Living with dementia with Lewy bodies: An interpretative phenomenological analysis

Abstract

Objective: To explore the subjective experience of living with dementia with Lewy bodies (DLB). Design A qualitative study of in-depth interviews using interpretative phenomenological analysis.
Setting: A memory clinic in Malmö, southern Sweden.
Participants: A purposive sample of five male participants with DLB between the ages of 78 and 88 years and disease duration of 1.5-7 years.
Results: Three themes were identified in relation to the participants' experiences of living with DLB: (1) disease impact, in terms of symptom experience and restricted participation and activities; (2) self-perception and coping strategies; (3) importance of others, such as healthcare, family and friends.
Conclusions: This study provides a broad insight into the first-hand experience of living with DLB and how it compares with other dementia types. Findings highlight factors characterising the disease experience and well-being, and how persons with DLB address challenges arising secondary to disease. These findings are important for both research and clinical practice, demonstrating the feasibility of direct involvement of DLB persons in identifying important aspects of care, which include improved healthcare services.

Full text

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LarssonV, etal. BMJ Open 2019;9:e024983. doi:10.1136/bmjopen-2018-024983
Open access
Living with dementia with Lewy bodies:
an interpretative phenomenological
analysis
Victoria Larsson, 1 Axel Holmbom-Larsen,1 Gustav Torisson,2
Eva Lena Strandberg,3 Elisabet Londos1
To cite: LarssonV, Holmbom-
LarsenA, TorissonG, etal.
Living with dementia with
Lewy bodies: an interpretative
phenomenological
analysis. BMJ Open
2019;9:e024983. doi:10.1136/
bmjopen-2018-024983
►Prepublication history for
this paper is available online.
To view these les, please visit
the journal online (http:// dx. doi.
org/ 10. 1136/ bmjopen- 2018-
024983).
Received 25 June 2018
Revised 21 November 2018
Accepted 18 December 2018
1Department of Clinical
Sciences, Malmö, Clinical
Memory Research Unit, Lund
University, Malmö, Sweden
2Department of Infectious
Diseases, Skåne University
Hospital, Malmö, Sweden
3Department of Clinical
Sciences, Malmö, Center for
Primary Health Care Research,
Skåne University Hospital, Lund
University, Malmö, Sweden
Correspondence to
DrVictoria Larsson;
victoria. larsson@ med. lu. se
Research
© Author(s) (or their
employer(s)) 2019. Re-use
permitted under CC BY-NC. No
commercial re-use. See rights
and permissions. Published by
BMJ.
ABSTRACT
Objective To explore the subjective experience of living
with dementia with Lewy bodies (DLB).
Design A qualitative study of in-depth interviews using
interpretative phenomenological analysis.
Setting A memory clinic in Malmö, southern Sweden.
Participants A purposive sample of ve male participants
with DLB between the ages of 78 and 88 years and
disease duration of 1.5–7 years.
Results Three themes were identied in relation to the
participants’ experiences of living with DLB: (1) disease
impact, in terms of symptom experience and restricted
participation and activities; (2) self-perception and coping
strategies; (3) importance of others, such as healthcare,
family and friends.
Conclusions This study provides a broad insight into
the rst-hand experience of living with DLB and how it
compares with other dementia types. Findings highlight
factors characterising the disease experience and well-
being, and how persons with DLB address challenges
arising secondary to disease. These ndings are important
for both research and clinical practice, demonstrating
the feasibility of direct involvement of DLB persons in
identifying important aspects of care, which include
improved healthcare services.
INTRODUCTION
Dementia is an umbrella term for a group of
disorders that have an impact on cognition,
memory and activities of daily life, affecting
approximately 47 million globally.1 Dementia
with Lewy bodies (DLB) is the second most
common type of neurodegenerative dementia
after Alzheimer’s disease (AD), accounting
for 7.5% of dementia diagnoses in secondary
care, although many cases are still believed
to be missed or misdiagnosed.2 Widespread
neuropathological changes are found in
DLB, resulting in certain clinical character-
istics.3 The cognitive decline is dominated
by visuospatial and executive dysfunction, in
comparison with memory and orientation
deficits often associated with other demen-
tias. There are four core additional symp-
toms: (1) fluctuations in cognition, attention
and wakefulness; (2) animated and detailed
recurrent visual hallucinations; (3) rapid eye
movement (REM) sleep behaviour disorder
leading to recurrent violent dream enact-
ment; (4) parkinsonism, involving rigidity,
slowness and frequency of falls.3 This is a
complex clinical picture, associated with
distinct challenges compared with other
dementia types in terms of clinical manage-
ment and care,4 which is indicated by higher
caregiver burden5 and poorer quality of life.6
With no prevention or cure, the mainstay of
care currently consists of providing symptom
relief and meeting care needs in order to
improve well-being for the persons and care-
givers living with the disease.
The constituents of well-being in DLB, as
well as the preferences of patients and their
caregivers, have not been extensively inves-
tigated. Most research in the field has tradi-
tionally focused on biomedical aspects of the
disease,7 and most trials still base their recom-
mendations on statistical rather than clin-
ical significance, failing to take into account
patient-related outcomes and the views of
Strengths and limitations of this study
►Interpretative phenomenological analysis was used
in order to explore the rst-hand experience of living
with dementia with Lewy bodies.
