the person with dementia: the personal impact of diagnosis disclosure

MITCHELL, MCCOLLUM & MONAGHAN 1

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; MACatherine Monaghan MSc.; PGCert.; BSc (Hons) Specialist Practice; Dip in Community Nursing.; RMN.; RGN

13th Annual Interdisciplinary Research Conference: Optimising Health in the 21st Century


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 person-centred.

The Social Misconception of Dementia


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.

Perspective of Carers


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”.

Perspective of Physicians


Diagnosis is the gateway to living-well with any condition.

Widespread disparity in the disclosure of diagnosis across the world (Bamford et al, 2004).

Diagnosis


Two separate themed searches were undertaken for literature review:

A. The patient’s attitude to disclosure of diagnosis.

(4 studies identified from 1996)B. The patient’s experience of a diagnosis.

(12 studies identified from 2006)

Methodology


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.

Theme A: Patient Attitude


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.

Theme A: Patient Attitude (2)


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.

Theme A: Patient Attitude (3)


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.

Theme B: Patient Experience (1)


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).



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)



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).



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).



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).



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.



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.

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)



InfantilisationThrough relatives and physicians shielding the person from their diagnosis. Labelling, Withholding and InvalidationThe 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.



“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.

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: WE MUST ALWAYS CONSIDER THE PERSON WITH DEMENTIA.

Conclusion


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.

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. 281-290. Barrett et al (2006) ‘Short-term effect of dementia disclosure: how patients and families

describe diagnosis’. Journal of American Geriatrics Society, 54, (12), pp.1968-1970. 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.

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 early-stage 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.

References


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.

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. 461-467.

Van Hout, H., Vernooij-Dassen, M. and Stalman, W. (2007) ‘Diagnosing dementia with confidence by GP’s’. Family Practice, 24, pp. 616-621.

References

the person with dementia: the personal impact of diagnosis disclosure

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