[Evaluation of an information booklet on end-of-life care in dementia: a mixed-methods study assessing the preferences of family caregivers and healthcare professionals]. / Een 'mixed-methods' evaluatie-onderzoek naar voorkeuren van naasten en zorgprofessionals voor een handreiking over levenseindezorg bij dementie.

A booklet was developed in Canada in 2005 to inform family caregivers of people with dementia about end-of-life care. A Dutch version was published in 2011 after evaluation and revision. Developments in research and society call for a second revision. The aim of this study was to map out users' (family caregivers and healthcare professionals) preferences regarding the look and feel, and content of the booklet. To this end, in addition to the current paper booklet, we created a prototype website and app, along with three illustration options. Twenty-one family caregivers and nineteen healthcare professionals completed a questionnaire about their preferences. Open ended questions were analyzed using content analysis, multiple-choice questions using descriptive analysis. The participants valued the question-answer format. They perceived the text as too medically oriented and they expressed a need for more inclusive language and broader information. The participants found images of people suitable for the booklet and they preferred the illustrations to be less focused on the medical context. The participants preferred the paper booklet and a website. By understanding family caregivers' and healthcare professionals' preferences, in the second revision, the booklet can be tailored to the user. It is expected that this tailoring will support informing family caregivers about end-of-life care.

The impact of the mySupport advance care planning intervention on family caregivers' perceptions of decision-making and care for nursing home residents with dementia: pretest-posttest study in six countries.

BACKGROUND: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. OBJECTIVES: to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. DESIGN: a pretest-posttest design. SETTING: in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. PARTICIPANTS: in total, 88 family caregivers completed baseline, intervention and follow-up assessments. METHODS: family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. RESULTS: family caregivers reported less decision-making uncertainty (-9.6, 95% confidence interval: -13.3, -6.0, P < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. CONCLUSIONS: the mySupport intervention may be impactful in countries beyond the original setting.

Change in Advance Care Plans of Nursing Home Residents With Dementia and Pneumonia: Secondary Analysis of Randomized Controlled Trial Data.

OBJECTIVES: To explore changes in advance care plans of nursing home residents with dementia following pneumonia, and factors associated with changes. Second, to explore factors associated with the person perceived by elderly care physicians as most influential in advance treatment decision making. DESIGN: Secondary analysis of physician-reported PneuMonitor trial data. SETTING AND PARTICIPANTS: The PneuMonitor trial took place between January 2012 and May 2015 in 32 nursing homes across the Netherlands; it involved 429 residents with dementia who developed pneumonia. METHODS: We compared advance care plans before and after the first pneumonia episode. Generalized logistic linear mixed models were used to explore associations of advance care plan changes with the person most influential in decision making, with demographics and indicators of disease progression. Exploratory analyses assessed associations with the person most influential in decision making. RESULTS: For >90% of the residents, advance care plans had been established before the pneumonia. After pneumonia, treatment goals were revised in 15.9% of residents; 72% of all changes entailed refinements of goals. Significant associations with treatment goal changes were not found. Treatment plans changed in 20.0% of residents. Changes in treatment decisions were more likely for residents who were more severely ill (odds ratio 1.5, 95% CI 1.2-1.9) and those estimated to live <3 months (odds ratio 3.3, 95% CI 1.9-5.8). Physicians reported that a family member was often (47.4%) most influential in decision making. Who is most influential was associated with the resident's dementia severity. CONCLUSIONS AND IMPLICATIONS: Overall, changes in advance care plans after pneumonia diagnosis were small, suggesting stability of most preferences or limited dynamics in the advance care planning process. Advance care planning involving family is common for nursing home residents with dementia, but advance care planning with persons with dementia themselves is rare and requires more attention.

How Do We Talk With People Living With Dementia About Future Care: A Scoping Review.

