End-of-Life Care Transitions in Assisted Living: Associations With State Staffing and Training Regulations

ObjectiveWe examined the frequency and categories of end-of-life care transitions among assisted living community decedents and their associations with state staffing and training regulations.DesignCohort study.Setting and ParticipantsMedicare beneficiaries who resided in assisted living facilities and had validated death dates in 2018–2019 (N = 113,662).MethodsWe used Medicare claims and assessment data for a cohort of assisted living decedents. Generalized linear models were used to examine the associations between state staffing and training requirements and end-of-life care transitions. The frequency of end-of-life care transitions was the outcome of interest. State staffing and training regulations were the key covariates. We controlled for individual, assisted living, and area-level characteristics.ResultsEnd-of-life care transitions were observed among 34.89% of our study sample in the last 30 days before death, and among 17.25% in the last 7 days. Higher frequency of care transitions in the last 7 days of life was associated with higher regulatory specificity of licensed [incidence risk ratio (IRR) = 1.08; P = .002] and direct care worker staffing (IRR = 1.22; P < .0001). Greater regulatory specificity of direct care worker training (IRR = 0.75; P < .0001) was associated with fewer transitions. Similar associations were found for direct care worker staffing (IRR = 1.15; P < .0001) and training (IRR = 0.79; P < .001) and transitions within 30 days of death.Conclusions and ImplicationsThere were significant variations in the number of care transitions across states. The frequency of end-of-life care transitions among assisted living decedents during the last 7 or 30 days of life was associated with state regulatory specificity for staffing and staff training. State governments and assisted living administrators may wish to set more explicit guidelines for assisted living staffing and training to help improve end-of-life quality of care.     

Feasibility of Routine Quality of Life Measurement for People Living With Dementia in Long-Term Care

ObjectivesMaximizing quality of life (QoL) is the ultimate goal of long-term dementia care. However, routine QoL measurement is rare in nursing home (NH) and assisted living (AL) facilities. Routine QoL measurement might lead to improvements in resident QoL. Our objective was to assess the feasibility of using DEMQOL-CH, completed by long-term care staff in video calls with researchers, to assess health-related quality of life (HrQoL) of NH and AL residents with dementia or other cognitive impairment.DesignCross-sectional study.Setting and ParticipantsWe included a convenience sample of 5 NHs and 5 AL facilities in the Canadian province of Alberta. Forty-two care staff who had worked in the facility for ≥3 months completed DEMQOL-CH assessments of 183 residents who had lived in the facility for 3 months or more and were aged ≥65 years. Sixteen residents were assessed independently by 2 care staff to assess inter-rater reliability.MethodsWe assessed HrQoL in people with dementia or other cognitive impairment using DEMQOL-CH, and assessed time to complete, inter-rater reliability, internal consistency reliability, and care staff ratings of feasibility of completing the DEMQOL-CH.ResultsAverage time to complete DEMQOL-CH was <5 minutes. Staff characteristics were not associated with time to complete or DEMQOL-CH scores. Inter-rater reliability [0.735, 95% confidence interval (CI): 0.712-0.780] and internal consistency reliability (0.834, 95% CI: 0.779-0.864) were high. The DEMQOL-CH score varied across residents (mean = 84.8, standard deviation = 11.20, 95% CI: 83.2-86.4). Care aides and managers rated use of the DEMQOL-CH as highly feasible, acceptable, and valuable.Conclusions and ImplicationsThis study provides a proof of concept that DEMQOL-CH can be used to assess HrQoL in NH and AL residents and provides initial indications of feasibility and resources required. DEMQOL-CH may be used to support actions to improve the QoL of residents.     

