Guidance for family about comfort care in dementia: a comparison of an educational booklet adopted in six jurisdictions over a 15 year timespan.

BACKGROUND: To support family caregivers of people with dementia in end-of-life decision making, a family booklet on comfort care has been adapted and adopted by several European jurisdictions since the original publication in Canada in 2005. METHODS: We analyzed and compared the adaptations to the family booklets used in Canada, the Czech Republic, Italy, the Netherlands, the UK and Ireland that were made up to 2021. Qualitative content analysis was used to create a typology of changes to the original booklet. Interviews with the teams that adapted the booklets contributed to methodological triangulation. Further, using an established framework, we assessed whether the contents of the booklets addressed all domains relevant to optimal palliative dementia care. RESULTS: The booklets differed in the types of treatment addressed, in particular tube feeding, euthanasia, and spiritual care. There was also variability in the extent to which medical details were provided, an emphasis on previously expressed wishes in medical decision making, addressing of treatment dilemmas at the end of life, the tone of the messages (indirect or explicit) and the discussion of prognosis (as more or less positive), and the involvement of various healthcare professionals and family caregivers in care. All booklets addressed all domains of palliative dementia care. CONCLUSIONS: We identified core elements in providing information on end-of-life care to family caregivers of people with dementia as related to optimal palliative care in dementia. Additionally, local adaptations and updates are required to account for socio-cultural, clinical, and legal differences which may also change over time. These results may inform development of educational and advance care planning materials for different contexts.

Attitudes toward withholding antibiotics from people with dementia lacking decisional capacity: findings from a survey of Canadian stakeholders.

BACKGROUND: Healthcare professionals and surrogate decision-makers often face the difficult decision of whether to initiate or withhold antibiotics from people with dementia who have developed a life-threatening infection after losing decisional capacity. METHODS: We conducted a vignette-based survey among 1050 Quebec stakeholders (senior citizens, family caregivers, nurses and physicians; response rate 49.4%) to (1) assess their attitudes toward withholding antibiotics from people with dementia lacking decisional capacity; (2) compare attitudes between dementia stages and stakeholder groups; and (3) investigate other correlates of attitudes, including support for continuous deep sedation (CDS) and medical assistance in dying (MAID). The vignettes feature a woman moving along the dementia trajectory, who has refused in writing all life-prolonging interventions and explicitly requested that a doctor end her life when she no longer recognizes her loved ones. Two stages were considered after she had lost capacity: the advanced stage, where she likely has several more years to live, and the terminal stage, where she is close to death. RESULTS: Support for withholding antibiotics ranged from 75% among seniors and caregivers at the advanced stage, to 98% among physicians at the terminal stage. Using the generalized estimating equation approach, we found stakeholder group, religiosity, and support for CDS and MAID, to be associated with attitudes toward antibiotics. CONCLUSIONS: Findings underscore the importance for healthcare professionals of discussing underlying values and treatment goals with people at an early stage of dementia and their relatives, to help them anticipate future care decisions and better prepare surrogates for their role. Findings also have implications for the scope of MAID laws, in particular in Canada where the extension of MAID to persons lacking decisional capacity is currently being considered.

Comparing the attitudes of four groups of stakeholders from Quebec, Canada, toward extending medical aid in dying to incompetent patients with dementia.

