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168 Copyright © American Occupational Therapy Foundation
Much has been written about dementia
from a scientific, treatment, or care-
giver’s perspective, yet little has been
done to generate practical information to support
people who live with dementia. Research shows
that, for the most part, people with dementia do not
receive appropriate care and/or support services
(Alzheimer’s Scotland, 2009; Whitehouse & George,
2008). Furthermore, a systemic failure to understand
their needs deprives them, and their families, of
opportunities to live with a sense of well-being. In
a recent report from the World Health Organization
(WHO, 2012), Dr. Margaret Chen stated that
improvements in health care have contributed to
people living “longer and healthier lives” (p. v) and
this in turn has contributed to an increased number
of people living with dementia. What stands out
in the report is the call for action to provide “com-
munity support that will enhance the health, social
well-being and quality of life of those living with
dementia and their caregivers” (p. 3).
The link between occupations and health is well
established. The International Classifi cation of Func-
tioning, Disability and Health (ICF) (WHO, 2001)
posits health as a dynamic interaction between par-
ticipation, which concerns the things people do, con-
textual factors, health conditions, and personal fac-
tors. This stance emphasizes the infl uence of daily
activities on function, health, and disability in com-
munity- and population-based practices.
Indeed, diverse occupations are so much a part
of daily life that we tend to take participation for
Grace O’Sullivan, PhD, is Research Fellow, and Clare Hocking, PhD, is Professor, Division of Rehabilitation and Occupation
Studies, Faculty of Health and Environmental Sciences, Auckland University of Technology, Auckland, New Zealand.
Submitted: November 2, 2012; Accepted: May 21, 2013
The authors have no financial or proprietary interest in the materials presented herein.
Correspondence: Grace O’Sullivan, PhD, Faculty of Health & Environmental Sciences, Auckland University of Technology,
Private Bag 92 006, Auckland 1142, New Zealand. E-mail: sullies@xtra.co.nz
doi: 10.3928/15394492-20130614-05
Translating Action Research Into Practice:
Seeking Occupational Justice for People
With Dementia
Grace O’Sullivan, PhD; Clare Hocking, PhD
key words: daily activities, occupation, engagement, participation
ABSTRACT
Dementia is a critical social issue that contributes to, and is exacerbated by, occupational
deprivation. This article reports the findings of an action research project undertaken to explore
the daily activities of people who live with dementia in the community. Data were gathered by
interviews, observations, and focus groups in community settings. The process of data gather-
ing and analysis were reciprocally integrated. The participants, 11 people with mild to moder-
ate dementia and their primary caregiver, prioritized the need to change the way dementia is
perceived. Their rationale included other people’s understanding of dementia and the social
isolation they experience, resulting from a decline in opportunities to engage in daily activities.
Occupational therapists have a significant role to play, encouraging and supporting people
who live with dementia to maintain health and well-being by participating in occupations.
Overcoming systemic issues that create barriers to occupation is vital. [OTJR: Occupation,
Participation and Health 2013;33(3):168-176.]
169
OTJR: Occupation, Participation and Health • Vol. 33, No. 3, 2013
granted. Although people do daily activities for in-
dividual reasons, the relevant point is that occupa-
tions engage the brain, give purpose to the day, and
make life worth living. Therefore, it stands to reason
that the loss of occupations is one of the most debili-
tating outcomes of dementia and one that has pro-
found consequences for the person (Taylor, 2007).
For that reason, this study was designed to under-
take a systematic inquiry into the question of how
people who live with dementia in the community
engage in daily activities.
Literature Review
The anticipated surge in the number of people liv-
ing with dementia has alerted health professionals
to the fact that more knowledge is needed if health
and social services are to address unmet needs in
the community (WHO, 2012). Whereas people with
dementia have historically played a passive role in
investigations of their condition (Phinney, 2008),
there is now international recognition of their capac-
ity to report unmet needs (Sabat, 2008). This shift in
thinking acknowledges people with mild to mod-
erate dementia as experts of their own experience.
