Personality assessment in nursing home residents with mental and physical multimorbidity: two informant perspectives.

OBJECTIVES: In older patients with mental and physical multimorbidity (MPM), personality assessment is highly complex. Our aim was to examine personality traits in this population using the Hetero-Anamnestic Personality questionnaire (HAP), and to compare the premorbid perspective of patients' relatives (HAP) with the present-time perspective of nursing staff (HAP-t). DESIGN: Cross-sectional. SETTING: Dutch gerontopsychiatric nursing home (GP-NH) units. PARTICIPANTS: Totally, 142 GP-NH residents with MPM (excluding dementia). MEASUREMENTS: NH norm data of the HAP were used to identify clinically relevant premorbid traits. Linear mixed models estimated the differences between HAP and HAP-t trait scores (0-10). Agreement was quantified by intraclass correlation coefficients (ICCs). All HAP-HAP-t analyses were corrected for response tendency (RT) scores (-10-10). RESULTS: 78.4% of the patients had at least one premorbid maladaptive trait, and 62.2% had two or more. Most prevalent were: "disorderly" (30.3%), "unpredictable/impulsive" (29.1%) and "vulnerable" (27.3%) behavior. The RT of relatives appeared significantly more positive than that of nursing staff (+1.8, 95% CI 0.6-2.9, p = 0.002). After RT correction, the traits "vulnerable", "perfectionist" and "unpredictable/impulsive" behavior scored higher on the HAP than HAP-t (respectively +1.2, 95% CI 0.6-1.7, p < 0.001; +2.1, 95% CI 1.3-2.8, p < 0.001; +0.6, 95% CI 0.1-1.1, p = 0.013), while "rigid" behavior scored lower (-0.7, 95% CI -1.3 to -0.03, p = 0.042). Adjusted ICCs ranged from 0.15 to 0.58. CONCLUSIONS: Our study shows high percentages of premorbid maladaptive personality traits, which calls for attention on personality assessment in MPM NH residents. Results also indicate that the HAP and HAP-t questionnaires should not be used interchangeably for this patient group in clinical practice.

Palliative Care in Nursing Home Residents with Young-Onset Dementia: Professional and Family Caregiver Perspectives.

BACKGROUND: The evidence underpinning palliative care in dementia is mostly based on research in older populations. Little is known about the palliative care needs of people with young-onset dementia (YOD). OBJECTIVE: To describe palliative care practices including advance care planning (ACP) in people with YOD residing in Dutch nursing homes. METHODS: The study presents baseline questionnaire data from an observational cohort study. Physicians, family caregivers, and nursing staff completed questionnaires about 185 residents with YOD. The questionnaires included items on sociodemographics, quality of life measured with the quality of life in late-stage dementia (QUALID) scale, dementia-related somatic health problems, symptoms, pain medication, psychotropic drugs, and ACP. RESULTS: The mean age was 63.9 (SD 5.8) years. Half (50.3%) of them were female. Alzheimer's disease dementia (42.2%) was the most prevalent subtype. The mean QUALID score was 24.0 (SD 7.9) as assessed by family caregivers, and 25.3 (SD 8.6) as assessed by the nursing staff. Swallowing problems were the most prevalent dementia-related health problem (11.4%). Agitation was often reported by physicians (42.0%) and nursing staff (40.5%). Psychotropics were prescribed frequently (72.3%). A minority had written advance directives (5.4%) or documentation on treatment preferences by the former general practitioner (27.2%). Global care goals most often focused on comfort (73.9%). Proportions of do-not-treat orders were higher than do-treat orders for all interventions except for hospitalization and antibiotics. CONCLUSIONS: ACP must be initiated earlier, before nursing home admission. A palliative approach seems appropriate even though residents are relatively young and experience few dementia-related health problems.

The development and feasibility evaluation of a program to identify and manage apathy in people with dementia: the SABA program.

