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

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.

Improving end-of-life care in hospitals: a qualitative analysis of bereaved families' experiences and suggestions.

OBJECTIVES: To explore and document the experiences and expectancies of bereaved family members concerning the end-of-life (EOL) care of their deceased relative in a general hospital setting. METHODS: Cross-sectional study using a questionnaire that included open-ended questions. Free-text answers were evaluated with qualitative content analysis. A total of 270 family members provided information about improvements in inpatient care. RESULTS: Families described structural deficiencies. Furthermore, they requested a more holistic patient health care beyond medical treatment and expressed the wish for more professional support for families. DISCUSSION: The view of bereaved families confirmed the need for improvement in general hospital EOL care. The results underline the importance of a more holistic EOL care. The application of communication skills training, structured family meetings, and integrated pathways is recommended.