Objectives: Understanding the timing of service access for persons with young-onset dementia is essential for developing adequate support. This study aims to describe the formal support available for persons with young-onset dementia in Sweden and identify factors influencing its provision over time. Method: A prospective cohort study was carried out using data from the Swedish Dementia Registry (SveDem), focusing on persons diagnosed with young-onset dementia between January 2009 and April 2022 (n = 2592). Descriptive statistics provided a comprehensive overview of the population, and Cox Regressions were used to analyse factors associated with the time to receive support services post-diagnosis. Results: Living with another adult and higher MMSE scores were significantly associated with later access to home help services (p < 0.001) and care facilities (p < 0.001). Higher MMSE scores (p < 0.001), older age (p = 0.023), living with another adult (p = 0.010) and diagnosis at primary care centres (p = 0.016) were also associated with later access to day-care services. No significant associations were found between age, sex, medications, care setting, living arrangement, or MMSE score or with the time to access counselling services. Conclusion: The timing of access to support services for persons with young-onset dementia varies significantly, particularly for those living with another adult. These patterns may reflect a hidden caregiver burden.

Aging in a Welfare State is a course with the aim of student exchange of knowledge about the Swedish and US healthcare systems. The campus week’s main purpose is to stimulate students’ reflection on their own country’s healthcare system. The week is initiated with a day of perspectives of and study visits on Growing up in Sweden to introduce US students to Sweden’s welfare system. However, most of the week focuses on Aging in a Western Country, Old Age Care and Perspectives of Aging. Prior to the campus week students have prepared for discussions involving a case study of the US system and a paper with reflections on current and future challenges within old age care. Discussions and comparisons of Sweden’s universal high-state regime and US mixed system for older people are a valued feature of campus week. Along with lectures, discussions and study visits related to the welfare system, leisure activities are offered in the form of excursions to Swedish sights. Planning for the campus week requires high coordination. Some of the challenges associated with coordinating campus week involve recruiting Swedish students, getting students from different countries and campuses to interact, logistics of traveling, scheduling lectures and site visits. This presentation contributes challenges and success factors for internationalization in education. Campus week is a valued feature of the course and opens opportunities for students to gain theoretical knowledge at the same time as they have the opportunity for increased understanding through real life experiences of the study visits.

Studies have shown significant heterogeneity in the longitudinal progression of dementia. Growth mixture models have detected up to 4 classes that differ in both baseline Mini-Mental State Exam (MMSE) and rate of decline over time. Most analyses focus on adults over age 65 and investigate group differences in demographic and health variables. The current analysis focused on adults with young onset dementia (YOD) and examined the role of demographic and support variables. Sample included 1025 adults (55% women) registered in the Swedish Dementia Register prior to age 65 with at least 3 registrations. Age at baseline was 38 to 64 (mean=59.3, SD=4.1); follow-up ranged from 1 to 12 years (mean=4.6, SD=2.0). Growth mixture models identified 4 classes: high baseline MMSE and moderate decline over time (56.1%), intermediate baseline MMSE and somewhat faster decline (39.2%), low baseline and stable MMSE over time (3.5%), and high baseline with steep decline (1.2%). Group 2 had the highest proportion Alzheimer’s Disease (AD) diagnosis and Group 4 had the lowest. Group 3 was more likely to have vascular or unspecified dementia and Group 4 was more likely to have vascular or frontotemporal dementia. Groups differed in age at diagnosis (Group 2 youngest), participation in adult daycare (Group 4 most likely), and having home health assistance (Group 2 most likely). Results highlight that YOD is just as heterogeneous as later onset dementia; therefore, it is vital that people with YOD get early diagnosis and a case manager to help identity and meet their individual needs.