Rather than being relegated to the receiving end of
care services, people with dementia are breaking
new ground when they contribute to the creation of
knowledge. Similarly, family and friends who play a
vital role in supporting people with dementia have
an important contribution to make (Sabat, 2011).
In the past, a diagnosis of dementia was a ma-
jor reason for admission to custodial care within a
psychiatric institution (Kitwood, 1997). At the time
it was understood that dementia was “not amena-
ble to treatment” (Anderson, Anderson, & Glanze,
2004, p. 450). Overwhelmingly framed as an organic
brain disorder, treatment of people with dementia
continues to be carried out within a narrow para-
digm (Whitehouse & George, 2008). Those ideas are
changing (Graff et al., 2006) with a shift in emphasis
from a dependency approach to the person-centered
care advocated by Kitwood (1997). More recently,
the need for closer collaboration between medicine
and social care is recognized, as is the need to learn
from people with dementia (National Collaborating
Centre for Mental Health, 2011; WHO, 2012).
Few medications have been found to alleviate
the symptoms or slow the progression of dementia.
Cholinesterase inhibitors and NMDA-receptor an-
tagonists are reported to be benefi cial, but only for
some people and for a limited period of time (Brick-
ell, 2012; National Collaborating Centre for Mental
Health, 2011). With no cure in sight, there is a need
to engage with people with dementia and their fam-
ilies, “to explore and address the interconnections
and tensions between system and life world aspects”
(Kemmis, 2006, p. 101) of living with dementia. New,
effective strategies are needed to offset adverse ef-
fects at both the individual and societal level.
Although many dementias are progressive, diag-
nosis is not the end of the person’s capacity to live a
meaningful life (Bishop, 2011). Careful assessment,
education, and specialized treatment immediately
following diagnosis can enable people with demen-
tia and their families to live with a sense of well-be-
ing (Graff et al., 2008; Marshall, 2005; Sabat, 2008).
Despite the centrality of defi cits in social and occu-
pational functioning (Wilkinson, 2002), the initial
clinical assessment of people exhibiting dementia is
usually medically focused, and little is done to sup-
port people after diagnosis.
This could be attributed to the fact that the word
dementia is commonly interpreted to mean “a com-
plete and total loss of self” (George, 2010, p. 586). Ac-
cordingly, people receiving a diagnosis of dementia
are viewed through a lens of hopelessness (Taylor,
2007), despite recent studies undertaken with people
with mild to moderate dementia that strongly sug-
gested the social, practical, and physical aspects of
health are important facilitators of well-being (Brick-
ell, 2012; Graff et al., 2006). Referring to dementia in
the context of illness, Gadamer (1996) advised that
“it is clearly a misrepresentation to look at the con-
cept of illness from the standpoint of scientifi c medi-
cine and. . .to think that medical knowledge is the
same thing as the patient’s own self understanding”
(p. 52). This stance is acknowledged by the discern-
ible shift toward a broader perspective of the impact
dementia has on people’s life and health (Sabat,
2008). Indeed, the call for treatment following a di-
agnosis of dementia is increasingly promoted (Mac-
Rae, 2007; Marshall, 2005; National Collaborating
Centre for Mental Health, 2011; WHO, 2012).
This call was strongly supported by authors who
have written from personal experience. They report-
ed the loss of daily activities that predictably follows a
diagnosis of dementia affects self-confi dence, leading
to a loss of hope and, ultimately, depression (Bryden,
2005; DeBaggio, 2002; Taylor, 2007). Yet research has
shown that participation in daily activities improves
function and provides hope for the future while pro-
moting a sense of well-being for both people with de-
mentia and their families (Davidson & Bissell, 2005;
Graff et al., 2008; MacRae, 2007). Both researchers and
people living with dementia have challenged the view
that they lack insight, ability, and judgment, among
other cognitive abilities (Sabat, 2008; Taylor, 2007). In
170 Copyright © American Occupational Therapy Foundation
fact, it has been argued that if people with traumatic
brain injuries can benefi t from treatment, so can peo-
ple with dementia (Marshall, 2005; O’Sullivan, 2012).
