Burdensome Transitions at the End of Life Among Long-Term Care Residents With Dementia

ObjectivesThe purpose of the study was to examine the frequency of burdensome care transitions at the end of life, the difference between different types of residential care facilities, and the changes occurring between 2002 and 2008.DesignA nationwide, register-based retrospective study.SettingResidential care facilities offering long-term care, including traditional nursing homes, sheltered housing with 24-hour assistance, and long-term care facilities specialized in care for people with dementia.Study groupAll people in Finland who died at the age of 70 or older, had dementia, and were in residential care during their last months of life.Main outcome measuresThree types of potentially burdensome care transition: (1) any transition to another care facility in the last 3 days of life; (2) a lack of continuity with respect to a residential care facility before and after hospitalization in the last 90 days of life; (3) multiple hospitalizations (more than 2) in the last 90 days of life. The 3 types were studied separately and as a whole.ResultsOne-tenth (9.5%) had burdensome care transitions. Multiple hospitalizations in the last 90 days were the most frequent, followed by any transitions in the last 3 days of life. The frequency varied between residents who lived in different baseline care facilities being higher in sheltered housing and long-term specialist care for people with dementia than in traditional nursing homes. During the study years, the number of transitions fluctuated but showed a slight decrease since 2005.ConclusionsThe ongoing change in long-term care from institutional care to housing services causes major challenges to the continuity of end-of-life care. To guarantee good quality during the last days of life for people with dementia, the underlying reasons behind transitions at the end of life should be investigated more thoroughly.     

Transition to Comfort Care Only and End-of-Life Trajectories in an Acute Geriatric Unit: A Secondary Analysis of the DAMAGE Cohort

ObjectivesComfort care for a dying patient increases the quality of the end of life. End-of-life situations are frequently managed in acute geriatric units (AGUs), and transition to comfort care only is often necessary. However, the frequency of transition to comfort care and the latter's putative link with the end-of-life trajectory (sudden death, cancer, organ failure, and frailty with or without dementia) have not previously been studied in acute geriatric units. We sought to (1) describe end-of-life trajectories and the transition to comfort care only, and (2) analyse the relationship between the two, prior to death in an AGU.DesignA secondary analysis of a subgroup of the DAMAGE cohort (a prospective multicentre cohort of 3509 patients aged 75 years and over and admitted consecutively to an AGU).Setting/ParticipantsDAMAGE patients who died in an AGU after a stay of at least 48 hours.MethodsData on the end-of-life trajectory and the transition to comfort care only were extracted from medical records.ResultsOf the 177 included patients, 123 (69.5%) transitioned to comfort care only in the AGU. A frailty trajectory (in patients living with dementia or not) accounted for nearly 70% of deaths. Paradoxically, only frailty among people living without dementia was not significantly associated with a more frequent transition to comfort care [odds ratio (95% confidence interval): 1.44 (0.44–4.76), relative to a patient dying suddenly].Conclusions and ImplicationsTransition to comfort care only is frequent in AGUs and is linked to the end-of-life trajectory (except for frail patients living without dementia). The frailty trajectory is one of the most frequent, and, therefore, physicians must be aware of the need to improve practice in this context.     

Factors Associated With Emergency Department Visits by People With Dementia Near the End of Life: A Systematic Review

ObjectivesEmergency department (ED) attendance is common among people with dementia and increases toward the end of life. The aim was to systematically review factors associated with ED attendance among people with dementia approaching the end of life.DesignSystematic search of 6 databases (MEDLINE, EMBASE, ASSIA, CINAHL, PsycINFO, and Web of Science) and gray literature. Quantitative studies of any design were eligible. Newcastle-Ottawa Scales and Cochrane risk-of-bias tools assessed study quality. Extracted data were reported narratively, using a theoretical model. Factors were synthesized based on strength of evidence using vote counting (PROSPERO registration: CRD42020193271).Setting and ParticipantsAdults with dementia of any subtype and severity, in the last year of life, or in receipt of services indicative of nearness to end of life.MeasurementsThe primary outcome was ED attendance, defined as attending a medical facility that provides 24-hour access to emergency care, with full resuscitation resources.ResultsAfter de-duplication, 18,204 titles and abstracts were screened, 367 were selected for full-text review and 23 studies were included. There was high-strength evidence that ethnic minority groups, increasing number of comorbidities, neuropsychiatric symptoms, previous hospital transfers, and rural living were positively associated with ED attendance, whereas higher socioeconomic position, being unmarried, and living in a care home were negatively associated with ED attendance. There was moderate-strength evidence that being a woman and receiving palliative care were negatively associated with ED attendance. There was only low-strength evidence for factors associated with repeat ED attendance.Conclusions and ImplicationsThe review highlights characteristics that could help identify patients at risk of ED attendance near the end of life and potential service-related factors to reduce risks. Better understanding of the mechanisms by which residential facilities and palliative care are associated with reduced ED attendance is needed.     

