UNASSIGNED: With a decreasing workforce of carers and a transition from care homes to home care, people with dementia (PwD) increasingly rely on informal caregivers (ICs) and assistive technologies (ATs). There is growing evidence that ATs in the home environment can reduce workload for formal carers (FCs) and ICs, reduce care costs, and can have a positive influence on quality of life (QoL) for PwD and their caregivers. In practice, using multiple ATs still often implies using different separate point solutions and applications. However, the integral, combined use of the data generated using various applications can potentially enhance the insight into the health and wellbeing status of PwD and can provide decision support for carers. The purpose of the current study was to evaluate the use of a DSS that integrated multiple ATs into one dashboard through a small-scale field study.
UNASSIGNED: The current study presents the formative evaluation of a Decision Support System (DSS) connected to multiple ATs. This DSS has been developed by means of co-creation during an international project. The DSS provides an insight into the physical and cognitive status of a PwD, as well as an insight into sleep activity and general wellbeing. Semi-structured interview sessions were held in three countries (Netherlands, Italy, and Taiwan) with 41 participants to gain insight into the experiences of formal and informal carers and PwD with both the ATs and the DSS Alpha prototype dashboard.
UNASSIGNED: The results showed that participants using the DSS were satisfied and perceived added value and a fit with certain care demands from the PwD. In general, ICs and FCs have limited insight into the status of PwD living independently at home, and in these moments, the DSS dashboard and AT bundle can provide valuable insights. Participants experienced the DSS dashboard as well-organized and easy to navigate. The accuracy of the data displayed in the dashboard is important, the context, and (perceived) privacy issues should be tackled according to all users. Furthermore, based in the insight gained during the evaluation a set of design improvements was composed which can be used to further improve the DSS for the Beta evaluation.
UNASSIGNED: The current paper evaluates a possible solution for excess AT usage and how the use of a DSS which integrated multiple AT into one single technology could support caregivers in providing care for PwD. The formative evaluation scrutinized the integration of the developed DSS and the composed bundle of ATs across diverse cultural contexts. Insights from multi-center observations shed light on user experiences, encompassing overall usability, navigational efficacy, and attitudes toward the system. FCs and ICs expressed positivity toward the DSS dashboard\'s design and functionalities, highlighting its utility in remote monitoring, tracking changes in the person\'s abilities, and managing urgent situations. There is a need for personalized solutions and the findings contribute to a nuanced understanding of DSS and AT integration, providing insights for future developments and research in the field of DSS for the care of PwD.

UNASSIGNED: The healthcare needs of People living with Dementia (PlwD) (such as Alzheimer\'s disease) are often unmet. Information about the needs of community-dwelling PlwD and their association with sociodemographic and clinical characteristics is needed to fill the knowledge gap regarding factors influencing unmet needs among PlwD and to conduct a comprehensive needs assessment to develop tailored interventions.
UNASSIGNED: To describe sociodemographic and clinical characteristics of the InDePendent study population with particular reference to determinants of unmet needs.
UNASSIGNED: We analyzed baseline data of the multi-centre cluster-randomized controlled trial (InDePendent) using descriptive statistics to describe patients\' sociodemographic and clinical characteristics and Poisson regression models to predict unmet needs, separated by sex. Data were collected personally via face-to-face interviews.
UNASSIGNED: Most of the n = 417 participating PlwD were mild to moderately cognitively impaired, were not depressed, had an average of 10.8 diagnoses, took 6.7 medications, and had, on average, 2.4 unmet needs (62% of PlwD had at least one unmet need) measured by the Camberwell Assessment of Need for the Elderly (CANE). Low social support, a high body-mass-index, a lower education, functional impairment, and worse health status were associated with more unmet needs, regardless of sex. In women, higher unmet needs were associated with more depressive symptoms, a poor financial situation, living alone and not being recently treated by a general practitioner. In males, unmet needs increased with the number of medications taken.
UNASSIGNED: PlwD had a broad array of unmet healthcare needs, indicating primary healthcare provision improvement potentials. The results underscore the significance of early assessment of patient\'s clinical characteristics and unmet needs as a basis for individualized gender-sensible intervention strategies.∥ClinicalTrials.gov Identifier: NCT04741932, Registered on February 5, 2021.