OBJECTIVE: The Canadian province of Quebec has recently legalized medical aid in dying (MAID) for competent patients who satisfy strictly defined criteria. The province is considering extending the practice to incompetent patients. We compared the attitudes of four groups of stakeholders toward extending MAID to incompetent patients with dementia. METHODS: We conducted a province-wide postal survey in random samples of older adults, informal caregivers of persons with dementia, nurses, and physicians caring for patients with dementia. Clinical vignettes featuring a patient with Alzheimer's disease were used to measure the acceptability of extending MAID to incompetent patients with dementia. Vignettes varied according to the stage of the disease (advanced or terminal) and type of request (written or oral only). We used the generalized estimating equation (GEE) approach to compare attitudes across groups and vignettes. RESULTS: Response rates ranged from 25% for physicians to 69% for informal caregivers. In all four groups, the proportion of respondents who felt it was acceptable to extend MAID to an incompetent patient with dementia was highest when the patient was at the terminal stage, showed signs of distress, and had written a MAID request prior to losing capacity. In those circumstances, this proportion ranged from 71% among physicians to 91% among informal caregivers. CONCLUSION: We found high support in Quebec for extending the current MAID legislation to incompetent patients with dementia who have reached the terminal stage, appear to be suffering, and had requested MAID in writing while still competent.

Are Informal Caregivers of Persons With Dementia Open to Extending Medical Aid in Dying to Incompetent Patients? Findings From a Survey Conducted in Quebec, Canada.

Euthanasia is a controversial and complex issue, especially when involving incompetent patients. On December 10, 2015, Quebec became the first Canadian province to give access to medical aid in dying (MAiD) (ie, euthanasia performed by a physician) to competent patients who satisfy strictly defined criteria. Less than 2 years later, Quebec is considering extending MAiD to incompetent patients who made an advance request. With the objective of contributing scientific data to current societal debates, we conducted a survey among 471 informal caregivers of persons with dementia, reached through Alzheimer Societies. We used a series of vignettes featuring a person with Alzheimer disease to investigate respondents' attitudes towards MAiD. The response rate was 69%. Two-thirds [68%; 95% confidence interval, 63%-73%] found it acceptable to extend MAiD to an incompetent patient at an advanced stage of Alzheimer disease who had made a written request while competent, and 91% (95% confidence interval, 87%-94%) found it acceptable at the terminal stage. Self-determination was the most widely endorsed argument in favor of access to MAiD for incompetent patients. Findings suggest strong support among informal caregivers for extending MAiD to incompetent patients, provided they are terminally-ill and had made a written request before losing capacity.

Quasi-experimental evaluation of a multifaceted intervention to improve quality of end-of-life care and quality of dying for patients with advanced dementia in long-term care institutions.

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.

Making medical decisions for an incompetent older adult when both a proxy and an advance directive are available: which is more likely to reflect the older adult's preferences?

OBJECTIVES: To investigate which of two sources of information about an older adult's wishes-choices made in an advance directive or proxy's opinion-provides better insight into the older adult's preferences measured in hypothetical clinical situations involving decisional incapacity. METHODS: Secondary analyses of data collected from 157 community-dwelling, decisionally competent adults aged 70 years and over who attended a group information session on advance directives with their proxy. Older adults were invited to complete a directive introduced during the session, designed to express healthcare preferences. An average of 3 months later, older adults were asked during an interview whether they would want to receive each of four medical interventions and what their goals of care would be should they develop one of three sudden health events, assuming that they had severe dementia. Proxies were asked to guess the older adult's answers in each of the seven scenarios. RESULTS: Eighty per cent of the older adults completed the directive. Choices they made in the directive were more in line with the preferences they stated during the interview than were their proxies' guesses at their answers. However, concordance was relatively low, with percentages of agreement ranging from 43% to 83% across scenarios. CONCLUSIONS: Findings suggest that a directive might provide better insight into a person's wishes than the person's proxy, although neither source is perfect. A multifaceted decision-making model that includes both sources of information might better serve the interests of older adults who have lost the capacity to make decisions on their own. TRIAL REGISTRATION NUMBER: ISRCTN89993391; Post-results.

The OptimaMed intervention to reduce inappropriate medications in nursing home residents with severe dementia: results from a quasi-experimental feasibility pilot study.