About 3.9 million people live with Young Onset Dementia (YOD) worldwide. As dementia progresses, there may be a need for transition to residential care. It can be challenging for persons with YOD to access age-appropriate services, even though they might have different needs compared to persons with late-onset dementia. This scoping review aimed to present the experiences of people with YOD living in residential care facilities. Peer-reviewed research articles focusing on either the perspective of people with dementia onset before the age of 65 living in residential care or their family members were included. A literature search in MEDLINE, CINAHL, PsycINFO, Scopus, ProQuest, and Web of Science conducted in December 2023 yielded 13 qualitative studies from Europe, North America, and Australasia. Four studies included experiences of persons with YOD, three included experiences of family members, and six had a mix of participant experiences. In total, 90 (Md = 9) persons with dementia and 292 (Md = 17) family members participated. A synthesis of findings indicates that a home-like environment and age-adjusted activities based on the interests of the individual were highly valued. This review provides a first step towards understanding what person-centered care means for people with YOD in residential care. However, even though people with YOD can communicate their experiences and needs, there were few studies focusing on their perspectives. To improve care, further research needs to focus on the voices of individuals with dementia.

Approximately 10,000 people in Sweden have Young Onset Dementia (YOD), i.e., dementia onset before the age of 65. As a result of disease progression, relocation to a residential care facility might be necessary. In Sweden, age-adapted residential facilities are only available in larger cities, and the specific needs of persons living with YOD might not be adequately addressed. The study aimed to describe characteristics of residents with YOD living in residential care and the quality of care. National quality registry data from the Swedish Dementia Register (SveDem) between 2012 and 2022 were used. In total, 124 people with YOD living in residential care units designed for persons with dementia (n=109) or in residential care facilities for older persons (n=15) were identified. The average age of admittance was 61.3±3.9 years, with no significant differences found between women and men. On average, six medications were used, and a medication review had been conducted within the past 12 months for 84% of the participants. Care received in accordance with one’s life story (71%) and individual environmental adaptations (64%) were common. However, few participants (22%) had advanced care plans, and restraints were present in 44% of the persons with YOD. While it is not possible to draw general conclusions from this small study, it indicates that person-centered care is central in residential care for persons with YOD in Sweden. Future research should focus on increasing the understanding of why staff use restraints to such a high extent and how this practice can be prevented.

Background: Ethical principles behind prioritization in healthcare are continuously relevant. However, applying ethical principles during times of increased need, such as during the COVID-19 pandemic, is challenging. Also, little is known about nursing home nurses’ prioritizations in their work to achieve well-being and health for nursing home residents.

Aim: The aim of this study was to explore nursing home nurses’ priority-setting for older nursing home residents in Sweden during the COVID-19 pandemic.

Research design, participants, and research context: We conducted a qualitative interview study. Data were collected through in-depth interviews (retrospective self-reports) between February and May 2021 with 21 nursing home nurses. To help respondents to recall their memories, we used the critical incident technique (CIT). We analyzed data within the theoretical framework and the methodological orientation of content analysis. Ethical considerations: Written and verbal consent was obtained before the interviews, and information was given to participants informing them that participation was entirely voluntary. The Swedish Ethical Review Agency gave an advisory opinion stating that there were no ethical objections to the research project (Dnr. 2020-05649).

Findings: We identified an overarching theme—nursing home nurses struggling on multiple fronts, “just do it”—and seven categories: striving for survival and caring about a dignified death; responding sensitively to relatives’ expectations; ranking the urgency of needed care; responding to input from different actors; combating the spread of infection in unconventional ways; taking the lead and doing what is required; and following the ideals of person-centered nursing.

Conclusions: Nurses’ priority-setting for older nursing homes residents during the COVID-19 pandemic meant strain and struggle. In some cases, nurses had taken responsibility for priorities falling outside their statutory powers. Different demands and interests affected nurses’ priorities. Nursing home nurses need organizational and managerial support to prioritize.

BACKGROUND: Approximately 3.9 million persons worldwide have young-onset dementia. Symptoms related to young-onset dementia present distinct challenges related to finances, employment, and family. To provide tailored support, it is important to gain knowledge about the formal support available for persons with young-onset dementia. Therefore, this paper aims to describe formal support for persons with young-onset dementia in Sweden and the factors influencing this support.