BACKGROUND: People with dementia and their caregivers are prone to suicidal behaviors due to difficulty adjusting to their initial caregiving role and due to emotional disturbances resulting from deterioration of functioning. The present systematic review (1) explored the prevalence of and risk factors for suicidal behavior and (2) assessed the similarities and differences in the prevalence and risk factors for suicidal behavior between people with dementia and their caregivers.
METHODS: A comprehensive literature search for research articles published between 1950 and 2023 was carried out using major databases, such as Google Scholar, Web of Science, PubMed, Scopus, PsycINFO, EMBASE, the Cochrane Library, and Medline.
RESULTS: A total of 40 research articles were selected for review. A total of 12 research articles revealed that the prevalence of suicidal behavior among caregivers ranged from 4.7% to 26%. However, the risk of suicidal behavior among people with dementia was inconsistent, as only 17 out of 28 selected studies reported the risk of suicidal behavior among people with dementia. The risk factors associated with suicidal behavior among caregivers of people with dementia could be both self-related and care receiver-related factors, whereas risk factors in people with dementia were self-related factors. Notably, greater cognitive decline, which impairs individuals\' ability to carry out complex acts and planning, may lower their suicidal risk. Finally, assessment of the risk of bias indicated that 95% of the selected studies had unclear risk.
CONCLUSIONS: Self-related and care receiver-related factors should be assessed among caregivers of people with dementia to evaluate the risk of suicidal behavior. In addition, we recommend evaluating suicidal risk in people with dementia in the early phase of dementia when cognitive decline is less severe. However, as the majority of the selected studies had unclear risk of bias, future studies with improved methodologies are warranted to confirm our study findings.

Dementia cafés for people with dementia and their caregivers are promoted in national dementia policies. The effect of dementia cafés on people with dementia has been reported through narratives of caregivers who participated the dementia cafés. However, evidence derived from the data, which included only people with dementia, is sparse. The aim of this study is to analyze the narratives of people with dementia in peer support meetings in Tokyo where only people with dementia participate, i.e., caregivers were not present.
People with dementia and older people with subjective cognitive impairment were recruited in our community-based participatory research centre. Based on the qualitative descriptive approach, we conducted a thematic analysis of the field notes, which was made through ethnographical observation of the meetings.
Twenty-five meetings were held from November 2018 to March 2020. The cumulative total number of participants was 196. First, the symptomatic problems related to living with dementia were mentioned, which were collectively named under the overarching category of \'Experience of living with dementia.\' Second, questions and solutions to the various symptoms were discussed, which were named the \'Quest of Symptoms.\' Third, we noted the narrative that reflected on daily life, feelings, and the life that one has led, which were named \'Life story.\' Fourth, we noted narratives of how symptoms have improved and their world has expanded, which were named \'Hope.\' Fifth and most importantly, narratives about compassion for people with dementia in the past and future, as well as for people of the same generation, were discussed, which were named \'Compassion.\'
The lived experiences of people with dementia were revealed. Participants noted they were not just being cared for but exchanging information and exploring the symptoms; in other words, they were resilient. Furthermore, more positive aspects concerning living with dementia were discussed, such as \'Hope\' and \'Compassion.\' Further research concerning the discourse of people around the participants is necessary to evaluate the situation from multiple perspectives.

