JA Gilmour and AD Huntington

International Journal of Nursing Practice 2005; 11: 118124

RESEARCH PAPER

Finding the balance: Living with memory loss

Jean A Gilmour RN DipSocSci BA PhD
Senior Lecturer, Massey University at Wellington,Wellington, New Zealand

Annette D Huntington RN BN PhD

Associate Professor, Massey University at Wellington,Wellington, New Zealand

Accepted for publication December 2004

Gilmour JA, Huntington AD. International Journal of Nursing Practice 2005; 11: 118124
Finding the balance: Living with memory loss
Since the late 1980s, it has been increasingly recognized that the experiences of people with dementia have been omitted
from research in the area of dementia and memory loss. More recently, it has been accepted that people with dementia
have insight into their condition and, therefore, the ability to contribute to research. A qualitative research project was
undertaken with nine participants to explore the experiences and coping strategies of people with dementia. Interviews
were undertaken and the data analysed using thematic analysis. Three major themes emerged: coming to terms with memory loss, maintaining control and independence, and the impact of illness on relationships. Understanding the reality for
people is essential given that representations of the catastrophic impact of dementia generate high levels of anxiety and
depression. Implications for nurses practice include the need for skilled, well-paced, sensitive and ongoing information
about the condition, along with the need to recognize and support the active coping strategies of people with memory loss.
Key words: coping, dementia, independence, memory loss, qualitative research.

INTRODUCTION
Illnesses such as Alzheimers disease, which cause the signs
and symptoms of dementia, are generally subtle in onset
but progressive neuronal damage leads to increasing and
disabling memory loss, disorientation and decreasing
cognitive functioning in reasoning and comprehension.
Figures related to the prevalence of dementia vary
considerably; however, the prevalence is generally
accepted as 8% of those > 65 years.1 Given the projected increase in the ageing population, dementia is
clearly a health issue of increasing importance and an area
of health care in which nurses can make a significant
contribution.

Correspondence: Jean Gilmour, School of Health Sciences, Massey

University at Wellington, PO Box 756, Wellington, New Zealand.
Email: J.A.Gilmour@massey.ac.nz

Since the late 1980s, there has been ongoing comment

about the omission of the experiences of people with
dementia in research about dementia care.27 This lack of
research interest has been attributed to two causes. First,
that interest in family caregiving and, in particular, the
burdensome aspects of care shifted the focus of research
studies away from the person with dementia, marginalizing them, albeit unintentionally.2,8 Second, there was an
assumption that the diagnosis of a dementing illness meant
a lack of insight into the impact of dementia.9 This viewpoint has been challenged by two early accounts from people with Alzheimers disease.10,11
Research into the experiences of people with dementia
can be grouped into three categories: information needs,
the impact of diagnosis on self-identity and coping strategies. Research in the United Kingdom focused on what
people knew about their illness and what they would like
to know.12 The majority of people in the study reported that

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they had had no information and wanted to be better

informed, the remainder (10 out of 30) did not want to
know what was wrong with them or receive further information. A further study found a similar division with some
participants actively seeking out information while others
only wanted to know what immediately applied to the
present situation.13 This issue of what constitutes sufficient
and appropriate information is also raised by participants
in a study who were concerned with both how they were
told about health and assessment processes and by wanting
more say and information on what was happening to them.14
The profound impact of a diagnosis of a dementing illness on a persons self-identity surfaced in a study where
people with a recent diagnosis of dementia used words
such as stupid or forgetful when describing themselves,
rather than referring to their previous or present roles and
current abilities.15 Autobiographical accounts also raise
these issues around diagnostic processes and assessments.
The author Diana McGowin writes about feeling ashamed
and Robert Davis refers to a sense of dread about the
potential loss of freedom.10,11
The development of active strategies undertaken by
people to cope with memory loss has also been reported.
Participants, who were in a very early stage of dementing
illness, talked about actively working to adapt to memory
loss by using memory aids and covering up memory lapses
by taking notes or by withdrawing from socially stressful
occasions.1618 However, maintaining an image of normality progressively became more difficult and exhausting.
The eventual disclosure of problems to other family members was associated with relief in dropping any pretence of
normality but fears about future prospects also surfaced.
It is now recognized that people with dementia have
varying degrees of insight into their condition and a partnership approach between people with dementia, their
families and health-care professionals is advocated.19,20
This has led to an increasing interest in undertaking
research into the experiences of people with dementia.12,14,15,17,18 To contribute to this essential body of
knowledge, a qualitative study was undertaken to explore
with people who have a diagnosis of a dementing illness
their experiences of living with memory loss.

