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Although dementia has a profound impact in general, young-onset dementia causes additional problems and challenges as people are affected in their prime years. Awareness has increased that people with young-onset dementia and their families have specific care needs and dedicated services are necessary to accommodate those needs. However, in many countries, age-appropriate care and support for people with young-onset dementia is still largely unavailable. In this special article, barriers as well as facilitators for the development of postdiagnostic care and support in young-onset dementia are addressed. Drawing from the experiences in the Netherlands, the establishment of an appropriate infrastructure has proven a corner stone in service development in young-onset dementia. The establishment of a center at the national level for the development and dissemination of knowledge and affiliated regional centers that coordinate and offer care and support at the regional level has helped to reimagine, redefine, but more importantly also rearrange, postdiagnostic care and support in young-onset dementia in the Netherlands. This has resulted in care standards for service provision in young-onset dementia that have been incorporated in the dementia standard at the national level. Also, a quality hallmark has been developed to guide the arrangement of age-appropriate services at the local level. Moreover, specific training programs are in place for health care professionals involved in young-onset dementia. To be able to prioritize topics in research for the upcoming years, a scientific agenda has been established. The strong collaboration between organizations that provide a voice for people with dementia, care providers and research centers, that all strive to support people to live well with young-onset dementia has boosted these developments and may inspire other countries searching for ways to improve postdiagnostic care and support in young-onset dementia. [ABSTRACT FROM AUTHOR]

To assess short- and long-term mortality and risk factors in nursing home patients with COVID-19 infection. Retrospective 2-center cohort study. Dutch nursing home patients with clinically suspected COVID-19 infection confirmed by reverse transcription-polymerase chain reaction testing. 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. 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). 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. [ABSTRACT FROM AUTHOR]

The complex care needs of frail older persons living at home is a major challenge for health care systems worldwide. One possible solution is to employ a primary care physician (PCP) with additional geriatric expertise. In the Netherlands, elderly care physicians (ECPs), who traditionally work in nursing homes, are increasingly encouraged to utilize their expertise within primary care. However, little is known about how PCPs and ECPs collaborate. Therefore, we aimed to unravel the nature of the current PCP-ECP collaboration in primary care for frail older persons, and to identify key concepts for success. A qualitative multiple case study with semistructured interviews. A selection of 22 participants from 7 "established collaboration practices" within the primary care setting in the Netherlands, including at least 1 ECP, 1 PCP, and 1 other health care professional for every included established collaboration practice. Transcripts of individual interviews were analyzed using largely double and independent open and axial coding, and formulation of themes and subthemes. Data analysis revealed 4 key concepts for success: (1) clarification of roles and expectations (ie, patient-centered care and embedding in existing care networks), (2) trust, respect, and familiarity as drivers for collaboration (ie, mutual trust through knowing each other and having shared goals); (3) framework for regular communication (ie, structural meetings and a shared vision); and (4) government, payer, and organization support (ie, financial support and emphasis on the collaboration's urgency by organizations and national policy makers). For a successful generalist-specialist collaboration, health care professionals need to invest in building relationships and mutual trust, and incorporating their efforts in the existing care networks to guarantee patient-centeredness. When provided with reimbursement and appreciation, this collaboration is a promising change in general practice to improve the care and outcomes of frail older persons. [ABSTRACT FROM AUTHOR]

To explore the course of quality of life (QoL) and possible resident-related predictors associated with this course in institutionalized people with young-onset dementia (YOD). An observational longitudinal study. A total of 278 residents with YOD were recruited from 13 YOD special care units in the Netherlands. Secondary analyses were conducted with longitudinal data from the Behavior and Evolution in Young-ONset Dementia (BEYOND)-II study. QoL was assessed with proxy ratings, using the Quality of Life in Dementia (QUALIDEM) questionnaire at 4 assessment points over 18 months. Predictors included age, gender, dementia subtype, length of stay, dementia severity, neuropsychiatric symptoms, and psychotropic drug use at baseline. Multilevel modeling was used to adjust for the correlation of measurements within residents and clustering of residents within nursing homes. The total QUALIDEM score (range: 0-111) decreased over 18 months with a small change of 0.65 (95% confidence interval −1.27, −0.04) points per 6 months. An increase in several domains of QoL regarding care relationship, positive self-image, and feeling at home was seen over time, whereas a decline was observed in the subscales positive affect, social relations, and having something to do. Residents with higher levels of QoL and more advanced dementia at baseline showed a more progressive decline in QoL over time. Sensitivity analyses indicated a more progressive decline in QoL for residents who died during the follow-up. This study shows that although overall QoL in nursing home residents with YOD was relatively stable over 18 months, there were multidirectional changes in the QoL subscales that could be clinically relevant. Higher levels of QoL and more advanced stages of dementia at baseline predicted a more progressive decline in QoL over time. More longitudinal studies are needed to verify factors influencing QoL in YOD. [ABSTRACT FROM AUTHOR]