OBJECTIVES: To develop and evaluate feasibility of a program for family and professional caregivers to identify and manage apathy in people with dementia: the Shared Action for Breaking through Apathy program (SABA). METHODS: A theory- and practice-based intervention was developed and tested among ten persons with apathy and dementia in two Dutch nursing homes from 2019 to 2021. Feasibility was evaluated with interviews with family caregivers (n = 7) and professional caregivers (n = 4) and two multidisciplinary focus groups with professional caregivers (n = 5 and n = 6). RESULTS: SABA was found feasible for identifying and managing apathy. Caregivers mentioned increased knowledge and awareness regarding recognizing apathy and its impact on their relationship with the person with apathy. They experienced increased skills to manage apathy, a greater focus on small-scale activities and increased appreciation of small moments of success. The content, form and accessibility of the program's materials were considered facilitating by all stakeholders, as was the compatibility of the procedures with the usual way of working. The expertise and involvement of stakeholders, staff stability and the support of an ambassador and/or manager were facilitating, while insufficient collaboration was a barrier. Organizational and external aspects like not prioritizing apathy, staff discontinuity, and the Covid-19 pandemic were perceived as barriers. A stimulating physical environment with small-scale living rooms, and access to supplies for activities were considered facilitating. CONCLUSIONS: SABA empowers family and professional caregivers to successfully identify and manage apathy. For implementation, it is important to take into account the facilitators and barriers resulting from our study.

Evaluation of the SPAN intervention for people living with young-onset dementia in the community and their family caregivers: a randomized controlled trial.

OBJECTIVES: To evaluate the effectiveness of the SPAN-intervention, a psychosocial intervention aiming at improving a sense of usefulness and engaging in meaningful activities, for community-dwelling people living with young-onset dementia (YOD) and their family caregivers. METHODS: A cluster-randomized controlled trial with two parallel groups (SPAN-intervention vs. care as usual) with assessments at baseline and five-month follow-up was performed. Sixty-one persons living with YOD and their family caregivers were included (SPAN-intervention group: n = 35; care as usual group: n = 26). Outcomes included, for the person living with YOD, empowerment (operationalized by self-management abilities using the SMAS-30; primary outcome), quality of life, neuropsychiatric symptoms, disability, apathy; and, for the family caregiver, quality of life, emotional distress, sense of competence. Data were analyzed using linear mixed models. RESULTS: We found no statistically significant effects of the SPAN-intervention on empowerment, nor on the secondary outcome measures for persons living with YOD or their family caregivers. CONCLUSION: Although the SPAN-intervention may provide concrete opportunities to engage in activities and stimulate reciprocity, such as meaningful social activities, this study did not demonstrate intervention effects. Additional qualitative evaluations may provide more insight into the implementation process and experiences of people living with YOD and their family caregivers.This trial was registered at ClinicalTrials.gov (NCT02937883).

Transferring people with dementia to severe challenging behavior specialized units, an in-depth exploration.

OBJECTIVES: One of the main reasons for people with dementia to move to a dementia special care unit of a nursing home is challenging behavior. This behavior is often difficult to manage, and in the Netherlands, residents are sometimes relocated to a severe challenging behavior specialized unit. However, relocation often comes with trauma and should be prevented if possible. This study aimed to investigate the patient- and context-related reasons for these relocations. METHODS: Qualitative multiple case study using individual (n = 15) and focus group interviews (n = 4 with n = 20 participants) were held with elderly care physicians, physician assistants, psychologists, nursing staff members, and relatives involved with people with dementia and severe challenging behavior who had been transferred to a severe challenging behavior specialized unit. Audio recordings were transcribed and analyzed with thematic analysis, including directed content analysis. RESULTS: After five cases, data-saturation occurred. The thematic analysis identified three main processes: increasing severity of challenging behavior, increasing realization that the clients' needs cannot be met, and an increasing burden of nursing staff. The interaction between these processes, triggered mainly by a life-threatening situation, led to nursing staff reaching their limits, resulting in relocation of the client. CONCLUSION: Our study resulted in a conceptual framework providing insight into reasons for relocation in cases of severe challenging behavior. To prevent relocation, the increasing severity of challenging behavior, increasing burden on nursing staff, and increasing realization that the clients' needs cannot be met need attention.