Costs of Care of Agitation Associated With Dementia in 8 European Countries: Results From the RightTimePlaceCare Study

Objective

To estimate the additional societal costs for people living with dementia (PwD) with agitation in home care (HC) and institutional long-term care (ILTC) settings in 8 European countries.

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.     

Lack of Effect of a Multicomponent Palliative Care Program for Nursing Home Residents on Hospital Use in the Last Month of Life and on Place of Death: A Secondary Analysis of a Multicountry Cluster Randomized Control Trial

ObjectivesPACE Steps to Success is a 1-year train-the-trainer program aiming to integrate nonspecialist palliative care into nursing homes via staff education and organizational support. In this study, we aimed to explore whether this program resulted in changes in residents' hospital use and place of death.DesignSecondary analysis of the PACE cluster randomized controlled trial (ISRCTN14741671). Data were collected on deaths over the previous 4 months via questionnaires at baseline and postintervention.Setting and ParticipantsQuestionnaires were completed by the nurse/care-assistant most involved from 78 nursing homes in 7 European Union countries.MeasuresWe measured number of emergency department visits, hospital admissions, length of hospital stay, and place of death. Baseline and postintervention scores between intervention and control groups were compared, and we conducted exploratory mixed-model analyses. We collected 551 out of 610 questionnaires at baseline and 984 out of 1178 at postintervention in 37 intervention and 36 control homes.ResultsWe found no statistical significant effects of the program on emergency department visits [odds ratio (OR) = 1.38, P = .32], hospital admissions (OR = 0.98, P = .93), length of hospital stay (geometric mean difference = 0.85, P = .44), or place of death (OR = 1.08, P = .80).Conclusions and ImplicationsWe found no effect of the PACE program on either hospital use in the last month of life or place of death. Although this may be related to implementation problems in some homes, the program might also require a more specific focus on managing acute end-of-life situations and a closer involvement of general practitioners or specialist palliative care services to influence hospital use or place of death.     

Economics of the Iceberg: Informal Care Provided to French Elderly with Dementia

ObjectivesDementia has a substantial effect on patients and their relatives, who have to cope with medical, social, and economic changes. In France, most elderly people with dementia live in the community and receive informal care, which has not been well characterized.MethodsUsing a sample of 4680 people aged 75 years and older collected in 2008 through a national comprehensive survey on health and disability, we compared the economic value of the care received by 513 elderly people with dementia to that received by a propensity score– matched set of older people without dementia.ResultsMore than 85% of elderly people with dementia receive informal care; the estimation of its economic value ranges from €4.9 billion (proxy good method) to €6.7 billion (opportunity cost method) per year.ConclusionsThe informal care provided to people with dementia has substantial annual costs; further work should be done to examine the social and economic roles foregone as a result of this care.     

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.     

Identifying Challenges Associated With the Care Transition Workflow From Hospital to Skilled Home Health Care: Perspectives of Home Health Care Agency Providers

Older adults discharged from the hospital to skilled home health care (SHHC) are at high risk for experiencing suboptimal transitions. Using the human factors approach of shadowing and contextual inquiry, we studied the workflow for transitioning older adults from the hospital to SHHC. We created a representative diagram of the hospital to SHHC transition workflow, we examined potential workflow variations, we categorized workflow challenges, and we identified artifacts developed to manage variations and challenges. We identified three overarching challenges to optimal care transitions—information access, coordination, and communication/teamwork. Future investigations could test whether redesigning the transition from hospital to SHHC, based on our findings, improves workflow and care quality.     

Change in Advance Care Plans of Nursing Home Residents With Dementia and Pneumonia: Secondary Analysis of Randomized Controlled Trial Data

ObjectivesTo explore changes in advance care plans of nursing home residents with dementia following pneumonia, and factors associated with changes. Second, to explore factors associated with the person perceived by elderly care physicians as most influential in advance treatment decision making.DesignSecondary analysis of physician-reported PneuMonitor trial data.Setting and ParticipantsThe PneuMonitor trial took place between January 2012 and May 2015 in 32 nursing homes across the Netherlands; it involved 429 residents with dementia who developed pneumonia.MethodsWe compared advance care plans before and after the first pneumonia episode. Generalized logistic linear mixed models were used to explore associations of advance care plan changes with the person most influential in decision making, with demographics and indicators of disease progression. Exploratory analyses assessed associations with the person most influential in decision making.ResultsFor >90% of the residents, advance care plans had been established before the pneumonia. After pneumonia, treatment goals were revised in 15.9% of residents; 72% of all changes entailed refinements of goals. Significant associations with treatment goal changes were not found. Treatment plans changed in 20.0% of residents. Changes in treatment decisions were more likely for residents who were more severely ill (odds ratio 1.5, 95% CI 1.2-1.9) and those estimated to live <3 months (odds ratio 3.3, 95% CI 1.9-5.8). Physicians reported that a family member was often (47.4%) most influential in decision making. Who is most influential was associated with the resident’s dementia severity.Conclusions and ImplicationsOverall, changes in advance care plans after pneumonia diagnosis were small, suggesting stability of most preferences or limited dynamics in the advance care planning process. Advance care planning involving family is common for nursing home residents with dementia, but advance care planning with persons with dementia themselves is rare and requires more attention.     