Based on these understandings, this study, undertak-
en for a doctoral degree, explored the daily activities
of people with dementia.
Methods
Action research is a term that refers to a range of
research activities that may be better described as
applied research because they do not always require
participation (Kemmis, 2010). It is, more or less, a
systematic research process that aims to change three
things: practices, understandings, and the conditions
of practice (Kemmis, 2009). Unlike qualitative meth-
ods that employ a theoretical framework to generate
knowledge to reproduce as closely as possible the re-
ality to be interpreted (Fals-Borda & Rahman, 1991),
action research opens communicative spaces to ex-
plore the “way things are” (Kemmis, 2008) and point
to a course of action (Williams, 1999). Furthermore,
action research addresses questions of a personal na-
ture, with the intent of developing knowledge that
can be used to create change and infl uence policy
decisions (Kemmis, 2010). The methods are fl exible
enough to capture reality (Reason, 1998), and to have
participants think about what needs to change (Kem-
mis, 2006). Still, a rigorous and demanding approach
to knowledge is advocated (McNiff & Whitehead,
2006; Reason & Bradbury, 2006). This study aimed
to create a conceptual and methodological space in
which a process of dialogue and critical interpretation
could effectively be achieved.
Recruitment
Eleven participants with mild to moderate de-
mentia and their primary caregivers were recruited
over a 2-year period (October 2005 to August, 2007)
from community health service providers and by
word of mouth. An information sheet outlined the
purpose of the study to potential participants. Writ-
ten, informed consent, which included a clause ad-
vising that they could leave the study at any time,
was given by participants before data gathering be-
gan. No risks were anticipated and anonymity was
assured. Table 1 provides a profi le of participants.
Pseudonyms have been used to protect anonymity.
Data Gathering
Individual appointments, which lasted between
1 and 2 hours, were initially held in participants’
homes and involved the person with dementia and
their caregiver. The fi rst meeting was used to estab-
lish rapport and gather personal data about past
roles, habits, interests, values, and management of
the disease process. This information was gathered
conversationally using open-ended questions. Data
were written up under headings derived from the
ICF (WHO, 2001) (e.g., participation/occupation
and body structure/function). Details relating to de-
mentia were documented, including diagnosis, by
whom, when, and current medications. The caregiv-
er’s profi le was also documented because dementia
inevitably affects the primary caregiver’s life.
Subsequent data gathering meetings with each
couple took place at 3- to 4-month intervals. In total,
more than 100 hours were spent collecting data over
4 years. Key areas explored included: participation
in daily activities, changing abilities, practical solu-
tions, and support needs. At the end of each conver-
sation, participants were asked if there were topics
that had not been considered but that should be ad-
dressed. Field observations noted facial expressions
and body language, as well as the level of participa-
tion from both people.
When data gathering reached a point whereby in-
formation was repetitive, participants were invited
to take part in focus group discussions to consider
the preliminary fi ndings arising from the data. The
focus groups, which lasted between 2 and 2½ hours,
involved a subset of participants. In the fi rst, there
was a relatively equal distribution of people with
dementia, caregivers, and male/female attendees.
Four of the nine participants had dementia, three
with older onset and one with young onset. In the
second, six of the eleven participants had attended
the fi rst focus group and included fi ve couples and
one caregiver, with a gender mix of six men and fi ve
women. Two had older onset dementia and three
had young onset dementia.
The focus groups provided an opportunity to ac-
cess data that may not have been obtained in the in-
dividual interviews. Moreover, the discussion can-
vassed similarities and differences in participants’
experience of living with dementia. Both focus
groups opened with a synopsis of fi ndings to that
point. The fi rst progressed to a discussion of simi-
larities and differences, whereas the second sought
participants’ views on which fi ndings they would
prioritize as most important.