BACKGROUND: Web-based tools for people with dementia and their family caregivers have considerably increased over the years and offer promising solutions to several unmet needs such as supporting self-care in daily life, facilitating treatment delivery, or ensuring their ability to communicate. The use of web-based tools in the field of advance care planning (ACP) for people with dementia and their family caregivers has yet to be explored and requires careful consideration, given the sensitive topic and the specific needs of people with dementia and their families.
OBJECTIVE: This paper reports the protocol for a study aiming to develop and simultaneously test the usability of an ACP website designed for, and with, people with dementia and their families.
METHODS: The development of the website is based on a process map for the development of web-based decision support interventions and on the Medical Research Council framework for complex intervention development and evaluation. Additionally, we apply a user-centered approach in combination with patient and public involvement (PPI) throughout the development process. We describe our iterative development approach to the website. Participants and a PPI group give feedback on 4 prototypes of the ACP website. For each iteration, we aim to include 12 participants (3 people with dementia, 3 family caregivers, and 3 dyads) in usability testing. In the first 3 iterations, usability testing includes (1) a think-aloud exercise, (2) researcher observations, and (3) the System Usability Scale questionnaire. The last iteration of usability testing is composed of a semistructured interview assessing the layout, content, face validity, and readability of the website. Qualitative data from the think-aloud exercises and interviews are analyzed using thematic analysis. Mean scores are calculated for the System Usability Scale questionnaire.
RESULTS: This study received approval from the Ethical Review Board of Brussels University Hospital of the Vrije Universiteit Brussel. Recruitment began in October 2021. The target date for paper submission of the results of the development and usability testing will be in 2023.
CONCLUSIONS: The methods in this protocol describe a feasible and inclusive approach to the development of an ACP website together with people with dementia, their family caregivers, and other stakeholders. We provide a clear overview of how to combine PPI input and user-centered development methods, leading to a transparent and reliable development process. This protocol might stimulate the active participation of people with dementia, their caregivers, and regional stakeholders in future studies on web-based technologies. The results of this study will be used to refine the design and create a relevant and user-friendly ACP website that is ready to be tested in a larger evaluation study.
UNASSIGNED: DERR1-10.2196/46935.

BACKGROUND: E-learning has shown to be an effective intervention in helping informal caregivers of people living with dementia. It has the potential to reach people living in remote areas, increasing service coverage. As a response to the demographic context in Spain associated with a higher percentage of ageing, depopulation, and the complexities of health service delivery in rural areas, this paper describes the cultural adaptation and co-design of the iSupport online training and support programme for Castilla y León, Spain, as a potential e-health intervention to mitigate these constraints.
METHODS: The translation and cultural adaptation were performed following the WHO guidelines, with some adaptation due to the cultural context of Spain. Three focus groups were conducted with informal caregivers, health professionals, and a group of experts on cognitive impairment and dementia. The co-design process was performed as a Patient and Public Involvement activity with three groups consisting of people living with dementia, informal caregivers, rural population and experts on technology and dementia.
RESULTS: A total of 435 suggestions were proposed for adaptation associated with erroneous terminology, rewording text/writing, grammatical or punctuation marks errors, and repeated information or need for additional content. Several recommendations were exposed during the co-design process: preference for interactive material such as videos or images, a forum to receive feedback from health care professionals and to leave satisfaction comments, availability in multiple platforms (e.g., tablet, laptop, mobile), slide format for information presentation, and availability to edit letter size and background colours.
CONCLUSIONS: A culturally adapted version of the iSupport was developed for Castilla y León, Spain. The need for modification of words and expressions, information links to local resources websites, adjustments of characters\' names and caregivers\' scenarios, and additional content to some sections were recommended. Suggestions for the design should be taken into account for further adapted versions and platform developments.

BACKGROUND: People living with dementia often exhibit behavioural and psychological symptoms of dementia that can put their and others\' safety at risk. Existing video surveillance systems in long-term care facilities can be used to monitor such behaviours of risk to alert the staff to prevent potential injuries or death in some cases. However, these behaviours of risk events are heterogeneous and infrequent in comparison to normal events. Moreover, analysing raw videos can also raise privacy concerns.
OBJECTIVE: In this paper, we present two novel privacy-protecting video-based anomaly detection approaches to detect behaviours of risks in people with dementia.
METHODS: We either extracted body pose information as skeletons or used semantic segmentation masks to replace multiple humans in the scene with their semantic boundaries. Our work differs from most existing approaches for video anomaly detection that focus on appearance-based features, which can put the privacy of a person at risk and is also susceptible to pixel-based noise, including illumination and viewing direction. We used anonymized videos of normal activities to train customized spatio-temporal convolutional autoencoders and identify behaviours of risk as anomalies.
RESULTS: We showed our results on a real-world study conducted in a dementia care unit with patients with dementia, containing approximately 21 h of normal activities data for training and 9 h of data containing normal and behaviours of risk events for testing. We compared our approaches with the original RGB videos and obtained a similar area under the receiver operating characteristic curve performance of 0.807 for the skeleton-based approach and 0.823 for the segmentation mask-based approach.
CONCLUSIONS: This is one of the first studies to incorporate privacy for the detection of behaviours of risks in people with dementia. Our research opens up new avenues to reduce injuries in long-term care homes, improve the quality of life of residents, and design privacy-aware approaches for people living in the community.

