Urinary Tract Infection Guideline Adherence in a Dutch Sentinel Nursing Home Surveillance Network.

OBJECTIVES: To investigate guideline adherence 3 years after the introduction of a national guideline on urinary tract infections (UTIs) in frail older adults. Appropriate use of urine dipstick tests, treatment decisions, and antibiotic drug choices in residents with (suspected) UTIs without a catheter were examined. DESIGN: Observational prospective study. SETTING AND PARTICIPANTS: Nineteen nursing homes participating in a Dutch Sentinel Nursing Home Surveillance Network. METHODS: As of September 2021, for a 3-month period, medical practitioners recorded additional clinical information in the electronic health record in case of a (suspected) UTI. Based on this information, adherence to guideline recommendations was assessed. Nonadherence was classified into 2 categories: (1) "intentional nonadherence" as reported by practitioners and (2) "nonadherence otherwise" applied to all other cases where the recorded information was discordant with the guideline recommendations. RESULTS: A total of 532 cases of (suspected) UTIs from 469 residents were analyzed. In 455 cases (86%), dipsticks were used. For the 231 cases where clinical signs and symptoms already indicated no UTI treatment according to the guideline, a dipstick was still inappropriately ordered in 196 cases (85%). The decision to prescribe or withhold antibiotics was in 69% of the cases adherent, in 6% intentionally nonadherent, and in 25% nonadherent otherwise. The type of prescribed antibiotic was adherent to the recommended antibiotics for cystitis in 88% and for UTIs with signs of tissue invasion in 48%. Overall, for 40% of suspected UTIs, adherence to all relevant recommendations could be established, and in 9% practitioners reported intentional nonadherence to the guideline. CONCLUSIONS AND IMPLICATIONS: There is considerable room for improvement in all clinical stages of managing a suspected UTI in Dutch nursing homes, particularly with regard to the importance of patient's clinical signs and symptoms for appropriate dipstick use and antibiotic UTI treatments.

Referral to geriatric rehabilitation: a scoping review of triage factors in acutely hospitalised older patients.

OBJECTIVE: Old or frail acutely hospitalised patients can benefit from geriatric rehabilitation but criteria concerning referral decisions are unclear. This review presents an overview of clinical factors associated with referral to geriatric rehabilitation that may further consensus between hospital and rehabilitation professionals on triage. DESIGN: Scoping review. METHODS: A review was conducted following Arksey and O'Malley's framework. The search included literature concerning a broad spectrum of acutely hospitalised patients and factors associated with their referral to geriatric rehabilitation. RESULTS: Selected abstracts were categorised into distinct geriatric rehabilitation care pathways such as stroke, hip fracture, amputation of lower limb, cardiac and oncologic rehabilitation. Abstracts on internal medical patients were further reviewed and 29 studies were included. A total of 13 studies focused on factors identifying rehabilitation needs and 16 on factors associated with outcome of geriatric rehabilitation. Triage factors were diverse and included frailty status, functional decline, cognitive symptoms and multimorbidity. Mood symptoms and living situation further specified post-acute care needs. In overview, triage factors could be characterised as demographic (n = 4), diagnosis-related (n = 8), mental (n = 6), functional (n = 10) or multi-domain (n = 12) and mapped in a transitional care pathway. CONCLUSIONS AND IMPLICATIONS: Frailty and functional decline are characteristics frequently associated with referral to geriatric rehabilitation of acutely hospitalised internal medical patients. A comprehensive geriatric assessment or a simpler multi-domain set of tests reveals rehabilitation needs and approximates a functional prognosis. Professional consensus on factors and timing of triage in hospital is within reach.

Spiritual care provided by nursing home physicians: a nationwide survey.

