Specialist-provided end-of-life scenarios (SP-EOLS) may improve advance care planning (ACP) implementation in primary care by helping overcome barriers such as uncertain prognosis and poor interprofessional collaboration. We aimed to explore the current use and potential impact of SP-EOLS on ACP in Dutch primary care.

We performed a mixed-methods study. From patients discussed in a hospital-based academic palliative care multidisciplinary team meeting between 2016 and 2019 and died, we collected primary care electronic medical records data on SP-EOLS, actual EOLS, and ACP initiation and applied descriptive and comparative analyses. Subsequently, we interviewed general practitioners (GPs) and thematically analyzed the transcripts.

In 69.7% of 66 reviewed patient files, SP-EOLS were found. In patients whose GP had received SP-EOLS, ACP conversations were more often reported (92.0 vs. 61.0%, p = 0.006). From 11 GP interviews, we identified 4 themes: (1) SP-EOLS guide GPs, patients, and relatives when dealing with an uncertain future perspective; (2) SP-EOLS provide continuity of care between primary and secondary/tertiary care; (3) SP-EOLS should be tailored to the individual patient; and (4) SP-EOLS need to be personalized and uniformly transferred to GPs.

SP-EOLS may facilitate ACP conversations by GPs. They have the potential to help overcome existing barriers to ACP implementation by providing guidance and supporting interprofessional collaboration. Future research should focus on improving SP-EOLS and tailor them to the needs of all end users, focusing on improving their effect on ACP conversations.

Elderly people who live in nursing homes can be faced with intramural relocations for various reasons, whether individual or per group. Because the impact of these intramural relocations on residents is unknown, our aim is to explore how relocations within nursing homes affect residents from different stakeholder-perspectives.

We performed semi-structured individual interviews and a focus group with various stakeholders of intramural relocations to collect a broad outlook on its practice based on diverse perspectives and lived experiences. The interviews and focus group were audio-recorded, transcribed verbatim and analyzed using responsive and thematic analysis.

Seventeen interviews were held and one online focus group with six participants. In the interviews, participants mentioned various reasons for intramural relocations, such as outdated real estate for group relocations or changing healthcare demand for individual relocations. Participants distinguished various levels of impact on residents on different moments in time (before, during and after the relocation). The impact varied from very positive (e.g. looking forward and excited) to very negative (e.g. stressful, traumatic, hard to understand). Aspects that influenced the impact of relocation were related to 1) the mental resilience of residents, 2) how relocations were organized, 3) the presence and quality of social connections of residents and 4) if benefits of the new (care) environment were experienced. The focus group added insights on the importance of clear and timely communication with residents and recognizability of (personal) items and personnel from the former nursing home to reduce negative experiences of residents relocating within nursing homes.

The impact of relocations within nursing homes differs per situation, moment in time and resident. Aspects found that influence the impact provide targets to reduce the negative impact on residents: practices should focus on good preparation, clear communication, preserving social connections of residents where possible and paying attention to the benefits of the new (care) environment for the residents. Further research may focus on the lived experiences and perceived impact of relocations within nursing homes of residents themselves to develop in depth insights into tailored (care) needs of residents during the relocation process.

Advance care planning (ACP), one of the key domains of palliative care, enables individuals to define and discuss goals and preferences for future treatment and care with family and healthcare professionals. By exploring the views of people with dementia on quality of life now and in the future, including the end of life, care provisions can be tailored to their values. The perspectives of people with young-onset dementia (YOD), with a symptom onset before the age of 65, may differ from those of older people with dementia given the different life phase and family context. Qualitative research methods can be used to elicit the attitudes and beliefs to generate insight into their perspectives.

Qualitive study, as part of the Care4Youngdem-study, using semi-structured interviews with a criterion-based purposive sample of community-dwelling people with YOD (n=10) and their (family) caregivers in the Netherlands. We adapted the interview guide based on discussion of the transcripts. Double coding of three interviews resulted in a codebook. The codes were subsequently analysed through thematic analysis.

