Skip to main content
×
Home
    • Aa
    • Aa
  • Get access
    Check if you have access via personal or institutional login
  • Cited by 19
  • Cited by
    This article has been cited by the following publications. This list is generated based on data provided by CrossRef.

    Olsen, Kirsty Taylor, John-Paul and Thomas, Alan 2014. Mild cognitive impairment: Safe to drive?. Maturitas, Vol. 78, Issue. 2, p. 82.


    Dooley, Jemima Bailey, Cate and McCabe, Rose 2015. Communication in healthcare interactions in dementia: a systematic review of observational studies. International Psychogeriatrics, Vol. 27, Issue. 08, p. 1277.


    McCabe, Louise 2016. Mental Health and Older People.


    Hellström, Ingrid and Torres, Sandra 2013. A wish to know but not always tell – couples living with dementia talk about disclosure preferences. Aging & Mental Health, Vol. 17, Issue. 2, p. 157.


    Pesonen, Hanna-Mari Remes, Anne M. and Isola, Arja 2013. Diagnosis of dementia as a turning point among Finnish families: A qualitative study. Nursing & Health Sciences, Vol. 15, Issue. 4, p. 489.


    Robinson, Louise and Corner, Lynne 2014. Wellbeing.


    Devoy, Susan and Simpson, Ellen Elizabeth Anne 2016. Help-seeking intentions for early dementia diagnosis in a sample of Irish adults. Aging & Mental Health, p. 1.


    Young, Alys Ferguson-Coleman, Emma and Keady, John 2016. Understanding dementia: effective information access from the Deaf community's perspective. Health & Social Care in the Community, Vol. 24, Issue. 1, p. 39.


    Livingston, Gill and Cooper, Claudia 2013. Designing and Delivering Dementia Services.


    Iliffe, Steve Wilcock, Jane Drennan, Vari Goodman, Claire Griffin, Mark Knapp, Martin Lowery, David Manthorpe, Jill Rait, Greta and Warner, James 2015. Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM). Programme Grants for Applied Research, Vol. 3, Issue. 3, p. 1.


    Mormont, E. de Fays, 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, Vol. 112, Issue. 3, p. 249.


    Carelli, Laura Pezzati, Rita Poletti, Barbara and Zago, Stefano 2013. La comunicazione della diagnosi di malattia di alzheimer: aspetti clinici ed etico-giuridici. RICERCHE DI PSICOLOGIA, Issue. 2, p. 501.


    Dubois, Bruno Padovani, Alessandro Scheltens, Philip Rossi, Andrea Dell’Agnello, Grazia and Saykin, Andrew 2015. Timely Diagnosis for Alzheimer’s Disease: A Literature Review on Benefits and Challenges. Journal of Alzheimer's Disease, Vol. 49, Issue. 3, p. 617.


    van den Dungen, Pim Moll van Charante, Eric P van Marwijk, Harm W J van der Horst, Henriëtte E van de Ven, Peter M and van Hout, Hein P J 2012. Case-finding of dementia in general practice and effects of subsequent collaborative care; design of a cluster RCT. BMC Public Health, Vol. 12, Issue. 1,


    Jang, Jieun and Choi, Heeseung 2016. The Effects of Emotion-focused Individual Intervention for Family Caregivers of People with Early Stages of Dementia. Journal of Korean Academy of Psychiatric and Mental Health Nursing, Vol. 25, Issue. 2, p. 101.


    Samsi, Kritika Abley, Clare Campbell, Sarah Keady, John Manthorpe, Jill Robinson, Louise Watts, Sue and Bond, John 2014. Negotiating a Labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia. International Journal of Geriatric Psychiatry, Vol. 29, Issue. 1, p. 58.


