International Psychogeriatrics

Review Article

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

Louise Robinsona1 c1, Alan Gemskia1, Clare Ableya1, John Bonda1, John Keadya2, Sarah Campbella2, Kritika Samsia3 and Jill Manthorpea3

a1 Institute of Health and Society, Newcastle University, Newcastle upon Tyne, U.K.

a2 School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, U.K.

a3 Social Care Workforce Research Unit, King's College, London, U.K.

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”.

(Received October 22 2010)

(Revised November 18 2010)

(Revised December 03 2010)

(Accepted December 12 2010)

(Online publication February 01 2011)

Correspondence:

c1 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.