METHODS
A qualitative research design was used as we wanted to
explore and make explicit the everyday experience of the
participants who were experiencing memory loss. Denzin
and Lincoln state that qualitative research involves an

interpretive, naturalistic approach to the world and that

researchers using this approach study things in their natural settings, attempting to make sense of, or interpret,
phenomena in terms of the meanings people bring to
them.21 These factors plus the focus on personal experience supported the choice of a qualitative approach.

Ethical approval
Ethical approval was obtained from university and health
authority ethics committees. Criteria for inclusion in the
study were that the participants could verbally communicate experiences and be able to indicate understanding of
the purpose of the study. Ethical issues were managed very
carefully due to the possible impact of memory loss on
informed consent. Participants were approached through
a local Alzheimers societys field officers. The participants
received written and verbal information prior to giving
consent. Family members were also involved in the initial
meeting to discuss the research and consent; however, this
process had to be managed with sensitivity to avoid undermining the participants control over the ultimate decision
as to whether to be involved in the research.
Written or taped verbal consent was gained. Verbal
consent to continue with the research was sought at each
interaction. Also, it was reiterated that the interview
could be discontinued if there was any sign of discomfort
or distress. Frequent reiteration of the purpose of the
research was considered necessary to ensure that the participants were aware of the reason for the interview.

The participants
Qualitative research traditionally has smaller numbers of
participants, as Grbich states the purpose is to select
information-rich cases.22 The characteristics of people
with memory loss meant that the number of possible participants was quite limited. Recruitment took some time,
but nine participants agreed to be in the study: five men
and four women. Their ages ranged from 5679 years.
Participants had diagnoses of Alzheimers disease, multiinfarct or frontal lobe dementia and the time from diagnosis ranged from one to eight years. All the participants
lived at home with partners, with the exception of one
woman who lived alone and had intensive support from
her daughter.

Data collection
Data collection was through semistructured interviews
using open questions. Having a structure assisted the par-

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ticipants to focus on the topic of the interview and still

allowed the researchers to respond to issues raised. The
interview questions covered areas such as the participants
experiences with memory loss, coping strategies, support
needs, concerns and experiences with health professionals. To assist the participants, the questions were provided
before the interview and many wrote reminder notes
prior to the research. Interviews varied from 30 min to
1.5 h, and were taped and transcribed. After contact by
telephone to remind participants of the research, the transcripts were posted to them for comment.

Analysis
Thematic analysis was undertaken to explore the data.
This method of analysis allows the researcher to identify
themes or patterns within the text.23 As limited information exists about the specific issues related to research and
people with dementia, interviewing techniques were constantly reviewed to guide subsequent interviews. Themes
were identified when the data collection was completed.
All texts were transcribed by the researchers, read and
compared, and preliminary themes identified. These were
then reviewed by the researchers and returned to participants and their families for comment before final development. Three clear themes emerged from the data.

RESULTS
The first theme, coming to terms with memory loss,
centres on the process of accepting a diagnosis of an illness
causing memory loss and coming to terms with what this
might mean for the future. The second theme, maintaining control, highlights the tensions between independence and needing support and the strategies employed by
people to maximize their abilities. The third theme,
negotiating relationships, focuses on the impact of illness
on interactions with friends, families and health-care
workers.

Coming to terms with memory loss

This theme centres on the process of coming to terms
with a diagnosis of a progressive, incurable illness, what
this might mean for the future and what information was
helpful.The onset of memory loss was represented by participants as a slow and subtle process.
For some participants, acknowledging that there was a
problem and coming to terms with what the diagnosis

