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.

OBJECTIVE: To provide insight into the health and social care costs during the disease trajectory in persons with dementia and the impact of institutionalization and death on healthcare costs compared with matched persons without dementia.
METHODS: Electronic health record data from family physicians were linked with national administrative databases to estimate costs of primary care, medication, secondary care, mental care, home care and institutional care for people with dementia and matched persons from the year before the recorded dementia diagnosis until death or a maximum of 4 years after the diagnosis.
RESULTS: Total mean health and social care costs among persons with dementia increased substantially during the disease trajectory, mainly due to institutional care costs. For people who remained living in the community, mean health and social care costs are higher for people with dementia than for those without dementia, while for those who are admitted to a long-term care facility, mean health and social care costs are higher for people without dementia than for those with dementia.
CONCLUSIONS: The steep rise in health and social care costs across the dementia care trajectory is mainly due to increasing costs for institutional care. For those remaining in the community, home care costs and hospital care costs were the main cost drivers. Future research should adopt a societal perspective to investigate the influence of including social costs.

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.

OBJECTIVE: To describe the lived experiences of family caregivers of individuals with dementia during the coronavirus disease (COVID-19) outbreak in China.
METHODS: This study used a descriptive phenomenological research method.
METHODS: Between May and September 2021, semi-structured interviews were conducted with 22 family caregivers of people with dementia. Colaizzi\'s method was used for manual analysis.
RESULTS: Qualitative data revealed an overarching experience of finding \'There is always good fortune in misfortune to encourage us in coping with difficulties\'. Three themes emerged: family reactions to the COVID-19 outbreak, feeling supported by multiple resources performing respective functions and resilient adaptation to new situations.
CONCLUSIONS: During the COVID-19 outbreak, family caregivers of people living with dementia in China looked for positive aspects among difficulties and experienced corresponding reactions, social support resources and resilient adapted coping styles.
UNASSIGNED: Nurses in China and other countries facing similar pandemic characteristics, cultures or economic development levels, can guide family caregivers to look at family hardships from a positive perspective, develop interventions to rapidly respond to families\' reactions after a disaster and help them identify social support resources and form adapted coping styles.
CONCLUSIONS: We identified the resilience and the positive experiences of Chinese family caregivers of individuals with dementia during the COVID-19 outbreak. The results can inform countries with similar cultures and economic levels, offering measures to support their adaptation to pandemics.
UNASSIGNED: This study followed the COREQ guidelines.
UNASSIGNED: Family caregivers of people with dementia who met the inclusion criteria and who were interested in sharing their understanding of their experiences, participated in the study.

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.

OBJECTIVE: This study aimed to investigate the mediating effects of quality of the caregiving relationship and other carer and person with dementia variables in predicting carer resilience over time.
METHODS: Carers of people with mild and moderate dementia in community settings completed baseline (n = 176 dyads) and six-month follow-up assessments (n = 139 dyads). Causal mediation analysis was conducted using Pearson Correlation and Structural Equation Modelling (SEM) to examine longitudinal predictors of carer resilience, and the effect of several mediating person with dementia, and carer factors on carer resilience over time.
RESULTS: At 6-month follow-up, higher levels of carer resilience were longitudinally correlated with higher ratings of perceived relationship quality by people with dementia (r = 0.53 p ≤ 0.01), and lower levels of emotional distress symptoms by carer\'s (r = -0.59 p ≤ 0.01). Mediation analyses showed that people with dementia perspectives of the quality of the caregiving relationship mediated the relationship between carer distress specific to neuropsychiatric symptoms (β = -0.32, p ≤ 0.001) and carer resilience (β = 0.53, p ≤ 0.001) over time. The final SEM provided a good fit for the data (X 2  = 0.12, p = 0.72, CFI = 1.00, NFI = 0.99, and Root Mean Square Error of Approximation = 0.001).
CONCLUSIONS: Higher ratings of perceived relationship quality by people with dementia, and lower levels of carer emotional distress predicted higher carer resilience at follow-up. People with dementia perspectives of the quality of the caregiving relationship mediated the relationship between carer distress specific to neuropsychiatric symptoms and carer resilience over time. Our findings indicate that interventions aimed at strengthening the caregiving relationship might have a protective long-term effect for carer resilience in dementia caregiving.

UNASSIGNED: This study explores the usability, usefulness and user experience of the Forward with Dementia website for people with dementia and family carers, and identifies strategies to improve web design for this population.
UNASSIGNED: The website was iteratively user-tested by 12 participants (five people with dementia, seven carers) using the Zoom platform. Data collection involved observations, semi-structured interviews and questionnaires. Integrative mixed-method data analysis was used, informed by inductive thematic qualitative analysis.
UNASSIGNED: Users of Version 1 of the website experienced web functionality, navigation and legibility issues. Strategies for desirable web design were identified as simplifying functions, streamlining navigation and decluttering page layouts. Implementation of strategies produced improvements in usability, user experience and usefulness in Version 2, with mean System Usability Scale scores improving from 15 to 84, and mean task completion improving from 55% to 89%. The user journey for people with dementia and carers overlapped, but each group had their own unique needs in the context of web design.
UNASSIGNED: The interplay between a website\'s content, functionality, navigation and legibility can profoundly influence user perceptions of a website. Dementia-related websites play an important role in informing audiences of management strategies, service availability and planning for the progression of dementia. Findings of this study may assist in guiding future web development targeting this population.
People with cognitive impairment can provide useful feedback on design and accessibility of websites, and their input should be obtained when developing digital applications for this group.This paper provides practical suggestions for website design features to improve function, legibility and navigation of websites for older people and people living with dementia.

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.