Appropriateness of End-of-Life Care in People Dying With Dementia: Applying Quality Indicators on Linked Administrative Databases

ObjectivesDementia is a progressive incurable life-limiting illness. Previous research suggests end-of-life care for people with dementia should have a symptomatic focus with an effort to avoid burdensome interventions that would not improve quality of life. This study aims to assess the appropriateness of end-of-life care in people who died with dementia in Belgium and to establish relative performance standards by measuring validated population-level quality indicators.DesignWe conducted a retrospective observational study.Setting and ParticipantsWe included all persons deceased with dementia in 2015 in Belgium. Data from 8 administratively collected population-level databases was linked.MeasuresWe used a validated set of 28 quality indicators for end-of-life dementia care. We compared quality indicator scores across 14 healthcare regions to establish relative benchmarks.ResultsIn Belgium in 2015, 10,629 people died with dementia. For indicators of appropriate end-of-life care, people who died with dementia had on average 1.83 contacts with their family physician in the last week before death, whereas 68.4% died at home or in their nursing home of residence. For indicators of inappropriate end-of-life care, 32.4% were admitted to the hospital and 36.3% underwent diagnostic testing in the last 30 days before death, whereas 25.1% died in the hospital. In the last 30 days, emergency department admission varied between 19% and 31%, dispensing of gastric protectors between 18% and 42%, and antihypertensives between 40% and 53% between healthcare regions, with at least 25% of health regions below 46%.Conclusions and ImplicationsOur study found indications of appropriate as well as inappropriate end-of-life care in people with dementia, including high rates of family physician contact, as well as high percentages of diagnostic testing, and emergency department and hospital admissions. We also found high risk-adjusted variation for multiple quality indicators, indicating opportunity for quality improvement in end-of-life dementia care.     

延续护理对颈动脉狭窄伴认知功能障碍患者生活质量的影响

目的探讨延续护理干预对老年颈动脉狭窄伴有认知功能障碍患者生活质量的影响。方法采用简明智能状态量表(MMSE)进行神经心理测查以及采用QOL-C30问卷对患者的生活质量进行调查,筛选79例颈动脉狭窄≥50%并伴有认知功能障碍的患者为样本。将79例颈动脉狭窄伴有认知功能障碍患者根据护理方案的不同分为研究组40例与对照组39例。对照组采用常规的护理措施及出院指导,研究组在此基础上给予积极的延续护理措施。比较两组患者出院后用药依从性,出院1年后的生活质量评分及认知功能评分。结果研究组用药依从性,出院1年后生活质量评分及认知功能评分均显著优于对照组(P<0.05)。结论延续护理对提高颈动脉狭窄伴有认知功能障碍患者出院后用药依从性、生活质量及认知功能有积极作用,值得临床普及推广。     

A Quality Improvement System to Manage Feeding Assistance Care in Assisted-Living

Purpose

To describe a feasible quality improvement system to manage feeding assistance care processes in an assisted living facility (ALF) that provides dementia care and the use of these data to maintain the quality of daily care provision and prevent unintentional weight loss.

Quality of Life and Pain Medication Use in Persons With Advanced Dementia Living in Long-Term Care Facilities

ObjectivesIn residents with dementia living in a long-term care facility (LTCF), un(der)treated pain may trigger behavioral disturbances, mood syndromes, and deterioration of physical functioning and self-maintenance. Because these factors can have considerable impact on the quality of life (QoL), this study aimed to (1) compare characteristics of persons with advanced dementia living in LTCFs with and without pain medication; (2) compare QoL in these persons with and without pain, stratified by type of pain medication use; and (3) explore associations between the use of paracetamol and QoL in persons with advanced dementia living in LTCFs.Design and settingThis study analyzed baseline data from the Communication, Systematic Assessment and Treatment of Pain, Medication Review, Occupational Therapy, and Safety Study; a multicenter, cluster-randomized effectiveness-implementation clinical hybrid trial in 67 Norwegian LTCF clusters.ParticipantsIn total, 407 LTCF residents (rural and urban areas) aged ≥65 years, with Functional Assessment Staging scores of 5–7 (ie, moderate to advanced dementia).Main outcome measureQoL as assessed by the 6 QUALIDEM (validated questionnaire to measure QoL in persons with dementia living in LTCF) domains applicable to persons with moderate to severe dementia. The association between QoL and paracetamol was estimated using linear mixed-effect models, adjusting for confounding variables.Results62.0% used pain medication (paracetamol, opioids, or both). QoL was lower in residents using pain medication, compared with those without pain medication [mean QUALIDEM score 68.8 (standard deviation 17.4 vs) 75.5 (standard deviation 14.6), respectively, P < .001). Multilevel analysis showed that paracetamol use was not associated with QoL.Conclusions and ImplicationsPersons with advanced dementia living in LTCF using pain medication have a lower QoL compared with those not using pain medication. These results are of key importance for the clinician because they stress the need for regular medication review and pain management. When measured cross-sectionally, use of paracetamol is not associated with increased QoL.     