A diagnosis of dementia often comes with difficulties in understanding a conversational context and expressing how one feels. So far, research on how to facilitate advance care planning (ACP) for people with dementia focused on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogate decision makers, e.g., family members. The aim of this review is to provide a better scope of the existing research on practical communication aspects related to dementia in ACP conversations. In November 2020, seven databases were searched to select papers for inclusion (Proquest, Medline, Embase, Scopus, Psycinfo, Amed, and Cinahl). This search was updated in December 2021. The search strategy consisted of three tiers (related terms to "dementia," "communication" and "ACP"), intersected by using the Boolean term "AND," and resulted in 787 studies. Two researchers followed explicit criteria for two sequential levels of screening, based on titles and abstracts and full papers. A total of 22 studies were included for data analysis. Seven topics (i.e., importance of having ACP conversations, knowledge gap, inclusion of people with dementia in ACP conversations, policy vs. practice, adapting to cognitive changes, adapting to psychosocial changes, and adapting to emotional changes) emerged clustered around two themes (i.e., communicating with people with dementia in ACP, and changes in communication due to dementia). This scoping review provides practical suggestions for healthcare professionals to improve ACP communication and uncovered gaps in research on communication aspects related to dementia in ACP conversations, such as non-verbal behavior, timing and implementation, and personal preferences.

The Impact of Social Distancing Due to the COVID-19 Pandemic on People with Dementia, Family Carers and Healthcare Professionals: A Qualitative Study.

Social distancing measures imposed because of the COVID-19 pandemic presented challenges to the health and wellbeing of people with dementia, family carers, and healthcare professionals. This study investigated the impact of these measures on all involved in the care for people with dementia. For this qualitative study, 20 family carers and 20 healthcare professionals from home care and long-term care (LTC) participated in a semi-structured interview. Interviews were analysed using an inductive thematic analysis approach. For people with dementia, the social distancing measures resulted in a deterioration of physical health. The impact on their emotional state and behaviour depended on the stage of dementia. Family carers experienced difficulty coping with visiting restrictions, anxiety regarding safety, and changes in carer burden. Healthcare professionals had an increased workload, and felt guilty about adhering to restrictive measures. Differences between home care and LTC were reported (i.e., societal initiatives focussed on LTC, scarcity of activities for community-dwelling people with dementia, use of personal protective equipment more intrusive for home care). The social distancing measures had a negative impact on persons with dementia, their family carers, and healthcare professionals. More attention is needed for community-dwelling people with dementia and family carers in times of social isolation.

Older Persons' and Their Caregivers' Perspectives and Experiences of Research Participation With Impaired Decision-Making Capacity: A Scoping Review.

BACKGROUND AND OBJECTIVES: Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. RESEARCH DESIGN AND METHODS: Scoping review of the literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. RESULTS: From 4,171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. DISCUSSION AND IMPLICATIONS: Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.

Evaluating quality of life and well-being at the intersection of dementia care and creative engagement.

Increasingly, art and design projects are used in dementia care settings to support the well-being of people living with dementia. However, the way well-being is defined and evaluated varies significantly in reporting. This study briefly examines the development of the concept of well-being and how it is intertwined with concepts of health and quality of life. It presents a scoping review of studies that use art and design to support the well-being of people living with dementia. We examined the characteristics and methodologies of the studies, how well-being is understood and operationalized, and how the outcomes are reported. The aim of this study was to understand whether there is any consistency in how well-being and related terminology are understood, the methodologies used, how projects are evaluated, the assessment tools used, and in what outcomes and implications are discussed. Results showed well-being and related terminology are used to reference the social, physical, states of mind and feelings, and in opposition to identified deficits. There was no consistent approach to how arts engagement for well-being in the dementia care space is carried out and evaluated. However, this study suggests that this is not necessarily problematic across arts engagement activities for well-being, providing the use of terminology and approaches, and means of evaluation are consistent and retain integrity within the design of individual projects. It suggests that well-designed projects provide frameworks that are able to take into account the many variables in relation to art and creativity and dementia care, and can offer transferability.

Using a second-person approach to identify disease-specific profiles of social behavior in frontotemporal dementia and Alzheimer's disease.

