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.