Self- reported and informal caregiver proxy-reported met needs in persons living with dementia are associated with lower health-related quality of life: a dyadic, cross-sectional study.

OBJECTIVE: This study examined the dyadic association of self and informal caregiver proxy-reported met needs in persons living with dementia on the health-related quality of life (HRQOL). METHODS: A total of 237 persons with dementia and their caregivers were included from a previous observational study. HRQOL was assessed by the EuroQol-5D and the number of met needs by the Camberwell Assessment of Needs for the Elderly. The Actor-Partner Interdependence Model framework was used to analyze the effect of an individual's self or proxy-reported met needs on their own HRQOL (actor effects), and an individual's self or proxy-reported met needs on the other dyad member's HRQOL (partner effects). RESULTS: The number of self-reported met needs by persons living with dementia was negatively associated with their own HRQOL (actor effect b = -0.200, p < 0.001), and the HRQOL of informal caregivers (partner effect b = -0.114, p = 0.001). The number of proxy-reported met needs by informal caregivers was negatively associated with their own HRQOL (actor effect b = -0.105, p < 0.001) but not the person living with dementia's HRQOL (-0.025, p = 0.375). CONCLUSION: Study findings suggest that both self-reported and informal caregiver proxy-reported met needs in persons living with dementia should be considered in research and practice because they have different implications for each dyad members' HRQOL.

'Patients come with two garbage bags full of problems and we have to sort them.' A qualitative study of the experiences of healthcare professionals on patients admitted to short-term residential care in the Netherlands.

BACKGROUND: Short-term residential care (STRC) facilities were recently implemented in the Netherlands to provide temporary care to older adults with general health problems. The aim of STRC is to allow the individual to return home. However, 40% of patients are discharged to long-term care facilities. In-depth data about characteristics of patients admitted and challenges in providing STRC are missing. OBJECTIVE: To obtain perspectives of STRC professionals on the patient journey from admission to discharge. DESIGN: Qualitative study. SETTING: Eight nursing homes and three hospitals. SUBJECTS: A total of 28 healthcare professionals. METHODS: A total of 13 group interviews with in-depth reviews of 39 pseudonymised patient cases from admission to discharge. Interviews were analysed thematically. RESULTS: Many patients had complex problems that were underestimated at handover, making returning to home nearly impossible. The STRC eligibility criteria that patients have general health problems and can return home do not fit with current practice. This results in a mismatch between patient needs and the STRC that is provided. Therefore, planning care before and after discharge, such as advance care planning, social care and home adaptations, is important. CONCLUSIONS: STRC is used by patients with complex health problems and pre-existing functional decline. Evidence-based guidelines, appropriate staffing and resources should be provided to STRC facilities. We need to consider the environmental context of the patient and healthcare system to enable older adults to live independently at home for longer.

Important components for Dutch in-home care based on qualitative interviews with persons with dementia and informal caregivers.

BACKGROUND: Dementia care in the Netherlands is increasingly dependent on informal care and has the aim to keep persons with dementia at home for as long as possible. However, little is known about the preferences and needs of people with dementia living at home. Including people with dementia and their informal caregivers in research and policy creation could help to identify necessary forms of support, and tailor care to their personal preferences and needs. OBJECTIVE: To identify important components of in-home care for persons with dementia and their informal caregivers in the Netherlands. DESIGN: Semi-structured interviews across the Netherlands, between March and June 2019 using thematic analysis. SETTING AND PARTICIPANTS: Persons with dementia (n = 5) and informal caregivers (n = 14) were primarily recruited through dementia care organizations. Additionally, a case manager was recruited to reflect upon the semi-structured interviews findings. RESULTS: Five themes concerning important care components were identified including the need for: a social network, formal care, information, emotional support and easier access to care. The complexity of the dementia care system posed a common difficulty for persons with dementia and informal caregivers. CONCLUSION: This study suggests that a dementia care package should be developed that includes both informal and formal care, the provision of information and emotional support, and help with access to care. The creation of this care package could help to tailor dementia care to the preferences and needs of the persons with dementia and their informal caregivers.

Individual, institutional, and scientific environment factors associated with questionable research practices in the reporting of messages and conclusions in scientific health services research publications.