Identifying and managing apathy in people with dementia living in nursing homes: a qualitative study.

BACKGROUND: Although apathy is common in people with dementia and has profound negative effects, it is rarely diagnosed nor specifically treated in nursing homes. The aim of this study is to explore experiences in identifying and managing apathy from the perspectives of people with dementia and apathy (PwA), family caregivers (FCs) and professional caregivers (PCs). METHODS: Descriptive qualitative study with purposive sampling, comprising eleven semi-structured in-depth interviews with PwA, FCs or PCs and focus groups with twelve PCs in Dutch nursing homes. Seventeen additional in-depth interviews with caregivers were held, after signals of increasing apathy during the first Covid-19 lockdown. Using an inductive approach, data was analysed thematically to explore the experiences in identifying and managing apathy from the perspective of different stakeholders. RESULTS: Three themes were identified: 1) the challenge to appraise signals, 2) the perceived impact on well-being, 3) applied strategies to manage apathy. Although participants described apathy in line with diagnostic criteria, they were unfamiliar with the term apathy and had difficulties in appraising signals of apathy. Also, the perceived impact of apathy varied per stakeholder. PwA had difficulties reflecting on their internal state. FCs and PCs experienced apathy as challenging when it reduced the well-being of PwA or when they themselves experienced ambiguity, frustration, insecurity, disappointment or turning away. Dealing with apathy required applying specific strategies that included stimulating meaningful contact, adjusting one's expectations, and appreciating little successes. CONCLUSIONS: When addressing apathy in nursing homes, it is important to consider that a) all stakeholders experience that appraising signals of apathy is challenging; b) apathy negatively influences the well-being of people with dementia and especially their FCs and PCs; and c) FCs and PCs can successfully, albeit temporarily, manage apathy by using specific strategies.

Prevalence of the Minimally Conscious State Among Institutionalized Patients in the Netherlands: A Nationwide Study.

BACKGROUND AND OBJECTIVES: The minimally conscious state (MCS) is a prolonged disorder of consciousness (pDoC) and one of the most severe outcomes of acquired brain injury. Prevalence data are scarce. The aim of this study was to establish the nationwide point prevalence of institutionalized patients in MCS in the Netherlands. METHODS: This was a descriptive cross-sectional study in which all 86 Dutch hospitals, all 5 specialized pDoC rehabilitation facilities, and all 274 nursing homes were asked whether they were treating patients with a pDoC on the point prevalence date of September 15, 2021. Each patient's legal representative provided informed consent for their inclusion. Patient level of consciousness was verified using the Coma Recovery Scale-Revised (CRS-R) in a single assessment session performed in the facility of residence by an experienced physician. Data on patient demographics, etiology, level of consciousness, facility of residence, and clinical status were collected from a questionnaire by the treating physician. The prevalence of institutionalized patients in MCS of per 100,000 members of the Dutch population was calculated, based on actual census data. RESULTS: Seventy patients were reported to have a pDoC, of whom 6 were excluded. The level of consciousness was verified for 49 patients while for 15, it could not be verified. Of the patients verified, 38 had a pDoC, of whom 32 were in MCS (mean age 44.8 years, 68.8% male). The prevalence of institutionalized patients in MCS is 0.2-0.3 per 100,000 Dutch inhabitants. Traumatic brain injury was present in 21 of 32 patients (65.6%). Specialized pDoC rehabilitation was received by 17 of 32 patients (53%), with the rest admitted to nursing homes. The most frequent signs of consciousness on the CRS-R were visual pursuit, reproducible movement to command, and automatic motor response. DISCUSSION: This nationwide study revealed a low prevalence of institutionalized patients in MCS in the Netherlands. These findings are now being used to organize pDoC care in this country.

The Complexity of Nutritional Problems in Persons with Dementia: Expanding a Theoretical Model.