►A small purposive sample was used to acknowledge
rich accounts of illnessexperience.
►Interviews were broad and exible in nature and
allowed participants to bring up topics of personal
relevance, and were conducted in the participants’
homes to create a relaxed non-medical environment.
►Transferability was affected by excluding non-Swed-
ish speakers and by not identifying any suitable
women for the study.
►Researchers with varied competencies and back-
grounds were included to minimise potential bias
due to clinical preunderstandings in the data anal-
ysis; however, other triangulation or member check-
ing was not used.
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patients or caregivers.8 Studies which have intended to
address the wider impact of DLB disease have focused
primarily on caregiver distress and burden.9–12 The
perspective of the person living with disease has conse-
quently been overlooked, and viewpoints which are
important for guiding clinical care and to truly develop
effective clinical interventions have been missing.
One way to address these issues is to conduct research
providing personal narratives and first-hand reports of
what is it like to live with a condition and the response to
this experience.13 Using qualitative methodology such as
in-depth interviews would probably be the most suitable
approach, having the advantage of being able to explore
the complexities of these matters in detail. To date,
there are no such studies involving specifically persons
with DLB. Whether or not persons with DLB are able to
participate in this type of research, in view of cognitive
and psychiatric symptoms, therefore remains an unan-
swered question. In comparison, lived experience has
been reasonably well investigated in people with unspec-
ified dementia or AD, where specific aspects have been
explored such as coping strategies, impact on awareness,
self and identity.13–15 The generalisability of these findings
in persons with DLB can however be questioned in view
of the diverse cognitive, psychiatric and motor features
described, expected to be reflected in the subjective
disease-experience.
Therefore, this study aims to conduct a preliminary
exploration into the subjective experience of living
with DLB. Through in-depth interviews, the feasibility
of involving persons with DLB in such research will be
assessed for the first time. The analysis will further address
a specific objective of identifying factors influencing
disease-experience and well-being, information which is
important to communicate to caretakers and healthcare
professionals in order to improve the understanding of
this patient group.
METHODS
The study was reported according to the Standards for
Reporting Qualitative Research.16
Setting and participants
Purposeful sampling was used to increase the likelihood
of including participants able to provide a rich account
of their particular experience. To be considered for the
study, participants had to be (1) diagnosed with DLB
according to consensus criteria17; (2) current patients
at the Memory Clinic, Malmö, Sweden; (3) able to
consent to the study; (4) community-dwelling and (5)
Swedish speaking. Suitable participants adhering to these
criteria were identified by the senior physician respon-
sible for patients with DLB at the Memory Clinic (EL).
VL then contacted the identified patients, explaining
the study and offering participation. Participants were
recruited for as long as more information was deemed
necessary for the analytical process. Out of six persons
approached, only one person declined participation,
reason being not having the time. The five participants
were all white men between the ages 78 and 88 years. At
the time of the study, no women were identified meeting
the inclusion criteria, demonstrating the male predomi-
nance in DLB.18 All but one lived with their spouse. At the
time of the interviews, disease duration since diagnosis
was between 1.5 and 7 years.
Two quantitative measures were used to characterise
the participants of this study. Cognitive level was assessed
by the global screening instrument mini-mental state
examination (MMSE).19 The MMSE was performed
as part of clinical practice prior to the interviews and
recorded scores among the participants were between
18 and 29 points, indicating mild to moderate cogni-
tive impairment. After the interviews, participants also
completed a Quality of Life–Alzheimer’s dementia (QoL-
AD) questionnaire.20 The scale consists of 13 items rated
on a scale from 1 to 4, with total scores ranging between
13 and 52, and higher score reflecting a better quality of
life. QoL-AD was used to provide a quantitative measure
of perceived quality of life with scores ranging between
21 and 42 points. This indicates that participants had
varying levels of cognitive function and subjective quality
of life. Further demographic information has been
concealed to protect confidentiality.
Data collection
All interviews were conducted face to face by VL in the
participants’ homes between December 2015 and June
2017. Participants were encouraged to be interviewed
alone, enabling speaking freely without influence of
another person. In one case, this was not possible due to
patient request and the spouse was present throughout
the interview. In-depth interviews were conducted, each
interview starting with an open question “Could you start
by telling me a little bit about yourself?”. Thereafter, the
interviews took form of a conversation, using reflection
and open-ended questions to facilitate a flexible discus-
sion. There was no strict interview guide, but prompts and
questions were used to explore the illness experience, as
well as barriers and facilitators of well-being. Participants
were allowed to guide the interviews to topics of personal
importance with the interviewer following lead. Examples
of questions asked in the interview are shown in box 1.
The interviews continued until the open-ended ques-
tions did not give rise to any new information or under-
standings. The duration of interviews was between 60
and 134 min. A break was offered, to accommodate for
tiredness secondary to their disease; however, this was not
needed for any of the participants. No repeat interviews
were conducted. All interviews were audio-recorded and
transcribed verbatim by a professional medical secretary.
Transcripts were checked for accuracy by VL re-listening
to the interviews. Transcripts were not returned to partic-
ipants and they did not comment on findings.
