13th Annual Interdisciplinary Research Conference:
Optimising Health in the 21st Century
The Person with Dementia:
The personal impact of diagnosis disclosure.
Gary Mitchell BA.; BSc.; MSc.; RN
Patricia McCollum RGN.; RCNT.; RNT.; BSc; Dip. App. SS; MA
Catherine Monaghan MSc.; PGCert.; BSc (Hons) Specialist
Practice; Dip in Community Nursing.; RMN.; RGN
MITCHELL, MCCOLLUM & MONAGHAN
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The Social Misconception of
Dementia
 58% of carers surveyed across Europe identified
dementia as part of normal ageing process (Bond et
al, 2005).
 “it is far more than simply memory loss…it is a real
disease, not a normal part of ageing” (Bryden, 2005)
 Dementia does not consistently remain personcentred.
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Perspective of Carers
 In Brazil only 58% of carers of people with dementia
believed diagnosis should be disclosed (Shimizu et al,
2008).
 In Taiwan this number was 76% (Lin et al, 2005),
Finland 97% (Laakkonen et al, 2008), Belgium 43%
(Bouckaert and van den Bosch, 2005) and Italy 39%
(Pucci et al, 2003).
 Widespread differences in perspectives of carers.
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Perspective of Physicians
 Van Hoult et al (2007) 58% of GP’s in a study in the
Netherlands felt confident in making a diagnosis.
 Turner et al (2004) 33% of those surveyed in a Scottish
study felt a diagnosis should be made by a specialist.
 In Brazil, Raicher et al (2008) found that only 45% of
patients were informed of diagnosis.
 Teel (2004) in Kansas, USA a physician stated: “No-one
wanted a diagnosis of Alzheimer’s disease”.
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Diagnosis
 Diagnosis is the gateway to living-well with any
condition.
 Widespread disparity in the disclosure of diagnosis
across the world (Bamford et al, 2004).
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Methodology
 Two separate themed searches were undertaken for
literature review:
A.
B.
The patient’s attitude to disclosure of diagnosis.
(4 studies identified from 1996)
The patient’s experience of a diagnosis.
(12 studies identified from 2006)
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Theme A: Patient Attitude
 Four studies in conclusion that participants generally
wish to know diagnosis.
 Dautzenberg et al (2003) 96% felt it was important to
know their diagnosis.
 Pinner and Bouman (2003) report 92% wished to be
informed.
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Theme A: Patient Attitude (2)
 Elson (2006) found that 86% of participants favoured
disclosure of a disease relating to memory problems.
HOWEVER this fell to 69% with disclosure of
Alzheimer’s disease specifically (Elson, 2006).
 Marzanski (2000) reported 70% of people were in
favour of diagnosis disclosure.
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Theme A: Patient Attitude (3)
 Few studies in the literature conducted in relation to
what people with dementia want with regards to
diagnosis disclosure.
 Plethora of research concerning views of carers and
physicians.
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Theme B: Patient Experience (1)
 In Stark contrast to Theme A, many studies have been
conducted regarding the experiences of a person
receiving a diagnosis of dementia.
 12 studies were identified since 2006 that sought to
establish the person’s feelings after diagnosis.
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Theme B: Patient Experience (2)
 The feeling of “shock” and “denial” pervaded the
primary literature.
 “It’s a lot of information; it’s painful information…the
brain shuts down and says I can’t take any more bad
news” (Aminzadeh et al, 2007).
 “It’s old age and not Alzheimer’s, its just the memory
isn’t there” (Frank et al, 2006).
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Theme B: Patient Experience (3)
 The term “Alzheimer’s disease” was found to be much
more likely to cause a negative emotional response as
opposed to “dementia” or “mild cognitive
impairment”.
 “It’s a frightful name, it just makes you want to curl
up…when you think of Alzheimer’s disease” (Langdon
et al, 2006)
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Theme B: Patient Experience (4)
 Shame and Stigma appear synonymous with some
experiences of diagnosis. Langdon et al (2006) state
participants felt they would be perceived as:
“gaga…crackers…screw loose…need to be locked
up”.
 “I still have enough intelligence, you know to be a
person, and not just someone you pat on the head as
you go by…its devastating”. (Beard and Fox, 2008).
