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Support for families of patients dying with dementia: A qualitative analysis of bereaved family members' experiences and suggestions

Published online by Cambridge University Press:  13 February 2014

Pia Muders ,
Corinna Aruna Zahrt-Omar ,
Sonja Bussmann ,
Julia Haberstroh  and
Martin Weber
Pia Muders
Affiliation:
Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University of Mainz, Mainz, Germany
Corinna Aruna Zahrt-Omar
Affiliation:
Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University of Mainz, Mainz, Germany
Sonja Bussmann
Affiliation:
Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University of Mainz, Mainz, Germany
Julia Haberstroh
Affiliation:
Interdisciplinary Ageing Research, Faculty of Educational Sciences, Goethe University, Frankfurt am Main, Germany
Martin Weber*
Affiliation:
Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University of Mainz, Mainz, Germany
*
Address correspondence and reprint requests to: Martin Weber, Interdisciplinary Palliative Care Unit, III. Department of Medicine, University Medical Center of the Johannes Gutenberg University of Mainz, Langenbeckstrasse 1, D-55131 Mainz, Germany. E-mail: [email protected]
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Abstract

Objective:

To explore and document the needs of family caregivers of patients dying with dementia and to identify how healthcare professionals can adequately support them.

Method:

We employed a cross-sectional survey containing open-ended questions that were analyzed using qualitative methods.

Results:

Receiving information about the diagnosis and disease trajectory of dementia is essential for the caregiving families of people dying with the disease. However, at present the communication of information offered by professionals is not experienced as satisfying. Further aspects that require improvement concern issues related to time constraints, as well as practical and emotional support from professionals in the care setting. Family members would also like professionals to better assist them during and after the dying process.

Significance of Results:

Family members face multiple burdens while caring for their demented relatives and need more professional support during the course of the disease trajectory as well as in the terminal phase.

Keywords

DementiaFamily caregivingEnd of lifePalliative careQualitative research
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 435 - 442
Copyright
Copyright © Cambridge University Press 2014 

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Footnotes

*

These authors contributed equally.

References

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