Multidisciplinary Team-Based Palliative Care for Heart Failure and Food Intake at the End of Life

Traditionally, patients with end-stage heart failure (HF) have rarely been involved in end-of-life care (EOLC) discussions in Japan. The purpose of this study was to examine the impact of HF-specific palliative care team (HF-PCT) activities on EOLC discussions with patients, HF therapy and care, and food intake at the end of life. We retrospectively analyzed 52 consecutive patients with HF (mean age, 70 ± 15 years; 42% female) who died at our hospital between May 2013 and July 2020 and divided them into two groups: before (Era 1, n = 19) and after (Era 2, n = 33) the initiation of HF-PCT activities in June 2015. Compared to Era 1, Era 2 showed a decrease in invasive procedures, an increase in opioid and non-intubating sedative use for symptom relief, improved quality of meals at the end of life, and an increase in participation in EOLC discussions. The administration of artificial nutrition in the final three days was associated with non-ischemic cardiomyopathy etiology, the number of previous hospitalizations for HF, and multidisciplinary EOLC discussion support. HF-PCT activities may provide an opportunity to discuss EOLC with patients, reduce the burden of physical and psychological symptoms, and shift the goals of end-of-life nutritional intake to ensure comfort and quality of life.     

Children Who Are Medically Fragile in North Carolina: Using Medicaid Data to Estimate Prevalence and Medical Care Costs in 2004

Objectives: The purpose of this paper is to demonstrate a method of using medical insurance paid claims and enrollment data to estimate the prevalence of selected health conditions in a population and to profile associated medical care costs. The examples presented here use North Carolina Medicaid data to produce estimates for children ages 0–19 who are medically fragile. These children with serious health conditions are a small subset of all children with special health care needs. Methods: The children who are medically fragile were identified through selected procedure and durable medical equipment codes. We profiled the expenditures for all medical services provided to these children during 2004. Results: 1,914 children ages 0–19 enrolled in Medicaid were identified as medically fragile (0.22 percent). The amount paid by Medicaid for these children during 2004 for all medical services was $133.8 million, or $69,906 per child. By comparison, the average expenditure by Medicaid during 2004 for a randomly selected group of children receiving well-child care visits was $3,181 per child. The $133.8 million of Medicaid expenditures for the children who are medically fragile represents 6.8 percent of the nearly $2 billion spent by Medicaid in 2004 for all medical services for all children ages 0–19. Conclusions: This study presents a standard methodology to identify children with specific health conditions and describe their medical care costs. Our example uses Medicaid claims and enrollment data to measure prevalence and costs among children who are medically fragile. This approach could be replicated for other health care payer data bases and also in other geographic areas.     

Impact of Continuity of Care on Mortality and Health Care Costs: A Nationwide Cohort Study in Korea

PURPOSE

Continuity of care is considered a core element of high-quality primary care, but its impact on mortality and health care costs is unclear. We aimed to determine the impact of continuity of care on mortality, costs, and health outcomes in patients with newly diagnosed cardiovascular risk factors.

METHODS

We conducted a cohort study of a 3% nationwide random sample of Korean National Health Insurance enrollees. A total of 47,433 patients who had received new diagnoses of hypertension, diabetes, hypercholesterolemia, or their complications in 2003 or 2004 were included. We determined standard indices of continuity of care—most frequent provider continuity (MFPC), modified, modified continuity index (MMCI), and continuity of care index (COC)—and evaluated their association with study outcomes over 5 years of follow-up. Outcome measures included overall mortality, cardiovascular mortality, incident cardiovascular events, and health care costs.

RESULTS

The multivariable-adjusted hazard ratios (HRs) for all-cause mortality, cardiovascular mortality, incident myocardial infarction, and incident ischemic stroke comparing participants with COC index below the median to those above the median were HR = 1.12 (95% CI, 1.04–1.21), 1.30 (1.13–1.50), 1.57 (1.28–1.95), and 1.44 (1.27–1.63), respectively. Similar findings were obtained for other indices of continuity of care. Lower continuity of care was also associated with increased inpatient and outpatient days and costs.

