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Background: Recognised as essential for high-quality dementia service, person-centred care aims to understand and respect the unique needs of each individual. Self-experience practices may offer caregivers an opportunity to acquire knowledge, empathy, and skills related to person-centred care, especially through recreating experiences similar to dementia. Given the need to enhance the understanding of self-experience practices in dementia care, a more comprehensive investigation of these training interventions for (future) caregivers is needed., Methods: We conducted a scoping review to map the evidence on the use of self-experience practices in dementia training. We systematically searched Cochrane Library, MEDLINE via PubMed, CINAHL, and Web of Science. We also searched for grey literature, as well as registry entries, and conducted backward citation tracking of included reviews. We analysed data on intervention characteristics, factors influencing the implementation, and learning outcomes based on Kirkpatrick's model., Results: We included 44 reports across 30 intervention programmes. The majority of reports (91%) were published from 2016 onwards, with 32% originating from the USA and 25% from the UK. We identified passive, interactive, immersive, and multicomponent self-experience interventions in dementia education and training. Learning outcomes based on Kirkpatrick's model were fairly distributed across all identified modalities. Both consumers and providers emphasised aspects related to the development and implementation of practices, particularly organisational-related considerations such as temporal and spatial planning of trainings., Conclusions: Our review highlights diverse interventions incorporating self-experience practices, with an increasing role for technological tools. While self-experience interventions engage participants, the impact on individuals with dementia and organisational levels remain largely unreported. Our overview, informed by current literature, underscores unique considerations and challenges associated with dementia-related self-experience practices. Implementing and evaluating complex training interventions using self-experience practices should consider ethical aspects., Trial Registration: Registry: Registered within the Open Science Framework (available at https://osf.io/fycxa/)., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Wittmann et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Background: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these., Methods: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face-to-face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non-profit organisations., Results: Forty-nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single-point-of-contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location., Conclusions: These findings provide a first insight on dementia inequalities across Europe, generate cross-country learnings on how to address these inequalities in dementia, and can underpin further solution-focused research that informs policy and key decision makers to implement changes., (© 2024 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Alzheimer's disease (AD) presents a growing global challenge, with an increasing prevalence and significant impact on individuals and public health. Effective pharmacological treatments directly impacting the disease are still lacking, highlighting the importance of programs and interventions aimed at improving the wellbeing of those affected. The present feasibility study aimed to evaluate the effectiveness and feasibility of the Alzheimer's patients Interaction through Digital and Arts (AIDA) program. AIDA's main objective is to enhance perceived wellbeing and quality of life of people with AD and their caregivers through a series of structured activities through museum- and art-based activities over five sessions. Pre- and post-program evaluations were conducted using Visual Analog Scales (VASs) to measure various dimensions of perceived wellbeing such as confidence, happiness, interest, optimism, and wellness. Results showed significant improvements in all considered dimensions for people with AD following AIDA activities, highlighting its potential to enhance overall wellbeing. Caregivers also reported increased perceived wellness post-program, demonstrating some positive effects also in healthy participants. The feasibility of AIDA was supported by positive feedback and engagement of participants. Overall, the AIDA program offers a non-intrusive and engaging approach to improve the perceived wellbeing of people with AD and caregivers while facilitating meaningful experiences (e.g., silence, sharing etc.) in cultural settings., (Copyright © 2024 Elsevier B.V. All rights are reserved, including those for text and data mining, AI training, and similar technologies.)

Objectives: This exploratory study aimed at investigating profiles of care needs in people with mild to moderate dementia and examined variables associated with these profiles., Design: A longitudinal international cohort study., Setting and Participants: The baseline data of 447 community-dwelling dyads of people with dementia and their caregivers from the Access to Timely Formal Care (Actifcare) Study were included for analysis., Methods: A latent class analysis was applied to identify profiles of needs, measured with the Camberwell Assessment of Need for the Elderly as rated by the caregiver. We examined sociodemographic (eg, relative stress scale) and clinical characteristics (eg, neuropsychiatric inventory) associated with these profiles., Results: Four distinct need profiles were identified through latent class analysis. These comprised a "no need" profile (41% of the sample), a "met psychological needs" profile (25%), a "met social needs" profile (19%), and an "unmet social needs" profile (15%). A larger impact of caregiving on the caregiver's life as indicated by a higher relative stress scale score was associated with the "unmet social needs" profile., Conclusions and Implications: In this large European sample, there was a subgroup of persons with dementia with high "unmet social needs" whose caregivers simultaneously perceived high stress in their caregiving tasks. Identification of these profiles may help provision of appropriate support for these people., (Copyright © 2020 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.)

