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 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.

BACKGROUND: Due to the complexity of the provision of care for people with dementia, pain assessment and management is still considered to be lacking. An optimal way to support frontline staff in providing pain assessment and management for people with dementia living in nursing homes has not yet been identified. The success of supporting interventions seems dependent on contextual factors in the nursing homes. This study, therefore, analyzes the feasibility of a nurse-led training intervention, using repeated on-site case studies, in modifying pain intensity and frequency in people with dementia.
METHODS: Using a quasi-experimental design, we undertook a multi-center study of nurse-led training in pain management, with subsequent on-site case studies. Healthcare workers from 3 nursing homes assessed pain in 164 residents with dementia over 147 days. We used mixed-effect growth curve models with spline regression to analyze the data.
RESULTS: We found that on-site case studies support frontline staff with pain management and assessment. Repeated reflection in case studies led to significantly longer pain free intervals (from 4.7 at baseline to 37.1 days at second follow-up) and decreased frequency of pain events (OR 0.54 at first follow-up and 0.43 at second follow-up). However no trends regarding pain intensity could be found. Therefore, on-site case studies may be valuable for improving pain frequency and pain-free intervals over time.
CONCLUSIONS: This feasibility study shows the potential of on-site support for frontline nursing home staff. On-site case studies may also affect health outcomes in people with dementia. However, the complexity of dementia care necessitates the management of a broader range of needs.
BACKGROUND: The study was retrospectively registered on the tenth of January 2017 with the German registry of clinical trials (DRKS00009726).

Despite the growing awareness of poor health-related quality of life (HRQoL) in family caregivers of people with dementia (PWD), their relationship has rarely been explored with population-based samples. The current cross-sectional study aimed to determine the detrimental impact of informal dementia caregiving on HRQoL by using nationally representative population-based samples from the Korean Community Health Survey. Demographics, socioeconomic, and physical and mental health-related characteristics as well as HRQoL measured by the Korean version of the European Quality of Life Questionnaire Five Dimension (EQ-5D) were compared between 9563 family caregivers of PWD and 186,165 noncaregivers. Caregivers had lower index scores and higher frequency of some/extreme problems in all five dimensions of the EQ-5D compared with noncaregivers. Logistic regression adjusting for potential confounding factors found that caregivers had a higher frequency of poor HRQoL (lowest quartile of EQ-5D index) than noncaregivers (adjusted odds ratio [95% confidence interval] = 1.46 [1.39-1.53]). Compared to noncaregivers, caregivers had a higher frequency of some/extreme problems in each dimension of the EQ-5D: mobility (1.30 [1.21-1.40]), self-care (1.62 [1.46-1.80]), usual activity (1.39 [1.29-1.51]), pain/discomfort (1.37 [1.31-1.45]), and anxiety/depression (1.51 [1.42-1.61]). A one-to-one propensity score matching analysis confirmed that poor HRQoL was more frequently found in caregivers compared to noncaregivers (1.38 [1.29-1.48]). Our results indicated that family caregivers of PWD are significantly associated with overall poor HRQoL, underscoring the detrimental impact of informal dementia caregiving on HRQoL. Given the high frequency of poor HRQoL in dementia caregivers and the important recognition of its serious consequences on physical and mental health, clinicians should take into consideration efficient interventions to improve health and HRQoL for family caregivers of PWD.

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.

OBJECTIVE: The aim of this study was to explore the lived experiences of a rural dwelling person living with dementia and his children. Using a phenomenological case study methodology, it aims to explore the health-related and personal dilemmas faced by multiple family members who provide care to a person living with dementia in a rural area in Henan, China. The study also investigates the barriers to quality dementia care in this kind of setting in order to inform the relevant stakeholders.
METHODS: A phenomenological case study was designed for this study. The case that formed the focus of the research included a person living with dementia and multiple family members. Semi-structured in-depth interviews were undertaken with the five family members of the person living with dementia. Smith\'s interpretative phenomenological analysis was used for data analysis.
RESULTS: Three major themes were identified: (1) Dementia as a normal ageing process or a bad disease; (2) Commitment to and challenges of family caring and (3) Life in rural areas.
CONCLUSIONS: With the development of China\'s economy and its social-cultural changes, traditional home-based care provision in rural areas of China is being challenged for people with dementia who have multiple children. It suggests that there needs to be an exploration into providing more appropriate care for people with dementia living in rural settings. It also suggests that more support is required to increase dementia awareness and to improve the quality of life of people with dementia and their families in rural China.

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.

Older people with dementia are particularly at risk of COVID-19; however, relatively little is known about the indirect impact of the pandemic on the lives of those living with, and/or caring for someone with, dementia. The aim of this study was to investigate the experiences of people with dementia and informal carers during the closure of available social and medical services in Poland during the COVID-19 pandemic. A qualitative thematic analysis of semi-structured interviews with people with dementia (n = 5) and informal carers (n = 21) was performed between June and August 2020 after the first wave of COVID-19 in Poland. Three overarching themes were identified: (1) care re-organization; (2) psychological responses; (3) emerging needs. The factor underlying all these elements was reliance on other people. Social support and engagement are vital to the ongoing health and well-being of people living with dementia and their informal carers. Services need to be strengthened to provide ongoing provision to those living with dementia to reach pre-pandemic levels, if not better. Within the post-pandemic environment, people with dementia and their informal carers need reassurance that they can rely on external institutional and social support able to meet their needs.

There are about 9.5 million people with dementia in China. Up to 99% of them are cared for by their family caregivers. Family caregivers are confronted with considerable difficulties and challenges while providing care. They often experience high levels of emotional, physical, financial, and social burdens. Caregivers in rural areas experience an even higher level of burden compared to their counterparts in urban areas due to fewer health resources for dementia care. However, so far, no intervention study has been conducted to support family caregivers in rural areas of China. The aim of this proposed study is to adapt and evaluate an evidence-based and culturally-tailored individualized telephone-based care support (ITBCS) program for family caregivers of people with dementia in rural China.
A cluster randomized controlled trial (RCT) will be conducted to evaluate the effectiveness of the ITBCS compared with usual care for Chinese rural family caregivers of people with dementia. A total sample of 168 rural family caregivers will be recruited. The intervention components consist of a 3-month intensive telephone-based care support intervention followed by telephone-based follow-up consultations for 6 months. The control group will receive usual care services available for them. Outcome measures include carers\' subjective burden, depressive symptoms, health-related quality of life, social support, caregiving self-efficacy, and care recipients\' difficult behaviours and competence in activities of daily living at 3, 9 and 15 months after baseline. The potential cost-effectiveness of the ITBCS compared with usual care will be assessed as well.
If effective, the ITBCS program can be adapted and used in rural areas of China as a blueprint to improve the quality of home-based care for people with dementia. Findings from the present study are significant for developing evidence-based dementia care policy in rural China.
Chinese Clinical Trial Registry, ChiCTR2000038821 , Registered 4 April 2020, http://www.chictr.org.cn/showprojen.aspx?proj=62268 .