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The meaning and experience of well-being in dementia for psychiatrists involved in diagnostic disclosure: a qualitative study

Published online by Cambridge University Press:  17 October 2016

A. Vince*
Department of Psychological Health and Well-being, University of Hull, Cottingham Road, Kingston-Upon-Hull, HU6 7RX, UK
C. Clarke
Department of Psychological Health and Well-being, University of Hull, Cottingham Road, Kingston-Upon-Hull, HU6 7RX, UK
E. L. Wolverson
Department of Psychological Health and Well-being, University of Hull, Cottingham Road, Kingston-Upon-Hull, HU6 7RX, UK
Correspondence should be addressed to: A. Vince, Department of Psychological Health and Well-being, University of Hull, Cottingham Road, Kingston-Upon-Hull, HU6 7RX, UK. Phone: +44 (0) 01482 464101. Email:



Literature indicates that people's experiences of receiving a diagnosis of dementia can have a lasting impact on well-being. Psychiatrists frequently lead in communicating a diagnosis but little is known about the factors that could contribute to potential disparities between actual and best practice with regard to diagnostic disclosure. A clearer understanding of psychiatrists’ subjective experiences of disclosure is therefore needed to improve adherence to best practice guidelines and ensure that diagnostic disclosure facilitates living well with dementia.


This study utilized qualitative methodology. Semi-structured interviews conducted with 11 psychiatrists were analyzed using Interpretive Phenomenological Analysis (IPA).


Three superordinate and nine subordinate themes emerged from the data analysis. These included the following: (i) “The levels of well-being” (Continuing with life, Keeping a sense of who they are, Acceptance of the self), (ii) “Living well is a process” (Disclosure can set the scene for well-being, Positive but realistic messages, Whose role it is to support well-being?), and (iii) Ideal care versus real care (Supporting well-being is not prioritized, There isn't time, The fragmentation of care).


Findings indicate that psychiatrists frame well-being in dementia as a multi-faceted biopsychosocial construct but that certain nihilistic attitudes may affect how well-being is integrated into diagnostic communication. Such attitudes were linked with the perceived threat of dementia and limitations of post-diagnostic care. Behaviors used to manage the negative affect associated with ethical and clinical tensions triggered by attempts to facilitate well-being at the point of diagnosis, and their impact on adherence to best practice disclosure, are discussed.

