Educating families about end-of-life care in advanced dementia: acceptability of a Canadian family booklet to nurses from Canada, France, and Japan.

BACKGROUND: The families of people with late-stage dementia need to be informed about the course of the dementia and the comfort/palliative care option. A booklet was written for that purpose and can be provided to family members by physicians and nurses. METHODS: The acceptability of the booklet for nurses was tested in Canada (French and English version), France (French Canadian version) and Japan (translated and adapted version). RESULTS: Overall, 188 nurses completed a survey questionnaire. The booklet was accepted best in Canada and less so in France and Japan. Despite regional variation, the majority of the nurses perceived the booklet as useful for families. The French and Japanese nurses also reported a greater need for palliative care education in advanced dementia. CONCLUSION: The booklet may help nurses educate families about end-of-life issues in dementia palliative care, but local adaptation of the booklet content and physician engagement are necessary.

A scale to measure pain in non-verbally communicating older patients: the EPCA-2 Study of its psychometric properties.

We have constructed and validated the Elderly Pain Caring Assessment 2 (EPCA-2) an 8 items behavioural scale to rate the intensity of pain in non-verbally communicating older (age 65 years) patients (NVC-OP). It was postulated that the assessed pain had two dimensions (signs outside and during caregiving). The first version of the scale was constructed on the basis of the results of a survey among 48 experienced nurses and caregivers and of a review of the literature. After testing of three intermediate versions, the psychometrics properties of the final version were studied on 340 NVC-OP. The face and content validities were good. Convergent validity: the total score was well correlated both with a pain global clinical score given by two highly experienced observers (r(s)=0.846) and with the opioid dose prescribed in a sub-group of patients (r(s)=0.698). The discriminant and divergent validities were satisfactory. After factor analysis, the internal structure of the scale was consistent with the postulated two-dimensional structure of the construct. The inter-rater reliability was very good (ICC=0.877) and is always equally good irrespective of the status (doctor, nurse and caregiver) of the raters. The internal consistency was highly satisfactory (alpha=0.79). The responsiveness evaluated in 4 ways was always very good. EPCA-2 may provided nurses, caregivers and doctors with a validated instrument for pain assessment in NVC-OP.