Data Analysis
The audiotaped interview data were transcribed
verbatim, beginning immediately after the fi rst ap-
pointment. The process of data analysis had several
stages, each informed sequentially by the action
research cycle. Initial codes were noted on the tran-
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OTJR: Occupation, Participation and Health • Vol. 33, No. 3, 2013
scripts and interpretations were discussed with the
participants at the next appointment to make sure
the analysis was accurate. In working across the
data set, the similarities and differences between the
participants became apparent and on refl ection it
was clear that fi xed ideas and social structures infl u-
enced their daily lives. Because the notion of stigma
pervaded the transcripts, it became one of the fi rst
codes. Isolation was another. The refl exive, cyclical
process of analysis included repeatedly examining
the interview transcripts, considering the initial
codes, and checking for new insights applicable to
other participants.
In the second stage of analysis, ideas were mind
mapped and linked to philosophy, the topic, and the
research question. New ideas were discussed with
participant dyads and during the focus groups. Data
generated in the focus groups augmented the ongo-
ing analysis. The codes were grouped and regrouped
into categories before becoming initial themes. Dur-
ing the third stage of analysis, the literature was
revisited to explore alternative approaches to data
interpretation. A qualitative software program was
not used because data analysis was in collaboration
with participants. Consequently, the process was
emergent and responsive to the feedback received in
relation to the understandings being reached.
Findings
It became apparent early in the course of the
study that “having things to do” was important to
participants. Furthermore, age made a difference to
expectations of what they should and could be do-
Table 1
Participant Demographics
Participantsa
Age
(y) Diagnosis
Years Since
Diagnosis on
Joining the Study Relationships
Dementia (Specific)
Medication
Ron 59 Alzheimer’s 5.2 Married, 1 child Anti-depressant
Ann 59
Rita 75 Alzheimer’s 1.2 Married, 5 children Nil
Bernard 79
Scott 62 Alzheimer’s 1.2 Married, 2 children Cognitive enhancer &
anti-depressant
Polly 58
Greg 66 Alzheimer’s 3 Married, 3 children Cognitive enhancer
Fiona 63
Mick 59 Lewy body 2.9 Married, 2 children Cognitive enhancer &
anti-depressant
Marianne 58
Dutch 71 Alzheimer’s 4 Partners, no children Nil
Moses 71
Gran 65 Alzheimer’s 3.10 Married, 3 children Nil
Pop 65
Liz 75 Alzheimer’s 3.9 Married, 7 children Cognitive enhancer
Mac 80
Sheena 76 Alzheimer’s 2.3 Mother & daughter Nil
Pat 52
Maura 76 Alzheimer’s/Vascular 1 Mother & son Cognitive enhancer &
anti-psychotic
Sonny 46
Harry 85 Alzheimer’s/Vascular 3 Married, 2 children Nil
Betty 86
aPseudonyms used to protect anonymity.
172 Copyright © American Occupational Therapy Foundation
ing. Of the 11 participants with dementia, eight, of
varying ages, reported feeling frustrated by declin-
ing abilities. All had withdrawn from many daily
activities but, with the exception of two, all reported
good physical health. Although several themes pre-
sented themselves during the course of this study,
only those that shed light on experiences of occu-
pational injustice are reported here. Those include:
Routine daily activities; Declining abilities; and Age
makes a difference. Other results are reported else-
where (O’Sullivan, Hocking, & Spence, 2013).
Routine Daily Activities
The following three examples from the data high-
light the difference that engaging in daily activities
made to people’s approach toward living with de-
mentia. On receiving a diagnosis of (probable) Al-
zheimer’s disease, Rita was devastated. Nonethe-
less, she and her husband Bernard were determined
to challenge the process at every opportunity. They
lived life to the best of their ability by engaging in a
range of daily activities, routinely visiting their chil-
dren, grandchildren, and Rita’s mother who lived in
a rest home. According to Rita:
I have this disability. You know the memory at times. .