Research Article
Copyright © International Psychogeriatric Association 2016 

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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, 281290.CrossRefGoogle Scholar
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, 151169.CrossRefGoogle ScholarPubMed
British Psychological Society (2014). Clinical Psychology in the Early Stage Dementia Pathway. Leicester: The British Psychological Society.Google Scholar
Carpenter, B. and Dave, J. (2004). Disclosing a dementia diagnosis: a review of opinion and practice, and a proposed research agenda. The Gerontologist, 44, 149158.CrossRefGoogle Scholar
Chaturvedi, S. K. and Chandra, P. S. (2010). Breaking bad news-Issues important for psychiatrists. Asian Journal of Psychiatry, 3, 8789.CrossRefGoogle ScholarPubMed
Cornett, P. F. and Hall, J. R. (2008). Issues in disclosing a diagnosis of dementia. Archives of Clinical Neuropsychology, 23, 251256.CrossRefGoogle ScholarPubMed
de Boer, M. E., Hertogh, C. M., Dröes, R. M., Riphagen, I. I., Jonker, C. and Eefsting, J. A. (2007). Suffering from dementia-the patient's perspective: a review of the literature. International Psychogeriatrics, 19, 10211039.CrossRefGoogle ScholarPubMed
Department of Health. (2009). Living Well With Dementia: A National Dementia Strategy. London: Department of Health.Google ScholarPubMed
Doncaster, E., Hodge, S. and Orrell, M. (Published Online; June 2012). Memory Service Accreditation Programme (MSNAP): Standards for Memory Services, 3rd edn. London: Royal College of Psychiatrists Centre for Quality Improvement.Google ScholarPubMed
Dwyer, S. C. and Buckle, J. L. (2009). The space between: on being an insider-outsider in qualitative research. International Journal of Qualitative Methods, 8, 5463.CrossRefGoogle Scholar
Fisk, J. D., Beattie, L., Donnelly, M., Byszewski, A. and Molnar, F. J. (2007). Disclosure of the diagnosis of dementia. Alzheimer's and Dementia, 3, 404410.CrossRefGoogle ScholarPubMed
Hansen, E. C., Hughes, C., Routley, G. and Robinson, A. L. (2008). General practitioners’ experiences and understandings of diagnosing dementia: factors impacting on early diagnosis. Social Science & Medicine, 67, 17761783.CrossRefGoogle ScholarPubMed
Husband, H. J. (1999). The psychological consequences of learning a diagnosis of dementia: three case examples. Aging and Mental Health, 3, 179183.CrossRefGoogle Scholar
Husband, H. J. (2009). What do we tell people with dementia about their diagnosis and how do we tell them. In Moniz-Cook, E. D. and Manthorpe, J. (eds.), Early Psychosocial Interventions in Dementia: Evidence-based Practice (pp. 3949). London: Jessica Kingsley Publishers.Google Scholar
Keightley, J. and Mitchell, A. (2004). What factors influence mental health professionals when deciding whether or not to share a diagnosis of dementia with the person? Aging & Mental Health, 8, 1320.CrossRefGoogle ScholarPubMed
Kitwood, T. (1997). Dementia Reconsidered. Buckingham: Open University Press.Google Scholar
Lecouturier, J. et al. (2008). Appropriate disclosure of a diagnosis of dementia: identifying the key behaviours of ‘best practice’. BMC Health Services Research, 8, 1.CrossRefGoogle Scholar
Mate, K. E., Pond, C. D., Magin, P. J., Goode, S. M., McElduff, P. and Stocks, N. P. (2012). Diagnosis and disclosure of a memory problem is associated with quality of life in community based older Australians with dementia. International Psychogeriatrics, 24, 19621971.CrossRefGoogle Scholar
Moore, V. and Cahill, S. (2013). Diagnosis and disclosure of dementia–A comparative qualitative study of Irish and Swedish general practitioners. Aging & Mental Health, 17, 7784.CrossRefGoogle Scholar
National Institute for Health and Clinical Excellence (2012). Dementia: supporting people with dementia and their carers in health and social care (update). National Institute for Health and Clinical Excellence/CG42.Google Scholar
Shaw, J., Brown, R. D. and Dunn, S. M. (2013). A qualitative study of stress and coping responses in doctors breaking bad news. Patient Education and Counselling, 91, 234248.CrossRefGoogle Scholar
Shaw, J., Dunn, S. and Heinrich, P. (2012). Managing the delivery of bad news: an in-depth analysis of doctors’ delivery style. Patient Education and Counseling, 87, 186192.CrossRefGoogle ScholarPubMed
Smith, J. A., Flowers, P. and Larking, M. (2009). Interpretive phenomenological analysis: theory method and research. London: SAGE Publications Ltd.Google Scholar
Steeman, E., Casterlé, D., Dierckx, B., Godderis, J. and Grypdonck, M. (2006). Living with early-stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54, 722738.CrossRefGoogle ScholarPubMed
Vernooij Dassen, M., Derksen, E., Scheltens, P. and Moniz-Cook, E. (2006) Receiving a diagnosis of dementia: the experience over time, Dementia 5, 397410 CrossRefGoogle Scholar
Werner, P., Karnieli-Miller, O. and Eidelman, S. (2013). Current Knowledge and future directions about the disclosure of dementia: a systematic review of the first decade of the 21st century. Alzheimer's & Dementia, 9, 7488.CrossRefGoogle ScholarPubMed
Whitehouse, P., Frisoni, G. B. and Post, S. (2004). Breaking the diagnosis of dementia. The Lancet Neurology, 3, 124128.CrossRefGoogle ScholarPubMed
Wolverson, E. L., Clarke, C. and Moniz-Cook, E. D. (2016). Living positively with dementia: a systematic review and synthesis of the qualitative literature. Aging & Mental Health, 20, 676699.CrossRefGoogle ScholarPubMed
World Health Organization (2011). Mental health: a state of well-being. Available at; last accessed on 01 July 2013.Google Scholar