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Background: Increasing public awareness and understanding of dementia is the second key action area of the 2017 WHO Global action plan on a public health response to dementia. To achieve this aim, the first indispensable step is to understand the average level of dementia knowledge and to identify areas of low dementia knowledge. We aimed to quantify dementia knowledge in the general population, and to explore the extent to which it differs by age, sex, education, and indirect experience with dementia., Methods: We conducted an online cross-sectional survey in two Italian-speaking sites, south Switzerland (Ticino) and northern Italy (Piedmont). The survey was distributed between September and December 2019. We registered socio-demographic characteristics including whether the participant had contact with a person living with dementia, and measured dementia knowledge with the Dementia Knowledge Assessment Survey (DKAS)., Results: Misconceptions about dementia were common among respondents, and lack of knowledge has been identified in dementia causes, characteristics, risk factors, and health promotion. Our results point out the lack of knowledge about how to communicate and relate with, and take care of a person living with dementia. The overall DKAS score was significantly and positively associated with female sex (β = 0.21; p < 0.001), educational level (β = 0.15; p < 0.001) and contact with a person living with dementia (β = 0.17; p < 0.001), but not with age (β = -0.01; p = 0.57)., Conclusion: Our results confirmed that general population's knowledge of dementia is thin. Interventional studies that rely on participatory action research methods are warranted to co-design interventions aimed at improving dementia knowledge and understanding in the public., (© 2022. The Author(s).)

Supportive measures and training interventions can improve the care of people with dementia and reduce the burden on informal caregivers, whose needs remain largely unmet. iSupport is an evidence-based online intervention developed by the World Health Organization to provide support and self-guided education to informal family caregivers of people with dementia. This qualitative study explored barriers and facilitators in the access and use of supportive measures for family caregivers of people with dementia living in Southern Switzerland (Ticino). We conducted five focus groups and explored experiences, beliefs, and attitudes toward seeking help (SH), and used thematic analysis to identify key themes. Participants (N = 13) reported a general reluctance to SH. We identified four main barriers to SH: high level of burden; sense of duty; fear of being misunderstood by others; and difficulty in reaching information. We also identified facilitators of help seeking behaviors and unveiled the need of caregivers to be assisted by a dementia case manager to facilitate access to support resources. Local services and interventions should be adapted to caregivers' needs and expectations, with the aim of facilitating the acceptance of, access to, and service integration of existing and future support measures, including iSupport.

Background: There is sparse evidence on the impact on vulnerable populations of the COVID-19 pandemic. The aim of our study was to explore burden and mental wellbeing (including depressive, anxiety, and stress symptoms) in caregivers of people with dementia during the first wave of the pandemic in Italy and southern Switzerland, two bordering regions severely hit by the COVID-19 pandemic., Methods: We conducted an online cross-sectional survey with family carers of people with dementia between May and June 2020. We registered socio-demographic characteristics, and information about the relationship with the care recipient, dementia subtype, care inputs from others, and the need of care of the person with dementia. We measured caregiver burden with the Zarit Burden Interview (ZBI), psychological distress with the Depression, Anxiety and Stress Scale (DASS-21), and perceived isolation with the 3-item UCLA Loneliness Scale (UCLALS3)., Results: Caregivers (N =571) reported moderate to severe care-related burden (mean=54.30; SD=18.33), moderate anxiety symptoms (mean=10.04; SD=6.93), mild depressive symptoms (mean=11.79; SD=6.12) and mild stress (mean=12.95; SD=5.53), and 72.3% of participants reported to feel lonely. All scores were significantly more severe in Swiss compared to Italian caregivers (all p values<0.001)., Conclusions: We found that caregivers' burden, anxiety symptoms, depression and perceived loneliness were marked during the first wave of the COVID-19 pandemic, in two severely hit bordering countries. Regional differences in the impact of the epidemic on caregivers could be due to contextual, societal, and cultural circumstances. As the pandemic endures, support to caregivers of people with dementia should be proportionate and tailored to needs and adapted to contextual factors., (© 2022. The Author(s).)

Introduction: High participation in epidemiological studies is crucial for both external and internal validity. Because response rates have declined in recent years, there is an increasing need to understand the drivers and the barriers to research participation. This study aims to uncover the motivations in favour and against participation of older adults to an epidemiological study on health and dementia., Methods: Twenty-two older adults, who already took part to the preliminary phase of an epidemiological study in Switzerland, agreed to participate to semi-structured, face-to- face interviews. An experienced researcher carried out all interviews in a quiet place of choice of the interviewee either at their domicile or the university, between November 2019 and January 2020. The interviews were audio and video taped, transcribed verbatim, and thematically analysed by two independent researchers., Results: We identified three main themes for the motivations in favour of participation (i.e. personal, related to the outcomes of research, and altruistic motivations), and we highlighted subthemes for each theme (e.g. personal motivations: curiosity; civic engagement; interest in the topic; trust in science; everyone counts; openness; play the game). Motivations against participation reflected the first two themes, while there was no counterpart for altruistic motivations., Conclusions: Our thematic analysis revealed that older adults hold specular motivations in favour and against participation to research. Studying jointly motivations in favour and against provides information for recruitment strategies and to overcome barriers to participation, respectively. Participatory action research can inform the design and conduction of and should precede epidemiological studies in older adults, and can potentially contribute to attain high response rates., Competing Interests: The authors declare no competing interest.

Objectives: To explore prospective participants' preferences regarding the return of their individual-specific results from a dementia prevalence study (a probabilistic diagnosis of dementia)., Methods/design: We conducted a qualitative study with 22 individuals aged 45 to 86 and resident in the Canton of Ticino (Switzerland). Participants had previously joined the validation phase of an epidemiological study into dementia and its impact., Results: We found that individuals welcome the return of their individual-specific results, provided these meet a number of validity, clinical, and personal utility criteria. They justify researchers' duty to return study findings with the principles of beneficence (eg, providing information that can help participants' medical decision-making) and justice (eg, acknowledging participants' efforts to help research by sharing their personal information). Furthermore, individuals anticipate societal benefits of the return of individual specific study findings, including improved interpersonal relationships among individuals and decreased dementia-related stigma., Conclusions: Our findings suggest that researchers should address the return of individual-specific study results early on during study design and involve prospective participants in identifying both the conditions under which results should be offered and the perceived individual and societal benefits returning can have., (© 2020 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)