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Caregivers of patients with frontotemporal lobar degeneration: a review of burden, problems, needs, and interventions

Published online by Cambridge University Press:  16 April 2012

Sabine Nunnemann ,
Alexander Kurz ,
Stefan Leucht  and
Janine Diehl-Schmid
Sabine Nunnemann*
Affiliation:
Department of Psychiatry, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Alexander Kurz
Affiliation:
Department of Psychiatry, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Stefan Leucht
Affiliation:
Department of Psychiatry, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Janine Diehl-Schmid
Affiliation:
Department of Psychiatry, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
*
Correspondence should be addressed to: Dr. Sabine Nunnemann, Department of Psychiatry, Technische Universität München, Ismaninger Str. 22, 81675 München, Germany. Phone: +49-89-4140-4275; Fax: +49-89-4140-4923. Email: Sabine.Nunnemann@lrz.tum.de.
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Abstract

Background: Frontotemporal lobar degeneration (FTLD) is a relatively rare disease compared to Alzheimer' disease (AD), but nevertheless causes higher burden and stress to caregivers. Only little is known about the problems and needs of the caregivers of patients with FTLD. Such information is crucial for the development of caregiver support interventions. The aim of the current study is to systematically review publications on (1) burden, problems, and needs of FTLD caregivers, and (2) the feasibility and efficacy of caregiver interventions in FTLD.

Methods: A systematic review was conducted. Medical, psychological, and social sciences databases were searched for publications on burden, problems, needs of FTLD caregivers, and support interventions.

Results: Very little published data are available on burden, problems, and needs of FTLD caregivers. Burden among FTLD caregivers is higher than among AD caregivers and correlated with neuropsychiatric symptoms. Specific problems include delayed diagnosis, young age of patients, behavioral disturbances, lack of information and suitable care facilities, caregivers' depression, social isolation, and neglect of personal needs. Hardly any literature is available on the actual needs of FTLD caregivers. Regarding interventions for caregivers, no randomized controlled trials exist. Eight publications could be identified that provide narrative reports on structured caregiver support groups or respite care in combination with caregiver support intervention or advanced practice nursing.

Conclusion: More research and funding are needed to elucidate the complex construct of burden of FTLD caregivers to identify and quantify their problems and needs in order to develop helpful interventions and services.

Keywords

frontotemporal dementiacarerFTDFTLDsystematic review
Type
Review Article
Information
International Psychogeriatrics , Volume 24 , Issue 9 , September 2012 , pp. 1368 - 1386
Copyright
Copyright © International Psychogeriatric Association 2012

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