BACKGROUND: Persons with dementia are at risk of developing nutritional problems. Theoretical models on nutritional problems have been developed, but have not been evaluated with healthcare professionals. OBJECTIVE: This study aimed to explore the comprehensiveness and applicability of a theoretical model of nutritional problems in persons with dementia for daily nursing home practice. METHODS: A qualitative design employing a combined deductive and inductive approach was used. Healthcare professionals were eligible to participate if they 1) had expert knowledge of and experience with nutritional problems related to dementia, and 2) worked in a nursing home affiliated with an academic network covering the east and south of the Netherlands. Three focus group interviews with 20 healthcare professionals from seven professions were held. We conducted thematic analysis and we compared themes with existing theoretical models from the literature. RESULTS: We identified six themes, four of which corresponded with the existing models (observing and analysing nutritional problems; consequences of nutritional problems; functioning of the person with dementia; environmental factors). Interprofessional collaboration and ethical factors were identified as new themes. The analyses indicated interactions within each theme, between themes, and a bidirectional connection between themes. CONCLUSIONS: This study demonstrated the relevance of interprofessional collaboration and ethical considerations in nutritional problems related to dementia. It uncovered complex bidirectional relations within and between factors regarding nutritional problems. All aspects should be taken into account to minimize the consequences of nutritional problems for persons with dementia.

Usability of an app-based clinical decision support system to monitor psychotropic drug prescribing appropriateness in dementia.

BACKGROUND: Guidelines recommend reluctant psychotropic drug (PD) prescribing in nursing home residents with dementia and neuropsychiatric symptoms (NPS), as efficacy of PDs is limited, and side effects are common. Nevertheless, PDs are commonly prescribed to reduce NPS. A smartphone application that evaluates appropriateness of PD prescriptions and provides recommendations from the revised Dutch guideline on problem behaviour in dementia may promote guideline adherence and increase appropriate prescribing. OBJECTIVE: This study aimed to assess user experiences, barriers and facilitators of the Dutch 'Psychotropic Drug Tool' smartphone application (PDT) in the context of appropriate prescribing of PDs to nursing home residents with dementia and NPS. METHODS/DESIGN: The PDT was developed according to the recommendations of the Dutch guideline for treatment of NPS in people with dementia. Feedback provided during usability testing with two end-users was applied to improve the PDT before implementation in day-to-day practice. Sixty-three prescribers were asked to use the PDT at their own convenience for four months. User expectations and experiences were assessed at baseline and after four months with the System Usability Scale and the Assessment of Barriers and Facilitators for Implementation. RESULTS: Expected usability (M = 72.59; SD = 11.84) was similar to experienced usability after four months (M = 69.13; SD = 16.48). Appreciation of the PDTs user-friendliness (on average 6.7 out of 10) and design (7.3) were moderately positive, in contrast to the global rating of the PDT (5.7). Perceived barriers for PDT use were time consumption and lack of integration with existing electronic systems. Perceived facilitators were ease of use and attractive lay out. For broader implementation, physicians suggested a change in direction of the PDT: start assessment of appropriateness based on the list of NPS instead of PD as primary input. CONCLUSIONS: In this pragmatic prospective cohort study we found that the PDT was used by elderly care physicians, with mediocre user satisfaction. The PDT will be optimized based on user feedback regarding experienced usability, barriers and facilitators, after which broader implementation can be initialized. The Medical Ethics Review Board of the University Medical Center Groningen declared this is a non-WMO study (UMCG RR Number: 201800284).

After COVID-19 vaccinations: what does living and working in nursing homes look like?

