Een handreiking voor familieleden over palliatieve zorg bij dementie: evaluatie door zorgverleners en familieleden

Families of nursing home residents with dementia are usually involved in care and treatment decisions. To this end, family needs to be informed on the course of the dementia and possible palliative care. Based on a Canadian booklet, we developed an adapted version for use in the Netherlands. Elderly care physicians (n = 30), nurses (n = 38), and bereaved families (n = 59) evaluated the booklet and possible implementation strategies. All respondents confirmed that in general, there is a need of an information brochure on comfort care and end-of-life issues for families. Most (93%) families believed they would have found the booklet useful when received earlier. Compared to the physicians, nurses more frequently found the booklet useful to most or all families (p = 0.04). Acceptance, as measured on an 8-item scale, was highest among families and lowest among physicians. Overall usefulness was often perceived as high (means 7.9 to 8.3; scale range 0-10; SD 0.9 to 1.4) and did not differ across groups of respondents (p = 0.29). All respondents agreed that professional caregivers should have a role in providing the booklet. Additionally, half (53%; no difference across groups) favoured availability of the booklet through families' own initiative; some already before admission. In conclusion, there is a high need for written information on palliative care. The booklet is highly appreciated. A further improved version may support professional and family caregivers in practice.