of physical function-
ing, undergoing geriatric rehabilitation strongly
emphasize the ability to go out of doors as being
important for their life satisfaction (Aberg, 2008;
Aberg et al, 2005). It has been proposed that in
healthy people the reason for the positive experience of
going out of doors is that the solitude in natural
surroundings (e.g., when walking in the woods)
provides relaxation as well as relief from social
expectations and stress (Daun and Teeland, 1996;
Korpela, Hartig, Kaiser, and Fuhrer, 2001). Compari-
son has been made between the feeling of outdoor
freedom when walking in the woods and the comfort-
able feeling some people experience when in the
company of a dog (Daun and Teeland, 1996).
In previous studies people recently diagnosed with
AD have reported feelings of insecurity and anxiety
concerning social embarrassment (Husband, 2000;
Phinney, 1998). This anxiety resulted in withdrawal
from social contacts and a more restricted life.
Comparatively, the present findings indicate that the
two participating men experienced outdoor walking as
relaxing and as being associated with a low level of
social stress. This could be one reason why this activity
had become of greater importance in everyday life
since they had become affected by AD.
In the present study the participants expressed the
opinion that regular physical activities, at an
appropriate level, are good for the body and soul.
These thoughts seemed to partly explain the two
participant men’s regular walks, which unexpectedly
had become more frequent since they had become
affected by AD. Moreover, the significant others also
noticed that their spouses benefited from outdoor
walks; for example, the walks seemed to make the men
calm and content. Their experiences are in line with
previous findings, which have shown that physical
activity, such as outdoor walks, not only improves
physical health but may have positive effects on mood
and behavior in people with dementia (Eggermont,
2006; Heyn et al, 2004; Williams and Tappen, 2007).
Presumably, the wives therefore supported outdoor
walks and made extensive adaptations to facilitate this
activity, despite some experienced barriers.
Adjustment to situations, as described in previous
paragraphs, can be discussed in the framework of the
Continuity Theory (Atchley, 1989; Atchley, 1999),
which concerns the way in which middle-aged and
older people develop and adjust to life changes.
Atchley (1989, 1999) stated that during the aging
process, people adapt by preserving a sense of
continuity in internal and external structures. Hence,
continuity of both ideas and lifestyle is of key
importance when people develop psychologically and
socially as they age. Despite changes in health and
social circumstances, people strive to establish an
external life situation that supports continuity of their
internal ideas of life. In line with this, in previous
studies people with AD have expressed an ambition to
stay ‘‘normal’’ despite impacts of dementia (Menne
and Kinney, 2002; Phinney, 1998). Typical everyday
activities that had been taken for granted before the
illness seemed to assume a greater significance as the
person with dementia strove to maintain some level of
continuity with their past activities and lifestyle. Such
adaptation was also noted in the present study.
One of the participating men (Anders) had been
fairly physically active on a regular basis during his life,
but the other man (Erik) had only carried out physical
activities intermittently. Now, since they had become
affected by AD, outdoor walks had become an
important part of their daily routines. Walks seemed
to be an activity that they were able to manage without
many perceived limitations related to the AD
diagnosis. The significant others noted their
husbands’ sense of well-being when walking and
hence supported them in this activity. It is presumed
that the participants tried to keep up continuity both
with their previous lifestyle and with activities linked to
living a ‘‘normal life,’’ by carrying out physical
activities that strengthened feelings of health and
independence.
In addition, public health recommendations concern-
ing physical activities emphasize that taking outdoor
walks, for example, not only is a ‘‘common activity’’ but
is an activity that people in general should aim at doing
regularly (Nelson et al, 2007; Yrkesforeningar for fysisk
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aktivitet, 2008). This public advice is also in line with
the attitudes expressed by the participants in the current
study and probably reinforced the wives’ aspirations to
support their husbands in being physically active.
Correspondingly, daily activities have been shown to
constitute part of an ongoing process of self-expression,
which through interaction with the environment
maintains continuity of the self and creates satisfaction
and meaning in the life of older people with frail health
(Aberg et al, 2005). Moreover, significant others of
these older persons shared their opinion that continuity
of self-expression through activity is important for
preservation of a positive self-image. This was also
considered by the significant others as vital for the
interrelationship between the older people and them-
selves, because they felt that maintenance of habitual
activities strengthened the recognition of the care
recipient as her or his old familiar self (Aberg et al,
2004). In agreement of the above findings, ‘‘continuity of
the self’’ has been shown to be a key concept relating to
the views of significant others on factors of importance
for the life satisfaction of older care recipients (Aberg
et al, 2004).