OBJECTIVE: To examine perceptions and experiences regarding providing spiritual care at the end of life of elderly care physicians practising in nursing homes in the Netherlands, and factors associated with spiritual care provision. METHODS: A cross-sectional survey was sent to a representative sample of 642 elderly care physicians requesting information about their last patient who died and the spiritual care they provided. We compared their general perception of spiritual care with spiritual and other items abstracted from the literature and variables associated with the physicians' provision of spiritual care. Self-reported reasons for providing spiritual care were analysed with qualitative content analysis. RESULTS: The response rate was 47.2%. Almost half (48.4%) provided spiritual end-of-life care to the last resident they cared for. Half (51.8%) identified all 15 spiritual items, but 95.4% also included psychosocial items in their perception of spirituality and 49.1% included other items. Physicians who included more non-spiritual items reported more often that they provided spiritual care, as did more religious physicians and those with additional training in palliative care. Reasons for providing spiritual care included a request by the resident or the relatives, resident's religiousness, fear of dying and involvement of a healthcare chaplain. CONCLUSION: Most physicians perceived spirituality as a broad concept and this increased self-reported spiritual caregiving. Religious physicians and those trained in palliative care may experience fewer barriers to providing spiritual care. Additional training in reflecting upon the physician's own perception of spirituality and training in multidisciplinary spiritual caregiving may contribute to the quality of end-of-life care for nursing home residents.

Quality Indicators of Primary Care Provider Engagement in Nursing Home Care.

The initiative described here aims to identify quality indicators (QIs) germane to the international practice of primary care providers (PCP) in post-acute and long-term care in order to demonstrate the added value of medical providers in nursing homes (NHs). A 7-member international team identified and adapted existing QIs to the AMDA competencies for medical providers. QI sources included the ACOVE 3 Quality Indicators (2007), NH Quality Indicators (2004), NH Residential Care Quality Indicators (2002), and AGS Choosing Wisely (2014). We recruited a technical expert panel (TEP) consisting of 11 panelists from the US, Canada, and the European Union, selected for their knowledge and leadership in post-acute and long-term care. The TEP, using a RAND Modified Delphi approach, provided pre-meeting ratings, discussed items in-person for clarification, and re-rated items following discussion. When panelists rated more than 1 option for a particular QI as valid and feasible, the most stringent option was selected for inclusion in the final candidate set of QIs. Panelists confidentially rated an initial 103 items on validity and feasibility of implementation. During the meeting, panelists added 18 QIs and modified 18. In post-meeting analysis, we eliminated 7 QIs rated not valid and 9 QIs for which a more stringent QI was rated valid and feasible. This resulted in a final set of 97 QIs rated valid and feasible and 8 rated valid but not feasible. This set of QIs for PCPs in the NH identified practices in which provider engagement adds value through expertise in geriatric syndromes, employing evidence-based practice, advocating for residents, delivering person-centered care, facilitating advance care planning, and communicating effectively to coordinate care. Next steps include pilot testing and evaluating the association between adherence to QIs, PCP staffing models, and better outcomes.

Changes in Care Goals and Treatment Orders Around the Occurrence of Health Problems and Hospital Transfers in Dementia: A Prospective Study.

OBJECTIVES: To explore changes in care goals and treatment orders around the occurrence of pneumonia and intake problems, and whether hospitalization is in line with earlier agreed-upon do-not-hospitalize orders. DESIGN: Data were collected as part of the Dutch End of Life in Dementia study (2007-2011), a longitudinal observational study with up to 3.5 years of follow-up. SETTING: Long-term care facilities (N = 28) in the Netherlands. PARTICIPANTS: Newly admitted nursing home patients (N = 372) in various stages of dementia. MEASUREMENTS: Semiannually, physicians completed questionnaires about care goals and treatment orders, and they continuously registered episodes of pneumonia, intake problems and hospitalization. We report on changes in care goals and treatment orders during follow-up in relation to the developing of pneumonia and intake problems and on hospitalization and reasons for hospitalization. RESULTS: The proportion of patients with palliative care goals and do-not-treat orders rose during follow-up, especially before death. Treatment orders most frequently referred to resuscitation and hospitalization (do-not order increased from 73% to 92%, and from 28% to 76%, respectively). The proportions of patients with a palliative care goal and do-not-treat orders were similar after developing pneumonia, but increased after intake problems. During follow-up, 46 patients were hospitalized one or more times. Hospitalization occurred despite a do-not-hospitalize order in 21% of decisions. The most frequently reported reason for hospitalization was a fracture, especially in patients with a do-not-hospitalize order. CONCLUSION: Care plans, including global care goals (predominantly palliative care goals), are made soon after admission, and specific treatment orders are agreed upon in more detail when the condition of the patient worsens. Establishing care plans shortly after nursing home admission may help to prevent burdensome treatment.