.Alzheimer’s. . .I have faced it, but I feel that so far I’m
doing okay. . . . We do not sit at home. . . . If I had to be
staying here all the time, I could see myself just going
downhill. I tell you straight, I would be a very different
person.
Similarly, both Dutch and his partner Moses
claimed to be “horrifi ed” when Dutch was diagnosed
as having (probable) Alzheimer’s. However, Moses
encouraged Dutch to retain his abilities by having
expectations of him and treating him as a normal
human being whose sense of self is important and
whose capacity to engage in activities is intact. Over
time they established a daily routine that included
household chores: “Friday is housework morning,
always. He’s still so capable of doing so many things
which I fi nd quite amazing” (Moses). Rather than al-
low Dutch to become dependent and lacking a sense
of purpose in the world, Moses helped offset debili-
tating symptoms by joining social groups they could
both enjoy. Activity options included board games,
music, dancing, outings, and gardening. Six years
after diagnosis, Dutch was still engaging in life. Yes,
abilities declined and some activities fell by the way-
side, but so many people doubted the diagnosis that
Dutch went to a specialist to be re-assessed. The di-
agnosis was confi rmed.
Diagnosed as having (probable) Alzheimer’s, Gran
also had osteoporosis and used a walker to mobilize.
Because of her physical disability she received assis-
tance Monday to Friday with personal hygiene and
support once a week with house chores. This gave
Gran the time and energy to do the things she wanted
to do, including “all my own cooking.” In addition to
attending country music clubs she reported:
On Tuesdays and Wednesdays I go to a community
centre. On Thursdays I have my hair done before going
to play cards with friends for the afternoon and on Fri-
day mornings I go to Housie. . . . The crowd is not very
big but it’s good, everybody is friendly. That’s what I
like about it, it gets me out. . . . You’ve got to do some-
thing, if you let it go it’s just going to get worse.
During a telephone conversation late in 2011 to
clarify a detail in the data, Gran asked who the fi rst
author was supporting in the Rugby World Cup.
Living in New Zealand, she thought it prudent to
say the All Blacks. To her surprise, Gran was hop-
ing Wales, who were playing that night, would win.
When asked why she was supporting Wales, Gran
had no hesitation in saying that the All Blacks would
defi nitely make the fi nal so it would be a really good
fi nal if Wales were the opposing team. At the time
Gran had been diagnosed for 8 years, and her ratio-
nale was amazing. These participants were fortunate
to have a partner who understood and addressed
their needs. For others, lack of daily activities was a
cause of frustration and hopelessness.
Declining Abilities
Ron was diagnosed as having (probable) Al-
zheimer’s at age 54 years. Although he was cared
for at home by his wife Ann, she worried constantly
about social isolation: “With me being at work Ron’s
gotta sit at home and not talk to anyone.” Ron was
equally frustrated: “The days are long when there’s
nothing to do.” Ron needed support to do things
but there were few opportunities in his community,
so while Ann was at work Ron was restricted to a
45-minute walk with a caregiver two afternoons a
week. That was the sum total of allocated support
services. Once a month Ron attended a community
group, otherwise he spent most weekdays on his
own. Referring to Ron’s isolation, Ann said:
I see the guys down at Alzheimer’s and they are all
looking for that companionship that they used to have
at work. They’re looking. . .to do something useful. The
general day-to-day stuff, getting Ron dressed is not a
problem, what becomes a problem is when you come
home from work, Ron has been sitting there all day
and so okay let’s go out and do something. It would be
great if that group of guys could have something to do,
they need an occupation.
