Original StudyA Family Booklet About Comfort Care in Advanced Dementia: Three-Country Evaluation
Section snippets
Methods
An international research team has been involved in translating, adapting, and evaluating the booklet.18 Mainstays and aims of all versions were the same (Box 1), and all were structured according to questions and answers. The Dutch version copied the layout of the original Canadian version. Photographs and colors in the Italian version were modified using pictures of Italian settings.
Results
Table 1 shows that patients’ demographics did not differ among decedents from Canada, the Netherlands, and Italy. Mean length of stay in the Netherlands, however, was less than half of length of stay in Italy (2.0 versus 4.2 years) and also shorter than in Canada (3.1 years). Shortness of breath was most commonly reported in Italian patients. Feeding difficulties were less common in Dutch residents. Table 2 shows that family caregivers’ demographics did not differ among the 3 settings except
Discussion
We evaluated a booklet on comfort care in dementia from the perspective of families who have experienced death of their loved one in a long term care setting. Need for and perceived usefulness of the booklet was almost universally acknowledged. There was great support for its contents in the development setting (French-speaking Canada) and in the 2 European countries in the study. The results suggest that the booklet has the potential to help many families who face common challenges in
Conclusion
The booklet is suitable to inform Dutch and Canadian families on comfort care in dementia. Implementation in Italy requires further consideration and possible adaptation. We recommend integrating the booklet in advance care planning if families are receptive, and because preferences vary and depend on the later course of the disease, to also make it available before nursing home admission.
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This work was supported by the Research Center on Aging from the Health and Social Services Centre-University Institute of Geriatrics of Sherbrooke (Canada), the Lino Maestroni Foundation—Palliative Medicine Research Institute (Italy), the national insurance companies Agis Zorgverzekeringen and Fonds NutsOhra, and by Stichting Sluyterman van Loo – stimuleringsfonds ouderenprojecten (national agency that supports projects focused on wellbeing of the elderly) (the Netherlands). J.T.S. was supported by the Netherlands Organisation for Scientific Research (NWO, the Hague; Innovational Research Incentives Scheme, a career award to J.T.S. [grant number Veni 916.66.073]), and the Department of Nursing Home Medicine, and the Department of Public and Occupational Health of the EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam.