End Of Life In Dementia Research Articles

Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing

BackgroundInterventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner.MethodsCross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction.DiscussionIn the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful.Trial registrationThe CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform.

Cross-cultural conceptualization of a good end of life with dementia: a qualitative study.

BackgroundResearch on the nature of a “good death” has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models.MethodsWe combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies.ResultsFourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: “Pain and Symptoms Controlled,” “Being Provided Basic Care,” and “A Place like Home.” Other themes were “Having Preferences Met,” “Receiving Respect as a Person,” “Care for Caregivers,” “Identity Being Preserved,” “Being Connected,” and “Satisfaction with Life and Spiritual Well-being.” “Care for Caregivers” showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes.ConclusionsThe common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model.Trial registrationThe Graduate School and Faculty of Medicine Kyoto University (R1924–1).Supplementary InformationThe online version contains supplementary material available at 10.1186/s12904-022-00982-9.

Defining end of life in dementia: A systematic review

Background: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. Aim: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. Design: Systematic review and narrative synthesis. Data Sources: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. Results: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. Conclusion: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

Cross‐cultural acceptability of interventions at the end of life in dementia: Video vignette study design and pilot evaluation (ERC CONT‐END WP1)

AbstractBackgroundIn dementia, gradual cognitive and physical decline imply that control over life is typically lost. Interventions such as advance care planning (ACP), technology, or‐more extreme‐euthanasia can increase control over the end of life. So far, little is known about acceptability of these interventions from the perspective of persons with dementia and others involved. This study examines the cross‐cultural acceptability of four end‐of‐life interventions in dementia which contain an element of striving for control. We describe the development and pilot‐testing of video vignettes that explain interventions in a standardized manner.MethodThe CONT‐END study Work Package 1 (NTR 7985) employs a cross‐sectional mixed‐methods design to assess acceptability of two types of ACP, technology use at the end of life and euthanasia, in three groups (persons with dementia, their family caregivers and physicians) in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). Participants (150 per country) are interviewed about acceptability of the interventions. We will examine different acceptability by group and country and explore potentially associated factors such as coping style. We are pilot testing the acceptability, feasibility and burden of four video vignettes in persons with dementia and their family caregivers in the Netherlands.ResultWe will demonstrate the video vignettes to explain the interventions. The first interviews indicate that persons with dementia and their family caregivers find the scripts of the video vignettes understandable, acceptable, feasible and not burdensome. They additionally commented on the subject matter in that they felt a current need for ACP on, for example, hospitalization, but would prefer to discuss need for technology and euthanasia later. We will present the pilot results and discuss hypotheses about acceptability of the four interventions in the three groups and six countries.ConclusionThe CONT‐END study will provide insight into cross‐cultural acceptability of interventions in dementia care from the perspective of persons with dementia, their family caregivers and physicians. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful.

Nutrition and hydration for people living with dementia near the end of life: A qualitative systematic review.

AimsTo synthesize the qualitative evidence of the views and experiences of people living with dementia, family carers, and practitioners on practice related to nutrition and hydration of people living with dementia who are nearing end of life.DesignSystematic review and narrative synthesis of qualitative studies.Data sourcesMEDLINE, Embase, PsycINFO, CINAHL.Review methodsDatabases were searched for qualitative studies from January 2000‐February 2020. Quantitative studies, or studies reporting on biological mechanisms, assessments, scales or diagnostic tools were excluded. Results were synthesized using a narrative synthesis approach with thematic analysis.ResultsTwenty studies were included; 15 explored the views of practitioners working with people living with dementia in long‐term care settings or in hospitals. Four themes were developed: challenges of supporting nutrition and hydration; balancing the views of all parties involved with ‘the right thing to do’; national context and sociocultural influences; and strategies to support nutrition and hydration near the end of life in dementia.ConclusionThe complexity of supporting nutrition and hydration near the end of life for someone living with dementia relates to national context, lack of knowledge, and limited planning while the person can communicate.ImpactThis review summarizes practitioners and families’ experiences and highlights the need to include people living with dementia in studies to help understand their views and preferences about nutrition and hydration near the end of life; and those of their families supporting them in the community. The review findings are relevant to multidisciplinary teams who can learn from strategies to help with nutrition and hydration decisions and support.