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OTJR: Occupation, Participation and Health • Vol. 33, No. 3, 2013
Others also struggled with having nothing to
do. For instance, Greg reported: “I think the hard-
est thing is not having enough to do. . .time hangs
heavy on your hands. Sometimes I think at the end
of the day—what a waste of a day.” His wife Fiona
added, “He’s living a fairly aimless life.” Fiona be-
lieved the problem was exacerbated by other peo-
ple’s lack of understanding: “They hear the word
dementia and think of someone in the very fi nal
stages.” Convinced of this, Greg was wary of tell-
ing others about his health condition. Interestingly,
the following data reveal an event that took place
more than 2 years after Greg was diagnosed as hav-
ing (probable) Alzheimer’s disease.
Fiona: Greg sailed in yacht races, as a navigator. In the
last Louis Vuitton Cup, which was here, Greg applied
as a volunteer. He desperately needed something to do
but didn’t tell them of the problems he had and then
came home quite horrifi ed because they had taken him
on as a navigator assigned to the committee boat. He
said “What am I going to do?” We were going to see
[the specialist] and he said, “Well, it’s old knowledge
Greg, see how you go with it.” Greg never put a foot
wrong, in fact one thing you got high praise for.
Greg: In the run up to the races, two race offi cers in
charge did an exercise in course navigation. My job was
to check the computer-calculated course, calculate the
numbers and place them on the chart. They were say-
ing such and such an’ what they were saying was noth-
ing like it should be so I didn’t want to say anything
because I thought maybe I’ve got the wrong answer. I
did it again and still got the same answer so I told him
“What you’re getting is not what I’m getting.” He came
over, had a look and he said “You’re right.”
When asked if he ever told anyone about his con-
dition Greg responded emphatically “No.” Accord-
ing to Fiona, “It was so wonderful to see Greg come
home with a grin on his face every night, it was just
lovely.” Clearly, people with dementia do retain abil-
ities for an unpredictable length of time and benefi t
from using them, thus belying the notion they can
do nothing.
Likewise, Mick reported that having nothing to
do was demoralizing. A qualifi ed engineer, Mick
was an easygoing person who previously liked to
keep busy working around home and helping other
people. When asked how he spends his time these
days, Mick admitted that most days he does not get
up “until nearly lunch time.” When asked why he
stays in bed all morning, Mick stated: “There’s no
reason to get up.”
Ron, Greg, and Mick attended a ‘Blokes Group’
once a month and of this Greg said: “We do activi-
ties that we look forward to incredibly. We’re all in
the same boat. . .and we have a lot of fun.” However,
that one group outing did not enable them to live
with a sense of well-being.
Lack of community support eventually took its
toll and despite Ann’s resolve to care for Ron at
home, she was advised that looking after him was
taking a toll on her health. Consequently Ron was
admitted to residential care. For Ron, the change
was devastating and his decline rapid. Several fac-
tors contributed to this. Ron was moved between
three facilities within 3 months and given a “cock-
tail” of medications to “manage” the symptoms.
Those symptoms were not evident at home. Four
months after being taken into care, Ann reported
he had “more or less withdrawn from all aspects of
life.” Systemic barriers contributed to this outcome.
The idea that little can be done to help people living
with dementia is indicative of inequities that have
arisen because service providers lack understanding
of the support required to enable them to live in the
community. As a determinant of health, opportuni-
ties for daily activities made a difference but not in
any simplistic, basic, or fi xed way. Factors such as
age, family support, and social perceptions all shape
the ways in which people live with dementia.
Age Makes a Difference
When diagnosed as having (probable) Alzheim-
er’s disease aged 81 years, Harry was not unduly
perturbed. Before retiring, he led an extremely busy
lifestyle. He and his wife Betty were very social, with
lots of friends. Yet now, he was content to live qui-
etly. With a caregiver to help him shower 5 days a
week, Harry wasn’t worried about declining health:
I sort of know that I am having a problem at times. . . . I
realize that I am in a stage of my life where I need a bit
of help. . .slowed down a bit yes, but there must be a lot
of people have the same problem. I just love sitting here
looking out. . .it’s nice to know that I can look out the win-
dow and think hey! I am still here. I am quite happy and I
am very lucky with my wife and all my friends. . . . When
there’s nothing else to do, I come and sit in this seat and
look out the window. I recognize where I am and what I
am doing. Oh yes, I’ve had quite a career going back. My
memories, well I’ve got the war and I survived that, yes I
survived alive. Yes, it goes through my tired brain.