End-of-life treatment decisions in nursing home residents dying with dementia in the Netherlands.

OBJECTIVE: The objective was to describe end-of-life treatment decisions for patients dying with dementia in various stages of dementia in long-term care facilities in the Netherlands with elderly care physicians responsible for treatment and care. METHODS: We present data collected in the nationally representative Dutch End of Life in Dementia study (2007-2011). Within 2 weeks after death, 103 physicians completed questionnaires about the last phase of life in 330 residents with dementia who resided in 1 of 34 participating long-term care facilities. We used descriptive statistics. RESULTS: Advance directives were rare (4.9%). A minority was hospitalized (8.0%) in the last month (mainly for fractures) or received antibiotics (24.2%) in the last week (mainly for pneumonia). Four residents received tube feeding or rehydration therapy in the last week. In almost half of the residents (42.3%), decisions were made not to start potentially life-prolonging treatment such as hospital transfer and artificial nutrition and hydration. In more than half of the residents (53.7%), decisions were made to withdraw potentially life-prolonging treatment such as artificial nutrition and hydration and medication. Antibiotics were more frequently prescribed for residents with less advanced dementia, but otherwise there were no differences in treatment decisions between residents with advanced and less advanced dementia. CONCLUSIONS: Physicians often withhold potentially burdensome life-prolonging treatment in nursing home residents in all stages of dementia in the Netherlands. This suggests that the physicians feel that a palliative care approach is appropriate at the end of life in dementia in long-term care. Copyright © 2016 John Wiley & Sons, Ltd. StartCopTextCopyright © 2016 John Wiley & Sons, Ltd.

Prospective Observations of Discomfort, Pain, and Dyspnea in Nursing Home Residents With Dementia and Pneumonia.

OBJECTIVES: To describe observations of suffering in patients with dementia from the diagnosis of pneumonia until cure or death. DESIGN: Prospective observational study between January 2012 and May 2014. SETTING: Dutch nursing homes (32). PARTICIPANTS: Nursing home patients with dementia and pneumonia (n = 193). MEASUREMENTS: Independent observers performed observations of patients with dementia scheduled 13 times within the 15 days following diagnosis of pneumonia; twice daily in the first 2 days- to observe discomfort (Discomfort Scale-Dementia of Alzheimer Type; range 0-27), comfort (End Of Life in Dementia-Comfort Assessment in Dying; range 14-42), pain (Pain Assessment in Advanced Dementia; range 0-10), and dyspnea (Respiratory Distress Observation Scale; range 0-16). RESULTS: Observational data were obtained for 208 cases of pneumonia in 193 patients. In 71.2% of cases, patients received 1 or more treatments to relieve symptoms such as antipyretics, opioids, or oxygen; 89.4% received antibiotics. Discomfort was highest 1 day after diagnosis [mean Discomfort Scale-Dementia of Alzheimer Type score 8.1 (standard deviation, SD 5.8)], then declined, and stabilized around day 10 [mean 4.5 (SD 4.1)], or increased in the days preceding death. Observed pain and dyspnea followed a comparable pattern. Discomfort patterns did not differ much between cases treated with and without antibiotics. CONCLUSIONS: Pneumonia in patients with dementia involved elevated levels of suffering during 10 days following diagnosis and in the days preceding death. Overall observed discomfort was low compared with prior Dutch studies, and the number of treatments to relieve symptoms was higher. Future studies should examine whether symptoms of pneumonia can be relieved even more, and what treatments are the most effective.