BACKGROUND: Health Services Research findings (HSR) reported in scientific publications may become part of the decision-making process on healthcare. This study aimed to explore associations between researcher's individual, institutional, and scientific environment factors and the occurrence of questionable research practices (QRPs) in the reporting of messages and conclusions in scientific HSR publications. METHODS: We employed a mixed-methods study design. We identified factors possibly contributing to QRPs in the reporting of messages and conclusions through a literature review, 14 semi-structured interviews with HSR institutional leaders, and 13 focus-groups amongst researchers. A survey corresponding with these factors was developed and shared with 172 authors of 116 scientific HSR publications produced by Dutch research institutes in 2016. We assessed the included publications for the occurrence of QRPs. An exploratory factor analysis was conducted to identify factors within individual, institutional, and environmental domains. Next, we conducted bivariate analyses using simple Poisson regression to explore factors' association with the number of QRPs in the assessed HSR publications. Factors related to QRPs with a p-value < .30 were included in four multivariate models tested through a multiple Poisson regression. RESULTS: In total, 78 (45%) participants completed the survey (51.3% first authors and 48.7% last authors). Twelve factors were included in the multivariate analyses. In all four multivariate models, a higher score of "pressure to create societal impact" (Exp B = 1.28, 95% CI [1.11, 1.47]), was associated with higher number of QRPs. Higher scores on "specific training" (Exp B = 0.85, 95% CI [0.77-0.94]) and "co-author conflict of interest" (Exp B = 0.85, 95% CI [0.75-0.97]) factors were associated with a lower number of QRPs. Stratification between first and last authors indicated different factors were related to the occurrence of QRPs for these groups. CONCLUSION: Experienced pressure to create societal impact is associated with more QRPs in the reporting of messages and conclusions in HSR publications. Specific training in reporting messages and conclusions and awareness of co-author conflict of interests are related to fewer QRPs. Our results should stimulate awareness within the field of HSR internationally on opportunities to better support reporting in scientific HSR publications.

Performance Indicators for the Assessment of Aging-In-Place Reform Policies: A Scoping Review and Evidence Map.

OBJECTIVES: Many countries have reformed their long-term care system to promote aging-in-place. Currently, there is no framework for evaluating these reforms. This review aimed to identify performance indicators used for aging-in-place reform evaluation. DESIGN: A scoping review and evidence map of literature following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews checklist. SETTING AND PARTICIPANTS: Long-term care reforms aimed at aging-in-place. METHODS: The databases Medline, Embase, and Academic Search Premier were searched. Three independent reviewers screened the articles. Pairs of data collectors extracted the data, with conflicts determined by agreement or by a third reviewer. Performance indicators were classified into the Donabedian framework as structure, process, or outcome. RESULTS: We retained 58 articles. From the included articles, 28 discussed structure indicators, comprising of 71 indicators in the domains expenditures, care availability, and workforce; 36 articles included process indicators comprising 80 indicators about care utilization, service quality, and service satisfaction; and 20 articles reported on outcome indicators comprising 34 indicators about health status and informal caregiving. CONCLUSION AND IMPLICATIONS: Most articles focused on the performance domains care expenditures and care utilization, whereas measuring effects on older adults and society was less common. A framework assessing system and services delivery indicators and the effects on those aging-in-place with actionable performance indicators is recommended.

Acute hospital use in older adults following the 2015 Dutch reform of long-term care: an interrupted time series analysis.

BACKGROUND: In 2015, the Dutch government implemented a long-term care (LTC) reform primarily designed to promote older adults to age-in-place. Increased proportions of older adults living in the community might have resulted in more and longer acute hospitalisations. The aims of this study were to evaluate whether the Dutch 2015 LTC reform was associated with immediate and longitudinal increases in the monthly rate of acute clinical hospitalisation and monthly average hospital length of stay (LOS) in adults aged 65 years or older. METHODS: In this interrupted time series analysis of national hospital data (2009-18), we evaluated the association of the Dutch 2015 LTC reform with the monthly rate of acute clinical hospitalisation and monthly average LOS for older adults (aged ≥65 years). Patient-level episodic hospital data were provided by Dutch Hospital Data. Records were included that were defined as an acute clinical hospital admission for which a medical specialist decided treatment was necessary within 24 h. The analysis controlled for population growth (Dutch population data was provided by Statistics Netherlands) and seasonality, and calculated adjusted incident rate ratios (IRR). FINDINGS: Before the 2015 LTC reform, the rate of acute monthly hospitalisation was increasing (IRR 1·002 [95% CI 1·001-1·002]). A positive average reform effect was observed (1·116 [1·070-1·165]), accompanied by a negative change in trend (0·997 [0·996-0·998]) that resulted in a decreasing trend over the post-reform period (0·998 [0·998-0·999]). The pre-reform trend of LOS was decreasing (0·998 [0·997-0·998]), and the 2015 reform exhibited a positive change in trend (1·002 [1·002-1·003]) that resulted in a stabilisation of LOS in the post-reform period (0·999 [0·999-1·000]). INTERPRETATION: Our findings suggest that the increase in the rate of acute hospitalisation after the reform implementation was temporary, whereas the increase in LOS post-reform appeared to last longer than expected. These results have the potential to inform policy makers about effects of ageing-in-place LTC strategies on health and curative care. FUNDING: The Netherlands Organization for Health Research and Development, the Yale Claude Pepper Center, and the National Center for Advancing Translational Sciences, National Institutes of Health. TRANSLATION: For the Dutch translation of the abstract see Supplementary Materials section.