Changes in social behavior are recognized as potential symptoms of behavioral-variant frontotemporal dementia (bvFTD) and semantic dementia (SD), yet objective ways to assess these behaviors in natural social situations are lacking. This study takes a truly social (or second-person) approach and examines changes in real-world social behavior in different dementia syndromes, by analyzing non-scripted social interactions in bvFTD patients (n = 20) and SD patients (n = 20), compared to patients with Alzheimer's disease (AD) (n = 20). Video recordings of 10-min conversations between patients and behavioral neurologists were analyzed for the presence of socially engaging (e.g., nodding, smiling, gesturing) and disengaging behavior (e.g., avoiding eye contact, self-grooming, interrupting). Results demonstrated disease-specific profiles, with bvFTD patients showing less nodding and more looking away than AD, and SD patients showing more gesturing than AD. A principal components analysis revealed the presence of four unobserved components, showing atypical disengaging patterns of behavior. Whole-brain voxel-based morphometry analyses revealed distinct neurobiological bases for each of these components, with the brain regions identified previously associated with behavior selection, abstract mentalization and processing of multi-sensory and socially-relevant information, in mediating socially engaging and disengaging behavior. This study demonstrates the utility of systematic behavioral observation of social interactions in the differential diagnosis of dementia.

Emotion Recognition and Aging. Comparing a Labeling Task With a Categorization Task Using Facial Representations.

Research suggests that aging comes with a decline in the ability to identify emotional expressions. In previous studies on emotion recognition and aging, participants were typically instructed to classify images of facial expressions using sets of lexical emotion labels. Yet, in daily life, when exposed to facial expressions by others, people match these with their conceptual knowledge of how emotions are visually presented (i.e., a smile for "happiness"), rather than recalling lexical labels (i.e., the word "happy"). By comparing performances of young adults and older adults on an emotion sorting task based on visual categorization and a traditional labeling task based on lexical categorization, this research aimed to explore a different way of studying emotion recognition abilities over the lifespan. In line with earlier research, results of the labeling task showed that our older participants (M age = 71.9) were less accurate in labeling emotions than participants in a young age group (M age = 23.8), especially for expressions of sadness, fear, anger and contempt. Outcomes of the categorization task suggest that older adults have difficulties separating distinctive meanings of emotions more than young adults do. Results of this study indeed shows a decline in emotion recognition using both tasks, and suggests future studies to examine possible changes in conceptual knowledge of emotions, rather than the inability to perceive certain facial cues.

Children's spontaneous emotional expressions while receiving (un)wanted prizes in the presence of peers.

Although current emotion theories emphasize the importance of contextual factors for emotional expressive behavior, developmental studies that examine such factors are currently thin on the ground. In this research, we studied the course of emotional expressions of 8- and 11-year-old children after winning a (large) first prize or a (substantially smaller) consolation prize, while playing a game competing against the computer or a physically co-present peer. We analyzed their emotional reactions by conducting two perception tests in which participants rated children's level of happiness. Results showed that co-presence positively affected children's happiness only when receiving the first prize. Moreover, for children who were in the presence of a peer, we found that eye contact affected children's expressions of happiness, but that the effect was different for different age groups: 8-year-old children were negatively affected, and 11-year-old children positively. Overall, we can conclude that as children grow older and their social awareness increases, the presence of a peer affects their non-verbal expressions, regardless of their appreciation of their prize.

Children's expression of uncertainty in collaborative and competitive contexts.

We studied the effect of two social settings (collaborative versus competitive) on the visual and auditory expressions of uncertainty by children in two age groups (8 and 11). We conducted an experiment in which children played a quiz game in pairs. They either had to collaborate or compete with each other. We found that the Feeling-of-Knowing of eight-year-old children did not seem to be affected by the social setting, contrary to the Feeling-of-Knowing of 11-year-old children. In addition, we labelled children's expressions in clips taken from the experiment for various visual and auditory features. We found that children used some of these features to signal uncertainty and that older children exhibited clearer cues than younger children. In a subsequent perception test, adults rated children's certainty in clips used for labelling. It appeared that older children and children in competition expressed their confidence level more clearly than younger children and children in collaboration.