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Family members’ experience of the pre-diagnostic phase of dementia: a synthesis of qualitative evidence

Published online by Cambridge University Press:  07 June 2017

Kirrily Rogers ,
Honor Coleman ,
Amy Brodtmann ,
David Darby  and
Vicki Anderson
Kirrily Rogers*
Affiliation:
Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, 3010, Victoria, Australia Neuroscience Department, Eastern Cognitive Disorders Clinic, Box Hill Hospital, 5 Arnold Street, Box Hill, 3128, Victoria, Australia
Honor Coleman
Affiliation:
Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, 3010, Victoria, Australia
Amy Brodtmann
Affiliation:
Neuroscience Department, Eastern Cognitive Disorders Clinic, Box Hill Hospital, 5 Arnold Street, Box Hill, 3128, Victoria, Australia The Florey Institute of Neuroscience and Mental Health, 30 Royal Parade, Parkville, 3052, Victoria, Australia
David Darby
Affiliation:
Neuroscience Department, Eastern Cognitive Disorders Clinic, Box Hill Hospital, 5 Arnold Street, Box Hill, 3128, Victoria, Australia The Florey Institute of Neuroscience and Mental Health, 30 Royal Parade, Parkville, 3052, Victoria, Australia
Vicki Anderson
Affiliation:
Melbourne School of Psychological Sciences, University of Melbourne, Melbourne, 3010, Victoria, Australia Clinical Sciences Research, Murdoch Childrens Research Institute, 50 Flemington Road, Parkville, 3052, Victoria, Australia
*
Correspondence should be addressed to: Kirrily Rogers, Eastern Cognitive Disorders Clinic, c/- Neuro Diagnostic Unit, Building B, Ground Floor, Box Hill Hospital, Nelson Road, Box Hill, VIC 3128. Australia. Phone: +61 3 9895 4639; Fax: +61 3 9895 4610. Email: Kirrily.Rogers@easternhealth.org.au.
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Abstract

Background:

Most research on family members’ experience of dementia has focused on the time after diagnosis. Yet, once people reach clinical attention, families have already been living with the changes for some time. These pre-diagnosis experiences can influence later caregiving. We aimed to synthesize qualitative research exploring family members’ experiences of the pre-diagnostic phase of dementia to inform clinical practice.

Methods:

We conducted a thematic synthesis of 11 studies that met our inclusion criteria following a comprehensive literature search.

Results:

An overarching theme, sense-making, captured the primary process that family members engage in throughout the pre-diagnostic period. Within this, four major analytic themes were extracted as central concepts in understanding family members’ experiences of the pre-diagnostic phase of dementia: the nature of change; appraisals of change; reactions to change; and the influence of others.

Conclusions:

Relevant features of the family experience of dementia onset can be characterized within several major themes. These findings highlight the complex process of recognizing early symptoms of dementia for people living with this condition and their families. Our findings also provide the foundation for developing theoretical frameworks that will ultimately assist with improving recognition of dementia onset, clinical communication with family members, and interventions to reduce family burden.

Keywords

dementiafamilycaregiversdiagnosisqualitative research
Type
Review Article
Information
International Psychogeriatrics , Volume 29 , Issue 9 , September 2017 , pp. 1425 - 1437
Copyright
Copyright © International Psychogeriatric Association 2017 

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