Achieving consensus and controversy around applicability of palliative care to dementia.

BACKGROUND: People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision. METHODS: To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations. RESULTS: Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable. CONCLUSIONS: Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early.

From admission to death: prevalence and course of pain, agitation, and shortness of breath, and treatment of these symptoms in nursing home residents with dementia.

OBJECTIVES: Burdensome symptoms frequently develop as part of the dementia trajectory and influence quality of life. We explore the course of symptoms and their treatment during nursing home stay to help target adequate symptom management. DESIGN: Data were collected as part of the Dutch End of Life in Dementia study, a longitudinal observational study with up to 3.5 years of follow-up. Physicians performed assessments at baseline, semiannually, and shortly after death of pain, agitation, shortness of breath, and treatment provided for these symptoms. SETTING: Long-term care facilities (28) in the Netherlands. PARTICIPANTS: Newly admitted nursing home residents (372) in variable stages of dementia. MEASUREMENTS: We described prevalence and course of symptoms, and treatment provided for these symptoms. We used generalized estimating equations to evaluate the longitudinal change in symptoms and their treatment, and the associations between the symptoms of pain and agitation, as well as between stage of dementia and symptoms. RESULTS: Pain was common (varying from 47% to 68% across the semiannual assessments) and frequently persistent (36%-41% of all residents); it increased to 78% in the last week of life. Agitation was the most common symptom (57%-71%), and also frequently persistent (39%-53%), yet it decreased to 35% in the last week of life. Shortness of breath was less common (16%-26%), but it increased to 52% at the end of life. Pain was not significantly associated with agitation. Advanced dementia was associated with more pain only. Treatment changed in particular at the end of life. Pain was treated mostly with acetaminophen (34%-52%), and at the end of life with parenteral opioids (44%). Agitation was mostly treated nonpharmacologically (78%-92%), and at the end of life anxiolytics were the most frequently prescribed treatment (62%). Overall, aerosolized bronchodilators were the most frequently prescribed treatment for shortness of breath (29%-67%), but at the end of life, this was morphine (69%). CONCLUSION: Pain and agitation were common and frequently persisted in residents with dementia during nursing home stay, but symptom management intensified only at the end of life. Symptom control may be suboptimal from admission, and a stronger focus on symptom control is needed at an earlier stage than the end of life.

Comfort goal of care and end-of-life outcomes in dementia: A prospective study.

BACKGROUND: Many people with dementia die in a nursing home. A comfort care goal may be beneficial. Little research has examined the relationship between care goals and outcome. AIM: To investigate whether family satisfaction with end-of-life care and quality of dying is associated with whether or not dementia patients have a comfort goal shortly after admission. DESIGN AND SETTING: Prospective data collection from 28 long-term care facilities (the Dutch End of Life in Dementia study). We included 148 patients who died after prospective follow-up. Main outcomes were family satisfaction (End-of-Life in Dementia-Satisfaction with Care scale; range: 10-40) and quality of dying (End-of-Life in Dementia-Comfort Assessment in Dying; range: 14-42). We performed generalized estimating equations regression analyses to analyze whether these outcomes are associated with a comfort goal established shortly after admission compared with another or no care goal as reported by the physician. RESULTS: Families of patients were more satisfied with end-of-life care when a comfort goal was established shortly after admission. We found this pattern only for patients who died within 6 months of admission (adjusted b: 4.5; confidence interval: 2.8, 6.3 vs -1.2; confidence interval: -3.0, 0.6 for longer stay). For quality of dying, no such association was found. CONCLUSION: We found that family satisfaction with care is related to a comfort care goal shortly after admission, but quality of dying did not. Establishing a comfort goal at an early stage may be important to the family. Advance care planning interventions should be studied for their effects on patient and family outcome.

Life-and-death decision-making in the acute phase after a severe stroke: Interviews with relatives.