BACKGROUND: Medication regimens in nursing home (NH) residents with severe dementia should be frequently reviewed to avoid inappropriate medication, overtreatment and adverse drug events, within a comfort care approach. This study aimed at testing the feasibility of an interdisciplinary knowledge exchange (KE) intervention using a medication review guidance tool categorizing medications as either "generally", "sometimes" or "exceptionally" appropriate for NH residents with severe dementia. METHODS: A quasi-experimental feasibility pilot study with 44 participating residents aged 65 years or over with severe dementia was carried out in three NH in Quebec City, Canada. The intervention comprised an information leaflet for residents' families, a 90-min KE session for NH general practitioners (GP), pharmacists and nurses focusing on the medication review guidance tool, a medication review by the pharmacists for participating residents with ensuing team discussion on medication changes, and a post-intervention KE session to obtain feedback from team staff. Medication regimens and levels of pain and of agitation of the participants were evaluated at baseline and at 4 months post-intervention. A questionnaire for team staff explored perceived barriers and facilitators. Statistical differences in measures comparing pre and post-intervention were assessed using paired t-tests and Cochran's-Q tests. RESULTS: The KE sessions reached 34 NH team staff (5 GP, 4 pharmacists, 6 heads of care unit and 19 staff nurses). Forty-four residents participated in the study and were followed for a mean of 104 days. The total number of regular medications was 372 pre and 327 post-intervention. The mean number of regular medications per resident was 7.86 pre and 6.81 post-intervention. The odds ratios estimating the risks of using any regular medication or a "sometimes appropriate" medication post-intervention were 0.81 (95% CI: 0.71-0.92) and 0.83 (95% CI: 0.74-0.94), respectively. CONCLUSION: A simple KE intervention using a medication review guidance tool categorizing medications as being either "generally", "sometimes" or "exceptionally" appropriate in severe dementia was well received and accompanied by an overall reduction in medication use by NH residents with severe dementia. Levels of agitation were unaffected and there was no clinically significant changes in levels of pain. Staff feedback provided opportunities to improve the intervention.

Reliability of health-related quality-of-life assessments made by older adults and significant others for health states of increasing cognitive impairment.

BACKGROUND: Older adults are encouraged by many organizations to engage in advance care planning in the event of decisional incapacity. Planning for future health care often involves anticipating health-related quality of life (HRQoL) in states of reduced cognitive functioning. No study has yet examined whether anticipated HRQoL is stable over time. The accuracy with which significant others can predict how an older adult envisions HRQoL in a future state of cognitive impairment is also unknown. We investigated the extent to which health-related quality-of-life ratings made by older adults and designated proxies for health states of increasing cognitive impairment are consistent over time and agree with each other. METHODS: Results are based on HRQoL ratings made on a 5-point Likert scale by 235 community-based elder-proxy dyads on three occasions. Ratings were obtained for the older adult's current health state as well as under the assumption that he/she had a mild to moderate stroke, incurable brain cancer or severe dementia. Data were analyzed using both traditional approaches (e.g., intraclass correlation coefficients, Bland-Altman plots) and the theory of generalizability. RESULTS: We found ratings to be reasonably consistent over time and in good agreement within dyads, even more so as implied cognitive functioning worsened. Across health states, ratings over time or within elder-proxy dyads were no more than one category apart in over 87% of cases. Using the theory of generalizability, we further found that, of the two facets investigated, rater had a greater influence on score variability than occasion. CONCLUSIONS: These findings underscore the importance of discussing health-related quality-of-life issues during advance care planning and involving designated proxies in the discussion to enhance their understanding of the role that HRQoL should play in actual decision-making situations. Medical decision-making may be influenced by healthcare providers' and family members' assessments of an incapacitated patient's health-related quality of life, in addition to that of the designated proxy. Future studies should investigate whether these two groups of individuals share the views of the patient and the designated proxy on anticipated HRQoL.

Surrogate inaccuracy in predicting older adults' desire for life-sustaining interventions in the event of decisional incapacity: is it due in part to erroneous quality-of-life assessments?

