COVID-19 vaccine uptake among family caregivers of people with dementia: The role of attitudes toward vaccination, perceived social support and personality traits.

People with dementia have an increased risk of contracting severe forms of COVID-19. Although in worldwide vaccination programs priority has been given to older people, having taken the vaccine does not totally eliminate the risk of contracting COVID-19 when one is in close contact with unvaccinated people. Thus, family caregivers' choices to remain unvaccinated against COVID-19 could have potentially lethal consequences for their relatives. To our knowledge, this study represents the first attempt within the international literature to analyze COVID-19 vaccine uptake among family caregivers of people with dementia and to identify some of the psychological factors, related to COVID-19 and vaccination behavior, that could facilitate or hinder vaccine uptake. Contact information for family caregivers was obtained from five different centers and associations throughout the Italian territory. Data were collected from 179 respondents during July-September 2021 using a cross-sectional web-based survey design. More than 75% of the respondents indicated that had been vaccinated against COVID-19 and reported receiving vaccine information mainly from print or electronic newspapers (86%), followed by TV (81%) and families (64.2%). In multivariable logistic regression analyses, worries about unforeseen future effects was significantly related to COVID-19 vaccine uptake, indicating that family caregivers concerned about potential side effects of vaccines were less likely to have been vaccinated against COVID-19 (OR = 0.60, CI = 0.40-0.89). Openness to experience was also related to COVID-19 vaccine uptake, with family caregivers higher on this trait being less likely to have been vaccinated against COVID-19 (OR = 0.83, CI = 0.71-0.98). Implications for targeting of vaccine-related messages are discussed.

The Value of Including People with Dementia in the Co-Design of Personalized eHealth Technologies.

BACKGROUND: In this article, we discuss the benefits and implications of the shift from a user-centered to a co-creation approach in the processes of designing and developing eHealth and mHealth solutions for people with dementia. To this end, we illustrate the case study of a participatory design experience, implemented at the REMIND EU Project, Connected Health Summer School, which took place in June 2018 at Artimino (Italy). OBJECTIVES: The initiative was intended to reach two objectives: (1) help researchers specializing in a variety of fields (engineering, computing, psychology, nursing, and dementia care) develop a deeper understanding of how individuals living with dementia expect to be supported and/or enabled by eHealth and mHealth technologies and (2) prevent the tendency to focus on the impairments that characterize dementia at the expense of seeing the individual living with this condition as a whole person, striving to maintain a life that is as fulfilling as possible. METHOD: The Connected Health Summer School is an annual multidisciplinary training program, organized in collaboration with the REMIND EU Project, designed for early-stage researchers interested in the development of new eHealth and mHealth services and apps. For the 2018 program edition, REMIND end user partner Novilunio invited two members of the Irish Dementia Working Group to deliver keynote lectures, and engage in participatory workshops to facilitate the creation of digital technology applications based on their specific real-life needs, values, and expectations. Their involvement as participants and experts was aimed to give a clear message to early-stage researchers: a true personalized approach to eHealth and mHealth solutions can only emerge from a highly reflective and immersive appreciation of people's subjective accounts of their lived experience. RESULTS/CONCLUSIONS: The Connected Health Summer School early-stage researchers developed 6 app mock-ups based on their discussions and co-creation activities with the two experts with dementia. The reflections on this experience highlight a number of important issues that demand consideration when undertaking eHealth and mHealth research, co-design, and development with and for people with dementia. The evolution in design research from a user-centered approach to co-designing should pave the way to the development of technologies that neither disempower nor reinforce stigma, but instead provide a reliable support to living a life as active and meaningful as possible after a diagnosis of dementia. To this end, the motto of the peak global organization of people with dementia, Dementia Alliance International, says it all: "See the person and not the dementia."