    Hsiao, Hsin-Yi Liu, Zhaorui Xu, Ling Huang, Yueqin and Chi, Iris 2015. Knowledge, Attitudes, and Clinical Practices for Patients With Dementia Among Mental Health Providers in China: City and Town Differences. Gerontology & Geriatrics Education, p. 1.


    van den Dungen, Pim Moll van Charante, Eric P. van de Ven, Peter M. Foppes, Gerbrand van Campen, Jos P. C. M. van Marwijk, Harm W. J. van der Horst, Henriëtte E. and van Hout, Hein P. J. 2015. Dutch family physicians’ awareness of cognitive impairment among the elderly. BMC Geriatrics, Vol. 15, Issue. 1,


    van den Dungen, Pim van Kuijk, Lisa van Marwijk, Harm van der Wouden, Johannes Moll van Charante, Eric van der Horst, Henriette and van Hout, Hein 2014. Preferences regarding disclosure of a diagnosis of dementia: a systematic review. International Psychogeriatrics, Vol. 26, Issue. 10, p. 1603.


    ×

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)
  • DOI: http://dx.doi.org/10.1017/S1041610210002437
  • Published online: 01 February 2011
Abstract
ABSTRACT

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”.

Copyright
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: a.l.robinson@ncl.ac.uk.
Linked references
Hide All

This list contains references from the content that can be linked to their source. For a full set of references and notes please see the PDF or HTML where available.

K. B. Adams (2006). The transition to caregiving: the experience of family members embarking on the dementia caregiving career. Journal of Gerontological Social Work, 47, 329.

F. Aminzadeh , A. Byszewski , F. J. Molnar and M. Eisner (2007). Emotional impact of dementia diagnosis: exploring persons with dementia and caregivers’ perspectives. Ageing and Mental Health, 11, 281290.

C. Bamford , S. Lamont , M. Eccles , L. Robinson , C. May and J. Bond (2004). Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry, 19, 151169.

A. M. Barrett , M. Keller , P. Damgaard and R. H. Swerdlow (2006). Short-term effect of dementia disclosure: how patients and families describe the diagnosis. Journal of the American Geriatrics Society, 54, 19681970.

R. L. Beard (2004). In their voices: identity preservation and experiences of Alzheimer's disease. Journal of Aging Studies, 18, 415428.

R. L. Beard and P. J. Fox (2008). Resting social disenfranchisement: negotiating collective identities and everyday life with memory loss. Social Science and Medicine, 66, 15091520.

A. Beattie , G. Daker-White and J. Gillard (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.

A. M. Byszewski , F. J. Molnar , F. Aminzadeh , M. Eisner , F. Gardezi and R. Bassett (2007). Dementia diagnosis disclosure: a study of patient and caregiver perspectives. Alzheimer Disease and Associated Disorders, 21, 107114.

K. H. Campbell , C. B. Stocking , G. W. Hougham , P. J. Whitehouse , D. D. Danner and G. Sachs (2008). Dementia, diagnostic disclosure and self-reported health status. Journal of the American Geriatrics Society, 56, 296300.

B. D. Carpenter and J. Dave (2004). Disclosing a dementia diagnosis: a review of opinion and practice, and a proposed research agenda. The Gerontologist, 44, 149158.

B. D. Carpenter (2008). Reaction to a dementia diagnosis in individuals with Alzheimer's disease and mild cognitive impairment. Journal of the American Geriatrics Society, 56, 405412.

J. Cloutterbuck and D. F. Mahoney (2003). African American dementia caregivers: the duality of respect. Dementia, 2, 221243.

C. M. Connell , L. Boise , J. C. Stuckey , S. B. Holmes and M. L. Hudson (2004). Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians. The Gerontologist, 44, 500507.

E. Derksen , M. Vernooij-Dassen , F. Gillisen , M. Olde-Rikkert and P. Scheltens (2006). Impact of diagnostic disclosure in dementia on patients and carers: qualtitative case series analysis. Aging and Mental Health, 10, 525531.