BACKGROUND: Family members are often called upon to make decisions for an incapacitated relative. Yet they have difficulty predicting a loved one's desire to receive treatments in hypothetical situations. We tested the hypothesis that this difficulty could in part be explained by discrepant quality-of-life assessments. METHODS: The data come from 235 community-dwelling adults aged 70 years and over who rated their quality of life and desire for specified interventions in four health states (current state, mild to moderate stroke, incurable brain cancer, and severe dementia). All ratings were made on Likert-type scales. Using identical rating scales, a surrogate chosen by the older adult was asked to predict the latter's responses. Linear mixed models were fitted to determine whether differences in quality-of-life ratings between the older adult and surrogate were associated with surrogates' inaccuracy in predicting desire for treatment. RESULTS: The difference in quality-of-life ratings was a significant predictor of prediction inaccuracy for the three hypothetical health states (p < 0.01) and nearly significant for the current health state (p = 0.077). All regression coefficients were negative, implying that the more the surrogate overestimated quality of life compared to the older adult, the more he or she overestimated the older adult's desire to be treated. CONCLUSION: Discrepant quality-of-life ratings are associated with surrogates' difficulty in predicting desire for life-sustaining interventions in hypothetical situations. This finding underscores the importance of discussing anticipated quality of life in states of cognitive decline, to better prepare family members for making difficult decisions for their loved ones. TRIAL REGISTRATION NUMBER: ISRCTN89993391.

Development of a practice guideline for optimal symptom relief for patients with pneumonia and dementia in nursing homes using a Delphi study.

OBJECTIVE: This study aimed to develop a practice guideline for a structured and consensus-based approach to relieve symptoms of pneumonia in patients with dementia in nursing homes. METHODS: A five-round Delphi study involving a panel consisting of 24 experts was conducted. An initial version of the practice guideline was developed with leading representatives of Dutch University Medical Centers with a department for elderly care medicine, based on existing guidelines for palliative care. The experts evaluated the initial version, after which we identified topics that reflected the main divergences. The experts rated their agreement with statements that addressed the main divergences on a 5-point Likert scale. Consensus was determined according to pre-defined criteria. The practice guideline was then revised according to the final decisions made by the project group and the representatives. RESULTS: The response rate for the expert panel was 67%. Main divergences included the applicability of guidelines for palliative care to patients with dementia and pneumonia in long-term care and the appropriateness of specific pharmacological treatment of dyspnea and coughing. Moderate consensus was reached for 80% of the statements. Major revisions included adding pharmacological treatment for coughing and recommending opioid rotation in the case of opioid-induced delirium. Two areas of divergent opinion remained: the usefulness of oxygen administration and treatment of rattling breath. The project group made the final decision in these areas. CONCLUSIONS: We developed a mostly consensus-based practice guideline for patients with dementia and pneumonia and mapped controversial issues for future investigation.

End-of-life issues in advanced dementia: Part 1: goals of care, decision-making process, and family education.

OBJECTIVE: To review the issues with setting goals of care for patients with advanced dementia, describe the respective roles of the physician and the patient's family in the decision-making process, and suggest ways to support families who need more information about the care options. SOURCES OF INFORMATION: Ovid MEDLINE was searched for relevant articles that were published before March 7, 2014. There were no level I studies identified; most articles provided level III evidence. MAIN MESSAGE: For patients with advanced dementia, their families have an important role in medical decision making. Families should receive timely information about the course of dementia and the care options. They need to understand that a palliative approach to care might be appropriate and does not mean abandonment of the patient. They might also want clarification about their role in the decision-making process, especially if withholding or withdrawing life-prolonging measures are considered. CONCLUSION: Physicians should consider advanced dementia as a terminal disease for which there is a continuum of care that goes from palliative care with life-extending measures to symptomatic interventions only. Clarification of goals of care and family education are of paramount importance to avoid unwanted and burdensome interventions.

End-of-life issues in advanced dementia: Part 2: management of poor nutritional intake, dehydration, and pneumonia.