Previous research has outlined a number of chal-
lenges in conducting in-depth interviews with people
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with dementia, again with a focus on people with AD.21
Considering the differing symptomatology in DLB, other
challenges were expected. For this reason, field notes
were constructed after each interview commenting on
difficulties experienced by the interviewer. Overall,
participants took interest and engaged well with the
interviews. At times cognitive difficulties influenced the
interviews, however not necessarily due to memory defi-
cits as has been seen in AD,22 but rather in losing train
of thought and due to cognitive fluctuations. Unclear
speech elaborations occurred at times, but it was found
that participants would eventually return to their prin-
cipal thought if not interrupted. For this reason, plenty of
time was offered to answer each question posed and for
the interview as a whole, to avoid missing significant infor-
mation. Many participants had soft and slow speech (due
to parkinsonism), which could lead to sentences being
inaudible or difficult to interpret. This was addressed by
asking the person to repeat himself, which also applied if
the person appeared vague or unclear for other reasons.
Contrary to our prior hypothesis, interviews were not
terminated prematurely due to excessive tiredness.
Patient and public involvement
Patients and public were not involved in the development
of this study.
Data analysis
Interview data were analysed using interpretative phenom-
enological analysis (IPA).23 This method of analysis
serves to highlight the participant’s subjective perceptual
processes involved in making sense of their life situa-
tion, consistent with the epistemological position of our
research question. In terms of the analytical process, IPA
shares elements with many other types of thematic anal-
yses, aiming to identify, analyse and report patterns within
qualitative data.24 However, IPA comes with specific theo-
retical commitments which are based on phenomenology,
hermeneutics and ideography.23 In short, this means
that IPA will give experience primacy (phenomenology)
and aspire to understand this experience in great detail
(ideography), while also recognising that this involves an
interactive and interpretative interplay between partic-
ipant and researcher (hermeneutics).25 By assuming a
link between verbal reports, thoughts and physical expe-
riences, IPA has been recognised as a particularly useful
method for evaluating people’s response to illness25 and
is therefore frequently used in health research.
The first phase of analysis consisted of VL, EL and
AH-L reading through the full transcripts to the point
of being fully immersed in the data, to be familiar with
both breadth and depth of the content. Notes were made
throughout the process, and relevant units of meaning
and emerging themes of interest were identified. Themes
were identified as those aspects of the data that captured
something important in relation to the research question.
Transcripts were coded accordingly, and a list of prelimi-
nary themes was generated. Transcripts were then re-read
several times until the authors ensured that the list was
comprehensive and that relevant extracts were compiled
for each theme. All data were coded manually, rather
than using a software program.
At this point, a fourth researcher (ELS) was involved,
to provide a validity check of analysis and interpretation.
ELS has expertise in qualitative research and read all the
transcripts to support the remaining analytical process,
including defining the final themes and manuscript
preparation. This review process was iterative, processing
back and forth between themes and raw data in order
to reach a collective agreement around the important
patterns, and to confirm the internal homogeneity and
external heterogeneity of the themes.26 Several versions
were constructed before deciding on the final thematic
structure. Examples of data extracts with their coding and
final theme are shown in table 1.
In the presented extracts throughout the manuscript
[…] indicate that some text without substantial impor-
tance has been removed, while … without brackets
indicate silence within a sentence. All data analysis was
conducted in the Swedish language using the original
transcripts. Extracts were translated only in the write-up
phase by VL who is native to the local region and has lived
many years in the UK. The translation from Swedish has
been kept as literal as possible, except where minor modi-
fications have been necessary in order to preserve conver-
sational style, idioms, colloquialisms or level of affect.
FINDINGS
Three overarching themes were identified in the partic-
ipant accounts, characterising their experience of living
with DLB: (1) disease impact; (2) self-perception and
coping strategies; (3) importance of others. Each theme
will be described in detail in separate sections.
Theme 1: disease impact
Chronic illnesses are characterised by symptoms resulting
in secondary consequences which can influence well-
being.27 The content of this theme highlights the ability
and willingness of participants with DLB to describe, in
their own voice, the experience of these symptoms and
what difficulties emerge as a result.
Box 1 Example of interview questions
Questions
Can you tell me about yourself?
Is today a good day? Why is that so?
Can you tell me about the symptoms of your illness?
Is there anything you have started or stopped doing because of your
illness?
What do you spend your days doing?
Is there anything that would make your life better the way it is now?
What would you change about your current situation if you could?
What makes you happy or makes life worth living?
How do you consider your quality of life?
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Symptom experience
Compared with accounts by other people with dementia,13
a wider spectrum of symptoms was described by the partic-
ipants of this study, with less emphasis on memory and
orientation problems. Cognitive complaints were however
articulated, and recognised in terms of forgetfulness,
difficulties remembering names, struggle in keeping up
in conversation, being inactive or passive, having slower
thoughts and visuospatial problems. Most participants
demonstrated insight into the complexities of their own
cognition and how this was influenced by fluctuations,
which could render a feeling of frustration. Fluctuations
were expressed as symptoms coming or going, variation
in attention or the feeling of suddenly losing their train
of thought. One participant described his cognitive symp-
toms like this:
I don’t think myself that I am particularly memory
deficient… I have to say… I have on the other hand
become slow… I think a little slower… sometimes I
forget… a key word which I am going to say… yes…
when I talk to people and that… but it comes soon…
in a minute or so I can fill in what was missing… that’s
what it’s like still [3]
Physical changes were highlighted, with accounts of
unsteadiness, stiffness and slowness, sometimes leading
to frightening experiences. Excessive tiredness was
profound for some, needing and sometimes debilitating
to life with lack of improvement with pharmacological
treatment. Frightening nightmares were also described,
as well as difficulties in separating dreams from reality,
indicative of REM sleep behaviour disorder. One partici-
pant described how the dream enactment meant that he
“didn’t even want to go to bed [4]”, and another how terrible
anxiety would be “left from the dream [3]” even after waking
up. Others described a natural resolution of these symp-
toms over the disease course. Participants would also,
with caution, reveal seeing things that were not there,
indicative of visual hallucinations. Insight was retained
during the description of illusions and hallucinations.