P. 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, 419425.

M. F. Folstein , S. E. Folstein and P. R. McHugh (1975). “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189198.

J. E. Gaugler , S. B. Wackerbarth , M. Mendiondo , F. A. Schmitt and C. D. Smith (2003). The characteristics of dementia caregiving onset. American Journal of Alzheimer's Disease and Other Dementias, 18, 97104.

J. Georges , S. Jansen , J. Jackson , A. Meyrieux , A. Sadowska and J. Selmes (2008). Alzheimer's disease in real life: the dementia carer's survey. International Journal of Geriatric Psychiatry, 23, 546551.

G. Harman and L. Clare (2006). Illness representations and lived experience in early-stage dementia. Qualitative Health Research, 16, 484502.

L. Hinton , C. Franz and J. Friend (2004). Pathways to dementia diagnosis: evidence for cross-ethnic differences. Alzheimer Disease and Associated Disorders, 18, 134144.

S. Iliffe (2009). Primary care and dementia: diagnosis, screening and disclosure. International Journal of Geriatric Psychiatry, 24, 895901.

J. Keady , S. Williams and J. Hughes-Roberts (2005). Emancipatory practice development through life-story work: changing care in a memory clinic in North Wales. Practice Development in Health Care, 4, 203212.

M. L. Laakkonen (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.

M. L. Laakkonen , M. M. Raivio , U. Eloniemi-Sulkava , R. S. Tilvis and K. H. Pitkala (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.

S. A. Langdon , A. Eagle and J. Warner (2007). Making sense of dementia in the social world: a qualitative study. Social Science and Medicine, 64, 9891000.

J. H. Lingler (2006). Making sense of mild cognitive impairment: a qualitative exploration of the patient's experience. The Gerontologist, 46, 791800.

E. Moniz-Cook , J. Manthorpe , I. Carr , G. Gibson and M. Vernooij-Dassen (2006). Facing the future: a qualitative study of older people referred to a memory clinic prior to assessment and diagnosis. Dementia, 5, 375395.

E. Pucci , N. Belardinelli , G. Borsetti and G. Guiliani (2009). Relatives’ attitudes towards informing patients about the diagnosis of Alzheimer's disease. Journal of Medical Ethics, 29, 5154.

E. Rimmer , M. Wojciechowska , C. Stave , A. Sganga and B. O'Connell (2005). Implications of the Facing Dementia Survey for the general population, patients and caregivers across Europe. International Journal of Clinical Practice, 59, 1724.

L. Robinson , L. Clare and K. Evans (2005). Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Ageing and Mental Health, 9, 337347.

L. Robinson (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.

M. M. Shimizu , I. Raicher , D. Y. Takahashi , P. Caramelli and R. Nitrini (2008). Disclosure of the diagnosis of Alzheimer's disease. Arquivos de Neuro-Psiquiatria, 66, 625630.

A. Tong , P. Sainsbury and J. Craig (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.

P. J. van't Veer-Tazelaar (2009). Stepped-care prevention of anxiety and depression in late life: a randomized controlled trial. Archives of Geriatric Psychiatry, 66, 297304.

M. Vernooij-Dassen , E. Derksen , P. Scheltens and E. Moniz-Cook (2006). Receiving a diagnosis of demnetia: the experience over time. Dementia, 5, 397410.

K. E. Wain , W. R. Uhlmann , J. Heidebrink and S. J. Roberts (2009). Living at risk: the sibling's perspective of early-onset Alzheimer's disease. Journal of Genetic Counseling, 18, 239251.

C. Wald , M. Fahy , Z. Walker and G. Livingston (2003). What to tell dementia caregivers: the rule of threes. International Journal of Geriatric Psychiatry, 18, 313317.

G. Waldemar 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.

Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

International Psychogeriatrics
  • ISSN: 1041-6102
  • EISSN: 1741-203X
  • URL: /core/journals/international-psychogeriatrics
Please enter your name
Please enter a valid email address
Who would you like to send this to? *
×