These reports confirm findings by Kihlgren,
Hallgren, Norberg, and Karlsson (1994), establishing
that people with dementia benefit from care that
involves support of preserved abilities and other
positive aspects of the person. One conclusion drawn
from that study was that care of people with dementia
should emphasize activities in which the person is still
able to engage. Thus, a strategy for persons with AD to
reduce feelings of ill effects may be to engage in
activities that are experienced as having a low level of
social stress but can symbolize a ‘‘normal’’ healthy
lifestyle (e.g., taking regular outdoor walks). Such
an approach may reinforce the person’s experience of
well-being and health, as well as the well-being of
his or her significant others, by strengthening their
interrelationship.
Barriers to physical activity and adaptationstrategies
The present findings revealed that AD led to barriers
to physical activity. Furthermore, the need for adapta-
tion seemed to be a problem, mainly for the significant
others. Typically, the participant wives talked more
about barriers to physical activity and the need for
adaptation than did their husbands. The adaptations
made by the two men seemed to have been more
subconscious.
However, all four participants mentioned tiredness
as an important negative factor, because it influenced
the men’s ability to be physically active.
Tiredness in AD may be a result of various factors,
such as disturbances of the sleep-wake cycle, of
executive function, and/or of behavior (inactivity),
which are all common symptoms in early stages of
AD (Goetz, 2007; SBU, The Swedish Council on
Technology Assessment in Health Care, 2008).
Tiredness could also be a result of deprived stimula-
tion or of depression, but neither of the participants
with AD in the current study mentioned any feelings of
monotony or depression. Moreover, it is conceivable
that an impairment of the cerebral ability to integrate
and process sensory information in AD might result
in a need to pay more attention when performing
activities and socializing in daily life. This may lead to
mental fatigue in the persons with AD and increase
their need for rest and sleep. This is in line with
findings from several studies showing that the ability to
walk during performance of a cognitive task is affected
in people with mild AD compared to that in persons
with no cognitive impairement (Camicioli, Howieson,
Lehman, and Kaye, 1997; Pettersson, Engardt, and
Wahlund, 2002; Pettersson, Olsson, and Wahlund,
2005; Sheridan, Solomont, Kowall, and Hausdorff,
2003). Still, tiredness has not been well described
in terms of how it is experienced by the persons
concerned. However, significant others often refer to
the strain of seeing a formerly active person become
passive and inactive.
Another barrier to physical activity related to AD
that emerged in the present study was failure to
observe objects in the surroundings and to move the
body in a well-adjusted manner. The descriptions of
these phenomena by the significant others indicated
that this apparently unusual behavior of the two men
with AD affected their wives strongly, as they did not
understand why their husbands acted as they did in
certain situations. The described phenomena might be
symptoms of impaired perceptual functions, making it
difficult for people with AD to interpret impressions
from the environment (Goetz, 2007; SBU, The
Swedish Council on Technology Assessment in
Health Care, 2008), which might result in problems
with attention and visual-spatial orientation, for
example, as described by the participants.
One pattern that emerged in the present study
indicated a contradiction between the way in which the
significant others described their husbands’ difficulties
in finding their way around and the men’s habits in
performing physical activities in daily life. According
to the wives’ descriptions, it seemed at first almost
hazardous to let the two men do things outdoors by
themselves, despite some security precautions such as
use of the cell phones (Erik). The wives spoke about
their husbands’ difficulty in finding the way, and both
of them vividly talked about incidents when their
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husbands had got lost for several hours. Nevertheless,
the two men took long walks regularly on their own,
and the wives did not mention any concern about this.