BACKGROUND: Decision-making in the acute phase after a severe stroke is complex and may involve life-and-death decisions. Apart from the medical condition and prognosis, quality of life and the deliberation of palliative care should be part of the decision-making process. Relatives play an important role by informing physicians about the patient's values and preferences. However, little is known about how the patients' relatives experience the decision-making process. AIM: To elicit the perspective of relatives of severe stroke patients with regard to the decision-making process in the acute phase in order to understand how they participate in treatment decisions. DESIGN: An exploratory qualitative interview approach guided by the principles of grounded theory. SETTINGS/PARTICIPANTS: Relatives of severe stroke patients (n = 15) were interviewed about their experiences in the decision-making process in the acute phase. RESULTS: Four categories reflecting relatives' experiences were identified: (1) making decisions under time pressure, (2) the feeling of 'who am I' to decide, (3) reluctance in saying 'let her die' and (4) coping with unexpected changes. Following the treatment proposal of the physician was found to be the prevailing tendency of relatives in the decision-making process. CONCLUSION: A better understanding of the latent world of experiences of relatives that influence the decision-making process may help physicians and other health-care providers to better involve relatives in decision-making and enhance the care, including palliative care, for patients with severe stroke in line with their values and preferences. Communication between physician and relatives seems vital in this process.

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.

Factors related to establishing a comfort care goal in nursing home patients with dementia: a cohort study among family and professional caregivers.

BACKGROUND: Many people with dementia die in long-term care settings. These patients may benefit from a palliative care goal, focused on comfort. Admission may be a good time to revisit or develop care plans. OBJECTIVE: To describe care goals in nursing home patients with dementia and factors associated with establishing a comfort care goal. DESIGN: We used generalized estimating equation regression analyses for baseline analyses and multinomial logistic regression analyses for longitudinal analyses. SETTING: Prospective data collection in 28 Dutch facilities, mostly nursing homes (2007-2010; Dutch End of Life in Dementia study, DEOLD). RESULTS: Eight weeks after admission (baseline), 56.7% of 326 patients had a comfort care goal. At death, 89.5% had a comfort care goal. Adjusted for illness severity, patients with a baseline comfort care goal were more likely to have a religious affiliation, to be less competent to make decisions, and to have a short survival prediction. Their families were less likely to prefer life-prolongation and more likely to be satisfied with family-physician communication. Compared with patients with a comfort care goal established later during their stay, patients with a baseline comfort care goal also more frequently had a more highly educated family member. CONCLUSIONS: Initially, over half of the patients had a care goal focused on comfort, increasing to the large majority of the patients at death. Optimizing patient-family-physician communication upon admission may support the early establishing of a comfort care goal. Patient condition and family views play a role, and physicians should be aware that religious affiliation and education may also affect the (timing of) setting a comfort care goal.

Dying with dementia: symptoms, treatment, and quality of life in the last week of life.

CONTEXT: Burdensome symptoms present frequently in dementia at the end of life, but we know little about the symptom control provided, such as type and dosage of medication. OBJECTIVES: To investigate symptom prevalence and prescribed treatment, explore associations with quality of life (QOL) in the last week of life, and examine symptom prevalence by cause of death of nursing home residents with dementia. METHODS: Within two weeks after death, physicians completed questionnaires about symptoms and treatment in the last week for 330 nursing home residents with dementia in the Dutch End of Life in Dementia study (2007-2011). We used linear regression to assess associations with QOL, measured by the Quality of Life in Late-Stage Dementia scale. Causes of death were abstracted from death certificates. RESULTS: Pain was the most common symptom (52%), followed by agitation (35%) and shortness of breath (35%). Pain and shortness of breath were mostly treated with opioids and agitation mainly with anxiolytics. At the day of death, 77% received opioids, with a median of 90 mg/24 hours (oral equivalents), and 21% received palliative sedation. Pain and agitation were associated with a lower QOL. Death from respiratory infection was associated with the largest symptom burden. CONCLUSION: Symptoms are common in dementia at the end of life, despite the large majority of residents receiving opioids. Dosages may be suboptimal with regard to weighing of effects and side effects. Future research may employ observation on a day-to-day basis to better assess effectiveness of symptom control and possible side effects.