BACKGROUND: Nursing homes were disproportionally affected by the COVID-19 pandemic. Vaccination was considered critical for the normalization of daily live of nursing home residents. The present study investigates the impact of the prolonged COVID-19 pandemic and the effect of vaccinations on the daily lives of residents and staff in Dutch nursing homes. SETTING AND PARTICIPANTS: The sample consisted of 78 nursing homes that participated in the Dutch national pilot on nursing home visits after the COVID-19 pandemic. One contact person per nursing home was approached for participation in this mixed-methods cross-sectional study. METHODS: Data was collected twice through questionnaires in April and December 2021. Quantitative questions focused on recent COVID-19 outbreaks, progress of vaccination, effects of vaccination on daily living in the nursing home and burden experienced by staff. Open-ended questions addressed the prolonged effect of the pandemic on residents, family members and staff. RESULTS: The overall vaccination rate of residents across nursing homes appeared to be high among both residents and staff. However, daily living in the nursing home had not returned to normal concerning personal interactions, visits, the use of facilities and work pressure. Nursing homes continued to report a negative impact of the pandemic on residents, family members and staff. CONCLUSIONS: Restrictions to the daily lives of residents in nursing homes were stricter than restrictions imposed on society as a whole. Returning to a normal daily living and working was found to be complex for nursing homes. With the emergence of new variants of the virus, policies strongly focusing on risk aversion were predominantly present in nursing homes.

Well-being, multidisciplinary work and a skillful team: essential elements of successful treatment in severe challenging behavior in dementia.

OBJECTIVE: Conceptualize successful treatment of persons with dementia and severe challenging behavior as perceived by professionals. METHODS: In this concept mapping study 82 experts in dementia care participated. The study followed two phases of data collection: (1) an online brainstorm where participants completed the focus prompt: 'I consider the treatment of people with severe challenging behavior in dementia successful if.'; (2) individual sorting and rating of the collected statements followed by data analysis using multidimensional scaling and hierarchical cluster analysis, resulting in a concept map. RESULTS: Three clusters were identified, the first addressing treatment outcomes and the latter two addressing treatment processes, each divided into sub-clusters: (1) well-being, comprising well-being of the person with dementia and all people directly involved; (2) multidisciplinary analysis and treatment, comprising multidisciplinary analysis, process conditions, reduction in psychotropic drugs, and person-centered treatment; and (3) attitudes and skills of those involved, comprising consistent approach by the team, understanding behavior, knowing how to respond to behavior, and open attitudes. CONCLUSIONS: Successful treatment in people with dementia and severe challenging behavior focuses on well-being of all people involved wherein attention to treatment processes including process conditions is essential to achieve this.

Diagnosis and Care Use for People with Young-Onset Dementia in Primary Care in the Netherlands.

BACKGROUND: Timely diagnosis and adequate care is important for persons with young-onset dementia (YOD) and their caregivers, due to the high impact of the disease. Initiating care can be difficult for the general practitioner (GP) and other healthcare professionals. OBJECTIVE: Provide insight in the care use of persons with YOD and identify factors influencing care use. METHODS: A primary care register was used for this study. Information on the care use of persons with YOD was extracted from the GPs written notes. Information entailed time until start of care use, reasons and factors influencing the GP's decision, and reasons and factors influencing actual care use were included. Analyses included quantitative explorative descriptive analyses, and qualitative manifest content analyses. RESULTS: 75 persons with YOD were included in this study. The main reason for GPs to refer for diagnosis was concerns of caregivers. After diagnosis, 72% of the persons were assigned a case manager, 42.7% received day care, and 44% were admitted to a long-term care facility. A higher percentage of persons without a case manager was admitted to a long-term care facility (64%) compared to the persons with a case manager (36%). Reasons for not initiating care were reluctancy of the persons with YOD or their caregivers, the person deceased, or because the GP did not refer for care. CONCLUSION: Care use differed between persons due to different needs and reasons. Although most persons with YOD receive care in the years after diagnosis, there are still factors that could be improved.

[Remote work and the use of online communication in nursing homes during COVID-19-measures]. / Werken op afstand en gebruik van onlinecommunicatie in verpleeghuizen tijdens COVID-19-maatregelen.