CONCLUSIONS

Lower indices of continuity of care in patients with newly diagnosed hypertension, diabetes, and hypercholesterolemia were associated with higher all-cause and cardiovascular mortality, cardiovascular events, and health care costs. Health care systems should be designed to support long-term trusting relationships between patients and physicians.     

Integrating the Financing and Delivery of Medical and Supportive Services for People Living With Dementia

The number of people living with dementia (PLWD) is expected to grow considerably in the coming years. PLWD often have substantial medical and supportive service needs and face fragmentation of services across payers and across health and social service systems; recently, efforts have been made to achieve greater integration of care and financing. This article considers issues related to integrating long-term services and supports (LTSS), medical care, and financing for PLWD; reviews the policy context and key clinical and delivery system challenges to these efforts; and describes key lessons regarding integration learned from examples in the field. Recommendations are provided and include the following: (1) assess carefully whether integration of medical and LTSS is required to achieve the intended outcomes of an intervention or program targeted at PLWD; if integration is needed, select carefully the types of medical and LTSS to integrate and the mode of integration; (2) use measures that evaluate quality across LTSS settings in which PLWD receive care; (3) assess whether and how eligibility and payment policies pose barriers to PLWD from receiving services they need, and evaluate ways in which policies might be reformed to meet beneficiaries’ needs; and (4) conduct research examining the potential of value-based payment efforts to improve the quality and efficiency of care received by PLWD, including their potential impact on out-of-pocket expenses and caregiving burden for PLWD and their families.     

Interventions to Reduce Inappropriate Prescribing of Antipsychotic Medications in People With Dementia Resident in Care Homes: A Systematic Review

Background

Antipsychotic medications are commonly used to manage the behavioral and psychological symptoms of dementia. Several large studies have demonstrated an association between treatment with antipsychotics and increased morbidity and mortality in people with dementia.

Aims

To assess the effectiveness of interventions used to reduce inappropriate prescribing of antipsychotics to the elderly with dementia in residential care.

Method

Systematic searches were conducted in 12 electronic databases. Reference lists of all included studies and forward citation searching using Web of Science were also conducted. All quantitative studies with a comparative research design and studies in which recognized methods of qualitative data collection were used were included. Articles were screened for inclusion independently by 2 reviewers. Data extraction and quality appraisal were performed by 1 reviewer and checked by a second with discrepancies resolved by discussion with a third if necessary.

Results

Twenty-two quantitative studies (reported in 23 articles) were included evaluating the effectiveness of educational programs (n = 11), in-reach services (n = 2), medication review (n = 4), and multicomponent interventions (n = 5). No qualitative studies meeting our inclusion criteria were identified. Eleven studies were randomized or controlled in design; the remainder were uncontrolled before and after studies. Beneficial effects were seen in 9 of the 11 studies with the most robust study design with reductions in antipsychotic prescribing levels of between 12% and 20%. Little empirical information was provided on the sustainability of interventions.

Conclusion

Interventions to reduce inappropriate prescribing of antipsychotic medications to people with dementia resident in care homes may be effective in the short term, but longer more robust studies are needed. For prescribing levels to be reduced in the long term, the culture and nature of care settings and the availability and feasibility of nondrug alternatives needs to be addressed.     

Evaluation of an Organisational Intervention to Promote Integrated Working between Health Services and Care Homes in the Delivery of End-of-Life Care for People with Dementia: Understanding the Change Process Using a Social Identity Approach

In the United Kingdom, approximately a third of people with dementia live in long-term care facilities for adults, the majority of whom are in the last years of life. Working arrangements between health services and care homes in England are largely ad hoc and often inequitable, yet quality end-of-life care for people with dementia in these settings requires a partnership approach to care that builds on existing practice.This paper reports on the qualitative component of a mixed method study aimed at evaluating an organisational intervention shaped by Appreciative Inquiry to promote integrated working between visiting health care practitioners (i.e. General Practitioners and District Nurses) and care home staff. The evaluation uses a social identity approach to elucidate the mechanisms of action that underlie the intervention, and understand how organisational change can be achieved.We uncovered evidence of both (i) identity mobilisation and (ii) context change, defined in theory as mechanisms to overcome divisions in healthcare. Specifically, the intervention supported integrated working across health and social care settings by (i) the development of a common group identity built on shared views and goals, but also recognition of knowledge and expertise specific to each service group which served common goals in the delivery of end-of-life care, and (ii) development of context specific practice innovations and the introduction of existing end-of-life care tools and frameworks, which could consequently be implemented as part of a meaningful bottom-up rather than top-down process.Interventions structured around a Social Identity Approach can be used to gauge the congruence of values and goals between service groups without which efforts to achieve greater integration between different health services may prove ineffectual. The strength of the approach is its ability to accommodate the diversity of service groups involved in a given area of care, by valuing their respective contributions and building on existing ways of working within which practice changes can be meaningfully integrated.