OBJECTIVE: To answer frequently asked questions about management of end-stage pneumonia, poor nutritional intake, and dehydration in advanced dementia. SOURCES OF INFORMATION: Ovid MEDLINE was searched for relevant articles published until February 2015. No level I studies were identified; most articles provided level III evidence. The symptom management suggestions are partially based on recent participation in a Delphi procedure to develop a guideline for optimal symptom relief for patients with pneumonia and dementia. MAIN MESSAGE: Feeding tubes are not recommended for patients with end-stage dementia. Comfort feeding by hand is preferable. Use of parenteral hydration might be helpful but can also contribute to discomfort at the end of life. Withholding or withdrawing artificial nutrition and hydration is generally not associated with manifestations of discomfort if mouth care is adequate. Because pneumonia usually causes considerable discomfort, clinicians should pay attention to symptom control. Sedation for agitation is often useful in patients with dementia in the terminal phase. CONCLUSION: Symptomatic care is an appropriate option for end-stage manifestations of advanced dementia. The proposed symptom management guidelines are based on a literature review and expert consensus.

A Japanese booklet about palliative care for advanced dementia in nursing homes.

BACKGROUND: A Canadian guide for nursing home staff on comfort care for dementia has been translated and adapted for use in Japan. The present study piloted educational intervention for nursing home staff using the Japanese comfort care booklet. METHOD: Some 61 nursing home staff (nurses and other care workers) completed a session that included pre-assessment, a 30-minute seminar using the comfort care booklet, post-assessment, and a one-hour debriefing meeting. A Japanese version of the questionnaire on palliative care for advanced dementia (qPAD) scale was used to assess knowledge and attitudes toward palliative care for advanced dementia. RESULTS: The participants demonstrated a significant increase in knowledge (mean score, 14.3 to 15.1/23, t (60) = 2.35, p=0.011) and attitudes (43.8 to 45.2/60, t (60) = 2.51, p = 0.015) toward palliative care for advanced dementia from pre-assessment to post-assessment. CONCLUSION: The educational intervention using the Japanese comfort care booklet may have improved nursing home staff's perspectives on palliative care for advanced dementia.

Can adding a standardized observational tool to interdisciplinary evaluation enhance the detection of pain in older adults with cognitive impairments?

OBJECTIVE: The prevalence of chronic pain ranges from 40% to 80% in long-term care facilities, and it is especially high among older adults who are unable to communicate due to cognitive impairments. Although validated assessment tools exist, pain detection in this population is often done by interdisciplinary evaluation (IE), which largely relies on the subjective impression of health care providers. The aim of this study was to examine the agreement between the IE and validated observational pain tools. SETTING: We recruited 59 residents with limited ability to communicate. The pain behaviors of each participant were assessed with two validated tools, the Pain Assessment Checklist for Seniors with Limited Ability to Communicate (PACSLAC) and the Pain Assessment in Advanced Dementia (PAINAD), during transfer or mobilization. The results were then compared with the findings of the IE. RESULTS: The correlation between the PACSLAC and PAINAD was high (r = 0.79 [95% CI: 0.67-0.87]). However, we found a low to moderate association between the PACSLAC and the IE (r = 0.34 [95% CI: 0.09-0.55]), and a weaker association was observed between the PAINAD and the IE (r = 0.25 [95% CI: -0.02-0.48]). When the IE concluded that there was an absence of pain behavior, the PAINAD and the PACSLAC detected the presence of pain in 13.6% and 27.1% of the cases respectively. CONCLUSION: These results may be explained by an inability of IE to assess pain correctly or by instruments providing false positive results. Nevertheless, as detection of pain is difficult in this population, our research supports the use of validated tools to complement assessment of pain by the IE and make sure that no pain goes undetected.

Translation and cross-cultural adaptation of a family booklet on comfort care in dementia: sensitive topics revised before implementation.

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.

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.

Promoting advance planning for health care and research among older adults: a randomized controlled trial.

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.