The measures taken in Dutch nursing homes during the first wave of the COVID-19 pandemic resulted in both an increase and a decrease of challenging behavior in nursing home residents. Staff undertook various initiatives to reduce the negative effects. For example, video calling between residents and their relatives was facilitated. In addition, initiatives in digital care (telehealth) were deployed. The aim of this study was to explore nursing home practitioners' experiences with online communication between residents and relatives, working remotely in general and the remote treatment of challenging behavior in particular. One hundred and seventy-five nursing home professionals (psychologists, elderly care specialists, nursing specialists, daytime activities coordinators) completed an online questionnaire at the end of 2020/start of 2021. Open and closed questions showed that face-to-face contacts are preferred over online communication. Online communication was mainly seen as a (meaningful) addition. Although professionals wanted to continue some of their work remotely, and found this efficient and workload-reducing, they felt that this could impair their job satisfaction and the quality of care. For remote work and remote treatment, each task needs to be evaluated on whether it can be performed properly and whether that results in good care. More research into online communication, remote working and digital care in nursing homes is needed.

Reasons for Dermatology Consultations in Nursing Homes and the Estimated Potential of Teledermatology as a Triage Tool.

Considering the limited availability of dermatologists to perform live consultations in nursing homes, teledermatology could be used as a triage tool for selection of cases for which live consultations are considered to be of added value compared with teledermatology. This prospective, multicentre observational study aimed to determine the reasons for dermatology consultations in nursing homes and the estimated value of teledermatology as a triage tool, including potential predictors. Skin tumours were the most common reason (n = 161/270; 59.6%) for dermatology consultations in nursing homes. Dermatologists estimated that live consultations added value compared with teledermatology in 67.8% of cases (n = 183). Multivariable logistic regression showed that predictors for this added value of live consultations were: consultations because of a skin tumour; consultations during which a diagnostic or treatment procedure was performed; consultations during which a secondary diagnosis was made; and the dermatologist involved. These results indicate that using teledermatology as a triage tool potentially reduces the need for additional live consultations in one-third of patients, whereas live consultations are estimated to have added value over teledermatology in two-thirds of cases. To make optimal use of the limited capacity for live consultations by dermatologists, it could therefore be helpful if elderly care physicians use teledermatology more frequently.

Losing hope or keep searching for a golden solution: an in-depth exploration of experiences with extreme challenging behavior in nursing home residents with dementia.

BACKGROUND: Situations of extreme challenging behavior such as very frequent and/or severe agitation or physical aggression in nursing home residents with dementia can be experienced as an impasse by nursing home staff and relatives. In this distinct part of our WAALBED (WAAL-Behavior-in-Dementia)-III study, we aimed to explore these situations by obtaining the experiences and perspectives of nursing home staff and relatives involved. This can provide a direction in providing tools for handling extreme challenging behavior of nursing home residents with dementia and may improve their quality of life. METHODS: Qualitative multiple case study with individual interviews and focus group discussions. Interviewees were elderly care physicians, psychologists, care staff members, unit managers and relatives (n = 42). They were involved with nursing home residents with dementia and extreme challenging behavior living on dementia special care units in the Netherlands. For these residents, external consultation by the Centre for Consultation and Expertise was requested. Audio-recordings of the interviews were transcribed verbatim and analyzed with thematic analysis, including conventional content analysis. RESULTS: Seven cases were included. Forty-one individual interviews and seven focus group discussions were held. For six stakeholder groups (resident, relative, care staff, treatment staff, nursing home staff, and the organization), three main factors could be identified that contributed to experiencing a situation of extreme challenging behavior as an impasse: 1) characteristics and attitudes of a stakeholder group, 2) interaction issues within a stakeholder group and 3) interaction issues among (groups of) stakeholders. The experienced difficulties with the resident's characteristics, as well as suboptimal interdisciplinary collaboration and communication among the nursing home staff are remarkable. Nursing home staff kept searching for a golden solution or lost hope. CONCLUSIONS: This study offers important insights into situations of extreme challenging behavior in nursing home residents with dementia and offers caregivers targets for improving care, treatment and interdisciplinary collaboration, such as working uniformly and methodically.

Short- and Long-Term Mortality and Mortality Risk Factors among Nursing Home Patients after COVID-19 Infection.