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services. Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use. Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes. Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

Objectives: Previously developed dementia caregiver profiles defined by caregiver age and burden, have been associated with caregiver quality of life, depression and perseverance time. The current aim was to investigate whether these caregiver profiles could predict subsequent service use. In addition, non-personal (e.g. meals on wheels) and supportive services (e.g. Alzheimer café) in early dementia were investigated as predictors. Methods: A total of 451 dyads of people with dementia and their informal caregivers from eight European countries were followed for one year. People were included if they did not use formal (personal) care but were expected to do so within 1 year. Logistic regression analyses were used with four clusters of service use as dependent variables (home social care, home personal care, day care and admission). The independent variables were caregiver profiles, and non-personal and supportive services at baseline. Results: Caregiver profiles were significant predictors of service use; those experiencing high strain were more likely to use formal care. The use of low-intensity, less intrusive services at baseline significantly predicted the use of home personal care and admission at follow-up. The use of day care at follow-up was predicted by the baseline use of supportive services. Conclusion: Caregiver profiles are valuable predictors for service use: this knowledge can aid professionals in ensuring optimal access to services, which is important for maintaining independence at home. In addition, the use of supportive and less intrusive, non-personal services in the early stages of dementia is to be advised.

Objective: Quality of life of people with dementia and their family carers is strongly influenced by interpersonal issues and personal resources. In this context, relationship quality (RQ) and sense of coherence (SOC) potentially protect and promote health. We aimed to identify what influences RQ in dyads of people with dementia and their carers and to examine differences in their perspectives., Methods: Cross-sectional data were used from the Actifcare cohort study of 451 community-dwelling people with dementia and their primary carers in eight European countries. Comprehensive assessments included the Positive Affect Index (RQ) and the Orientation to Life Questionnaire (SOC)., Results: Regression analyses revealed that RQ as perceived by people with dementia was associated with carer education, stress, and spouse caregiving. RQ as perceived by carers was associated with carer stress, depression, being a spouse, social support, reported neuropsychiatric symptoms of dementia, and carer SOC. Neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad. The only factor associated with both individual RQ ratings and discrepancies was carer stress (negative feelings subscore). No significant differences in the overall perception of RQ were evident between spouses and adult children carers, but RQ determinants differed between the two., Conclusions: In this European sample, carer SOC was associated with carer-reported RQ. RQ determinants differed according to the perspective considered (person with dementia or carer) and carer subgroup. A deeper understanding of RQ and its determinants will help to tailor interventions that address these distinct perspectives and potentially improve dementia outcomes., (© 2019 John Wiley & Sons, Ltd.)

Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL)., Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses., Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both., Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support   QOL. The perspectives of people with dementia are informative when identifying needs.

Background: People with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals., Method: Focus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports., Results: Overall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives., Conclusion: Further investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.

Objectives: To identify caregiver profiles of persons with mild to moderate dementia and to investigate differences between identified caregiver profiles, using baseline data of the international prospective cohort study Actifcare., Methods: A latent class analysis was used to discover different caregiver profiles based on disease related characteristics of 453 persons with dementia and their 453 informal caregivers. These profiles were compared with regard to quality of life (CarerQoL score), depressive symptoms (HADS-D score) and perseverance time., Results: A 5-class model was identified, with the best Bayesian Information Criterion value, significant likelihood ratio test (p < 0.001), high entropy score (0.88) and substantive interpretability. The classes could be differentiated on two axes: (i) caregivers' age, relationship with persons with dementia, severity of dementia, and (ii) tendency towards stress and difficulty adapting to stress. Classes showed significant differences with all dependent variables, and were labelled 'older low strain', 'older intermediate strain', 'older high strain', 'younger low strain' and 'younger high strain'., Conclusion: Differences exist between types of caregivers that explain variability in quality of life, depressive symptoms and perseverance time. Our findings may give direction for tailored interventions for caregivers of persons with dementia, which may improve social health and reduce health care costs.