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Theme B: Patient Experience (5)
 Stigma extended to deprivation of liberties: “You
can’t do what you want, you have to do what someone
else wants, and they have to do it for you” (Beard and
Fox, 2008).
 Surprisingly the feeling of guilt was also prevalent: “I
just want to stay a grandmother for my grandchildren”
and “I can see the hardest part of this will be for my
wife” (Derksen et al 2006).
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Theme B: Patient Experience (6)
 Beneficial to diagnosis, more than half of the studies
identified participants who adopted coping strategies
such as undertaking new hobbies and joining support
groups.
 “I’m still the same person I’ve always been…I think the
more you know…the better you are going to be able to
make a decision when issues start” (Beard and Fox,
2008).
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Theme B: Patient Experience (6)
 The enabling of “future-planning” was an often cited
benefit with people able to “get your house in order”
and “enjoy dancing once a week” (Moinz-Cook et al
2006).
 Lingler et al (2006) found for some people it was “a
great relief, I haven’t worried since” regarding formal
diagnosis.
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Kitwood (1997) and Malignant Social
Psychology
 Malignant social psychology refers to a social environment
in which interactions and communications occur which
diminish the "personhood" of those people experiencing
that environment.
 In many cases these "malignant" interactions are not
perpetrated from an intent of malice but rather are
brought about through lack of insight or knowledge of the
negative effects.
 The presence may be linked to the culture of the
environment and this has been well described in the
dementia field.
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Kitwood (1997) and Malignant Social
Psychology
 Disempowerment:
“socially demoted” (Beard and Fox, 2008), “I had to
hand my financial affairs to others” (Derksen et al,
2006) and “they drugged her up” (Moniz-Cook et al,
2006)
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Kitwood (1997) and Malignant Social
Psychology
 Infantilisation
Through relatives and physicians shielding the person
from their diagnosis.
 Labelling, Withholding and Invalidation
The person should remain a person in spite of diagnosis.
Society is becoming more hyper-cognitive and people
with dementia should not be re-categorized to a passive
role.
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Conclusion
 “The voice of the relative is, in general, much more powerful
than the voice of the person with dementia” (Cox, 2003).
 Non-maleficence vs. Autonomy
 Advanced Directives.
 No evidence of advanced depression or suicidal tendencies
following diagnosis.
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Conclusion
 Terminology of “Alzheimer’s disease” appears to
draw more fear from population.
 Negative feelings in the literature appear more to do
with how the person is treated following diagnosis as
opposed to the illness itself:
vis-à-vis:
MITCHELL, MCCOLLUM & MONAGHAN
WE MUST ALWAYS CONSIDER THE PERSON WITH
DEMENTIA.
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References
Theme A:
 Marzanski (2000) ‘Would you like to know what is wrong with you? On
telling the truth to patients with dementia’. Journal of Medical Ethics, 26, pp.
108-113.
 Dautzenberg et al (2003) ‘Patients and family desire a patient to be told the
diagnosis of dementia: a survey by questionnaire on a Dutch memory clinic’.
International Journal of Geriatric Psychiatry, 18, pp. 777-779.
 Pinner and Bouman (2003) ‘Attitudes of patients with mild dementia and
their carers towards disclosure of the diagnosis’. International
Psychogeriatrics, 15, pp. 279-288.
 Elson (2006) ‘ Do older adults presenting with memory complaints wish to
be told if later diagnosed with Alzheimer’s disease?’ International Journal of
Geriatric Psychiatry, 21, pp. 419-425.
MITCHELL, MCCOLLUM & MONAGHAN
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References
Theme B:
 Aminzadeh et al (2007) ‘Emotional impact of dementia diagnosis: exploring persons
with dementia and caregivers’ perspectives’. Aging and Mental Health, 11, (3), pp. 281290.
 Barrett et al (2006) ‘Short-term effect of dementia disclosure: how patients and
families describe diagnosis’. Journal of American Geriatrics Society, 54, (12), pp.19681970.
 Beard and Fox (2008) ‘Resting social disenfranchisement: negotiating collective
identities and everyday life with memory loss’. Social Science and Medicine, 66, pp.
1509-1520.
 Campbell et al (2008) ‘Dementia, diagnostic disclosure and self-reported health
status’. Journal of American Geriatrics Society, 56, (2), pp.296-300.