Dyadic Discrete Choice Experiments Enable Persons with Dementia and Informal Caregivers to Participate in Health Care Decision Making: A Mixed Methods Study.

BACKGROUND: Discrete choice experiments (DCEs) may facilitate persons with dementia and informal caregivers to state care preferences. DCEs can be cognitively challenging for persons with dementia. OBJECTIVE: This study aims to design a dementia friendly dyadic DCE that enables persons with dementia and informal caregivers to provide input individually and jointly, by testing the number of attributes and choice tasks persons with dementia can complete and providing insight in their DCE decision-making process. METHODS: This study included three DCE rounds: 1) persons with dementia, 2) informal caregivers, and 3) persons with dementia and informal caregivers together. A flexible DCE design was employed, with increasing choice task complexity to explore cognitive limitations in decision-making. Summary statistics and bivariate comparisons were calculated. A qualitative think-aloud approach was used to gain insight in the DCE decision-making processes. Transcripts were analyzed using thematic analysis. RESULTS: Fifteen person with dementia, 15 informal caregiver, and 14 dyadic DCEs were conducted. In the individual DCE, persons with dementia completed six choice tasks (median), and 80% could complete a choice task with least three attributes. In the dyadic DCE persons with dementia completed eight choice tasks (median) and could handle slightly more attributes. Qualitative results included themes of core components in DCE decision-making such as: understanding the choice task, attribute and level perception, option attractiveness evaluation, decision rule selection, and preference adaptation. CONCLUSION: Persons with dementia can use simple DCE designs. The dyadic DCE was promising for dyads to identify overlapping and discrepant care preferences while reaching consensus.

The Revised Medical Care Act is associated with a decrease in hospital death for the total Japanese older adult population regardless of dementia status: An interrupted time series analysis.

BACKGROUND: In 2006, Japan introduced the Revised Medical Care Act aimed to shift end-of-life care from hospitals to communities. For patients and families, dying in hospital can be highly distressing. Persons with dementia are especially susceptible to negative hospital-related outcomes. This study aims to evaluate whether the Revised Medical Care Act is associated with a decrease in the proportion of hospital deaths for older adults and persons with dementia over a 20-year period covering the reform. METHODS AND FINDINGS: This is a population-level, repeated cross-sectional study using mortality data from Vital Statistics Japan. Participants were Japanese older adults 65 years or older with and without dementia who died between 1996 and 2016. The policy intervention was the 2006 Revised Medical Care Act that increased community care infrastructure. The primary outcome was location of death in hospital, nursing home, home, or elsewhere. The trend in the proportion of location of death, before and after the reforms was estimated using an interrupted time-series analysis. All analyses were adjusted for sex and seasonality. Of the 19,307,104 older adult decedents, 216,442 had dementia identified on their death certificate. Death in nursing home (1.10, 95% CI 1.10-1.10), home (1.08, 95% CI 1.08-1.08), and elsewhere (1.07, 95% CI 1.07-1.07) increased over time compared to hospital deaths for the total population after reform implementation. Nursing home (1.04, 95% CI 1.03-1.05) and home death (1.11, 95% CI 1.10-1.12) increased after reform implementation for persons with dementia. CONCLUSION: This study provides evidence that the 2006 Revised Medical Care Act was associated with decreased older adults dying in hospital regardless of dementia status; however, hospital continues as the primary location of death.

Japanese National Dementia Plan Is Associated with a Small Shift in Location of Death: An Interrupted Time Series Analysis.