The number of community-dwelling people with dementia (PwD) is rising, and the role of their relatives is crucial in addressing and mitigating the implications of dementia on health care systems and on society. We developed a new conceptual framework to promote the collaboration of the community in supporting relatives who are caring for a PwD as well as a range of stakeholders in embracing dementia. A qualitatively driven, multi-method study divided into three phases was performed from 2019 to 2021. A qualitative descriptive study, a mixed-method systematic review and three consensus workshops were conducted, and their results were triangulated. The final version of the Community Collaboration Concept Framework is composed of three main domains based upon seven components: (1) embracing dementia; (2) creating empowerment and a sense of community; (3) collaborating through cocreation and design thinking. The new framework is based on the literature, the synthesis of empirical data and the consensus of a panel of international experts, supporting the global goal of improving community inclusiveness and collaboration. Further studies are needed to confirm its validity, how it should be implemented in practice in various settings and to propose improvements when designing projects based upon it.

UNASSIGNED: Although caring relatives of people with dementia are a mainstay of many care systems, the availability of support services for them within the municipal community shows deficiencies. Adopting the Theoretical Domains Framework (TDF) this study aims to investigate 1) which of the TDF domains adapted to gerontology show up in public dialogue, and 2) the results that public dialogues produce in terms of support services for caring relatives.
UNASSIGNED: The data consists of town hall meetings and focus groups from 14 municipal communities in Germany. Participants were caring relatives and stakeholders of the communities. A qualitative content analysis was conducted, focusing on the assessment of three TDF domains, namely knowledge, goals, and sociopolitical context as well as outcomes of care optimisation.
UNASSIGNED: With regard to domain knowledge, it was evident that in every community there were actors aware of the situation and relevance of carers and their relatives. Only some actors mentioned goals for optimising the care of the target group. The sociopolitical context is often addressed through statements about incomplete requirements.
UNASSIGNED: Overall, a relation between the discussion about the domains in public dialogues and changes in supporting carers of people with dementia can be assumed. The results indicate that an increased discussion about the domains within town hall meetings influences the actors and their statements with regard to the improvement of support services for caring relatives of people with dementia. Since the domains were not developed exclusively for the outlined context, this approach can also be applied to other areas of care.
UNASSIGNED: The online version contains supplementary material available at 10.1007/s10389-022-01744-w.

Previous studies have documented cognitive impairments, psychological stress, and depressive symptoms in family caregivers of people with dementia (PWD), which could be attributed to their sleep disturbances. Notwithstanding the increasing recognition of poor sleep quality and sleep disturbances in family caregivers of PWD, their association has not been tested yet using population-representative samples. We conducted a retrospective, cross-sectional study using population-based data from the 2018 Korean Community Health Survey. Sociodemographic, mental health-related, and physical health-related variables as well as sleep quality evaluated by the Pittsburgh Sleep Quality Index (PSQI) were compared between 2537 cohabitating caregivers of PWD, 8864 noncohabitating caregivers of PWD, and 190,278 non-caregivers. Two sets of multivariable logistic regressions were conducted to examine the associations between dementia caregiving and poor sleep quality in cohabitating and noncohabitating caregivers versus noncaregivers. Both cohabitating and noncohabitating caregivers had higher global PSQI scores and higher prevalence of poor sleep quality (PSQI score > 5) than did noncaregivers. Multivariable logistic regressions adjusted for potential confounders revealed that cohabitating caregivers (odds ratio (OR) 1.26, 95% confidence interval (CI) 1.15-1.38) and noncohabitating caregivers (OR 1.15, CI 1.10-1.21) were significantly associated with poor sleep quality. Our results showed that both cohabitating and noncohabitating caregivers of PWD experienced overall poorer sleep quality compared to noncaregivers, indicating the deleterious effect of dementia caregiving on sleep quality, regardless of living arrangements. Given the high prevalence of poor sleep quality in family caregivers of PWD and the increasing awareness of the serious health consequences of poor-quality sleep, physicians should consider active sleep interventions to promote health and wellbeing not only for the dementia patients but also for family caregivers.