title: Support for families of patients dying with dementia: a qualitative analysis of bereaved family members' experiences and suggestions.
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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors: Interdisciplinary Palliative Care Unit,III. Department of Medicine,University Medical Center of the Johannes Gutenberg University of Mainz,Mainz,Germany.
authors: Pia
authors: P
authors: Muders
authors: Interdisciplinary Palliative Care Unit,III. Department of Medicine,University Medical Center of the Johannes Gutenberg University of Mainz,Mainz,Germany.
authors: Corinna Aruna
authors: CA
authors: Zahrt-Omar
authors: Interdisciplinary Palliative Care Unit,III. Department of Medicine,University Medical Center of the Johannes Gutenberg University of Mainz,Mainz,Germany.
authors: Sonja
authors: S
authors: Bussmann
authors: Interdisciplinary Ageing Research,Faculty of Educational Sciences,Goethe University,Frankfurt am Main,Germany.
authors: Julia
authors: J
authors: Haberstroh
authors: Interdisciplinary Palliative Care Unit,III. Department of Medicine,University Medical Center of the Johannes Gutenberg University of Mainz,Mainz,Germany.
authors: Martin
authors: M
authors: Weber
mesh_terms: D001601:Bereavement; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D003430:Cross-Sectional Studies; D003704:Dementia / Q000628:therapy*; D006801:Humans; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology*
keywords: Dementia; End of life; Family caregiving; Palliative care; Qualitative research