In fact, Harry spent most of the day sitting looking
out of the window. If Betty went out she would take
him with her and he was happy to sit in the car and
watch passersby. His children and grandchildren reg-
ularly visited and occasionally took him out. These
activities suffi ced to enable Harry to live with a sense
of well-being: “I shouldn’t be bored. . .it’s nice to be an
174 Copyright © American Occupational Therapy Foundation
old bugger sitting here listening and talking. It’s nice
to be able to do that.” Harry was taken into residential
care when Betty’s health began to decline.
Ann and Betty had very different opinions on liv-
ing with dementia. Betty stated: “I think Alzheimer’s
is a very gentle disease, there’s no pain and it allows
a gradual end to life.” In contrast, Ann said: “I feel
such grief, loss, guilt, and anger. This is such a cruel
disease, watching the person you love deteriorate and
knowing there is little you can do to protect him.” In
hindsight, Ann said, “I wish I had ignored all the ad-
vice given by the so-called health professionals.”
The fi ndings highlight the contrasts and intricacies
of living with dementia. The common thread perme-
ating them all is a need for occupations. A diagnosis
of dementia should not be an inevitable slow decline
with an undignifi ed end. Participation in daily activi-
ties, even relatively basic activities, would give rea-
sonable hope for transformation of the condition from
an insurmountable problem to a progressive disorder
that is manageable and treatable.
Discussion
Health is a human rights issue and so address-
ing inequities in health systems vis-à-vis services
for people with dementia is a matter of occupational
justice. Many countries are grappling with the same
issues regarding dementia: What are determinants
of health? How do we provide equitable access to
health care? This apparent lack of understanding
about approaches to health for people with demen-
tia means there are few services to support them.
However, there is a large body of evidence sup-
porting the positive effects occupational therapy has
on functional independence and participation in so-
cial activities (Davidson & Bissell, 2005; Graff et al.,
2006; Hampson, 2009). What is more, research done
over time by other health disciplines has conclusive-
ly established that the level of satisfaction gained
from participation in occupations is directly related
to a positive attitude and feelings of well-being (Co-
hen-Mansfi eld, 2008; Glass, de Leon, Marottoli, &
Berkman, 1999; Reid, Ryan, & Enderby, 2001). There
is a tendency to see only risks in encouraging people
with dementia to do things, but “doing” gives pur-
pose to life and so the balance of risk must be care-
fully weighed to include the dignity of risk. More
important, activities tailored to individual values
and interests, assessed needs, strengths, and limita-
tions enhances people’s ability to function in wider
activities of daily living (Hampson, 2009).
Two signifi cant pieces of research aligned to the
fi ndings of this study are presented by Graff et al.
(2006; 2008). They robustly argued that people with
mild to moderate dementia benefi t from engaging in
daily occupations because daily functioning is im-
proved and caregiver stress is reduced. The fi ndings
of the current study are comparable to those pre-
sented by Graff et al. and, what is more, they expand
on the underlying beliefs inasmuch as they show
that people are keen to challenge the disease but
they need to know how; they need a practical way
forward. Occupational therapists have the knowl-
edge to support people who live with dementia and
to help them to maintain and maximize functional
abilities and social skills. Participation will promote
confi dence, self-esteem, and physical health, man-
age agitated or restless behaviors, and offset the
sense of frustration and hopelessness inevitably as-
sociated with dementia. However, this approach to
living with dementia is undervalued by health sys-
tems. Instead of encouraging participation, many
hold the attitude that people with dementia need to
be cared for, so things are done for them.