The emotional response could vary from fear to relative
indifference:
That you… see a person… in… in… in the room…
maybe I have hung… my clothes on some… on some
hanger so that it shapes a person… and then… it
follows… so suddenly that person starts walking and
become very real… but then… well… it is not un-
pleasant… not so that I am scared or anything like
that [5]
There were also descriptions of other symptoms—drop-
ping their blood pressure when standing up (orthostatic
hypotension), problems with peeing (urinary inconti-
nence), finding it difficult to swallow (dysphagia) and
feeling low in mood (depression)—all which are recog-
nised symptoms in DLB, demonstrating an ability to
self-report symptoms.
Restricted activities, participation and relationships
A distinct variation was seen in the experience of symp-
toms between participants and to what extent a symptom
would impact on life. A common denominator was
however that the most troubling symptom would be
significantly restrictive in character and limit activity,
participation and social engagement. Many participants
experienced deteriorating motor function with wors-
ening gait and balance, resulting in falls and injuries.
Participants’ accounts would indicate subsequent fear
of falling, which in turn led to risk behaviours such as
moving around slower, using walking aids or completely
refraining from leaving the house. This would be ampli-
fied in the presence of external barriers, such as outdoor
environments not supporting participants’ requirements,
for example, lack of wheelchair access and uneven pave-
ments. Reduced mobility would diminish independency
and self-sufficiency, and also prevent travelling to visit
Table 1 Example of data extracts and coding with theme
Data extract Coding Theme
Yes… it is called Lewy body dementia but I think that’s so rotten… if you tell colleagues
then they change so that you have Lewy body dementia so they… then… then they will
put a mark in your forehead… dementia that’s no point… no point in telling him…that’s
too complicated… he will never get it… or a joke or something funny… there’s no point…
he won’t get it anyway… and… it’s not true… because you will… I think but maybe the
surroundings don’t… but they… in your own eyes… you have to protect yourself… in your
soul… against this… dementia… mark [3]
Stigmatisation Self-perception
and coping
I probably could say that… when it comes to… activities at the interest of the family for
example paying bills and things like that then I have consciously trained you (turns to wife)
Because she had no idea about it […] I used to take care of it [5]
Changing roles
Important in life… very… existential question (mumbles) ah, what is important in life…
damn… what can I say? Yes… just live! […] Yes… what can I do about it… there’s nothing
to do then… more than maybe I could improve the possibilities of living a little bit longer…
but probably you can’t… not at least in my time right… but I will have to live the life I can
live… I can’t understand how you can think in any other way… we live in the now… you
can’t live somewhere else [1]
Acceptance
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friends and family, leading to increasing isolation and
reduced quality of life. Participants also depicted personal
psychological barriers, for example, not attending an
event because of the potential social inconveniences that
would arise, and a sense of being a burden:
I get worse in my balance… when I was like that…
then people are rushing to help me… I was probably
sitting five rows down or three… and then people will
help me up the stairs… and then the wheelchair is up
there… then there’s no problem… there are eleva-
tors… and the mobility services work… but I want it
less and less… I don’t want to go there… I think it…
it causes such hell of a sensation… people needing
two living supports to get somewhere [3]
Cognitive deficits also contributed to limited interac-
tions with others. In other studies, this has often been
attributed to memory or language deficits, affecting
communication with others.28 For the participants of this
study, the primary cognitive culprits were instead identi-
fied to be excessive tiredness, reduced mental speed and
passivity, which was described as risk of falling asleep, not
following conversations and reduced interest in the social
situation. These cognitive barriers, limiting meaningful
interactions, could ultimately result in withdrawal from
social settings:
I am… unfortunately very lonely […] yes… I had
this card playing gang… but I’ve let that go because I
can’t hear what they say… I think I told you before…
so I can’t give fun replies to jokes […] it passes by…
it goes so quickly so that when I have finally come up
with what reply I am going to give… then they have
already moved on […] I don’t go there anymore […]
It is sad… very sad [3]
Overall, there was a recognition that the disease process
generates a wide range of symptoms, which are challenging
to the person due to the resulting physical and social
consequences. These potential losses would however also
be influenced by personal qualities, attributes and beliefs
of the person living with disease, representing a psycho-
logical aspect of disease experience, outlined in theme 2.
