Differences in supporting families of dementia patients and cancer patients: a palliative perspective

Abstract

Objectives: To investigate what staff working in close contact with patients perceive as good support of families in dementia care as compared with support of families in palliative cancer care. Design and subjects: During four national courses on dementia care and one national course on palliative cancer care, 316 and 121 participants, respectively, responded to an open-ended question: In your experience, what are the two most important measures for supporting families of dementia patients/severely ill cancer patients? Sixty-one items were coded and allocated into 10 main categories and analysed with both a qualitative and quantitative approach. Results: The dominant items for both staff groups were to listen to the family member and to give information, although listening was significantly more often stressed in the palliative group (PB = 0.001). The staff in dementia care stressed significantly more the importance to form support groups for families (PB = 0.001), to offer respite care (PB = 0.001), to educate families (PB = 0.001) and to try to relieve the family's feeling of guilt (PB = 0.001). In the palliative staff group, the importance of being available (PB = 0.05), creating a sense of security (PB = 0.001) and supporting the family after the patients death (PB = 0.01) were significantly more focused on. Discussion: The respondents from the dementia staff group and from the palliative cancer group stressed the importance of supporting family members. However, the type of support needed partly differs because of the different trajectories in dementia compared with severe cancer phases.