The apparently contradictory attitudes of the wives
may be interpreted as a strong ambition to see their
husbands as independent and as physically active as
they used to be before becoming ill (i.e., to maintain
continuity of ideas, lifestyle, and ‘‘the self ’’) (Aberg
et al, 2004; Atchley, 1989; Atchley, 1999). This
motivation was obviously so strong that the wives
were even prepared to take the risk of their husbands
getting lost. Another aspect regarding the wide
variation in the narratives in the present study
regarding the abilities of the two men to find their
way may be in line with a report by Kiyak, Teri, and
Borson (1994). In their study it was found that
caregivers tended to focus on negative factors during
an interview to illustrate problems and deterioration,
probably reflecting the increased burden of caring for
a family member with dementia. Persons with AD, on
the other hand, tended to estimate their ability higher
than did their caregivers by focusing on what they
considered to function fairly normally.
Thus, in mild AD cognitive impairments can cause
a wide range of difficulties in daily life that affect
the ability to be physically active. The consequences of
these cognitive impairments can be difficult to compre-
hend and handle for, especially, the significant others
and might need to be explained to them by health care
professionals.
To sum up, the everyday life of the men affected
by AD consisted of similar routines day after day.
However, their outdoor walks were described as
providing an important, appreciated, and meaningful
part of the men’s daily life and appeared to improve
their health and well-being. To make these routines
possible, both practical and mental adjustments were
made by the significant others, whereas the men with
AD mainly used mental adjustment strategies to cope
with changes caused by AD. The two men described
mental adjustments that have similarities to two of the
strategies reported from a study of life at the age of 92,
where old, nondemented persons were interviewed
(Agren, 1998). One of these strategies was that the
older persons tried not to think about the future and
what might happen to their health and life situation,
but instead strove to live day by day. The other strategy
implied letting go of a previously enjoyed activity and
replacing it with a new one when life changed (i.e.,
preserving a sense of continuity in internal and exter-
nal structures) (Atchley, 1989; Atchley, 1999). Along
with these strategies, the adaptation and development
by continuity described previously (Aberg et al, 2004;
Atchley, 1989; Atchley, 1999) might have contributed
to the fact that the men with AD in the present study
expressed contentment regarding their daily routines
and abilities. It also has to be considered, however,
that during the course of AD a gradual deterioration
of insight can occur. This may influence the afflicted
person’s perception of his or her actual physical
capacity and level of activity (Goetz, 2007; SBU,
The Swedish Council on Technology Assessment in
Health Care, 2008).
Obviously, personal experiences of health aspects in
AD do not reflect dysfunction in an objective way. The
present findings may be discussed on the basis of the
ideas of Ueda and Okawa (2003) regarding health
aspects as described in ICF (WHO, 2001). They point
out that the ICF aspects of health, namely, anatomical
structure and body function, activity and participation
describe the objective world and objective dimensions
of human life. To get an overall picture of a person’s
health status, that person’s own experiences of differ-
ent aspects of health must be considered. According to
Ueda and Okawa (2003), these subjective health
aspects, which are lacking in ICF, could be defined
as unique combinations of the experienced illness and
positive, often unconscious experiences of psycho-
logical adjustment to overcome the negative con-
sequences of impaired health. This perspective is well
confirmed in the present study. Our findings indicate
that people with AD in early stages can experience
good health in daily life despite the functional
limitation caused by AD. However, significant others
have an important role in making practical arrange-
ments to enable the persons with AD to have a
pleasant everyday life.
Methodological considerations andlimitations
The present study has some limitations. The findings
are based on a case study and thus cannot be
generalized to all people with AD. The participants
were selected in that they were all married, the afflicted
persons were men, and the men had similar cognitive
function. The participants also showed positive atti-
tudes toward physical activity. Thus, a larger and more
varied study group would have allowed more variation
and depth in the findings. On the other hand, the
present findings reflect phenomena that are valid in
our particular participants.
One of the benefits of the qualitative approach used
here is that it had the potential to provide a deep
understanding of how the included subjects experienced
the afflicted person’s ability to be physically active.
The use of such methods also enabled insight in how
the participants perceived the importance of physical
activities in daily life. To give the study rigor and
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integrity, a number of measures were taken during the
entire research process, in accordance with procedures
described in the literature (Braun and Clarke, 2006;
Polit and Beck, 2008). For instance, multiple triangu-
lations, including person, time, method, and space
triangulation were used during data collection. Repeated
interviews were conducted with each of the participating
men to obtain clarifications and to elucidate the same
aspects several times. This technique was chosen to
achieve informal members checking (Polit and Beck,
2008) with the subjects with AD, despite the language
difficulties and problems in expressing oneself as often
occurs in AD. The statements made by the men with
AD might appear relatively short, but nevertheless they
are considered by the authors to reflect the personal
experiences and feelings related to physical activity.