Physicians' Characteristics and Attitudes Towards Medically Assisted Dying for Non-Competent Patients with Dementia.

The federal and Quebec governments are both considering extending medical aid/assistance in dying (MAID) to non-competent patients who would have requested MAID prior to losing capacity. In 2016-2017, we surveyed 136 Quebec physicians (response rate: 25.5%) on their attitudes towards extending MAID to such patients. Complementing our published findings, we herein identify demographic and practice characteristics that distinguish physicians who reported being open to extending MAID to non-competent patients with dementia, or willing to administer MAID themselves should it be legal, from those who were not. We found that physicians who were older, had stronger religious beliefs, were trained in palliative care, practiced in a teaching hospital, and had not received assisted dying requests in the year preceding the survey held less favourable attitudes towards MAID for non-competent patients with dementia. These findings will inform current deliberations as to whether assistance in dying should be extended to non-competent patients in some circumstances.

The Quebec Observatory on End-of-Life Care for People with Dementia: Implementation and Preliminary Findings.

Most Canadians with dementia die in long-term care (LTC) facilities. No data are routinely collected in Canada on the quality of end-of-life care provided to this vulnerable population, leading to significant knowledge gaps. The Quebec Observatory on End-of-Life Care for People with Dementia was created to address these gaps. The Observatory is a research infrastructure designed to support the collection of data needed to better understand, and subsequently enhance, care quality for residents dying with dementia. This article reports on the main steps involved in setting up the Observatory, as well as a pilot study that involved 172 residents with dementia who died between 2016 and 2018 in one of 13 participating facilities. It describes the data gathered, methodological changes that were made along the way, feedback from participating facilities, and future developments of the Observatory.

Optimizing Practices, Use, Care and Services-Antipsychotics (OPUS-AP) in Long-term Care Centers in Québec, Canada: A Strategy for Best Practices.

OBJECTIVES: Antipsychotic medications are often used for the first-line management of behavioral and psychological symptoms of dementia (BPSD) contrary to guideline recommendations. The Optimizing Practices, Use, Care and Services-Antipsychotics (OPUS-AP) strategy aims to improve the well-being of long-term care (LTC) residents with major neurocognitive disorder (MNCD) by implementing a resident-centered approach, nonpharmacologic interventions, and antipsychotic deprescribing in inappropriate indications. DESIGN: Prospective, closed cohort supplemented by a developmental evaluation. SETTING AND PARTICIPANTS: Residents of designated wards in 24 LTC centers in Québec, Canada. METHODS: Provincial guidelines were disseminated, followed by the implementation of an integrated knowledge translation and mobilization strategy, including training, coaching, clinical tools, evaluation of clinical practices, and a change management strategy. Antipsychotic, benzodiazepine, and antidepressant prescriptions; BPSD; and falls were evaluated every 3 months, for 9 months, from January to October 2018. Semistructured interviews (n = 20) were conducted with LTC teams to evaluate the implementation of OPUS-AP. RESULTS: Of 1054 residents, 78.3% had an MNCD diagnosis and 51.7% an antipsychotic prescription. The cohort included 464 residents with both MNCD and antipsychotic prescription. Antipsychotic deprescribing (cessation or dose decrease) was attempted in 220 of the 344 residents still admitted at 9 months. Complete cessation was observed in 116 of these residents (52.7%) and dose reduction in 72 (32.7%), for a total of 188 residents (85.5%; 95% confidence interval: 80.1%, 89.8%). A decrease in benzodiazepine prescriptions and improvements in Cohen-Mansfield Agitation Inventory scores were observed among residents who had their antipsychotics deprescribed. Caregivers and clinicians expressed satisfaction as a result of observing an improved quality of life among residents. CONCLUSIONS AND IMPLICATIONS: Antipsychotic deprescribing was successful in a vast majority of LTC residents with MNCD without worsening of BPSD. Based on this success, phase 2 of OPUS-AP is now under way in 129 LTC centers in Québec.