Theme 2: self-perception and coping strategies
The experience of self in dementia has been described
widely in the literature and is a complex concept.15 29–32
There is no consensus of how to define self in dementia,
with various theoretical models proposed, as well as a
continuous debate as to what extent the self persists or
diminishes in people with dementia.15 30 33–35 For the
purpose of this study, self has been defined broadly as a
multifaceted concept including sense of identity, personal
beliefs about one’s attitudes, skills and traits, as well as the
self being a reflection of interactions with others. A sense
of self was identified in all participants throughout the
interviews, regardless of cognitive dysfunction, suggesting
that this does not necessarily weaken because of DLB
disease. Take for example how one participant, while
describing disease-related changes, also expresses sense
of self:
So that… the disease has taken a place in my life of
course… it… and I regret that I can’t cycle and drive
the car and those things… it… it has been the big
change really in my life… that I can no longer get
out. In forests and land in the same way as before… I
am a nature person who listens to small birds and big
birds and animals on the whole [5]
Threatened self-perception
Disease-related changes, both cognitive and physical,
were found to threaten self-perception, in the way that
they were felt to influence identity, skills and traits.
Cognitive function, in particular memory, has been iden-
tified important for sense of self, as it is important for
the personal narrative.33 One participant described his
concerns:
I noticed a difficulty in remembering names… this is
what I was most worried about… because it wasn’t…
well… it was my memory… which is the part of my
body that I have been working the most with [2]
Physical or cognitive changes could also lead to an
inability to provide for the household, being less account-
able and having less responsibilities. This could threaten
the perceived self and create a feeling of being a burden
for those around, as expressed by one participant:
It is tiresome for my spouse […] We would both be
better off […] Well… I have been in heaven here
when she has been managing it […] It will be a lit-
tle different to come to a place where… group liv-
ing… yes… well I have to take the consequences of
that […] As we are… my spouse is locked down as a
result… if she need to drive… she doesn’t dare being
gone for too long [4]
Sense of self was also affected by how participants
believed others viewed them and their illness. Some
expressed how the dementia term, and how they thought
others interpreted this, was problematic. The word was
related to stigmatisation and sometimes the feeling that
others would only approach with caution:
Participant: Now everyone knows that I have a disease
right but we never speak about it… then you have to
be a bit more pally so to say
Interviewer: Why do you not talk about it?
Participant: Insecurity? What can you say? It is
embarrassing?
Interviewer: For you or for them?
Participant: For them… maybe they think it’s embar-
rassing for me too
Interviewer: Would you think so?
Participant: No… I have a disease here in the head
and it causes some problems and so on… but I live
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a life… I know what my name is… it is a lot I don’t
know anymore but that doesn’t matter [1]
Another person described it as having a “mark in your
forehead… dementia that’s no point… he will never get it [3]”,
indicating a feeling that others can assume that dementia
inevitably implies a loss of function to a point where
meaningful interaction is no longer possible. Participants
generally expressed a belief that those around, such as
family or colleagues, have an exaggerated or mistaken
view of what the disease actually entails. This was some-
times associated to perceived physical and psychological
exclusion, contributing to loneliness and unhappiness.
Facing this, some participants maintained empathetic
to those around who they felt did not understand them,
suggesting intact mentalising processes and emotional
cognition:
I have friends who… who will say 'can you find the toi-
let'… that’s a given right… that I can find the toilet…
I have been there several times right… but obviously
they have all the reasons for suspecting that I would
not be able to find the toilet if I am sick and strange
right… so that… it’s hard [1]
Strategies and coping
Despite negative experiences due to the illness, some
participants maintained an air of optimism and declared
a sense of well-being. These participants were identified
to adopt strategies and coping mechanisms to handle
symptoms and threats to self-perception, and in doing
so refused to passively accept disease-associated changes.
This is similar to findings in the wider field of dementia,14
and contests a view often portrayed by the public, where
persons with dementia are simply submissive sufferers.
A number of specific strategies were identified, which
served to promote positive self-perception and sense of
coherence. These involved active fighting strategies such
as emphasising personal attributes and seeing yourself as
an active contributor, as well as strategies protecting the
self by acceptance, letting go of control or avoidance.
Some participants talked about being fundamental
optimists and reflected the importance of valuing their
own personality and attributes. This included expres-
sions such as “deciding to have a smile on my lips [5]” and
communicating the importance of claiming responsibility
for their own happiness and to give life a meaning. Most
talked about this as an attribute from the past, which
was interpreted as something they continued to actively
engage throughout their disease course. Another active
strategy to demonstrate self-worth was to stand up for
yourself in the case of maltreatment, exemplified by this
otherwise negative healthcare system encounter by one
participant:
There is a really long corridor stretching though the
whole house […] And then he remembered that he
bloody well was going to speak to me too… so then
he screamed… so that it echoed through the whole
building there ‘you there… don’t forget to increase
that… those tablets you’re taking… you should take
three instead of two!’ […] I thought that was so in-
credibly tactless… stand there and scream in the
entire corridor in that… eh… indiscrete really indis-
crete way… I was deeply deeply affected by this […]
I was then invited for a return visit and I phoned and
said ‘I never want to meet that man’ […] So I ended
the contact [3]
Some participants had active roles that they were
striving to maintain regardless of the disease process.
By doing so, participants would resist the notion
of becoming passive bystanders throughout the
disease course. This was particularly prominent in one
participant who was still working, where the interview
would largely focus on different strategies to allow him
doing so:
Participant: Without it I would have been dead
Interviewer: Do you think so?