OBJECTIVE: To assess short- and long-term mortality and risk factors in nursing home patients with COVID-19 infection. DESIGN: Retrospective 2-center cohort study. SETTING AND PARTICIPANTS: Dutch nursing home patients with clinically suspected COVID-19 infection confirmed by reverse transcription-polymerase chain reaction testing. METHODS: Data were gathered between March 2020 and November 2020 using electronic medical records, including demographic characteristics, comorbidities, medical management, and symptoms on the first day of suspected COVID-19 infection. Mortality at 30 days and 6 months was assessed using multivariate logistic regression models and Kaplan-Meier analysis. At 6 months, a subgroup analysis was performed to estimate the mortality risk between COVID-negative patients and patients who survived COVID-19. Risk factors for mortality were assessed through multivariate logistic regression models. RESULTS: A total of 321 patients with suspected COVID-19 infection were included, of whom 134 tested positive. Sixty-two patients in the positive group died at 30 days, with a short-term mortality rate of 2.9 (95% CI 1.7-5.3). Risk factors were fatigue (OR 2.6, 95% CI 1.3-6.2) and deoxygenation (OR 2.9, 95% CI 1.3-7.6). At 6 months, the mortality risk was 2.1 (95% CI 1.3-3.7). Risk factors for 6-month mortality were shortness of breath (OR 2.7, 95% CI 1.3-7.0), deoxygenation (OR 2.5, 95% CI 1.1-6.5) and medical management (OR 4.5, 95% CI 1.7-25.8). However, among patients who survived COVID-19 infection, the long-term mortality risk was not sustained (OR 1.0, 95% CI 0.4-2.7). CONCLUSIONS AND IMPLICATIONS: Overall, COVID-19 infection increases short- and long-term mortality risk among nursing home patients. However, this study shows that surviving COVID-19 infection does not lead to increased mortality in the long term within this population. Therefore, advanced care planning should focus on quality of life among nursing home patients after COVID-19 infection.

Global incidence of young-onset dementia: A systematic review and meta-analysis.

INTRODUCTION: Reliable data on the incidence rates for young-onset dementia (YOD) are lacking, but are necessary for research on disease etiology and to raise awareness among health care professionals. METHODS: We performed a systematic review and meta-analysis on population-based studies on the incidence of YOD, published between January 1, 1990 and February 1, 2022, according to Meta-analyses of Observational Studies in Epidemiology (MOOSE) guidelines. Data were analyzed using random-effects meta-analyses. Results were age-standardized, and heterogeneity was assessed by subgroup analyses and meta-regression. RESULTS: Sixty-one articles were included. Global age-standardized incidence rates increased from 0.17/100,000 in age 30 to 34 years, to 5.14/100,000 in age 60 to 64 years, giving a global total age-standardized incidence rate of 11 per 100,000 in age 30 to 64. This corresponds to 370,000 new YOD cases annually worldwide. Heterogeneity was high and meta-regression showed geographic location significantly influenced this heterogeneity. DISCUSSION: This meta-analysis shows the current best estimate of YOD incidence. New prospective cohort studies are needed.

Pre-Diagnostic Symptoms of Young-Onset Dementia in the General Practice up to Five Years Before Diagnosis.

BACKGROUND: Young-onset dementia (YOD) has many underlying etiologies, leading to a large heterogeneity in first symptoms. This makes it difficult for general practitioners (GPs) to recognize YOD. OBJECTIVE: Identify early symptoms that are more common in the pre-diagnostic phase of YOD. METHODS: We performed a case-control study nested in a primary-care registry on 89 cases and 162 matched controls, where we compared symptoms of people with YOD up to 5 years before diagnosis to their matched control group without YOD. The variables included in this study were International Classification of Primary Care codes and symptoms extracted from written GP notes and categorized in groups. We used Generalized Equation Estimation to analyze symptom's time-trajectories and logistic regression and ROC-curves to analyze differences in number of symptom categories reported. RESULTS: Cognitive symptoms were more common in people with YOD 5 years before diagnosis, affective symptoms 4 years before diagnosis, social symptoms 3 years, behavioral symptoms 2 years, and daily functioning disturbances 1 year before diagnosis. The ROC-curve suggested that reporting two or more symptom categories at the GP gave the best trade-off between sensitivity (85%) and specificity (77%), for the highest percentage of correctly diagnosed persons. CONCLUSION: This study showed people with YOD present differently than people without YOD. However, it may still be difficult for GPs to use these symptom categories to distinguish people with YOD, since the symptoms also occur in people with other diseases. A combination of reported symptom categories increases the probability of an underlying cause of YOD.