During the month of data collection from each couple,
conditions were established to gain the participants’
trust in obtaining a detailed description of their
experiences regarding physical activity. Furthermore,
the same person (YC) did all the data collection,
transcribed the interviews verbatim and the field notes
into written text, and was able to get a balanced and
accurate picture of the research field. Apart from the
time when data were being collected, YC did not have
any connection with the participants during the present
study. In addition, during the data collection, data
analysis, and interpretation procedure, repeated peer
debriefings (Polit and Beck, 2008) were held between
the authors to explore various aspects of the data
analysis and interpretations. The two authors’ different
perspectives and experiences from both patients with
AD and qualitative research deepened the analysis and
interpretations. Despite the limitations described above,
the findings may provide a valuable insight into the
way people with mild AD and their significant others
can experience the impact of AD and illustrate the
important role of physical activity in the early stages of
AD. This may be a starting point for a more extended
exploration that could elucidate additional aspects of the
role played by regular physical activity in mild AD, for
example, in the prevention of physical decline and falls
and in improvement of well-being and health.
CONCLUSION AND PRACTICALAPPLICATION
The present findings indicate that in persons with AD
regular physical activities such as outdoor walks may
play an important part in everyday life by creating
meaningful routines and by improving well-being
and perceived health. In addition, despite barriers to
physical activity, the findings suggest that significant
others may be positive toward making adjustments
in everyday life to support their partner’s ability to
perform regular physical activities. On the basis of
these findings, it might be speculated that a new
approach to rehabilitation focusing on promotion of
physical activities such as outdoor walks should be
considered for persons with mild AD. The present
findings may also imply that special attention, in this
respect, should be paid on single persons with AD in
the early stages, living alone, because support may be
needed for encouragement, security, and problem
solving in specific situations.
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APPENDIX A
The guide for use during the interviews
The aim is to enable and encourage the participant to narrate freely concerning the main topic and related issues. The same areas are
highlighted on several occasions during the interview to obtain clarifications and elucidate different aspects of the topics studied.
Opening question addressed to the person with AD: What do you think about your ability to move about and be physically active now,
compared with the time before you had problems with your memory?
Opening question addressed to the significant other: What do you think about your husband’s/ wife’s ability to move about and be physically
active now, compared with the time before he/ she developed problems with his/her memory?
Key issues:
Experiences of performing physical activities nowadays; examples of areas to focus on are hindrances to and facilitators of physical activity,
need for support, motivations, feelings, strategies, need for social contacts, and company.
An ordinary day; examples to focus on are the time of getting up/going to bed, routines, need for rest or sleep, physical activities during
the day, much-enjoyed activities.
Habits regarding physical activities; examples of areas to focus on are habits related to physical activities nowadays and in the past, and
feelings related to the current habits.
Importance of being physically active in daily life; examples of areas to focus on, if appropriate and relevant, are attitudes and perceptions
related to physical activities nowadays and in the past, prioritizing those in daily life.
The interview is concluded by asking the participant if there is anything they would like to add or stress, regarding the subject in
question.
APPENDIX B
The guide for use during participant observations
The aim of the participant observation is to obtain a more detailed picture of the ability of the participant with AD to perform physical
activities in everyday life. Appropriate physical activities to observe are activities beyond activities of daily living that the participant
performs regularly, at least once a week. Suitable times are chosen for conducting participant observations in collaboration with the
participant with AD and the significant other.
It is important that the participant with AD (or the significant other if that is the couple’s normal routine), initiates the physical activities
during the participant observations. The researcher shall make efforts to maintain a personal yet expectant attitude so as not to
influence the situation more than necessary.
Examples of areas to observe, if appropriate and relevant, are: who initiates the physical activity, need for support to perform the activity, signs
of insecurity or security when performing physical activities, expressed feelings and attitudes related to physical activities, observed hindrances to
or facilitators of physical activity, way of moving about.
Observation field notes are taken during the participant observations and summarized afterwards in a written text that describes the
observed event in a concrete manner.
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