Participant: Yes, I definitely think so… braindead
Interviewer: How do you mean?
Participant: Well… you have… it is what I think about
every day… and I look into the future all the time…
we are growing and growing… and the growing one
is me [2]
Other participants would find or develop new roles.
This could involve joining clubs or societies to seek out
new acquaintances and resist isolation, or even partake
in dementia research, anything where a meaningful role
could be found.
For many, one way of coping with disease-related
changes would be to acceptance and focus on the
present, rather than future or past, without judgement.
Acceptance involved that of changes in self, or personal
identity, due to disease:
I have always despised people who don’t work hard
and who slept… and now I sleep a lot… and I feel
that when I wake up in the afternoon… then I’m on
the ball [2]
Acceptance also comprised adjusting general expecta-
tions and appreciating the good things in life, as it has
become, despite illness and ageing. Part of this encom-
passed constructing new values in life to better suit
current function and situation, such as one participant
who reasoned like this:
Interviewer: Is there something else that you feel you
can no longer do that you used to do?
Participant: I can no longer drive a car […]
Interviewer: Do you miss it?
Participant: Well not really… no I don’t… I shouldn’t
drive a car… why would I do that… it is foolish to
drive a car [1]
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Another aspect of acceptance was to let go of control,
and instead allowing the spouse or healthcare profes-
sionals to be in charge of care. For some participants, this
insight came as a surprise as it did not reflect their ordi-
nary personality. However, by liberating oneself from the
responsibility of the illness, participants could perhaps
focus more on positive aspects of life, despite deterio-
rating function.
Theme 3: importance of others
Preservation of self throughout the disease course has
been described to require the cooperation of others,
making the self vulnerable to the actions and behaviours
of others.35 While positive actions from others can be
helpful in maintaining sense of self, a malignant social
environment can therefore have detrimental effects.36
From our participants’ accounts, it was identified that the
actions of others would consequently be relevant for the
overall disease experience and well-being.
Interactions with healthcare played a particular part for
many and the varying encounters, good and bad, would
be narrated throughout the interviews. Varying levels of
negative experiences would be portrayed with situations
where the respect for the person was overlooked would
particularly result in an overall poor relationship. One
participant described how around the time of his diag-
nosis “the children were summoned and he (the doctor) gave
a lecture on how badly I would end up […] to quickly deterio-
rate and become a demented old man [3]”, undermining the
participant’s autonomy. A number of participants also
experienced lack of competency around the DLB diag-
nosis. This was sometimes also associated with experi-
encing a delayed diagnosis and inappropriate or lack of
treatment, something which was negatively perceived and
created insecurity.
Contrary to this, others would describe healthcare
interactions where respect and shared decision-making
served as the foundation. Respect was interpreted to be
conveyed in the communication style; listening, engaging
with person and relatives, using lay-man terms and
reasoning. One person described his experiences:
I have never seen such a doctor… do you under-
stand… she was remarkably normal right… she
would talk as if she talked with anyone or anything
right […] Yes it was really good… totally fantastic…
and then she said ‘I can take you on’ and that was
completely something else […] She pays… sorry…
she behaves as any other person right… those bloody
doctors don’t… they come there and swank… most
of them do… don’t they? [1]
To be treated with respect, regardless of the illness, was
linked to trust. Within the healthcare services, structural
matters such as good availability and regular commu-
nication were identified to ensure a trusting relation-
ship. Within the personal sphere, the spouse was often
described as providing physical and psychological care,
as well as reducing the need for formal caregivers in the
home. Other relationships were also classified as impor-
tant, and although they rarely bore the equivalent signif-
icance of a partner, they would be important means for
allowing social participation and partaking in activities
outside of the home. The flip side of trusting others
would be the resulting vulnerability since loss of this
person could result in both despair and isolation:
I have met a… girl I have to say […] And she was em-
ployed by… social services… is that the name? […]
She came and sometimes didn’t… and then we end-
ed up on speaking terms… and so we… she has been
very very helpful… extremely helpful and driven me
around in the wheelchair without complaining… in
sun and rain and we have been to the cinema lots of
times… and we have been to… yes… concerts […]
It is more or less over […] She switched jobs […] So
that… I am unfortunately very lonely [3]
Social and psychological isolation was expressed and
viewed as negative consequences of the illness, with
less friends, family or former colleagues reaching out
or wanting to remain in contact. For the eldest of the
participants, there was also an acknowledgement that age
itself would lead to a natural reduction of friends and
acquaintances.
Overall results
Conceptually, the three themes outlined are thought
to be dynamically related rather than independent to
each other. Figure 1 illustrates the imagined sequence
whereby the disease process generates symptoms which
lead to a change in function and behaviour (theme 1).
These changes can in turn threaten and alter self-percep-
tion, leading to a need for developing coping strategies
(theme 2). This relationship is envisaged as bidirectional,
in that internal processes regarding self-perception can
similarly influence the consequences of disease. More-
over, external processes such as family, healthcare and
society will feed into the sequence, also having an effect
on self-perception and the disease experience (theme 3).