A critical component of the action in this research
was uncovering the aspects of social injustice that dis-
advantage people with dementia. Attitudes and ap-
proaches that frame them as lacking in capacity and
intellect undermine their abilities. At this point in time,
there is no vaccine or cure for dementia, yet people
have a right to expect health services that consider
their well-being. Research has shown that occupation-
al therapy is a cost-effective means of educating people
with dementia to use their abilities (Graff et al., 2008).
To expand on this notion, when people are engaged in
a meaningful occupation, in doing something they en-
joy, their mind is focused on what they are doing and
brain cells are fi ring because they are active and in-
volved (Jakobson Ramin, 2007; Snowdon, 2002). Both
the activity and the challenge to the brain cells are im-
portant (Sabat, 2008). This belief underpins the argu-
ment that occupation is central to functioning, health,
and well-being (Wilcock & Townsend, 2000). The social
aspect is also crucial. Research has shown that being
part of a group, be it a gardening club, a football team,
or a walking group, gives people a sense of identity
and fulfi llment (Fieldhouse, 2012). In this regard, peo-
ple with dementia are just like others. However, there
is one key difference: due to a systemic failure to un-
derstand and develop health services to address their
needs, people with dementia are deprived of opportu-
nities to engage in purposeful and/or meaningful oc-
cupations (Alzheimer Scotland, 2009).
Concepts of health are shifting. The time to seek
occupational justice for people with dementia is
now. The principle behind occupational justice is
bound up in concepts of health and includes the be-
175
OTJR: Occupation, Participation and Health • Vol. 33, No. 3, 2013
lief that the right to engage in occupations is a mat-
ter of social justice (Wilcock & Townsend, 2000). The
changing features of health and social services are
an opportunity for occupational therapists to high-
light the signifi cant contribution our health profes-
sion can make. Actively positioning ourselves as
advocates for people with dementia is justifi ed by
the call to recognize, and provide for, the occupa-
tional needs of people and communities (World Fed-
eration of Occupational Therapists, 2006). Currently,
earlier diagnosis is being advocated to enable people
to make decisions about their future. Knowing the
progressive nature of this condition, it is essential to
give people a way to live positively following the
diagnosis.
Strengths and Limitations
The potency of this study is the participants,
many of whom contributed over a lengthy period
of time. They emphasized the importance of high-
lighting their need to have things to do. A potential
limitation is that a different researcher, with differ-
ent understandings, may interpret the data differ-
ently. Equally, a different methodology may increase
understandings of a complex problem by capturing
different aspects of the experience.
Recommendations
To leave people with dementia and their families
in their increasingly isolated, socially shrinking, bor-
ing world is morally and professionally untenable.
Occupational therapists can take leadership on this
issue by looking for the positive aspects of demen-
tia, abandoning old ideas, and embracing new ini-
tiatives and collaborating with people who live with
dementia to fi nd ways to address their needs.
Conclusion
This article has argued for occupational justice
on behalf of people with dementia. Essentially, the
argument is about bringing new insights to a sig-
nifi cant health issue: the health and well-being of
people with dementia. Stepping up to this challenge
means recognizing the injustice that exists with re-
gard to health services for people with dementia and
understanding that an occupational perspective is
an essential part of the solution. If health is simply
aligned to disease and risk management rather than
a combination of physical, mental, social, and spiri-
tual well-being, then people with dementia are con-
fi ned to a medical interpretation of health. Alterna-
tively, if occupational therapists advocate for health
services that include opportunities for engagement
in daily activities, then we support people with de-
mentia in the richest, deepest, and most meaningful
way. Accomplishing this requires courage as defi ned
by Plato (428-347 BC): “It needs the best of what the
best among us can give and the help of everybody.”
Acknowledgments
The authors thank the participants who generously gave
their time and shared their knowledge, trusting that the
information they gave would be used to help other peo-
ple with dementia and their families to live well. Without
their contribution, collaboration, refl ections, constructive
criticism, and feedback, this research would not have been
possible. The study was completed for a Doctorate of Phi-
losophy degree, under the auspices of Auckland Univer-
sity of Technology.
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