Quality of End-of-Life Care for Older Adults with Dementia during the COVID-19 Pandemic

ObjectivesEnd-of-life (EOL) care during the coronavirus disease 2019 (COVID-19) pandemic has been a concern under the overwhelming pressure of health care service systems. People with dementia often receive suboptimal EOL care; thus, they may be at particular risk of poor care quality during the COVID-19 pandemic. This study investigated the interaction between dementia and pandemic on the proxies’ overall ratings and ratings for 13 indicators.DesignA longitudinal study.Setting and ParticipantsData were collected from 1050 proxies for deceased participants in the National Health and Aging Trends Study, a nationally representative sample of community-dwelling Medicare beneficiaries aged ≥65 years. Participants were included if they had died between 2018 and 2021.MethodsParticipants were categorized into 4 groups depending on the period of death (before vs during the COVID-19 pandemic) and having no vs probable dementia, as defined by a previously validated algorithm. The quality of EOL care was assessed through postmortem interviews with bereaved caregivers. Multivariable binomial logistic regression analyses were performed to examine the main effects of dementia and pandemic period, and the interaction between dementia and pandemic on ratings of quality indicators.ResultsA total of 423 participants had probable dementia at the baseline. People with dementia who died were less likely to talk about religion in the last month of life than those without dementia. Decedents during the pandemic were more likely to have an overall rating of care as being not excellent than those before the onset of the pandemic. However, the interaction between dementia and pandemic was not significant in the 13 indicators and the overall rating of EOL care quality.Conclusion and ImplicationsMost EOL care indicators preserved the level of quality, regardless of dementia and the COVID-19 pandemic. Disparities in spiritual care may exist across people with and without dementia.     

Mouth Care in Assisted Living: Potential Areas for Improvement

BackgroundPoor oral care may lead to systemic disease, and there is evidence that assisted living (AL) residents lack quality oral care; in AL, poor care may be due to staff knowledge and attitudes, as well as organizational barriers to providing care.ObjectivesDetermine AL staff knowledge and attitudes regarding mouth care and barriers to changing care.DesignSelf-administered repeated-measures questionnaires completed before and after oral care training.Setting and ParticipantsA total of 2012 direct care staff and administrators from 180 AL communities.MethodsNine knowledge questions and 8 attitude and practice intention questions, and open-ended questions regarding training and obstacles to providing oral care.ResultsOverall, 2012 participants completed pretraining questionnaires, and 1977 completed posttraining questionnaires. Baseline knowledge was high, but staff were not uniformly aware of the systemic-oral link whereby mouth care affects pneumonia and diabetes. Almost all staff reported learning a new technique (96%), including for residents who resist care (95%). Suggested areas to improve mouth care included having more hands-on experience. The primary perceived obstacles to care centered around residents who resist care and a lack of time.Conclusions and ImplicationsBased on reports of having benefitted from training, AL staff overwhelmingly noted that new knowledge was helpful, suggesting the benefit of skills-based training, especially in dementia care. Mouth care in AL has been sorely understudied, and merits additional attention.     

State Variation in Antipsychotic Use Among Assisted Living Residents With Dementia

ObjectivesMore than two-thirds of assisted living (AL) residents have dementia or cognitive impairment and antipsychotics are commonly prescribed for behavioral disturbances. As AL communities are regulated by state-level policies, which vary significantly regarding the care for people with dementia, we examined how antipsychotic prescribing varied across states among AL residents with dementia.DesignThis was an observational study using 20% sample of national Medicare data in 2017.Setting and ParticipantsThe study cohort included Medicare beneficiaries with dementia aged 65 years or older who resided in larger (≥25-bed) ALs in 2017.MethodsThe study outcome was the percentage of eligible AL person-months in which antipsychotics were prescribed for each state. We used a random intercept linear regression model to shrink estimates toward the overall mean use of antipsychotics addressing unstable estimates due to small sample sizes in some states.ResultsA total of 20,867 AL residents with dementia were included in the analysis, contributing to 194,718 person-months of observation. On average, AL residents with dementia were prescribed antipsychotics during 12.6% of their person-months. This rate varied significantly by state, with a low of 7.8% (95% CI 5.9%-10.3%) for Hawaii to a high of 20.5% (95% CI 16.4%-25.3%) for Wyoming.Conclusions and implicationsWe observed significant state variation in the prescribing of antipsychotics among AL residents with dementia using national data. These variations may reflect differences in state regulations regarding the care for AL residents with dementia and suggest the need for further investigation to ensure high quality of care.     

