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Background: Improvement in the quality of end-of-life care for advanced dementia is increasingly recognized as a priority in palliative care., Aim: To evaluate the impact of a multidimensional intervention to improve quality of care and quality of dying in advanced dementia in long-term care facilities., Design: Quasi-experimental study with the intervention taking place in two long-term care facilities versus usual care in two others over a 1-year period. The intervention had five components: (1) training program to physicians and nursing staff, (2) clinical monitoring of pain using an observational pain scale, (3) implementation of a regular mouth care routine, (4) early and systematic communication with families about end-of-life care issues with provision of an information booklet, and (5) involvement of a nurse facilitator to implement and monitor the intervention. Quality of care was assessed with the Family Perception of Care Scale. The Symptom Management for End-of-Life Care in Dementia and the Comfort Assessment in Dying scales were used to assess the quality of dying., Participants: A total of 193 residents with advanced dementia and their close family members were included (97 in the intervention group and 96 in the usual care group)., Results: The Family Perception of Care score was significantly higher in the intervention group than in the usual care group (157.3 vs 149.1; p = 0.04). The Comfort Assessment and Symptom Management scores were also significantly higher in the intervention group., Conclusions: Our multidimensional intervention in long-term care facilities for patients with terminal dementia resulted in improved quality of care and quality of dying when compared to usual care.

Introduction: Families of patients with dementia may need support in difficult end-of-life decision making. Such guidance may be culturally sensitive., Methods: To support families in Canada, a booklet was developed to aid decision making on palliative care issues. For reasons of cost effectiveness and promising effects, we prepared for its implementation in Italy, the Netherlands and Japan. Local teams translated and adapted the booklet to local ethical, legal and medical standards where needed, retaining guidance on palliative care. Using qualitative content analyses, we grouped and compared adaptations to understand culturally sensitive aspects., Results: Three themes emerged: (1) relationships among patient, physician and other professionals-the authority of the physician was more explicit in adapted versions; (2) patient rights and family position-adding detail about local regulations; and (3) typology of treatments and decisions. Considerations underlying palliative care decisions were detailed (Dutch and Italian versions), and the Japanese version frequently referred to professional and legal standards, and life-prolongation was a competing goal. Text on artificial feeding or fluids and euthanasia was revised extensively., Conclusions: Providing artificial feeding and fluids and discussing euthanasia may be particularly sensitive topics, and guidance on these subjects needs careful consideration of ethical aspects and possible adaptations to local standards and practice. The findings may promote cross-national debate on sensitive, core issues regarding end-of-life care in dementia.

Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making., Methods/design: Dyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments., Discussion: This study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system., Trial Registration: ISRCTN89993391.

Background: Families of patients with advanced dementia need to be informed about the course of the dementia and comfort care. Conditional for health care providers educating families is their knowledge and comfort in family education., Methods: Perceived usefulness and acceptability of a Canadian family booklet explaining possible complications and comfort care in dementia was assessed by physicians and nurses caring for dementia patients in 14 nursing homes in Lombardy, Italy and 21 in the Netherlands. The practitioners received a questionnaire and translated versions adapted to local practice where needed. In 10 of 21 Dutch homes, physicians evaluated only the original Canadian version in English. A 15-item scale assessed the booklet's acceptability, for example, to inform families, or for educational purposes. Perceived usefulness referred to proportion of families of dementia patients for whom the booklet would be useful. A total of 168 evaluations were available for multivariable regression analyses., Results: The practitioners anticipated that the booklet would be useful for most families. Evaluation of the Dutch translation of the booklet was similar to the English version. Country (Netherlands) and profession (nurses) were independently associated with better acceptability. Usefulness was perceived as better by Italian respondents and nurses, but only in analyses unadjusted for the higher educational needs of these respondents., Conclusion: Overall, the concept of written information on comfort care was appreciated by practitioners of European countries differing in attitudes toward end-of-life care. A booklet may help practitioners, and in particular nurses, in providing comfort care for dementia patients and their families.

The elderly in palliative care are confronted with difficult decisions relating to treatments. The philosophy of palliative care, namely, including the patient and his/her family right away, leads the doctor to consult with the two parties involved when choosing a treatment. As no theoretical model allows us to understand how the decision-making process hinges on the trio (a capable elderly person, a family caregiver, and the doctor) in a context of palliative care, we propose one which was developed from three strategies of document analysis: theoretical synthesis, theoretical analysis, and theoretical derivation. According to our model, the decision-making process depends on individual factors influencing the decision of the participant, expectations and attitudes as to the role, the level of confidence amongst the parties involved, the manner in which they communicate with each other, their mutual understanding of the clinical and ethical issues, and, finally, their ability to cooperate.

Objective: There is a growing consensus on the relevance of a palliative care approach in end-stage dementia. The objective of this study was to assess the impact, in terms of family satisfaction with end-of-life care, of a nursing home (NH) pilot educational program for nursing staff and physicians on comfort care and advanced dementia., Methods: The intervention, implemented in one voluntary NH, consisted of an educational program that included providing an information booklet to all NH staff, and optionally to families. Satisfaction with care was compared using a validated instrument, the "After death bereaved family member interview" pre- and post-intervention. Pre and post groups were composed of close relatives of residents who died in the context of advanced dementia., Results: Twenty-seven contact persons were interviewed pre-intervention and 21 post-intervention (participation rate of 60% for both groups). Descriptive statistics showed better scores on satisfaction with pain control, emotional support, treating patient with respect, and information on what to expect while patient was dying, in the post-intervention group. Comparison of overall scale scores revealed no statistical differences between the 2 groups, although the post-intervention group expressed greater satisfaction in the area of communication with the health care team (8.0 versus 6.6, P = .109) and greater global satisfaction with care (8.3 versus 7.3, P = .087)., Discussion: Although not significant, results as to the effectiveness of such an intervention to improve family satisfaction with end-of-life care are encouraging., Conclusion: The booklet, as support tool, and the educational program may have facilitated communication within the team, and between the team and family members. Replication of this intervention in a multicenter NH population is needed to adequately assess its effectiveness.