DISCUSSION
This study provides a broad insight into the first-hand
experience of living with DLB and demonstrates the feasi-
bility of conducting in-depth interviews in this patient
population. Three major themes were identified from
the interviews: (1) disease impact, in terms of symptom
experience and restricted participation and activities; (2)
self-perception and coping strategies; (3) importance of
others, related to respect and trust for those around. While
previous qualitative studies in persons with dementia have
elicited similar concepts to those found here,13 14 no study
has explicitly focused on persons with DLB. Specific find-
ings in this study include a greater variety in symptoms,
leading to different barriers influencing well-being. For
example, previous studies have attributed loss of confi-
dence in moving outside due to fear of getting lost,37while
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8LarssonV, etal. BMJ Open 2019;9:e024983. doi:10.1136/bmjopen-2018-024983
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the participants of this study identified fear of falling and
risk of being dependent on others as the major concern.
Similarly, participants expressed not being able to partake
in social situations because of the slowness in articulating
thoughts and not keeping up to speed with the conversa-
tion, rather than not knowing or remembering what to
say. Furthermore, the first-hand descriptions of the wider
symptom complex such as sleep disorders or visual hallu-
cinations have been relatively absent from the literature,
which is important as they characterise the illness experi-
ence in DLB. It also highlights the importance of symp-
tomatic relief for a wide array of symptoms, including
those which are non-cognitive in nature and sometimes
under-recognised.4
Well-being has traditionally been defined using a
biomedical approach where quality of life has been
assumed linear to physical and cognitive functioning. For
persons with a progressive neurodegenerative disorder,
this view would imply that quality of life decreases as the
condition worsens and that good quality of life cannot be
achieved in presence of these deficits.38 This study, and
the works of others, suggest that this disease-orientated
approach is inaccurate.39–41 Instead, well-being is better
defined, as suggested by WHO,42 as a composite of phys-
ical, psychological and social well-being. The findings of
this study are in line with this view, demonstrating that
the impact of disease entails more than the experience
of symptoms alone. For example, although DLB leads to
deteriorating physical function and reduced mobility, it is
the effects on social engagement which was demonstrated
to be primarily linked to well-being, similar to findings
in other patient groups.43 44 This can be encouraging as
it means that well-being is not simply a result of illness
itself, and could therefore be both dynamic and modi-
fiable, despite progressive neurodegeneration. Hence,
factors unrelated to the disease process could counteract
the consequences of the disease.
Similar to studies in other progressive illnesses, this
study showed that DLB disease can threaten self-percep-
tion due to the struggles and losses of physical, social and
psychological character, leading to loss of self, reduced
self-worth, withdrawing behaviours and non-participa-
tion.15 27 34 This necessitates the development of coping
strategies in order to go through this process and still
maintain the qualities that attribute and define you as a
person (theme 2). Active contesting strategies consisted of
standing up for yourself, demonstrating your own worth,
reaching out to others or finding new motivations and
roles. Others would foster strategies of acceptance of the
current situation, or even avoidance and withdrawal. This
also included adapting to the current situation, adjusting
life goals and reappraising one’s ability and altering
expectations, which are general strategies recognised in
the literature to avoid disappointment.45 Because sense
of self is part of a social process, the person is confronted
with the task to find a meaningful role in their trans-
formed social context. For participants in this study who
employed this strategy, it manifested as exploring novel
or different responsibilities or seeking out other enjoy-
ments or social connections, in order to promote positive
self-perception. Managing the changes in self-percep-
tion, using successful coping strategies, can therefore be
considered as one way of improving well-being in DLB.
The disease experience was also dependent on the coop-
eration and support from others; family, friends, health-
care and society (theme 3). Feeling misunderstood or
not respected by others would lead to behaviours such as
withdrawal, avoidance, lack of trust and inflamed self-per-
ception. In contrary, avoiding disempowerment, labelling
or depersonalisation would enhance respect and trust.
Participants recognised that the progressive nature of
the neurodegenerative disease would require help from
others to support functions of daily living. However, there
was a wish for this support to be given respectfully and at
a level of the ability of need in order to maintain inde-
pendence, dignity and sense of self, similar to findings in
studies of other people with dementia.46
A purposive and fairly homogeneous small sample was
selected according to the recommendations for using
IPA, allowing full appreciation of each participant’s
account.23 Some variation was demonstrated in cognitive
level and subjective quality of life measured with QoL-AD,
meaning that differing perspectives were viewed. With
only slight information added by the final interview,
sample size was deemed adequate for the purpose of
this study. Nevertheless, in view of the broad symptom
Figure 1 Experience of living with DLB. The ongoing disease-process is generating symptoms inuencing function and
behaviours. This leads to secondary consequences relating to sense of self and well-being, a relationship which is bidirectional.
External processes can feed in to this model, in turn inuencing lived experience and sense of self.
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and severity spectrum of DLB, part of the study findings
might not be generalised to the entire DLB population,
but are primarily applicable to patients resembling those
within this study. Transferability was affected by excluding
non-Swedish speakers and by including male participants
only, due to not finding suitable females for the study.
The homogeneity in living situation could also influence
the results, with all five participants living at home where
four together with a spouse. Furthermore, verbal commu-
nication was well preserved perhaps suggesting a milder
disease stage. However, it should also be recognised that
persons with DLB can have an unpredictable disease
trajectory, where the disease stage can be difficult to iden-
tify using current parameters. This was manifested in this
study population, as one participant unexpectedly passed
away only few weeks after being interviewed.