Living Better With Dementia: Strengths-Based Social Work Practice and Dementia Care

This article first argues that quality of life is possible despite the onset of dementia in late life. It also demonstrates how core concepts of social work practice, such as family systems theory, the strengths perspective, and use of self, can be applied to practice with dementia-affected persons. In addition, it provides practical suggestions for supporting care partners in nurturing “we-ness”, focusing on what remains rather than was is lost, and remaining authentic. When strengths-based social work practice is integrated into dementia care protocols, wellbeing can increase. As a result, the more than 40 million persons worldwide who are affected by dementia do not have to resign themselves to the despair, devastation and inevitable demise of quality of life that dominate perception of the illness.     

Racial/Ethnic Disparities in Nursing Home End-of-Life Care: A Systematic Review

ObjectiveHealth disparities are pervasive in nursing homes (NHs), but disparities in NH end-of-life (EOL) care (ie, hospital transfers, place of death, hospice use, palliative care, advance care planning) have not been comprehensively synthesized. We aim to identify differences in NH EOL care for racial/ethnic minority residents.DesignA systematic review guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses and registered in PROSPERO (CRD42020181792).Setting and ParticipantsOlder NH residents who were terminally ill or approaching the EOL, including racial/ethnic minority NH residents.MethodsThree electronic databases were searched from 2010 to May 2020. Quality was assessed using the Newcastle-Ottawa Scale.ResultsEighteen articles were included, most (n = 16) were good quality and most (n = 15) used data through 2010. Studies varied in definitions and grouping of racial/ethnic minority residents. Four outcomes were identified: advance care planning (n = 10), hospice (n = 8), EOL hospitalizations (n = 6), and pain management (n = 1). Differences in EOL care were most apparent among NHs with higher proportions of Black residents. Racial/ethnic minority residents were less likely to complete advance directives. Although hospice use was mixed, Black residents were consistently less likely to use hospice before death. Hispanic and Black residents were more likely to experience an EOL hospitalization compared with non-Hispanic White residents. Racial/ethnic minority residents experienced worse pain and symptom management at the EOL; however, no articles studied specifics of palliative care (eg, spiritual care).Conclusions and ImplicationsThis review identified NH health disparities in advance care planning, EOL hospitalizations, and pain management for racial/ethnic minority residents. Research is needed that uses recent data, reflective of current NH demographic trends. To help reduce EOL disparities, language services and cultural competency training for staff should be available in NHs with higher proportions of racial/ethnic minorities.     

Testing the Implementation of Function-focused Care in Assisted Living Settings

ObjectivesThe purpose of this study was to evaluate the Function-Focused Care for Assisted Living Using the Evidence Integration Triangle (FFC-AL-EIT) intervention.DesignFFC-AL-EIT was a randomized controlled pragmatic trial including 85 sites and 794 residents.InterventionFFC-AL-EIT was implemented by a Research Nurse Facilitator working with a facility champion and stakeholder team for 12 months to increase function and physical activity among residents. FFC-AL-EIT included (Step I) Environment and Policy Assessments; (Step II) Education; (Step III) Establishing Resident Function-Focused Care Service Plans; and (Step IV) Mentoring and Motivating.Setting and ParticipantsThe age of participants was 89.48 years [standard deviation (SD) = 7.43], and the majority were female (n = 561; 71%) and white (n = 771; 97%).MethodsResident measures, obtained at baseline, 4, and 12 months, included function, physical activity, and performance of function-focused care. Setting outcomes, obtained at baseline and 12 months, included environment and policy assessments and service plans.ResultsReach was based on 85 of 90 sites that volunteered (94%) participating. Effectiveness was based on less decline in function (P < .001), more function-focused care (P = .012) and better environment (P = .032) and policy (P = .003) support for function-focused care in treatment sites. Adoption was supported with 10.00 (SD = 2.00) monthly meetings held, 77% of settings engaged in study activities as or more than expected, and direct care workers providing function-focused care (63% to 68% at 4 months and 90% at 12 months). The intervention was implemented as intended, and education was received based on a mean knowledge test score of 88% correct. Evidence of maintenance from 12 to 18 months was noted in treatment site environments (P = .35) and policies continuing to support function-focused care (P = .28)].Conclusions and ImplicationsThe Evidence Integration Triangle is an effective implementation approach for assisted living. Future work should continue to consider innovative approaches for measuring RE-AIM outcomes.     

