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The transition to dementia – individual and family experiences of receiving a diagnosis: a review

  • Louise Robinson (a1), Alan Gemski (a1), Clare Abley (a1), John Bond (a1), John Keady (a2), Sarah Campbell (a2), Kritika Samsi (a3) and Jill Manthorpe (a3)...

Background: Consensus recommends early recognition of memory problems through multi-disciplinary assessment in memory clinics; however, little is known about the experiences of people accessing such services. The aim of this review was to synthesis empirical evidence on patient and carer experiences in the transition to dementia.

Methods: This review updates an earlier review (Bamford et al., 2004) on the topic of disclosure of the diagnosis of dementia. Key electronic databases were searched including OVID Medline, CINAHL, Web of Science, EMBASE, and Sociological Abstracts; this was supplemented by hand searching of reference lists and contact with experts in the field. Only papers published after 2003 were included.

Results: Of the 35 papers included in the review, only one study observed the process of disclosure and only two papers explored the effects on the person with dementia's health. The vast majority of people with dementia wished to know their diagnosis. The key challenges for the person with dementia were coming to terms with losses on multiple levels. Although there may be short-term distress, the majority of people with dementia do not appear to experience long-term negative effects on their psychological health. For family carers, becoming the main decision-maker and adjusting to increased responsibility were common concerns.

Conclusions: There is still little empirical research observing the process of diagnostic disclosure in dementia. Studies exploring the views of patients and their families suggest this should be an ongoing process with the provision of support and information tailored to individual needs. The term “Alzheimer's disease” appears to have more negative connotations than the word “dementia”.