BACKGROUND: Japan has one of the highest percentages of persons with dementia and hospital deaths in the world. Hospitals are often not equipped to handle the care complexity required for persons with dementia at the end of life. The National Dementia Orange plan aimed to decrease hospital deaths by expanding time in the community. OBJECTIVE: The aim of this study is to evaluate whether the National Dementia Orange Plan is associated with a decrease in hospitals deaths for persons with dementia. METHODS: We used quarterly, cross-sectional, national death certificate data consisting of the total Japanese dementia population 65 years and older, spanning a period from 2009 to 2016. The primary outcome was quarterly adjusted relative risk rates (aRRR) of dying in hospital, nursing home, home, or elsewhere. An interrupted time series analysis was performed to study the slope change over time. Analyses were adjusted for sex and seasonality. RESULTS: 149,638 died with dementia. With the implementation of the Orange Plan, death in nursing home (aRRR 1.08, [1.07-1.08], p < 0.001) and elsewhere (aRRR 1.05, [1.05-1.06], p < 0.001) increased over time compared to hospital death. No changes were found in death at home. CONCLUSION: This study provides evidence that the National Dementia Orange plan was associated with a small increase in death in nursing home and elsewhere. Hospital death remained the primary location of death. End-of-life strategies should be expanded in national dementia policies to increase aging in the community until death.

Persons with dementia and informal caregivers prioritizing care: A mixed-methods study.

INTRODUCTION: More persons with dementia are residing in the community as many countries shift from residential care to home and community care. Although there are many forms of care and support available to avoid crisis situations and prolong community living, it remains unclear how these are valued by community-dwelling persons with dementia and their informal caregivers. Understanding perspectives of persons with dementia and informal caregivers on care characteristics is a vital step in valuing care services. This study aims to prioritize care characteristics for community-dwelling persons with dementia and informal caregivers with the use of an innovative mixed-methods approach. METHODS: Six mixed focus groups were conducted in The Netherlands with persons with dementia (n = 23) and informal caregivers (n = 20), including a quantitative ranking exercise that prioritized seven care and support characteristics from "most important" to "least important," followed by a group discussion about the prioritization. Audio recordings were transcribed and analyzed using thematic analysis. RESULTS: The ranking exercise and discussion showed that persons with dementia favored in-home care, help with daily activities, and social activities, whereas informal caregivers favored social activities, information about dementia, navigating the health care system, and emotional support. DISCUSSION: Persons with dementia prioritized day-to-day activities, whereas informal caregivers preferred assistance with organizing care and coping with caregiving. This study created a method to capture the care preferences of persons with dementia and informal caregivers.

Evaluating Perspectives of Relatives of Nursing Home Residents on the Nursing Home Visiting Restrictions During the COVID-19 Crisis: A Dutch Cross-Sectional Survey Study.

OBJECTIVES: Coronavirus disease 2019 (COVID-19) has caused many nursing homes to prohibit resident visits to prevent viral spread. Although visiting restrictions are instituted to prolong the life of nursing home residents, they may detrimentally affect their quality of life. The aim of this study was to capture perspectives from the relatives of nursing home residents on nursing home visiting restrictions. DESIGN: A cross-sectional online survey was conducted. SETTING AND PARTICIPANTS: A convenience sample of Dutch relatives of nursing home residents (n = 1997) completed an online survey on their perspectives regarding nursing home visiting restrictions. METHODS: The survey included Likert-item, multiselect, and open-answer questions targeting 4 key areas: (1) communication access to residents, (2) adverse effects of visiting restrictions on residents and relatives, (3) potential protective effect of visiting restrictions, (4) important aspects for relatives during and after visiting restrictions. RESULTS: Satisfaction of communication access to nursing home residents was highest when respondents had the possibility to communicate with nursing home residents by nurses informing them via telephone, contact behind glass, and contact outside maintaining physical distance. Satisfaction rates increased when respondents had multiple opportunities to stay in contact with residents. Respondents were concerned that residents had increased loneliness (76%), sadness (66%), and decreased quality of life (62%), whereas study respondents reported personal sadness (73%) and fear (26%). There was no consensus among respondents if adverse effects of the visiting restrictions outweighed the protective effect for nursing home residents. Respondents expressed the need for increased information, communication options, and better safety protocols. CONCLUSION AND IMPLICATIONS: Providing multiple opportunities to stay in touch with nursing home residents can increase satisfaction of communication between residents and relatives. Increased context-specific information, communication options, and safety protocols should be addressed in national health policy.