Families' Experiences With End-of-Life Care in Nursing Homes and Associations With Dying Peacefully With Dementia

ObjectivesTo examine family caregivers' experiences with end-of-life care for nursing home residents with dementia and associations with the residents dying peacefully. DesignA secondary data analysis of family caregiver data collected in the observational Dutch End of Life in Dementia (DEOLD) study between 2007 and 2010. Setting and participantsData were collected at 34 Dutch nursing homes (2799 beds) representing the nation. We included 252 reports from bereaved family members of nursing home residents with dementia. MeasuresThe primary outcome was dying peacefully, assessed by family members using an item from the Quality of Dying in Long-term Care instrument. Unpleasant experiences with end-of-life care were investigated using open-ended questions. Overall satisfaction with end-of-life care was assessed with the End-of-Life Satisfaction With Care (EOLD-SWC) scale, and families' appraisal of decision making was measured with the Decision Satisfaction Inventory. Associations were investigated with multilevel linear regression analyses using generalized estimating equations. ResultsFamilies' reports of unpleasant experiences translated into 2 themes: neglect and lack of respect. Neglect involved facing inaccessibility, disinterest, or discontinuity of relations, and negligence in tailored care and information. Lack of respect involved perceptions of being purposefully disregarded, an insensitive approach towards resident and family, noncompliance with agreements, and violations of privacy. Unpleasant experiences with end-of-life care were negatively associated with families' perceptions of the resident dying peacefully. Families' assessment of their relative dying peacefully was positively associated with satisfaction with end-of-life care and decision making. Conclusions/ImplicationsFamilies' reports of unpleasant experiences with end-of-life care may inform practice to improve perceived quality of dying of their loved ones. Humane and compassionate care and attention from physicians and other staff for resident and family may facilitate recollections of a peaceful death.

Home is where the future is: The BrightFocus Foundation consensus panel on dementia care

IntroductionA national consensus panel was convened to develop recommendations on future directions for home-based dementia care (HBDC). MethodsThe panel summarized advantages and challenges of shifting to HBDC as the nexus of care and developed consensus-based recommendations. ResultsThe panel developed five core recommendations: (1) HBDC should be considered the nexus of new dementia models, from diagnosis to end of life in dementia; (2) new payment models are needed to support HBDC and reward integration of care; (3) a diverse new workforce that spans the care continuum should be prepared urgently; (4) new technologies to promote communication, monitoring/safety, and symptoms management must be tested, integrated, and deployed; and (5) targeted dissemination efforts for HBDC must be employed. DiscussionHBDC represents a promising paradigm shift to improve care for those living with dementia and their family caregivers: these recommendations provide a framework to chart a course forward for HBDC.

Experiences of end of life amongst family carers of people with advanced dementia: longitudinal cohort study with mixed methods

BackgroundMany studies have examined the mental health of carers of people with dementia. Few have examined their experiences in the advanced stages of disease and into bereavement. We aimed to understand the experiences of carers during advanced dementia exploring the links between mental health and experiences of end of life care.MethodsMixed methods longitudinal cohort study. Thirty-five family carers of people with advanced dementia (6 at home, 29 in care homes) were recruited and assessed monthly for up to nine months or until the person with dementia died, then at two and seven months into bereavement. Assessments included: Hospital Anxiety and Depression Scale, Short Form 12 health–related quality of life, 22-item Zarit Burden Interview, Brief Coping Orientation to Problems Experienced, Inventory of Complicated Grief and Satisfaction with Care at End of Life in Dementia. Subsequently, 12 carers (34%) were bereaved and 12 undertook a qualitative interview two months after death; these data were analysed thematically. We analysed quantitative and qualitative data independently and then merged findings at the point of interpretation.ResultsAt study entry psychological distress was high; 26% reached caseness for depression and 41% for anxiety and median complicated grief scores were 27 [IQR 22–37] indicating that on average 11 of the 16 grief symptoms occurred at least monthly. Physical health reflected population norms (mean = 50) and median burden scores were 17 [IQR 9–30]. Three qualitative themes were identified: the importance of relationships with care services, understanding of the progression of dementia, and emotional responses to advanced dementia. An overarching theme tying these together was the carer’s ability to control and influence end of life care.ConclusionsWhile carers report high levels of psychological distress during advanced dementia, the experience of end of life care in dementia may be amenable to change with the provision of sensitive and timely information about the natural progression of dementia. Regular health status updates and end of life discussions can help families understand dementia progression and prepare for end of life. The extent to which our findings reflect practice across the UK or internationally warrants further investigation.