METHODS: This retrospective study used data on persons under 65 years of age (n = 284) from The Swedish Registry for Cognitive/Dementia Disorders (SveDem) between 2021 and 2022. SveDem was established to monitor the quality of dementia care in Sweden. Characteristics of participants were obtained, including age, sex, dementia diagnosis, MMSE, medications, accommodation, and care setting. Descriptive statistics and logistic regression were used to test for associations between participant characteristics and post-diagnostic support.

RESULTS: Information and educational support were usually offered to the person with young-onset dementia (90.1%) and their family (78.9%). Approximately half of the sample were offered contact with a dementia nurse (49.3%), counsellor (51.4%), or needs assessor (47.9%). A minority (28.5%) were offered cognitive aids. Six regression models were conducted based on participant characteristics to predict the likelihood that persons were offered support. Support was not predicted by age, sex, children at home, accommodation, or medications. Lower MMSE scores (p < .05) and home help (p < .05) were significantly associated with offer of a needs assessor. Living together was a significant predictor (p < .01) for information and educational support offered to the family. Care setting significantly predicted (p < .01) an offer of information and educational support for the person and family members, as well as contact with a counsellor.

CONCLUSION: This study indicates potential formal support shortages for persons with young-onset dementia in some areas of dementia care. Despite equal support across most characteristics, disparities based on care setting highlight the importance of specialised dementia care. Pre-diagnostic support is minimal, indicating challenges for persons with young-onset dementia to access these services before diagnosis. While our study has identified areas in need of improvement, we recommend further research to understand the changing support needs of those with young-onset dementia.

Symptoms of dementia change over time, resulting in complex situations that can negatively impact the person with dementia, as well as their relatives, and create challenges for staff members. Behavioral and Psychological Symptoms of Dementia (BPSD), such as delusions, hallucinations, agitation, depression, anxiety, apathy, irritability, aberrant motor behavior, and sleep disturbances, occur in approximately 90% of older people with dementia. The purpose of the study was to identify potential barriers and facilitators prior to introducing a web-based digital tool, the Daily-BPSD. Daily-BPSD is going to be used by staff members for daily registrations of severity levels of BPSD for persons with dementia in nursing home care in Sweden. Qualitative data collection was conducted in co-production with previous users of a similar digital tool in disability care (n = 11) and future users in dementia care (n = 32). The participants were assistant nurses, care managers, nurses, occupational therapists, and relatives. The responses highlight the importance of an accessible and time-effective registration procedure, a manageable number of variables and registrations occasions per day, and ensuring that the same information does not need to be documented in different systems. The findings will be used to tailor Daily-BPSD and adequately prepare staff members for large-scale data collection in the next step of the research project. Daily-BPSD could provide an extended foundation of knowledge of the person with BPSD, which could be used to provide more person-centered and appropriate care.

Policies and services to support informal caregivers vary considerably across countries. This paper examines the role of caregivers and how perspectives on that role may influence the availability of benefits and services in three countries that differ considerably in their care systems - Sweden, Ireland and the United States. We developed a nine-dimensional framework for examining differences, including policies and how the role of caregiver is conceptualized. We found differences in the three countries in how services are organized, which reflected assumptions about the caregiver role. There were also similarities in the three countries. Caregivers held an ambiguous position within each social system and there was little concern for equity in the delivery of support services. Increased clarity about the role of caregivers may facilitate development of policies that more effectively meet their varied needs.

Most adverse events in health care are related to medication management and they are almost always preventable. Increased knowledge of patient safety related to medication management in home health care is an urgent issue to provide safe care for all patients regardless of where the health care takes place. This study explored patient safety within medication management in municipal home health care. Vignettes were used as stimulus during qualitative interviews with registered nurses. Three main themes with related subthemes were identified as challenges to patient safety within medication management in home health care: (1) challenges to information transfer, (2) challenges related to delegation, and (3) challenges of advanced medical treatments in the home. The issue of transfer of information permeated our findings. Coordinating medications, delegating tasks, along with more advanced care require clear communication between care providers to be compatible with patient safety within medication management in home health care.