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Preferences regarding disclosure of a diagnosis of dementia: a systematic review

Published online by Cambridge University Press:  16 June 2014

Pim van den Dungen ,
Lisa van Kuijk ,
Harm van Marwijk ,
Johannes van der Wouden ,
Eric Moll van Charante ,
Henriette van der Horst  and
Hein van Hout
Pim van den Dungen*
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
Lisa van Kuijk
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
Harm van Marwijk
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
Johannes van der Wouden
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
Eric Moll van Charante
Affiliation:
Department of General Practice, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands
Henriette van der Horst
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
Hein van Hout
Affiliation:
Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, the Netherlands
*
Correspondence should be addressed to: Pim van den Dungen, Department of General Practice and Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Van der Boechorststraat 7, 1081 BT Amsterdam, the Netherlands. Phone: +31-20-4448199, Fax +31-20-4448361. Email: [email protected].
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Abstract

Background:

Studies in memory clinics suggest that the majority of patients would like to know of a diagnosis of dementia. It is less clear what preferences are in the community. Our objective was to review the literature on preferences regarding disclosure of a diagnosis of dementia and to assess key arguments in favor of and against disclosure.

Methods:

Systematic search of empirical studies was performed in Pubmed, Embase, and Psycinfo. We extracted preferences of individuals without cognitive impairment (general population; relatives of dementia patients; and physicians) and preferences of individuals referred to a memory clinic or already diagnosed with dementia. A meta-analysis was done using a random effects model. Our main conclusions are based on studies with a response rate ≥75%.

Results:

We included 23 articles (9.065 respondents). In studies with individuals without cognitive impairment, the pooled percentage in favor of disclosure was 90.7% (95%CI: 83.8%–97.5%). In studies with patients who were referred to a memory clinic or already diagnosed with dementia, the pooled percentage that considered disclosure favorable was 84.8% (95%CI: 75.6%–94.0%). The central arguments in favor of disclosure pertained to autonomy and the possibility to plan one's future. Arguments against disclosure were fear of getting upset and that knowing has no use.

Conclusions:

The vast majority of individuals without and with cognitive impairment prefers to be informed about a diagnosis of dementia for reasons pertaining to autonomy.

Keywords

attitude of health personneldementiadiagnosisdisclosureearly diagnosisinformed consentpatient preferenceprimary health care
Type
Review Article
Information
International Psychogeriatrics , Volume 26 , Issue 10 , October 2014 , pp. 1603 - 1618
Copyright
Copyright © International Psychogeriatric Association 2014 

