LuBAIR™ Paradigm, a novel approach to ascribing meaning for behavioral expression in advanced neurocognitive disorder, was used to identify behavioral categories that are likely to respond to the use of atypical antipsychotics in their management.

A retrospective study.

St. Peter’s Hospital (SPH), Hamilton, Ontario, Canada.

Forty patients qualified for the study.

LuBAIR™ Inventory populated on all recruited patients on two separate occasions. The first time was within two weeks of admission and the second time was after sixty days, if they successfully de-prescribed off the AAP, or sooner, if they failed de-prescribing.

Chi-Square paired t-test and Cohen d Statistical tests were used to detect the difference in the behavioral categories between the two cohorts.

Seventeen patients were successfully de-prescribed, and twenty-three failed de-prescribing. Results on the LuBAIR™ Inventory, filled on the second occasion, in the successful de-prescribed and the failed de-prescribed groups compared using the Chi-Square Statistical test to detect the difference in the behavioral categories the two cohorts. Patients who did not have Mis-Identification Expressions (MiE) and Goal-Directed Expressions (GDE), amongst the cluster of behavioral categories in their clinical presentation, were more likely to successfully de-prescribe of AAP: X2 (1, N = 40) = 29.119 p<.0001 and X2 (1, N = 40) = 32.374, p<.0001, respectively. Alternatively, the same behavioral categories were more likely to be present in patients who failed de-prescribing: paired t-test and Cohen-d (P<0.0001).

The MIE and GDE were statistically significant, suggesting that these behaviors were more present in patients who failed de-prescribing. Atypical antipsychotics, in their role as an antipsychotic and mood stabilizer, may be used to manage Mis-Identification and Goal-Directed Expressions, respectively.

Previous research showed that people with young-onset dementia and their family caregivers spontaneously addressed the topic of euthanasia when talking about the broader topic of advance care planning. A better understanding of what people address and why may provide innovative insights to inform the evolving physician assisted dying legislation worldwide. This study aimed to identify what people with young-onset dementia and their family caregivers spontaneously expressed regarding (communication about) euthanasia when discussing the topic of advance care planning.

A secondary qualitative analysis was conducted, through the method of constant comparative analysis on semi-structured interviews. We included 10 people with young-onset dementia and 25 family caregivers in Flanders, Belgium.

Respondents described similar contexts for discussions about euthanasia: the topic arose at several key moments, usually with informal caregivers, and was motivated by patients considering the impact of disease progression both for themselves, thereby mainly wanting to avoid decline and maintain dignity, and their loved ones. Family caregivers paid considerable attention to the legality of euthanasia in dementia, specifically with regard to cognitive capacity, and elaborated on the difficulties and emotional impact of discussing euthanasia.

Considerations of people with young-onset dementia towards euthanasia appeared rooted in personal unbearable suffering and in expected interpersonal and societal consequences of their condition. Negative social framing of young-onset dementia might contribute to the livelihood of euthanasia in respondents’ thoughts. The incorporation of euthanasia as a legal end-of-life option was mirrored in its incorporation in patients’ and family caregivers’ thought framework.

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 potentially modifiable risk factors. Social health might play a role in cognitive decline and dementia. The Social Health And REserve in the Dementia patient journey (SHARED) project aims to unravel the interplay between social health and biological and psychological factors on the trajectory from cognitive healthy. A multi-method approach is used, including the development of a conceptual framework for social health and its application in epidemiological and qualitative studies. Epidemiological studies in the SHARED project reveal potentially modifiable social health characteristics or markers associated with cognitive decline, dementia and mortality. This may shape new avenues for future interventions to prevent or delay cognitive decline and dementia and to enhance living well with dementia.

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.

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.

Good social connections are proposed to positively influence the course of cognitive decline by stimulating cognitive reserve and buffering harmful stress-related health effects. Prior meta-analytic research has uncovered links between social connections and the risk of poor health outcomes such as mild cognitive impairment, dementia, and mortality. These studies have primarily used aggregate data from North America and Europe with limited markers of social connections. Further research is required to explore these associations longitudinally across a wider range of social connection markers in a global setting.

We examined the associations between social connection structure, function, and quality and the risk of our primary outcomes (mild cognitive impairment, dementia, and mortality).

Individual participant-level data were obtained from 13 longitudinal studies of ageing from across the globe. We conducted survival analysis using Cox regression models and combined estimates from each study using two-stage meta-analysis. We examined three social constructs: connection structure (living situation, relationship status, interactions with friends/family, community group engagement), function (social support, having a confidante) and quality (relationship satisfaction, loneliness) in relation to the risks of three primary outcomes (mild cognitive impairment, dementia, and mortality). In our partially adjusted models, we included age, sex, and education and in fully adjusted models used these variables as well as diabetes, hypertension, smoking, cardiovascular risk, and depression.

In our fully adjusted models we observed: a lower risk of mild cognitive impairment was associated with being married/in a relationship (vs. being single), weekly community group engagement (vs. no engagement), weekly family/friend interactions (vs. not interacting), and never feeling lonely (vs. often feeling lonely); a lower risk of dementia was associated with monthly/weekly family/friend interactions and having a confidante (vs. no confidante); a lower risk of mortality was associated with living with others (vs. living alone), yearly/monthly/weekly community group engagement, and having a confidante.

Good social connection structure, function, and quality are associated with reduced risk of incident MCI, dementia, and mortality. Our results provide actionable evidence that social connections are required for healthy ageing.

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.

Social functioning is fundamental to human experience. The profound social functioning impairments affecting people with dementia are distressing to them and their families and account for significant individual, family and societal burden. There are no effective treatments that improve this major aspect of dementia, so there is urgent need to characterise social functioning decline in dementia and its consequences to inform future therapeutic approaches. In this symposium, an international panel will present perspectives on social functioning in dementia from across the disease course.