Interviews took place between December 2019 and February 2022. The most prevalent dementia subtype was Alzheimer’s (n=7). Four overarching themes, based on 21 categories, were derived from the interviews: (1) connectedness with others, (2) sense of dignity, (3) acceptance versus no acceptance of the impact of dementia, (4) concerning oneself with the future versus not wishing to concern oneself with the future. Connectedness with others and a sense of dignity were deemed prerequisites for (future) quality of life but were affected by YOD. These themes overlapped in terms of axial codes. Ambiguities were seen in the attitude towards the impact of YOD and the preparation for the future. The degree of acceptance of YOD affected the orientation towards the future.

Family and professional caregivers should discuss with people with YOD how to maintain connectedness with others and a sense of dignity. Opposite ways of coping with the present and future were found. Professional caregivers should take personal coping styles into account when starting ACP conversations.

The recognition of dementia as a multifactorial disorder encourages the exploration of new pathways to understand its origins. Social health might play a role in cognitive decline and dementia, but conceptual clarity is lacking and this hinders investigation of associations and mechanisms. Social health might provide a new perspective on social connectedness. The objective is to develop a conceptual framework for social health to advance conceptual clarity in future studies and to identify potentially modifiable risk and protective factors in the “Social Health And Reserve in the Dementia patient journey (SHARED)” project.

The methods include the process of building the conceptual framework. We used the following steps: underpinning for concept advancement, concept advancement by the development of a conceptual model, and exploration of its potential feasibility.

Underpinning of the concept drew from a synthesis of theoretical, conceptual and epidemiological work, and resulted in the definition of social health as well-being that relies on capacities both of the individual and the social environment. In the conceptual framework the abstract definition has been elaborated into more precisely defined domains at both the individual and the social environmental levels. This allowed to identify domain related social health characteristics or markers in epidemiological data bases and to investigate associations between these markers and cognitive decline and dementia. The associated social health markers represent potentially modifiable risk and protective factors. Examples are “social engagement” in the participation domain at the individual level, and “frequency of contact” in the structure domain, “exchange of support” in the function domain and “loneliness” in the appraisal domain at the environmental level. The conceptual framework facilitated identification of domain related markers in the SHARED project, thus showing its potential feasibility.

The conceptual framework provides guidance for future research and facilitates identification of potentially modifiable risk and protective factors. These may shape new avenues for preventive interventions. We highlight the paradigm of social health in dementia as a priority for dementia research.

Dementia negatively affects the interaction with the social environment by changes in cognition and behavior. On the other hand, the social network may be an important enabler for persons with dementia to make use of their remaining capacities. Mechanisms driving and explaining these interactions are unknown. We aimed to explore how the social environment impacts the functioning and well-being of a person with dementia.

We performed a qualitative case study, conducting semi-structured interviews. We used the grounded theory approach, as defined by Strauss and Corbin, including alternate data collection and analysis. Per case, the person with dementia, the primary caregiver, significant kin or non-kin network member and the primary healthcare professional were interviewed individually. The interviews were conducted using a topic guide, which was adjusted according to preliminary analyses. Transcripts were coded by two researchers independently, where after axial codes, categories were formulated and a theory including a core phenomenon was identified with the entire research team.

Analyses revealed ‘creating a safe environment’ as a core phenomenon. This relates to encouragement and the created anchor points of the environment to compensate for the inevitable feelings of loss of control that persons with dementia experience. The ways safety is created include active acts of involvement and participation, trust, humor, reciprocity, appreciation and shared experiences. Suspicion, loss of initiative by the person with dementia and the inability to act and correcting by the environment were identified as major challenges to creating a safe environment.

A safe and supporting environment enables persons with dementia to use their remaining capacities. Active participation, trust, humor and reciprocity are key elements to create such a safe environment. These findings show that basic needs of persons with dementia for daily functioning and well-being are similar to these of all humans.

Besides aspects of physical and mental health and quality of life aspects the concept of social health is getting increasing attention in dementia research. Current research has led to a new umbrella concept of social health and first studies show relationships between social health markers and cognitive decline and dementia. But so far, no general overview exists how to measure social health in empirical studies.