meant was made more difficult by the lack of meaningful

information. As one person said:
But youre in the dark, I was completely in the dark. I just
didnt know what was going on . . .We got some pamphlets.
But I think I got more information from the Alzheimers Society. But I remember there was some pamphlets that we brought
home with us. But I felt terribly ignorant, because I really
didnt understand anything. But who does?
One man also talked about grappling with the diagnosis
and fears about the future, which was heightened by
media portrayals of dementing illnesses:
Lifes, by and large, its okay. But (laughs), the thought of
going down that road gives me the horrors. And what woke me
up to it is a TV documentary. I would recommend that if you
can get hold of it, then you see it. Because it documented this
Norman somebody-other, I think it was called. And Norman
had Alzheimers. And that was quite depressing, is probably
not quite the, oh, it was . . . gave me a sense of foreboding of
whats in front of me.
Documentaries about Alzheimers disease generally
focus on issues for families and present dramatic and
pessimistic scenarios with little attention paid to how
those with dementia will view the programme. The
comment about the television documentary in terms of
waking up and having a sense of foreboding as a consequence highlights the power of this medium in shaping possibilities for people that have little other
knowledge of disease processes. For another participant, dementia was a category synonymous with madness and with eventual consignment to institutional care
by strangers. This representation is a product of a particular cultural view of illnesses that affect functioning
and memory:
I think the whole class of problems that Alzheimers disease
belongs to are the most frightening name you could find in the
language, I think . . . dementia . . . Because when I was a
youngster, the whole of society didnt refer to that group of,
ah, diseases by any particular name at all . . . and as theyre
aware, it came from, you know, the adjective from that is
demented and a demented person is a loony and a loony is
somebody you put in . . . an asylum . . . Now Ive got this
strongly in my mind . . . that I am being told in the gentlest
of ways that I may be suffering from early dementia in one

Living with memory loss

form or another and I . . . I still cant . . . disconnect . . .

that word from the asylum . . .
Emotionally, learning to live with a diagnosis of dementia was a difficult process. Some people experienced periods of depression. One woman did not want to think
about the future:
Its going to happen, so when it does Ill cope with it then. So,
at the moment, I take every day as it, you know . . . I just get
on with it.
In contrast, another participant suggested that awareness of future problems was preferable for him:
. . . because you know its not the unknown that youre fearing
then . . . Doesnt make it any easier. I mean, I dont think Id
look forward to it any more. But, at least, Im aware of it.

Maintaining control
The second theme highlights the strategies employed by
participants to maximize abilities and the concurrent
tensions between a need to maintain independence and
control with the contradictory, increasing need for support in everyday tasks. The people in the study talked
about how they actively tried to manage the symptoms
of dementia to maintain control over their lives and
some degree of independence. One person identified
the various factors that influenced how well she could
function. She cited multiple tasks, tiredness and competing stimuli, such as several people talking at the same
time, as influencing the degree to which she could concentrate on the current task. A common strategy to
manage stress was to reduce household and external
activities. One man, who delivered circulars, commented on how the piles of papers in the house affected
his mood and he was seriously thinking about giving up
this work:
I like going out. But it depends, if theres too much. And Im
finding now I cant get to do it. If theres a huge pile like that
it just sort of gets to me.
Along with cutting down on activities, writing lists, notes
or keeping a diary was a frequent compensation strategy
for memory loss.
Participants discussed how, in the absence of specific
curative options, they worked to maintain their general

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health and well-being; physically, intellectually and emotionally. Activities that provided enjoyment, distraction
from other worries and satisfaction were life-long hobbies
and habits such as gardening, walking, music and communal activities. Some people talked about systemically
engaging in intellectual exercises, such as reading and
doing crossword puzzles, with the aim of improving their
memory, as has been reported in other research.1618 Mentally and physically orientated strategies such as exercise
classes, meditation and listening to relaxation tapes were
other strategies reported to provide a sense of improved
well-being:
Its the only thing Ive found, really, that, well, Im sure there
are other things, but its supposed to restore your abilities. We
do all these sorts of exercises that stretch various parts of the
body . . .Yes, well, you know, its something to do. Anyway,
its sort of given me the sense that Im actually trying to fix it.
Staying in ones own home was considered to be
extremely important. There were concerns expressed
about the possibility of having to shift residences at some
time, prompted by childrens concerns about their parents
being able to cope in the future:
Our family, a lot of people say to us, Oh, what are you doing
in this great big house? Ive probably said this to you before,
but we love this house.We love this position, and we can cope
with it, as long as [husbands name] can still mow the lawn.
In the context of a memory-affecting illness, the consequences of moving from home were much more profound
than in other circumstances because the memories of that
persons life were also lost as the visible prompts of an earlier life were removed.

Negotiating relationships
This third theme focuses on the impact of illness on the
interactions with friends, families and health-care workers. Relationships with other people were inevitably
changed with the diagnosis of an illness causing memory
loss. Frustration occurred when participants were not
able to complete usually straightforward tasks:
I suddenly realize that she asked me to do something and I
havent remembered to do either of the two things. That frustrates her a bit too, of course.