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

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. 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. 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. 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.

Pragmatic cluster randomised controlled trial of facilitated family case conferencing compared with usual care for improving end of life care and outcomes in nursing home residents with advanced dementia and their families: the IDEAL study protocol.

BackgroundCare for people with advanced dementia requires a palliative approach targeted to the illness trajectory and tailored to individual needs. However, care in nursing homes is often compromised by poor communication and limited staff expertise. This paper reports the protocol for the IDEAL Project, which aims to: 1) compare the efficacy of a facilitated approach to family case conferencing with usual care; 2) provide insights into nursing home- and staff-related processes influencing the implementation and sustainability of case conferencing; and 3) evaluate cost-effectiveness.Design/MethodsA pragmatic parallel cluster randomised controlled trial design will be used. Twenty Australian nursing homes will be randomised to receive either facilitated family case conferencing or usual care.In the intervention arm, we will train registered nurses at each nursing home to work as Palliative Care Planning Coordinators (PCPCs) 16 h per week over 18 months. The PCPCs’ role will be to: 1) use evidence-based ‘triggers’ to identify optimal time-points for case conferencing; 2) organise, facilitate and document case conferences with optimal involvement from family, multi-disciplinary nursing home staff and community health professionals; 3) develop and oversee implementation of palliative care plans; and 4) train other staff in person-centred palliative care.The primary endpoint will be symptom management, comfort and satisfaction with care at the end of life as rated by bereaved family members on the End of Life in Dementia (EOLD) Scales. Secondary outcomes will include resident quality of life (Quality of Life in Late-stage Dementia [QUALID]), whether a palliative approach is taken (e.g. hospitalisations, non-palliative medical treatments), staff attitudes and knowledge (Palliative Care for Advanced Dementia [qPAD]), and cost effectiveness. Processes and factors influencing implementation, outcomes and sustainability will be explored statistically via analysis of intervention ‘dose’ and qualitatively via semi-structured interviews. The pragmatic design and complex nature of the intervention will limit blinding and internal validity but support external validity.DiscussionThe IDEAL Project will make an important contribution to the evidence base for dementia-specific case conferencing in nursing homes by considering processes and contextual factors as well as overall efficacy. Its strengths and weaknesses will both lie in its pragmatic design.Trial registrationAustralian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12612001164886. Registered 02/11/2012.

Advance Care Planning in Nursing Home Patients With Dementia: A Qualitative Interview Study Among Family and Professional Caregivers

ObjectiveThe aim of this study was to describe the process of advance care planning (ACP) and to explore factors related to the timing and content of ACP in nursing home patients with dementia, as perceived by family, physicians, and nurses. DesignA qualitative descriptive study. MethodsA total of 65 in-depth qualitative interviews were held with families, on-staff elderly care physicians, and nurses of 26 patients with dementia who died in the Dutch End Of Life in Dementia (DEOLD) study. Interviews were coded and analyzed to find themes. ResultsFamily, nurses, and physicians of all patients indicated they had multiple contact moments during nursing home stay in which care goals and treatment decisions were discussed. Nearly all interviewees indicated that physicians took the initiative for these ACP discussions. Care goals discussed and established during nursing home stay and the terminology to describe care goals varied between facilities. Regardless of care goals and other factors, cardiopulmonary resuscitation (CPR) and hospitalization were always discussed in advance with family and commonly resulted in a do-not-resuscitate (DNR) and a do-not-hospitalize (DNH) order. The timing of care planning discussions about other specific treatments or conditions and the content of treatment decisions varied. The factors that emerged from the interviews as related to ACP were general strategies that guided physicians in initiating ACP discussions, patient's condition, wishes expressed by patient or family, family's willingness, family involvement, continuity of communication, consensus with or within family, and general nursing home policy. Two influential underlying strategies guided physicians in initiating ACP discussions: (1) wait for a reason to initiate discussions, such as a change in health condition and (2) take initiative to discuss possible treatments (actively, including describing scenarios). ConclusionsACP is a multifactorial process, which may lean on professional caregivers' guidance. The most acute decisions are covered in advance, but a responsive as well as a proactive style is seen with other treatment decisions. Further research is needed to increase understanding of whether and how the physicians' strategies affect care processes and outcomes.