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References

Albert Weale, et al. (2009). Dementia: Ethical Issues, London: Nuffield Council on Bioethics.Google Scholar
Aminzadeh, F., Byszewski, A., Molnar, F. J. and Eisner, M. (2007). Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers’ perspectives. Aging and Mental Health, 11, 281–290.CrossRefGoogle ScholarPubMed
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, 151–169.Google Scholar
Bradford, A., Kunik, M. E., Schulz, P., Williams, S. P. and Singh, H. (2009). Missed and delayed diagnosis of dementia in primary care: prevalence and contributing factors. Alzheimer Disease and Associated Disorders, 23, 306–314.CrossRefGoogle ScholarPubMed
Byszewski, A. M., Molnar, F. J., Aminzadeh, F., Eisner, M., Gardezi, F. and Bassett, R. (2007). Dementia diagnosis disclosure: a study of patient and caregiver perspectives. Alzheimer Disease and Associated Disorders., 21, 107–114.Google Scholar
Cahill, S., Clark, M., Walsh, C., O’Connell, H. and Lawlor, B. (2006). Dementia in primary care: the first survey of Irish general practitioners. International Journal of Geriatric Psychiatry, 21, 319–324.CrossRefGoogle ScholarPubMed
Carpenter, B. and Dave, J. (2004). Disclosing a dementia diagnosis: a review of opinion and practice, and a proposed research agenda. Gerontologist, 44, 149–158.CrossRefGoogle Scholar
Cooper, C., Bebbington, P. and Livingston, G. (2011). Cognitive impairment and happiness in old people in low and middle income countries: results from the 10/66 study. Journal of Affective Disorders, 130, 198–204.CrossRefGoogle ScholarPubMed
Dautzenberg, P. L., van Marum, R. J., van Der, H. R. and Paling, H. A. (2003). Patients and families 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, 777–779.CrossRefGoogle Scholar
DerSimonian, R. and Laird, N. (1986). Meta-analysis in clinical trials. Controlled Clinical Trials, 7, 177–188.CrossRefGoogle ScholarPubMed
Dungen van den, P. et al. (2012). The accuracy of family physicians’ dementia diagnoses at different stages of dementia: a systematic review. International Journal of Geriatric Psychiatry, 27, 342–354.CrossRefGoogle Scholar
Eccles, M. P., Foy, R., Bamford, C., Lecouturier, J., Steen, N. and Whitty, P. M. (2009). Improving professional practice in the disclosure of a diagnosis of dementia: a modeling experiment to evaluate a theory-based intervention. International Journal of Behavioral Medicine, 16, 377–387.CrossRefGoogle ScholarPubMed
Elson, P. (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, 419–425.CrossRefGoogle ScholarPubMed
Erde, E. L., Nadal, E. C. and Scholl, T. O. (1988). On truth telling and the diagnosis of Alzheimer's disease. The Journal of Family Practice, 26, 401–406.Google ScholarPubMed
Foy, R. et al. (2007a). Which factors explain variation in intention to disclose a diagnosis of dementia? A theory-based survey of mental health professionals. Implementation Science, 2, 31.Google Scholar
Foy, R. et al. (2007b). The development of a theory-based intervention to promote appropriate disclosure of a diagnosis of dementia. BMC Health Services Research, 7, 207.Google Scholar
Galvin, J. E. and Sadowsky, C. H. (2012). Practical guidelines for the recognition and diagnosis of dementia. The Journal of the American Board of Family Medicine, 25, 367–382.Google Scholar
Gely-Nargeot, M. C., Derouesne, C. and Selmes, J. (2003). European survey on current practice and disclosure of the diagnosis of Alzheimer's disease. A study based on caregiver's report. Psychologie & NeuroPsychiatrie du vieillissement, 1, 45–55.Google Scholar
Haw, C., Harwood, D. and Hawton, K. (2009). Dementia and suicidal behavior: a review of the literature. International Psychogeriatrics, 21, 440–453.CrossRefGoogle ScholarPubMed
Heal, H. C. and Husband, H. J. (1998). Disclosing a diagnosis of dementia: is age a factor? Aging and Mental Health, 2, 144–150.Google Scholar
Holroyd, S., Snustad, D. G. and Chalifoux, Z. L. (1996). Attitudes of older adults’ on being told the diagnosis of Alzheimer's disease. Journal of the American Geriatrics Society, 44, 400–403.Google Scholar
Hort, J. et al. (2010). EFNS guidelines for the diagnosis and management of Alzheimer's disease. European Journal of Neurology, 17, 1236–1248.CrossRefGoogle ScholarPubMed
Hout, van, H. P., Vernooij-Dassen, M. J., Jansen, D. A. and Stalman, W. A. (2006). Do general practitioners disclose correct information to their patients suspected of dementia and their caregivers? A prospective observational study. Aging and Mental Health, 10, 151–155.Google Scholar
Hout, van, H. P., Vernooij-Dassen, M., Bakker, K., Blom, M. and Grol, R. (2000). General practitioners on dementia: tasks, practices and obstacles. Patient Education and Counseling, 39, 219–225.Google Scholar
Iliffe, S. et al. (2009). Primary care and dementia: 1. diagnosis, screening and disclosure. International Journal of Geriatric Psychiatry, 24, 895–901.Google Scholar
Jha, A., Tabet, N. and Orrell, M. (2001). To tell or not to tell-comparison of older patients’ reaction to their diagnosis of dementia and depression. International Journal of Geriatric Psychiatry, 16, 879–885.Google Scholar
Johnson, H., Bouman, W. P. and Pinner, G. (2000). On telling the truth in Alzheimer's disease: a pilot study of current practice and attitudes. International Psychogeriatrics, 12, 221–229.Google Scholar
Kaduszkiewicz, H., Bachmann, C. and van den, B. H. (2008). Telling “the truth” in dementia-do attitude and approach of general practitioners and specialists differ? Patient Education and Counseling, 70, 220–226.Google Scholar
Koch, T. and Iliffe, S. (2010). Rapid appraisal of barriers to the diagnosis and management of patients with dementia in primary care: a systematic review. BMC Family Practice, 11 52.Google Scholar