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Supportive aspects of relationships included feedback

to keep people on track, as well as managing aspects of
tasks that the people in the study could no longer do. One
person commented that the responsibilities of being in a
relationship were useful in keeping him motivated and
involved. Another person also talked about the positive
aspects of letting others know that he had memory loss
because of the difficulties in continually covering up:
If youre going to tell lies, youve got to have a good memory.
Because youve got to be able to recall what you said and it
might be different things to different people. So, youve got to
be on the ball all the time.
The major contact with health professionals was with
doctors and Alzheimers societies field officers. None of
the participants specifically mentioned nurses. Comments
on the relationship with doctors were mixed, with some
people perceiving a lack of interest in the issues around
dementia. Several of the people in the study also commented on the importance of being treated with respect
by health professionals:
Well, from my perspective, I would want to be not just a number or a name on a piece of paper. Im a person. And, as such,
youre dealing with me as a one-to-one person. Id want to be
dealt with by the health professionals that way.
Perhaps unsurprisingly, given that all the people in this
research were members of the local Alzheimers Society,
the field officers of the society were the most sourced
form of ongoing, formal support. The information provided by field officers was valuable in terms of practical
suggestions and for organizing people in memory loss
groups and for social events. In addition, the personal
qualities of the field officers was stressed and several people talked about the need to talk to a person other than
family members.

ticular point of danger raised by people in this study is the

possibility of needing to move from family homes to more
intensively supported lifestyles, such as retirement villages. Children could be sources of pressure in suggesting
that parents move, which suggests that inclusive forms of
education involving the wider community of family and
friends are important in order to resist feeling pressured
into moving prematurely into large retirement villages.
The topic of information and education highlights a gap
in health-professional support during the years between
diagnosis and the onset of severe disabilities. The issues
raised by this research about the need for information
when people are coming to terms with a diagnosis of
dementing illness is similar to other research.1214 Providing information about disease processes needs to be incremental and well-paced given the central issue of memory
loss and a reduced capacity to assimilate the information
immediately. Paradoxically, professional support was
mainly absent, apart from the role of Alzheimers Society
field workers. They are employed by voluntary organizations and have quite varied skills and experience. Participants raised issues around societal stigma in relation to
dementia. Therefore, people might choose not to use the
services of these societies. The presence of well-educated
and committed health-care professionals in the primaryhealth sector is pivotal to providing education, counselling
and referral to specialist services.
The lack of a nursing presence in the experience of
this group of participants is of concern. Nurses working in
primary-health care are in an excellent position to provide
support for people with such a complex condition. Assisting in the adjustment to the diagnosis and contributing to
the persons ability to cope would seem to draw on fundamental nursing expertise. This lack might reflect on
nurses attitudes towards dementia and also the lack of
resourcing in terms of attracting skilled nurses into this
specialty area.

Study limitations

DISCUSSION
The active strategies used by participants to maintain a
degree of control over their lives is congruent with the
findings of other research in relation to the experiences of
people with dementia.1618 People with dementia need to
feel they have some control and they develop ways of individual coping and maximizing their functioning, but the
inevitable requirements for support from others heightens
the danger of disruption of these coping strategies. A par-

This research is partial in its representation in that all participants used Alzheimers Society services, all except one
lived with family members, and all were Pakeha New
Zealanders (New Zealanders of European descent). There
is a lack of research or information generally about the
needs of indigenous peoples, such as Maori in New
Zealand, as well as the support needs and preferences of
their family caregivers. Obviously, the small number in
this study is a limitation but it might be a characteristic of

Living with memory loss

research studies using participants with conditions such as

dementia and that require the participant to reflect on
experience.

123

CONCLUSION
In the future, people will live with the diagnosis of
dementing illnesses for increasingly longer periods of
time. This research illustrates the stresses of being diagnosed with and living with dementia. Meaningful education for people with dementia and for health professionals
must include the knowledge and experiences of people
living with the condition, alongside nursing and biomedical knowledge, as with any other illness.24 As noted educationalist Paulo Friere argues:

10

Teaching is not about transferring knowledge or contents . . .

there is, in fact, no teaching without learning. One requires
the other.25
Learning from people with dementia is particularly
important given the dominant Western representations of
the catastrophic impact of a diagnosis of dementia with
subsequent generation of high levels of anxiety and
depression. Health professionals work against the grain of
these representations in the affirmation that life continues
after diagnosis with opportunities for contribution and
pleasure.

11
12

13

14

15

ACKNOWLEDGEMENT
We would like to thank Dr Verna Schofield for her advice
and support.

16

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17

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