White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care.

BACKGROUND: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. AIM: To define optimal palliative care in dementia. METHODS: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. RESULTS: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. CONCLUSION: We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

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.

Reasons to prescribe antipsychotics for the behavioral symptoms of dementia: a survey in Dutch nursing homes among physicians, nurses, and family caregivers.

OBJECTIVES: Despite serious safety concerns, prescription rates of antipsychotics for the treatment of the behavioral and psychological symptoms of dementia remain high, especially in nursing homes. This high prevalence of antipsychotic use cannot be explained by the modest success rate reported in the literature. In this study, we aim at clarifying the reasons for prescribing an antipsychotic drug in behavioral and psychological symptoms of dementia and look at the role of nurses and family caregivers in the decision-making process that precedes the prescription of an antipsychotic drug. DESIGN: Questionnaire used in a one-on-one interview with elderly care physicians, nurses, and family caregivers. SETTING: We conducted a survey in 23 nursing homes in the Netherlands. METHOD: On each dementia ward, the physician selected 1 or 2 patients who started antipsychotics most recently. An interviewer then held a structured questionnaire with the physician, the nurse, and the first relative of the patient. The first part of the interview consisted of questions about the general ideas of the physicians and the second part consisted of case-related questions to physicians, nurses, and family caregivers. RESULTS: Physicians, nurses, and family caregivers generally consider the possible benefits of antipsychotics to outweigh the risk of side effects. The main reasons to start therapy are agitation and aggression. Physicians felt pressured by nurses to prescribe in 17% of cases. Physicians felt supported by the guideline of the Dutch Association of Elderly Care Physicians. The estimated average success rate in the discussed cases (the patient is expected to improve on the target behavior) among physicians was 50%, nurses reported 53%, and relatives 55%. The most frequently expected adverse reactions were increased fall risk, sedation, and parkinsonism. Nurses expected cognitive decline. The family felt insufficiently informed about the side effects in 44% of the cases. CONCLUSION: The interviewed nursing home physicians and nurses expect almost half of their patients with dementia and behavioral disturbances to benefit from antipsychotic therapy. Serious side effects were expected to occur only sporadically. These expectations may contribute to the high rate of antipsychotic use among these patients.

A family booklet about comfort care in advanced dementia: three-country evaluation.

OBJECTIVES: To evaluate a booklet on comfort care in dementia from the perspective of family with relevant experience, and assess nursing home resident and family factors associated with evaluations. DESIGN: Retrospective study. SETTING: Long term care facilities in French-speaking Canada, and the Netherlands and Italy. PARTICIPANTS: Bereaved family (n = 138). MEASUREMENTS: An 8-item scale assessed the booklet's acceptability. Usefulness was rated on a 0 to 10 scale, and perceived usefulness referred to usefulness if family had had the booklet during the resident's stay. Families indicated preferred ways of obtaining, and the most appropriate time to get the booklet. RESULTS: Almost all families (94%) perceived the booklet as useful. Canadian and Dutch families evaluated the booklet's contents and format favorably, whereas Italian families' evaluations were less favorable. Almost all families endorsed roles for physicians or nurses and about half additionally accepted availability through own initiative, in print or through the Internet. Preference of timing was highly variable. Better acceptability, usefulness, and availability through own initiative were independently associated with non-Italian nationality, presence of more physical signs discussed in the booklet, feeling ill-prepared, and higher satisfaction with care. A preference of receiving the booklet early was more likely in Italian families, those without university education, and those involved with older residents. CONCLUSION: The booklet is suitable to inform Dutch and Canadian families on comfort care in dementia, but implementation in Italy requires further consideration. The booklet may be integrated in advance care planning in long term care, and made available outside long term care settings to serve families who wish to be informed early.

Physicians' and nurses' perceived usefulness and acceptability of a family information booklet about comfort care in advanced dementia.

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.