Corresponding author
Correspondence should be addressed to: Professor Louise Robinson, Institute of Health and Society, Newcastle University, Baddiley-Clark Building, Richardson Road, Newcastle NE2 4AX, U.K. Phone: +44 (0)191 222 7013; Fax: +44 (0)191 222 6043; Email:
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Adams K. B. (2006). The transition to caregiving: the experience of family members embarking on the dementia caregiving career. Journal of Gerontological Social Work, 47, 329.
Aminzadeh F., Byszewski A., Molnar F. J. and Eisner M. (2007). Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers’ perspectives. Ageing and Mental Health, 11, 281290.
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.
Barrett A. M., Keller M., Damgaard P. and Swerdlow R. H. (2006). Short-term effect of dementia disclosure: how patients and families describe the diagnosis. Journal of the American Geriatrics Society, 54, 19681970.
Beard R. L. (2004). In their voices: identity preservation and experiences of Alzheimer's disease. Journal of Aging Studies, 18, 415428.
Beard R. L. and Fox P. J. (2008). Resting social disenfranchisement: negotiating collective identities and everyday life with memory loss. Social Science and Medicine, 66, 15091520.
Beattie A., Daker-White G. and Gillard J. (2004). “How can they tell?” A qualitative study of the views of younger people about their dementia and dementia care services. Health and Social Care in the Community, 12, 359368.
Benbow S. M., Ong Y. L., Black S. and Garner J. (2009). Narratives in a users’ and carers’ group: meanings and impact. International Psychogeriatrics, 21, 3339.
Bouckaert F. and van den Bosch S. (2005). Attitudes of family members towards disclosing diagnosis of dementia. International Psychogeriatrics Association, 17 (Suppl. 2), 216.
Boustani M., Peterson B., Hanson L, Harrison R. and Lohr K. N. (2003). Screening for dementia in primary care: a summary of the evidence for the US preventive services task force. Annals of Internal Medicine, 138, 927937.
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, 107114.
Campbell K. H., Stocking C. B., Hougham G. W., Whitehouse P. J., Danner D. D. and Sachs G. (2008). Dementia, diagnostic disclosure and self-reported health status. Journal of the American Geriatrics Society, 56, 296300.
Carpenter B. D. and Dave J. (2004). Disclosing a dementia diagnosis: a review of opinion and practice, and a proposed research agenda. The Gerontologist, 44, 149158.
Carpenter B. D. et al. (2008). Reaction to a dementia diagnosis in individuals with Alzheimer's disease and mild cognitive impairment. Journal of the American Geriatrics Society, 56, 405412.
Centre for Reviews and Dissemination (CRD) (2009). Systematic Reviews: CRD's Guidance on Delivering Reviews in Healthcare. York: CRD, University of York.
Cloutterbuck J. and Mahoney D. F. (2003). African American dementia caregivers: the duality of respect. Dementia, 2, 221243.
Connell C. M., Boise L., Stuckey J. C., Holmes S. B. and Hudson M. L. (2004). Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians. The Gerontologist, 44, 500507.
de Boer M. E., Hertogh C. M. P. M., Droes 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.
Department of Health (2009). Living Well with Dementia: A National Strategy. London: The Stationery Office.
Derksen E., Vernooij-Dassen M., Gillisen F., Olde-Rickkert V. and Scheltens P. (2005). The impact of diagnostic disclosure in dementia: a qualitative case analysis. International Psychogeriatrics, 17, 319326.
Derksen E., Vernooij-Dassen M., Gillisen F., Olde-Rikkert M. and Scheltens P. (2006). Impact of diagnostic disclosure in dementia on patients and carers: qualtitative case series analysis. Aging and Mental Health, 10, 525531.
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, 419425.
Folstein M. F., Folstein S. E. and McHugh P. R. (1975). “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189198.
Frank L. et al. (2006). Impact of cognitive impairment on mild dementia patients and mild cognitive impairment patients and their informants. International Psychogeriatrics, 18, 151162.
Gaugler J. E., Wackerbarth S. B., Mendiondo M., Schmitt F. A. and Smith C. D. (2003). The characteristics of dementia caregiving onset. American Journal of Alzheimer's Disease and Other Dementias, 18, 97104.
Georges J., Jansen S., Jackson J., Meyrieux A., Sadowska A. and Selmes J. (2008). Alzheimer's disease in real life: the dementia carer's survey. International Journal of Geriatric Psychiatry, 23, 546551.
Harman G. and Clare L. (2006). Illness representations and lived experience in early-stage dementia. Qualitative Health Research, 16, 484502.
Hinton L., Franz C. and Friend J. (2004). Pathways to dementia diagnosis: evidence for cross-ethnic differences. Alzheimer Disease and Associated Disorders, 18, 134144.
Iliffe S. and Manthorpe J. (2004). The hazards of early recognition of dementia: a risk assessment. Aging and Mental Health, 8, 99105
Iliffe S. et al. (2009). Primary care and dementia: diagnosis, screening and disclosure. International Journal of Geriatric Psychiatry, 24, 895901.
Keady J., Williams S. and Hughes-Roberts J. (2005). Emancipatory practice development through life-story work: changing care in a memory clinic in North Wales. Practice Development in Health Care, 4, 203212.
Laakkonen M. L. et al. (2008a). How do elderly spouse caregivers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care? Journal of Medical Ethics, 34, 427430.
Laakkonen M. L., Raivio M. M., Eloniemi-Sulkava U., Tilvis R. S. and Pitkala K. H. (2008b). Disclosure of dementia diagnosis and the need for advance care planning in individuals with Alzheimer's disease. Journal of the American Geriatrics Society, 56, 21562157.
Langdon S. A., Eagle A. and Warner J. (2007). Making sense of dementia in the social world: a qualitative study. Social Science and Medicine, 64, 9891000.
Lin K. N., Lia Y. C., Wang P. N. and Liu H. C. (2005). Family members favor disclosing the diagnosis of Alzheimer's disease. International Psychogeriatrics, 17, 679688.
Lingler J. H. et al. (2006). Making sense of mild cognitive impairment: a qualitative exploration of the patient's experience. The Gerontologist, 46, 791800.
Moniz-Cook E., Manthorpe J., Carr I., Gibson G. and Vernooij-Dassen M. (2006). Facing the future: a qualitative study of older people referred to a memory clinic prior to assessment and diagnosis. Dementia, 5, 375395.
Moniz-Cook E., Gibson G., Harrison J. and Wilkinson H. (2009). Timely psychosocial interventions in a memory clinic. In Moniz-Cook E and Manthorpe J (eds.), Early Psychosocial Interventions in Dementia: Evidence Based Practice (pages 5070), London: Jessica Kingsley.
National Institute for Clinical Excellence/Social Care Institute of Excellence (2006). Dementia: Guidance on Health and Social Care. London: National Institute for Clinical Excellence/Social Care Institute of Excellence.
Pinner G. and Bouman W. P. (2003). Attitudes of patients with mild dementia and their carers towards disclosure of the diagnosis. International Psychogeriatrics, 15, 279288.
Pucci E., Belardinelli N., Borsetti G. and Guiliani G. (2009). Relatives’ attitudes towards informing patients about the diagnosis of Alzheimer's disease. Journal of Medical Ethics, 29, 5154.
Rimmer E., Wojciechowska M., Stave C., Sganga A. and O'Connell B. (2005). Implications of the Facing Dementia Survey for the general population, patients and caregivers across Europe. International Journal of Clinical Practice, 59, 1724.
Robinson L., Clare L. and Evans K. (2005). Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Ageing and Mental Health, 9, 337347.
Robinson L. et al. (2010a). Patient preference for future care – how can advance care planning become embedded into dementia care: a study protocol. BMC Geriatrics, doi:10;1186/1471–2318-10-2.
Robinson L. et al. (2010b). Primary care and dementia: 2. Case management, carer support and the management of behavioural and psychological symptoms. International Journal of Geriatric Psychiatry, 25, 657664; doi.10.1002/gps.2405.
Shimizu M. M., Raicher I., Takahashi D. Y., Caramelli P. and Nitrini R. (2008). Disclosure of the diagnosis of Alzheimer's disease. Arquivos de Neuro-Psiquiatria, 66, 625630.
Tong A., Sainsbury P. and Craig J. (2007). Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care, 19, 349357.
van't Veer-Tazelaar P. J. et al. (2009). Stepped-care prevention of anxiety and depression in late life: a randomized controlled trial. Archives of Geriatric Psychiatry, 66, 297304.
Vernooij-Dassen M., Derksen E., Scheltens P. and Moniz-Cook E. (2006). Receiving a diagnosis of demnetia: the experience over time. Dementia, 5, 397410.
Wain K. E., Uhlmann W. R., Heidebrink J. and Roberts S. J. (2009). Living at risk: the sibling's perspective of early-onset Alzheimer's disease. Journal of Genetic Counseling, 18, 239251.
Wald C., Fahy M., Walker Z. and Livingston G. (2003). What to tell dementia caregivers: the rule of threes. International Journal of Geriatric Psychiatry, 18, 313317.
Waldemar G. et al. on behalf of the European Dementia Consensus Network (EDCON) (2007). Access to diagnostic evaluation and treatment for dementia in Europe. International Journal of Geriatric Psychiatry, 22, 4754.
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International Psychogeriatrics
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