Measuring End-of-Life Care and Outcomes in Residential Care/Assisted Living and Nursing Homes

ContextThe two primary residential options for older adults who require supportive care are nursing homes and residential care/assisted living. More than one-quarter of all deaths in the U.S. occur in these settings. Although the information available on end of life in long-term care has been growing, the comparative suitability of various measures to guide this work is unknown. ObjectivesTo determine the optimal measures to assess end-of-life care and outcomes in nursing homes and residential care/assisted living. MethodsA total of 264 family members of decedents from 118 settings were interviewed and provided data on 11 instruments that have been used in, but not necessarily developed for, long-term care populations; Overall, 20 scales and subscales/indices were evaluated. Measures were compared on their psychometric properties and the extent to which they discriminated among important resident, family, and setting characteristics. ResultsPrioritizing measures that distinguish the assessment of care from the assessment of dying, and secondarily that exhibit an acceptable factor structure, this study recommends two measures of care—the Family Perceptions of Physician—Family Caregiver Communication and the End of Life in Dementia (EOLD)-Satisfaction With Care—and two measures of outcomes—the EOLD-Symptom Management and the EOLD-Comfort Assessment in Dying. An additional measure to assess outcomes is the Mini-Suffering State Examination (MSSE). The care measures and the MSSE are especially valuable as they discriminate between decedents who were and were not transferred immediately before death, an important outcome, and whether the family expected the death, a useful target for intervention. ConclusionDespite these recommendations, measurement selection should be informed not only on the basis of psychometric properties but also by specific clinical and research needs. The data in this manuscript will help researchers, clinicians, and administrators understand the implications of choosing various measures for their work.

Retrospective and Prospective Data Collection Compared in the Dutch End of Life in Dementia (DEOLD) Study

Studying end of life in dementia patients is challenging because of ill-defined prognoses and frequent inability to self-report. We aim to quantify and compare (1) feasibility and (2) sampling issues between prospective and retrospective data collection specific to end-of-life research in long-term care settings. The observational Dutch End of Life in Dementia study (DEOLD; 2007 to 2011) used both prospective data collection (28 facilities; 17 nursing home organizations/physician teams; questionnaires between January 2007 and July 2010, survival until July 2011) and retrospective data collection (exclusively after death; 6 facilities; 2 teams, questionnaires between November 2007 and March 2010). Prospective collection extended from the time of admission to the time after death or conclusion of the study. Prospectively, we recruited 372 families: 218 residents died (59%) and 184 (49%) had complete physician and family after-death assessments. Retrospectively, 119 decedents were enrolled, with 64 (54%) complete assessments. Cumulative data collection over all homes lasted 80 and 8 years, respectively. Per complete after-death assessments in a year, the prospective data collection involved 37.9 beds, whereas this was 7.9 for the retrospective data collection. Although age at death, sex, and survival curves were similar, prospectively, decedents' length of stay was shorter (10.3 vs. 31.4 mo), and fewer residents had advanced dementia (39% vs. 54%). Regarding feasibility, we conclude that prospective data collection is many fold more intensive and complex per complete after-death assessment. Regarding sampling, if not all are followed until death, it results in right censoring and in different, nonrepresentative samples of decedents compared with retrospective data collection. Future work may adjust or stratify for dementia severity and length of stay as key issues to promote comparability between studies.

Feedback on end-of-life care in dementia: the study protocol of the FOLlow-up project.

BackgroundEnd-of-life care in dementia in nursing homes is often found to be suboptimal. The Feedback on End-of-Life care in dementia (FOLlow-up) project tests the effectiveness of audit- and feedback to improve the quality of end-of-life care in dementia.Methods/DesignNursing homes systematically invite the family after death of a resident with dementia to provide feedback using the End-of-Life in Dementia (EOLD) – instruments. Two audit- and feedback strategies are designed and tested in a three-armed Randomized Controlled Trial (RCT): a generic feedback strategy using cumulative EOLD-scores of a group of patients and a patient specific feedback strategy using EOLD-scores on a patient level. A total of 18 nursing homes, three groups of six homes matched on size, geographic location, religious affiliation and availability of a palliative care unit were randomly assigned to an intervention group or the control group. The effect on quality of care and quality of dying and the barriers and facilitators of audit- and feedback in the nursing home setting are evaluated using mixed-method analyses.DiscussionThe FOLlow-up project is the first study to assess and compare the effect of two audit- and feedback strategies to improve quality of care and quality of dying in dementia. The results contribute to the development of practice guidelines for nursing homes to monitor and improve care outcomes in the realm of end-of-life care in dementia.Trial registrationThe Netherlands National Trial Register (NTR). Trial number: NTR3942