A cross-sectional evaluation of the Dutch RHAPSODY program: online information and support for caregivers of persons with young-onset dementia.

Caregivers of persons with young-onset dementia (YOD) have an explicit need for tailored information and support about YOD. Therefore, during the European RHAPSODY project a web-based information and support program for YOD caregivers was developed. The program was recently tailored to the Dutch context. This study evaluates the Dutch version on user acceptability, usability, user satisfaction, and user behavior. Methods: A cross-sectional study was conducted to evaluate the publicly available Dutch RHAPSODY program. A pop-up survey, extensive survey, and a semi-structured interview were used to evaluate how visitors perceived the program in terms of acceptability, usability, and their satisfaction. Web metrics registered user behavior. Quantitative data were analyzed using descriptive statistics and a deductive content analysis was used to analyze qualitative data. Results: A total of 26 participants completed the pop-up survey, 19 completed the extensive survey, and 10 participated in the semi-structured interviews. Most participants were caregivers and healthcare professionals. They perceived the program as acceptable and usable in daily life and were satisfied with the quality of the content. The majority would use the program again and recommend it to others. Participants emphasized the necessity and desirability of a central platform incorporating educational and practical information about YOD. The page with an explanation about what YOD entails was most viewed (360 unique page views). Most time was spent on the page about the diagnostic process (6.5 min). Conclusions: The Dutch RHAPSODY program showed good user acceptability, usability, and user satisfaction. The program met the need for tailored information and support regarding YOD and adds value to existing available support for YOD caregivers. Raising awareness about the program's existence among healthcare professionals may help caregivers to find appropriate post-diagnostic information. The program also provides educational opportunities for healthcare professionals.

Time trends in psychotropic drug prescriptions in Dutch nursing home residents with dementia between 2003 and 2018.

OBJECTIVE: Several European studies investigated the trends in psychotropic drug prescriptions (PDPs) among nursing home (NH) residents and reported a decline in antipsychotics prescriptions. Since the Dutch long-term care system differs from other European systems (e.g. higher threshold for NH admission and trained elderly care physicians), this study explores the trends in PDPs in Dutch NH residents with dementia. METHODS: The study used data from nine studies, comprising two cross-sectional studies, one cohort study, and six cluster-randomized controlled trials, collected in Dutch NHs between 2003 and 2018. With multilevel logistic regression analysis, NHs as a random effect, we estimated the trends in PDPs overall and for five specific psychotropic drug groups (antipsychotics, antidepressants, anxiolytics, hypnotics, and anti-dementia drugs), adjusting for confounders: age, gender, severity of dementia, severity of neuropsychiatric symptoms, and length of stay in NHs. RESULTS: The absolute prescription rate of antipsychotics was 37.5% in 2003 and decreased (OR = 0.947, 95% CI [0.926, 0.970]) every year. The absolute prescription rate of anti-dementia drugs was 0.8% in 2003 and increased (OR = 1.162, 95% CI [1.105, 1.223]) per year. The absolute rate of overall PDPs declined from 62.7% in 2003 to 40.4% in 2018. CONCLUSIONS: Among Dutch NH residents with dementia, the odds of antipsychotics prescriptions decreased by 5.3% per year while the odds of anti-dementia drug prescriptions increased by 16.2%. There were no distinct trends in antidepressants, anxiolytics, and hypnotics prescriptions. However, overall PDPs were still high. The PDPs in NH residents remain an issue of concern.