Interviews were conducted at home to create a relaxed
non-medical setting, making the participants comfortable
to talk about their experiences on a personal level. In
view of the exploratory nature of this study, the interviews
were flexible and guided by the participants which was
an advantage as there was no prespecified agenda. It was
recognised in the planning stages that although VL did
not have a prior relationship with the participants, being
a doctor and a PhD student affiliated to the memory clinic
could itself influence the interview situation.47 However,
the presence of strong negative perceptions indicate
that participants still felt free to express their views.
Conducting repeat interviews would have been useful
for validity and credibility, and to give an opportunity to
assess consistency in the views expressed, particularly with
regards to cognitive impairment. Repeat interviews could
also have addressed longitudinal illness experience,
something which was disregarded in this study.
IPA is a flexible and versatile research approach for
understanding people’s experiences and how they
make sense of these.25 It has been widely used in health
research and deemed suitable for the research question.
Findings were presented together with quotes from the
participants, to illustrate that pre-existing theoretical
concepts were not imposed on the participants’ experi-
ences, ensuring integrity of the analysis. Nevertheless, IPA
involves an interpretative analytical process, meaning that
viewpoints and pre-existing understandings within the
research team can bias the analysis and final results.24 VL
and AH-L are clinical doctors and EL is a senior clinician
and professor in cognitive disorders, all with experience
of patients with DLB. In addition, EL has a prior relation-
ship with the participants which could influence the anal-
ysis. However, ELS is an associate professor in community
medicine and has expertise in qualitative research but
not in DLB, and therefore helped minimise the bias that
the clinical preunderstanding of the others could cause
as well as ensuring that the final themes covered all data.
Implications
Despite increased emphasis on user involvement, there
are few studies focusing solely on the views of DLB
persons in terms of illness experience, care and treat-
ment, contributing to ignorance and stigma.8 The find-
ings demonstrate that persons with DLB are able to
provide relevant accounts in an interview setting, which
is encouraging and should influence both qualitative and
quantitative research in the future.
Findings in this study also have implications for clin-
ical practice. Ignorance within the healthcare setting was
identified to result in delayed or incorrect diagnoses and
subsequently inadequate treatment, similar to findings in
a survey-based study.10 Further clinical support and educa-
tional resources are therefore required for those settings
where persons with DLB can be encountered, including
both primary and specialist care settings. Continuous care
should ideally be provided by physicians experienced in
the complex management of these patients. Other than
pharmacological management, persons with DLB might
also benefit from counselling, psychological support or
goal-oriented rehabilitation,48 particularly since this study
has demonstrated the use of coping strategies to manage
disease-related changes.
The experience of stigma and being misunderstood
reflects the unawareness within wider society for the
many expressions of dementia. This is reflected also in
the lack of voluntary organisations providing support for
those affected by DLB, compared with for example AD, in
many parts of the world. In view of the historically nega-
tive connotations of the dementia term, one initial step to
increase public awareness could be to transition to using
neurocognitive disorders, as suggested by the DSM-V.49
CONCLUSIONS
This study demonstrates for the first time the feasibility in
conducting in-depth interviews with persons with DLB, and
outlines areas of importance for the disease experience. It
was found that symptoms experienced were different to those
in other types of dementia, resulting in distinctive physical,
cognitive and social consequences. The overall disease expe-
rience and well-being were subsequently found to be depen-
dent on self-perception and successful coping mechanisms,
as well as the views and actions of those around the person.
These findings have implications for both research and clin-
ical practice, highlighting the importance of direct involve-
ment of DLB persons in identifying suitable healthcare
interventions. The aspiration is that this can inspire future
work, such as exploring the patient perspectives on pharma-
cological and non-pharmacological management of disease.
Acknowledgements The authors are grateful to the participants for taking part
in these interviews. Many thanks also to Ingrid Fioretos, Eva Granvik and Andreas
Jönsson for contributing with comments to this manuscript.
Contributors EL conceived the study. Data analysis was done by VL, AH-L, ELS and
EL, with interpretation supported by GT. The initial manuscript draft was prepared
by VL, with critical revisions for intellectual content by ELS, AH-L, GT and EL. The
nal version was approved by all authors.
Funding This study was nanced by the Swedish Research Council
(Vetenskapsrådet no. 523-2010-520) and Regional Funding provided by the
Southern Health Care Region (Södra sjukvårdregionen).
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10 LarssonV, etal. BMJ Open 2019;9:e024983. doi:10.1136/bmjopen-2018-024983
Open access
Disclaimer All researchers acted independently to the funding bodies. The funding
agencies had no role in study design; in the collection, analysis and interpretation
of data; in the writing of the report; or in the decision to submit the article for
publication.
Competing interests None declared.
Patient consent Obtained.
Ethics approval This study was approved by the local institutional review board
(IRB) in Lund, Sweden (dnr 2015/895).
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement No additional data are available.
Open access This is an open access article distributed in accordance with the
Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which
permits others to distribute, remix, adapt, build upon this work non-commercially,
and license their derivative works on different terms, provided the original work is
properly cited, appropriate credit is given, any changes made indicated, and the use
is non-commercial. See: http:// creativecommons. org/ licenses/ by- nc/ 4. 0/.
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