The objective of this study therefore is to provide a systematic overview of instruments measuring aspects of social health and proposing a classification based on the new umbrella concept of social health.

Following the PRISMA 2020 guidelines a systematic review was conducted. The online search covered the databases PubMed/MEDLINE, PsychINFO, CINAHL within a publication period from 1st January 2000 till 15th October 2020 for English publications. To classify instruments a new multidimensional framework of social health was used.

A total of 150 studies with 68 single instruments were included into the study. A broad range of study types was covered (i.e., feasibility studies, cross-national panel studies) from all over the world, with the majority of studies being conducted in the USA. Most of the described instruments consist of self-report measures, but also proxy and hybrid tools were found. The length of the instruments in terms of the number of single items ranged from 3-126 items, with a median length of 13 items. On the individual level of social health with the three domains capacities, autonomy and social participation we classified 42 instruments and on the social environment level with the three domains structure, functions and appraisal we classified 53 instruments. A large part of the identified instruments only addresses single aspects of social health and does not address the multidimensionality of the concept.

A structured overview of measures related to the conceptual framework of social health can help develop appropriate interventions for people with dementia and improve the conditions for living well with dementia. Furthermore, the creation of new standardized and terminologically consistent measures of social health is one of the tasks for future research in the field of social health.

The coronavirus disease-2019 (COVID-19) pandemic and accompanying lockdown restrictions impacted social life significantly. We studied associations of sociodemographic factors, mental and social health markers, and brain structure with social health trajectories during the COVID-19 pandemic.

Prospective longitudinal population-based cohort study.

Community-dwelling inhabitants of Rotterdam, the Netherlands.

Repeated questionnaires including questions on social health were sent to Rotterdam Study participants from April 2020 onwards. Social health data at study baseline were available for 5017 participants (mean age: 68.7 ± 11.3; 56.9% women).

Determinants were assessed in routine Rotterdam Study follow-up (1990–2020), including global brain volumes in a subset of participants (N = 1720). We applied linear mixed models and generalized estimating equations to quantify associations between determinants and trajectories of loneliness, perceived social isolation and social connectedness over three time points from April 22nd to July 31st 2020.

Loneliness prevalence was 27.9% in April 2020 versus 12.6% prepandemic. Social isolation (baseline mean 4.7 ± 2.4) and loneliness scores (baseline mean 4.9 ± 1.5) decreased over time, whereas social connectedness trajectories remained stable. Depressive symptoms, female sex, prepandemic loneliness, living alone, and not owning a pet were independently associated with lower social connectedness and higher social isolation and loneliness at COVID-19 baseline, but recovery of social health was similar for all determinants. Larger intracranial volume was associated with higher social connectedness.

Despite baseline differences for specific determinants, older adults showed similar recovery of loneliness and social isolation alongside stable social connectedness over time during the pandemic. Social health is multidimensional, especially during a global health crisis.

Inclusion is taken as a natural situation, until feelings of exclusion are perceived. Social relations are for human beings like water to plants. Social health has been defined in 1946 by the WHO as the social domain of health. It is an umbrella concept that covers how the individual relates to his or her social environment and vice versa. Social inclusion is a key marker or characteristic of social health, represented by specific markers such as participation in leisure activities.

We aim to study theoretical mechanisms and social health markers relevant to inclusion and cognitive functioning.

identification of mechanistic pathways and systematic review on the relationship between combinations of social health markers and cognitive functioning and dementia in healthy older adults.

We combined neurobiological and social pathways to guide our study. The search for social health markers yielded 4332 potentially relevant citations. Eleven articles were eligible for inclusion. Combining social health marker reflecting social exclusion (e.g. social isolation, financial deprivation, living alone and lacking basic social rights) revealed a significant risk factor for both the development of dementia and reduced cognitive functioning. A combination of a high educational level, high occupational complexity and participating in leisure activities was protective for good cognitive functioning and dementia.

Several social health markers are a pathway to social inclusion and to cognitive functioning, with markers reflecting exclusion being a risk factor, while those reflection inclusion are associated with protective effects. These findings open doors for interventions using the potential of social health in prevention of cognitive decline and dementia.