 Carpenter et al (2008) ‘Reaction to a dementia diagnosis in individuals with
Alzheimer’s disease and mild cognitive impairment’. Journal of American Geriatrics
Society, 56, (3), pp. 405-412.
 Derksen et al (2006) ‘Impact of diagnostic disclosure in dementia on patients and
carers: qualitative case series analysis’. Aging and Mental Health, 10, (5), pp. 525-531.
MITCHELL, MCCOLLUM & MONAGHAN
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References
Theme B:
 Frank et al (2006) ‘Impact of cognitive impairment on mild dementia patients
and mild cognitive impairment patients and their informants’. International
Psychogeriatrics, 18, (1), pp. 151-162.
 Harman and Clare (2006) ‘Illness representations and lived experience in earlystage dementia’. Qualitative Health Research, 16, (4), pp. 484-502.
 Langdon et al (2007) ‘Making sense of dementia in the social world: a qualitative
study’. Social Science and Medicine, 64, pp. 989-1000.
 Lingler et al (2006) ‘Making sense of mild cognitive impairment: a qualitative
exploration of the patient’s experience’. The Gerontologist, 46, (6), pp. 791-800.
 Moniz-Cook et al (2006) ‘Facing the future: a qualitative study of older people
referred to a memory clinic prior to assessment and diagnosis’. Dementia, 5, (3),
375-395.
 Vernooij-Dassen (2006) ‘Receiving a diagnosis of dementia: the experience over
time’. Dementia, 5, (3), pp. 397-410.
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References
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

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Bamford, C., Lamont, S., Eccles, M., Robinson, L., May, C. and Bond, J. (2004) ‘Disclosing a diagnosis
of dementia: a systematic review’. International Journal of Geriatric Psychiatry, 19, pp. 151-169.
Bond, J., Steve, C., Sganga, A., Vincenzino, O., O’Connell, B. and Stanley, R. (2005) ‘Inequalities in
dementia care across Europe: key findings of the facing dementia survey.’ International Journal of
Clinical Practice, 59, 8-14.
Bouckaert, F. and van den Bosch, S. (2005) ‘Attitudes of family members towards disclosing
diagnosis of dementia’. International Psychogeriatrics Association, 17, pp. 216.
Bryden, C. (2005) Dancing with dementia: my story of living positively with dementia. Jessica
Kingsley Publishers: London.
Cox, J. (2003) ‘Why do we ignore these ethical issues?’ Journal of Dementia Care, 11, pp. 25-28.
Kitwood, T. (1997) Dementia Reconsidered: The Person Comes First. Open University Press:
Buckingham.
Laakkonen, M., Raivio, M., Eloniemi-Sulkava, U., Saarenheimo, M., Pietilä, R., Tilvis, S. and Pitkälä,
K. (2008) ‘How do elderly spouse caregivers of people with Alzheimer’s disease experience the
disclosure of dementia diagnosis and subsequent care’. Journal of Medical Ethics, 34, 427-430.
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References
 Lin, K., Lias, Y., Wang, P. and Liu, H. (2005) ‘Family members favour disclosing the
diagnosis of Alzheimer’s disease’. International Psychogeriatrics, 17, pp. 679-688.
 Pucci, E., Belardinelli, N., Borsetti, G. and Giuliani (2003) ‘Relatives’ attitudes towards
informing patients about the diagnosis of Alzheimer’s disease’. Journal of Medical
Ethics, 29, pp. 51-54.
 Raicher, I., Shimizu, M., Takahashi, D., Nitrini, R. and Caramelli, P. (2008) ‘Alzheimer’s
disease diagnosis disclosure in Brazil: a survey of specialised physicians’ current
practice and attitudes’. International Psychogeriatrics, 20, (3), pp. 471-481.
 Teel, C. (2004) ‘Rural practitioners’ experience in dementia diagnosis and treatment’.
Ageing and Mental Health, 8, (5), pp. 422-429.
 Turner, S., Iliffe, S., Downs, M., Wilcock, J., Bryans, M., Levin, E., Keady, K. and
O’Carroll. (2004) ‘General practitioner’s knowledge confidence and attitudes in the
diagnosis and management of dementia’. Ageing and Mental Health, 33, (5), pp. 461467.
 Van Hout, H., Vernooij-Dassen, M. and Stalman, W. (2007) ‘Diagnosing dementia with
confidence by GP’s’. Family Practice, 24, pp. 616-621.
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