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

Objectives

To examine family caregivers' experiences with end-of-life care for nursing home residents with dementia and associations with the residents dying peacefully.

The Association Between Quality of Care and Quality of Life in Long-Stay Nursing Home Residents With Preserved Cognition

ObjectivesTo assess the overall quality of life of long-stay nursing home residents with preserved cognition, to examine whether the Centers for Medicare and Medicaid Service's Nursing Home Compare 5-star quality rating system reflects the overall quality of life of such residents, and to examine whether residents' demographics and clinical characteristics affect their quality of life.Design/measurementsQuality of life was measured using the Participant Outcomes and Status Measures—Nursing Facility survey, which has 10 sections and 63 items. Total scores range from 20 (lowest possible quality of life) to 100 (highest).Setting/participantsLong-stay nursing home residents with preserved cognition (n = 316) were interviewed.ResultsThe average quality- of-life score was 71.4 (SD: 7.6; range: 45.1–93.0). Multilevel regression models revealed that quality of life was associated with physical impairment (parameter estimate = −0.728; P = .04) and depression (parameter estimate = −3.015; P = .01) but not Nursing Home Compare's overall star rating (parameter estimate = 0.683; P = .12) and not pain (parameter estimate = −0.705; P = .47).ConclusionThe 5-star quality rating system did not reflect the quality of life of long-stay nursing home residents with preserved cognition. Notably, pain was not associated with quality of life, but physical impairment and depression were.     

Association Between Dementia Care Programs in Assisted Living Facilities and Transitions to Nursing Homes in Ontario,Canada: A Population-Based Cohort Study

ObjectiveWe investigate whether older adults who were newly diagnosed with dementia (severity unspecified) and resided in an assisted living facility that offered a dementia care program had a lower rate of transition to a nursing home, compared to those who resided in an assisted living facility without such a program.DesignPopulation-based retrospective cohort study.Setting and ParticipantsLinked, person-level health system administrative data on older adults who were newly diagnosed with dementia and resided in an assisted living facility in Ontario, Canada, from 2014 to 2019 (n = 977).MethodsAccess to a dementia care program in an assisted living facility (n = 57) was examined. Multivariable Cox proportional hazards regression with robust standard errors clustered on the assisted living facility was used to model the time to transition to a nursing home from the new dementia diagnosis.ResultsThere were 11.8 transitions to a nursing home per 100 person-years among older adults who resided in an assisted living facility with a dementia care program, compared with 20.5 transitions to a nursing home per 100 person-years among older adults who resided in an assisted living facility without a dementia care program. After adjustment for relevant characteristics at baseline, older adults who resided in an assisted living facility with a dementia care program had a 40% lower rate of transition to a nursing home (hazard ratio 0.60, 95% confidence interval 0.44, 0.81), compared with those in an assisted living facility without such a program at any point during the follow-up period.Conclusions and ImplicationsThe rate of transition to a nursing home was significantly lower among older adults who resided in an assisted living facility that offered a dementia care program. These findings support the expansion of dementia care programs in assisted living facilities.     

