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Disclosing a dementia diagnosis: what do patients and family consider important?

Published online by Cambridge University Press:  01 May 2014

Maree Mastwyk Open the ORCID record for Maree Mastwyk [Opens in a new window] ,
David Ames ,
Kathryn A. Ellis ,
Edmond Chiu  and
Briony Dow
Maree Mastwyk*
Affiliation:
Florey Institute of Neuroscience and Mental Health, 155 Oak Street, Parkville 3052, Victoria, Australia
David Ames
Affiliation:
National Ageing Research Institute, Poplar Road, Parkville 3052, Victoria, Australia Academic Unit for Psychiatry of Old Age, St. George's Hospital, University of Melbourne, 283 Cotham Road, Kew 3101, Victoria, Australia
Kathryn A. Ellis
Affiliation:
Florey Institute of Neuroscience and Mental Health, 155 Oak Street, Parkville 3052, Victoria, Australia Academic Unit for Psychiatry of Old Age, St. George's Hospital, University of Melbourne, 283 Cotham Road, Kew 3101, Victoria, Australia
Edmond Chiu
Affiliation:
Academic Unit for Psychiatry of Old Age, University of Melbourne, Victoria, Australia
Briony Dow
Affiliation:
National Ageing Research Institute, Poplar Road, Parkville 3052, Victoria, Australia
*
Correspondence should be addressed to: Maree Mastwyk, Florey Institute of Neuroscience and Mental Health, 155 Oak Street, Parkville 3052, Victoria, Australia. Phone: +613-9389-2943; Fax: +613-9387-5061. Email: maree.mastwyk@florey.edu.au.
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Abstract

Background:

The literature available on the format of the feedback session following assessment of memory impairment is minimal. This study explored how this information should be presented from the perspective of patients and their families.

Methods:

Thirty-two semi-structured interviews were conducted with memory clinic patients and their carer at the clinic visit that followed the feedback session, to ask: what they recalled, what they found helpful, and what they thought was the best way to disclose a diagnosis of dementia. A second interview was conducted with 14 patient/carer dyads at their next appointment.

Results:

Recall of information from the feedback session was variable. Most respondents (76% of patients; 66% of carers) thought that a direct approach was best when informing the patient of a dementia diagnosis, and that both written information and compassion demonstrated by the doctor were helpful. Opinions on whether all the information should be given at once or in stages were divided.

Conclusions:

The current format of the feedback session needs revision to improve recall. Patients and their families want a direct approach to be used by a supportive and professional doctor with an opportunity to ask questions. They want the support of a family member or friend when they are told of their diagnosis and they would like a written summary to refer to afterwards.

Keywords

patient perspectivecarer perspectivediagnosisdisclosuredementia
Type
Research Article
Information
International Psychogeriatrics , Volume 26 , Issue 8 , August 2014 , pp. 1263 - 1272
Copyright
Copyright © International Psychogeriatric Association 2014 

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