Scales for the Evaluation of End-of-Life Care in Advanced Dementia

The paucity of valid and reliable instruments designed to measure end-of-life experiences limits advanced dementia and palliative care research. Two end-of-life in dementia (EOLD) scales that evaluate the experiences of severely cognitively impaired persons and their health care proxies (HCP) have been developed: (1) symptom management (SM) and (2) satisfaction with care (SWC). The aim of this study was to examine the sensitivity of the EOLD scales in detecting significant differences in clinically relevant outcomes in nursing home residents with advanced dementia. The SM-EOLD scale was sensitive to detecting changes in comfort among residents with pneumonia, pain, dyspnea, and receiving burdensome interventions. The SWC-EOLD scale was sensitive to detecting changes in HCP satisfaction with the care of residents when addressing whether the health care provider spent >15 minutes discussing the resident's advanced care planning, whether the physician counseled about the resident's live expectancy, whether the resident resided in a special care unit, and whether the physician counseled possible resident health problems. This study extends the psychometric properties of the EOLD scales by showing the sensitivity to clinically meaningful change in these scales to specific outcomes related to end-of-life care and quality of life among residents with end-stage advanced dementia and their HCPs.

Care at the end of life for people with dementia living in a care home: a qualitative study of staff experience and attitudes

The aim of this study is to examine barriers and facilitators to care home staff delivering improved end-of-life care for people with dementia. Individual qualitative interviews of 58 staff in a 120-bed nursing home where the staff and the residents' religion differed were carried out. Interviews continued until a maximum variation sample was achieved and theoretical saturation was reached. The staff felt warmly towards the residents and felt they could recognise when they were near death. Care staff, nurses and doctors did not see themselves as a team and communicated poorly with relatives about approaching death. The staff used opaque euphemisms and worried about being blamed. They were often unaware of or had concerns about the validity of advance care plans. They knew of the religious rituals around death but frequently misunderstood religious tradition. The staff require education and support about discussing and implementing plans around care at the end of life in dementia and about cultural issues around death to improve practice. This would enable the staff to implement advance care plans, knowing that they will be supported. Education would encompass communicating the complicated, unpredictable path of dementia near the time of death explicitly but sensitively, including recognising that people often do not hear difficult messages and are unable to take on large quantities of information at once. The staff need to know about the resident's religious and cultural ideas as well as ritual practice.

Measuring the Quality of Dying and Quality of Care When Dying in Long-Term Care Settings: A Qualitative Content Analysis of Available Instruments

Context Long-term care (LTC) settings have become a significant site for end-of-life care; consequently, instruments that assess the quality of dying and care may be useful in these settings. Objectives To evaluate the content of available measurement instruments to assess the quality of dying and care when dying. Methods Qualitative content analysis to categorize items as structure of care, process of care, satisfaction with health care (the first three representing quality of care and its evaluation), quality of dying, or patient factors. Results Instruments that measure mostly quality of care and its evaluation are the Family Perception of Physician-Family Caregiver Communication, End-of-Life in Dementia (EOLD) Satisfaction With Care, Family Perception of Care Scale, Toolkit of Instruments to Measure End-of-Life Care after-death bereaved family member interview (nursing home version), and the Family Assessment of Treatment at the End-of-Life Short version. Instruments measuring quality of dying are the EOLD-Comfort Assessment in Dying, EOLD-Symptom Management, Mini-Suffering State Examination, and Palliative Care Outcome Scale. The Quality of Dying in Long-Term Care measures care and dying. The Minimum Data Set-Palliative Care measures mostly dying and patient factors. The instruments differ in dementia specificity, time of administration, and respondent. Conclusion Instruments that assess quality when dying differ in several ways and most do not measure a single construct, which is relevant to guiding and evaluating care. Comparing psychometric properties and usefulness of instruments that measure similar constructs is the next step in determining which are best suited for use in LTC.