延续护理干预对COPD患者生活质量的影响

目的探讨延续护理干预对慢性阻塞性肺疾病（COPD）患者生活质量的影响。方法2011年1月-2012年1月收治的COPD患者125例,随机分为实验组65例和对照组60例。对照纽实施常规出院指导,实验组出院后实施延续护理干预。实验前后进行肺功能检测。包括用力肺活量（FVC）、第一秒用力呼气客积（FEVl）等指标,并应用生活质量（QOL）调查表对2组患者生活质量进行评分和比较。结果干预后实验组第一秒用力呼吸容积占预计值白分比（FEVl％）为（83．61±．95）,高于对照组（75．71±5．31）,干预后实验组第一秒用力呼气容积占用力肺活量百分比（FEVl／FVC）为（77．53±4．48）,高于对照组（68．94±4．48）;QOL评分总分及各维度评分干预后实验组均高于对照组。差异均有统计学意又（p〈0．05）。结论延续护理有助于改善患者肺功能,提高其生活质量。     

Quality of Life and Quality of Care for People With Dementia Receiving Long Term Institutional Care or Professional Home Care: The European RightTimePlaceCare Study

ObjectivesTo explore how quality of life (QoL) and quality of care (QoC) for people with dementia (PwD) vary across 8 European countries; to explore how QoL and QoC for PwD vary across living arrangements; and to assess the association between QoL and QoC.DesignCross-sectional survey.SettingInstitutional long term care and home care in 8 European countries (England, Estonia, Finland, France, Germany, the Netherlands, Spain, and Sweden).ParticipantsPwD receiving formal home care but at risk for admission to an institutional setting, and PwD who were recently admitted.MeasurementsQoL was assessed by the PwD and by their best informed proxies using the Quality of Life-Alzheimer's Disease scale (QoL-AD) (range 13–52). QoC was measured using quality of care indicators (eg, the presence of depressive symptoms, the presence of pressure ulcers).ResultsA total of 1123 PwD living at home (mean age 82.2, 63%women) and 791 PwD living in institutional care (mean age 84.1, 74% women) participated. QoL of PwD was most often rated highest in Sweden and England and lowest in Estonia and Spain. No differences in QoL were detected among the settings. For the QoC indicators, no consistent patterns were visible in such a way that certain countries or settings scored “higher” or “lower.” The presence of depressive symptoms was most consistently associated with lower QoL (P ≤ .001).ConclusionThere is great variation in QoL and QoC scores among European countries and settings. To gain insight into the underlying causes of these differences, more knowledge is needed about the effect of different national health care systems and dementia strategies on QoL and QoC indicators. Depressive symptoms were associated with QoL, and executing longitudinal studies investigating which factors are associated with change in QoL is highly recommended.     

A Social Work Practice Reflection on Issues Arising for LGBTI Older People Interfacing With Health and Residential Care: Rights,Decision Making and End-of-Life Care

This article is a social work practice reflection on issues arising for lesbian, gay, bisexual, transgender, and intersex (LGBTI) older people interfacing with health and residential care in Australia; focusing on clients, families, and carers in relation to rights, decision making, and end-of-life care. The article explores relevant case examples from social work practice in a health and residential care setting that highlight some specific complexities of working with this client group. This article brings greater attention to issues arising for older LBGTI when interfacing with health and residential care and has the potential to improve practice for social workers and other health professionals and improve outcomes for LGBTI older people.     

COVID-19 in Assisted Living: Protecting a Critical Long-Term Care Resource

The COVID-19 pandemic had a big impact on assisted living (AL), a vital setting in long-term care (LTC). Understanding the strengths and opportunities for improvement through practice, policy, and research are essential for AL to be prepared for the next pandemic and other challenges. AL communities experienced the pandemic in unique ways, because of varying regulatory environments, differences in familiarity with using and procuring personal protective equipment not typically used in AL (such as N95 masks), loss of family involvement, the homelike environment, and lower levels of licensed clinical staff. Being state rather than federally regulated, much less national data are available about the COVID-19 experience in AL. This article reviews what is known about cases and deaths, infection control, and the impact on residents and staff. For each, we suggest actions that could be taken and link them to the Assisted Living Workgroup Report (ALW) recommendations. Using the Center for Excellence in Assisted Living (CEAL) 15-year ALW report, we also review which of these recommendations have and have not been implemented by states in the preceding decade and half, and how their presence or absence may have affected AL pandemic preparedness. Finally, we provide suggestions for policy, practice, and research moving forward, including improving state-level reporting, staff vaccine requirements, staff training and work-life, levels of research-provider partnerships, dissemination of research, and uptake of a holistic model of care for AL.