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Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road

Published online by Cambridge University Press:  01 July 2011

Deliane van Vliet ,
Marjolein E. de Vugt ,
Christian Bakker ,
Raymond T. C. M. Koopmans ,
Yolande A. L. Pijnenburg ,
Myrra J. F. J. Vernooij-Dassen  and
Frans R. J. Verhey
Deliane van Vliet
Affiliation:
Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience/Alzheimer Center Limburg, Maastricht University Medical Center+, Maastricht, The Netherlands
Marjolein E. de Vugt*
Affiliation:
Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience/Alzheimer Center Limburg, Maastricht University Medical Center+, Maastricht, The Netherlands
Christian Bakker
Affiliation:
Florence, Mariahoeve, Center for Specialized Care in Early Onset Dementia, Den Haag, The Netherlands Department of Primary and Community Care, Center for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Center, Nijmegen, The Netherlands
Raymond T. C. M. Koopmans
Affiliation:
Department of Primary and Community Care, Center for Family Medicine, Geriatric Care and Public Health, Radboud University Nijmegen, Medical Center, Nijmegen, The Netherlands
Yolande A. L. Pijnenburg
Affiliation:
Alzheimer's Center and Department of Neurology, VU University Medical Center, Amsterdam, The Netherlands
Myrra J. F. J. Vernooij-Dassen
Affiliation:
Center for Quality of Care Research, Alzheimer's Center Nijmegen, Radboud University Nijmegen, Medical Center, The Netherlands Kalorama Foundation Beek-Ubbergen, The Netherlands
Frans R. J. Verhey
Affiliation:
Department of Psychiatry and Neuropsychology, School for Mental Health and Neuroscience/Alzheimer Center Limburg, Maastricht University Medical Center+, Maastricht, The Netherlands
*
Correspondence should be addressed to: Dr. Marjolein de Vugt, Maastricht University Medical Center+, School for Mental Health and Neuroscience/Alzheimer Center Limburg, Department of Psychiatry and Psychology, P.O. Box 5800, 6202 AZ Maastricht, The Netherlands. Phone: +31–43-3877445; Fax: +31–43-3875444. Email: m.devugt@maastrichtuniversity.nl.
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Abstract

Background: Recognizing and diagnosing early onset dementia (EOD) can be complex and often takes longer than for late onset dementia. The objectives of this study are to investigate the barriers to diagnosis and to develop a typology of the diagnosis pathway for EOD caregivers.

Methods: Semi-structured interviews with 92 EOD caregivers were analyzed using constant comparative analysis and grounded theory. A conceptual model was formed based on 21 interviews and tested in 29 additional transcripts. The identified categories were quantified in the whole sample.

Results: Seven themes emerged: (1) changes in the family member, (2) disrupted family life, (3) misattribution, (4) denial and refusal to seek advice, (5) lack of confirmation from social context, (6) non-responsiveness of a general practitioner (GP), and (7) misdiagnosis. Cognitive and behavioral changes in the person with EOD were common and difficult to understand for caregivers. Marital difficulties, problems with children and work/financial issues were important topics. Confirmation of family members and being aware of problems at work were important for caregivers to notice deficits and/or seek help. Other main issues were a patient's refusal to seek help resulting from denial and inadequate help resulting from misdiagnosis.

Conclusion: EOD caregivers experience a long and difficult period before diagnosis. We hypothesize that denial, refusal to seek help, misattribution of symptoms, lack of confirmation from the social context, professionals’ inadequate help and faulty diagnoses prolong the time before diagnosis. These findings underline the need for faster and more adequate help from health-care professionals and provide issues to focus on when supporting caregivers of people with EOD.

Keywords

informal carediagnosisdiagnostic issuesimpactfirst symptomsgrounded theory
Type
Research Article
Information
International Psychogeriatrics , Volume 23 , Issue 9 , November 2011 , pp. 1393 - 1404
Copyright
Copyright © International Psychogeriatric Association 2011

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