Evaluations of end of life with dementia by families in Dutch and U.S. nursing homes

The End-of-Life in Dementia (EOLD) scales comprise the most specific set of instruments developed for evaluations of patients' end of life by their families. It is not known whether the EOLD scales are useful for cross-national comparisons. We used a mortality follow-back design in multi-center studies in the Netherlands (pilot study 2005-2007) and the U.S.A. (1999), and we compared EOLD Satisfaction With Care (SWC; last three months of life), Symptom Management (SM; last three months) and Comfort Assessment in Dying (CAD) scores for 54 Dutch and 76 U.S. nursing home residents. SWC total scores did not differ significantly between the Dutch and U.S. studies (31.9, SD 4.7 versus 30.4, SD 6.1), but three of ten items were rated more favorable for Dutch residents, as were SM total scores (29.1, SD 9.2 versus 20.4, SD 10.6). CAD total scores did not differ (32.0, SD 5.4 versus 30.5, SD 5.9, respectively), but the "well-being" subscale was rated more favorably for Dutch residents. Results were similar after adjustment for demographics and dementia severity. The Dutch families rated end of life with dementia in nursing homes as somewhat better than did U.S. families. Although differences were small, the observed patterns were consistent. This suggests validity of the SM and CAD to assess differences in quality of dying and possible sensitivity to differences between countries or time frames. Larger, simultaneous, cross-national studies are needed to confirm usefulness of the scales and to detect areas which need improvement in the respective countries.

Satisfaction with End‐of‐Life Care for Nursing Home Residents with Advanced Dementia

To identify factors associated with satisfaction with care for healthcare proxies (HCPs) of nursing home (NH) residents with advanced dementia. Cross-sectional study. Thirteen NHs in Boston. One hundred forty-eight NH residents aged 65 and older with advanced dementia and their formally designated HCPs. MASUREMENTS: The dependent variable was HCPs' score on the Satisfaction With Care at the End of Life in Dementia (SWC-EOLD) scale (range 10-40; higher scores indicate greater satisfaction). Resident characteristics analyzed as independent variables were demographic information, functional and cognitive status, comfort, tube feeding, and advance care planning. HCP characteristics were demographic information, health status, mood, advance care planning, and communication. Multivariate stepwise linear regression was used to identify factors independently associated with higher SWC-EOLD score. The mean ages+/-standard deviation of the 148 residents and HCPs were 85.0+/-8.1 and 59.1+/-11.7, respectively. The mean SWC-EOLD score was 31.0+/-4.2. After multivariate adjustment, variables independently associated with greater satisfaction were more than 15 minutes discussing advance directives with a care provider at the time of NH admission (parameter estimate=2.39, 95% confidence interval (CI)=1.16-3.61, P<.001), greater resident comfort (parameter estimate=0.10, 95% CI=0.02-0.17, P=.01), care in a specialized dementia unit (parameter estimate=1.48, 95% CI=0.25-2.71, P=.02), and no feeding tube (parameter estimate=2.87, 95% CI=0.46-5.25, P=.02). Better communication, greater resident comfort, no tube feeding, and care in a specialized dementia unit are modifiable factors that may improve satisfaction with care in advanced dementia.

The Validity and Reliability of Scales for the Evaluation of End-of-Life Care in Advanced Dementia

The lack of valid and reliable instruments designed to measure the experiences of older persons with advanced dementia and those of their health care proxies has limited palliative care research for this condition. This study evaluated the reliability and validity of 3 End-of-Life in Dementia (EOLD) scales that measure the following outcomes: (1) satisfaction with the terminal care (SWC-EOLD), (2) symptom management (SM-EOLD), and (3) comfort during the last 7 days of life (CAD-EOLD). Data were derived from interviews with the health care proxies (SWC-EOLD) and primary care nurses (SM-EOLD, CAD-EOLD) for 189 nursing home residents with advanced dementia living in 15 Boston-area facilities. The scales demonstrated satisfactory to good reliability: SM-EOLD (alpha=0.68), SWC-EOLD (alpha=0.83), and CAD-EOLD (alpha=0.82). The convergent validity of these scales, as measured against other established instruments assessing similar constructs, was good (correlation coefficients ranged from 0.50 to 0.81). The results of this study demonstrate that the 3 EOLD scales demonstrate "internal consistency" reliability and demonstrate convergent validity, and further establish their utility in palliative care dementia research.