Kutzleben, von, M., Schmid, W., Halek, M., Holle, B. and Bartholomeyczik, S. (2012). Community-dwelling persons with dementia: what do they need? What do they demand? What do they do? A systematic review on the subjective experiences of persons with dementia. Aging and Mental Health, 16, 378–390.Google Scholar
Lecouturier, J. et al. (2008). Appropriate disclosure of a diagnosis of dementia: identifying the key behaviors of ‘best practice’. BMC Health Services Research, 8, 95.Google Scholar
Lin, K. N., Liao, Y. C., Wang, P. N. and Liu, H. C. (2005). Family members favor disclosing the diagnosis of Alzheimer's disease. International Psychogeriatrics, 17, 679–688.Google Scholar
Maguire, C. P., Kirby, M., Coen, R., Coakley, D., Lawlor, B. A. and O’Neill, D. (1996). Family members’ attitudes toward telling the patient with Alzheimer's disease their diagnosis. British Medical Journal, 313, 529–530.Google Scholar
Marzanski, M. (2000). Would you like to know what is wrong with you? On telling the truth to patients with dementia. Journal of Medical Ethics, 26, 108–113.Google Scholar
Mimura, M. (2003) Problems of truth-telling and caregivers’ stress in urban and rural areas in Japan. Transcultural Aspects of Aging and Dementia.Google Scholar
Mormont, E., de, F. K. and Jamart, J. (2012). Experiences of the patients and their caregivers regarding the disclosure of the diagnosis of Alzheimer's disease: a Belgian retrospective survey. Acta Neurologica Belgica, 112, 249–254.Google Scholar
National Collaborating Centre for Mental Health (UK). (2007). Dementia: a NICE-SCIE guideline on supporting people with dementia and their carers in health and social care. National Institute for Health and Clinical Excellence: Guidance.Google Scholar
Neyeloff, J. L., Fuchs, S. C. and Moreira, L. B. (2012). Meta-analyses and Forest plots using a microsoft excel spreadsheet: step-by-step guide focusing on descriptive data analysis. BMC Research Notes, 5, 52.Google Scholar
Ouimet, M. A., Dendukuri, N., Dion, D., Beizile, E. and Elie, M. (2004). Disclosure of Alzheimer's disease. Senior citizens’ opinions. Canadian Family Physician, 50, 1671–1677.Google Scholar
Patterson, C. J. et al. (1999). The recognition, assessment and management of dementing disorders: conclusions from the Canadian Consensus Conference on Dementia. Canadian Medical Association Journal, 160, (12 Suppl) S1–15.Google Scholar
Phillips, J. et al. (2012). Difficulties in disclosing the diagnosis of dementia: a qualitative study in general practice. British Journal of General Practice, 62, 546–553.Google Scholar
Pinner, G. and Bouman, W. P. (2003). Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis. International Psychogeriatrics, 15, 279–288.CrossRefGoogle ScholarPubMed
Pratt, R. and Wilkinson, H. (2001). ‘Tell me the truth’ The effect of being told the diagnosis of dementia from the perspective of the person with dementia. The mental health foundation. Google Scholar
Raicher, I., Shimizu, M. M., Takahashi, D.Y., Nitrini, R. and Caramelli, P. (2008). Alzheimer's disease diagnosis disclosure in Brazil: a survey of specialized physicians’ current practice and attitudes. International Psychogeriatrics, 20, 471–481.Google Scholar
Robinson, L. et al. (2011). The transition to dementia–individual and family experiences of receiving a diagnosis: a review. International Psychogeriatrics, 23, 1026–1043.Google Scholar
Segal-Gidan, F., Cherry, D., Jones, R., Williams, B., Hewett, L. and Chodosh, J. (2011). Alzheimer's disease management guideline: update 2008. Alzheimer's and Dementia, 7, e51–59.Google Scholar
Segers, K. (2009). What Belgian geriatricians tell their patients with Alzheimer's disease and why: a national survey. Acta Neurologica Belgica, 109, 283–293.Google Scholar
Seyfried, L. S., Kales, H. C., Ignacio, R. V., Conwell, Y., and Valenstein, M. (2011). Predictors of suicide in patients with dementia. Alzheimer's and Dementia, 7, 567–573.Google Scholar
Shimizu, M. M., Raicher, I., Takahashi, D. Y., Caramelli, P. and Nitrini, R. (2008). Disclosure of the diagnosis of Alzheimer's disease: caregivers’ opinions in a Brazilian sample. Arquivos de Neuro-Psiquiatria, 66, 625–630.Google Scholar
Sorbi, S. et al. (2012). EFNS-ENS Guidelines on the diagnosis and management of disorders associated with dementia. European Journal of Neurology, 19, 1159–1179.CrossRefGoogle ScholarPubMed
Sullivan, K. and O’Conor, F. (2001). Should a diagnosis of Alzheimer's disease be disclosed? Aging and Mental Health, 5, 340–348.Google Scholar
Tarek, M. E., Segers, K. and Van, N. C. (2009). What belgian neurologists and neuropsychiatrists tell their patients with Alzheimer disease and why: a national survey. Alzheimer Disease and Associated Disorders, 23, 33–37.CrossRefGoogle ScholarPubMed
TNS for the Harvard School of Public Health and Alzheimer Europe. (2011). Five Country Alzheimer's Disease Survey. Website Alzheimer Europe Google Scholar
Turnbull, Q., Wolf, A. M. and Holroyd, S. (2003). Attitudes of elderly subjects toward “truth telling” for the diagnosis of Alzheimer's disease. Journal of Geriatric Psychiatry and Neurology, 16, 90–93.Google Scholar
Umegaki, H., Onishi, J., Suzuki, Y., Endo, H. and Iguchi, A. (2007). Attitudes toward disclosing the diagnosis of dementia in Japan. International Psychogeriatrics, 19, 253–265.Google Scholar
Vernooij-Dassen, M. J. et al. (2005). Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma. International Journal of Geriatric Psychiatry, 20, 377–386.Google Scholar
Vroomen, J. M., Bosmans, J. E., van Hout, H. P., and de Rooij, S. E. (2013). Reviewing the definition of crisis in dementia care. BMC Geriatrics, 13, 10.Google Scholar
Zanetti, O. et al. (1999). Insight in dementia: when does it occur? Evidence for a nonlinear relationship between insight and cognitive status. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 54, 100–106.Google Scholar
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