This rapid review aims to identify the types of technologies used by people with dementia and their supporters during the COVID-19 pandemic, and the issues which influenced technology adoption within their usual care routines. PubMed, PsychInfo, Scopus, and Cochrane COVID reviews were searched to identify peer-review studies published since 2020. A total of 18 studies were included and synthesised thematically. Of these, most were conducted in the community (n = 15) with people with dementia only (n = 11) and involved qualitative methods (n = 11). The majority (n = 12) focused on digital off-the-shelf and low-cost solutions, such as free video conferencing platforms, to access care, socialise or take part in interventions. Whilst often well-accepted and associated with positive outcomes (such as improved social connectedness), lack of digital literacy or support to use technologies, limited access to appropriate technology, individuals' physical, cognitive, or sensory difficulties, were highlighted and likely to threaten the adoption of these solutions. The quality of the evidence was mixed, neither very robust nor easily generalisable which may be attributed to the challenges of conducting research during the pandemic or the need to rapidly adapt to a new reality. While COVID-19 has fast-tracked the adoption of technology, its use is likely to continue beyond the pandemic. We need to ensure this technology can leverage dementia support and care and that people with dementia are enabled and empowered to use it. [ABSTRACT FROM AUTHOR]

Background: In a rapidly aging population, new and efficient ways of providing health and social support to older adults are required that not only preserve independence but also maintain quality of life and safety. Objective: The NEX project aims to develop an integrated Internet of Things system coupled with artificial intelligence to offer unobtrusive health and wellness monitoring to support older adults living independently in their home environment. The primary objective of this study is to develop and evaluate the technical performance and user acceptability of the NEX system. The secondary objective is to apply machine learning algorithms to the data collected via the NEX system to identify and eventually predict changes in the routines of older adults in their own home environment. Methods: The NEX project commenced in December 2019 and is expected to be completed by August 2022. Mixed methods research (web-based surveys and focus groups) was conducted with 426 participants, including older adults (aged ≥60 years), family caregivers, health care professionals, and home care workers, to inform the development of the NEX system (phase 1). The primary outcome will be evaluated in 2 successive trials (the Friendly trial [phase 2] and the Action Research Cycle trial [phase 3]). The secondary objective will be explored in the Action Research Cycle trial (phase 3). For the Friendly trial, 7 older adult participants aged ≥60 years and living alone in their own homes for a 10-week period were enrolled. A total of 30 older adult participants aged ≥60 years and living alone in their own homes will be recruited for a 10-week data collection period (phase 3). Results: Phase 1 of the project (n=426) was completed in December 2020, and phase 2 (n=7 participants for a 10-week pilot study) was completed in September 2021. The expected completion date for the third project phase (30 participants for the 10-week usability study) is June 2022. Conclusions: The NEX project has considered the specific everyday needs of older adults and other stakeholders, which have contributed to the design of the integrated system. The innovation of the NEX system lies in the use of Internet of Things technologies and artificial intelligence to identify and predict changes in the routines of older adults. The findings of this project will contribute to the eHealth research agenda, focusing on the improvement of health care provision and patient support in home and community environments. [ABSTRACT FROM AUTHOR]

Background As population age increases (CSO, 2016), the CAPTAIN project aims to prevent premature or unnecessary transfer to long-term residential care by offering a safe environment where older adults can retain their autonomy, dignity and independence. CAPTAIN (Coach Assistant via Projected and Tangible Interface) will develop a virtual eCoaching assistant to facilitate independence in the home using augmented reality projections, voice and speech recognition, artificial intelligence and a user interface designed by older adults with their peers in mind. Methods Using Design Thinking and participatory research principles, older adults (n=10), caregivers (n=3) and healthcare professionals (HCPs) (n=2) co-create the CAPTAIN system with the research team. Co-creation occurs in cycles. Two co-design cycles use participatory workshops to identify older adults' needs through discussion of typical older adult 'personas', examine how technology can support these needs and translate these outputs into system requirements. Four co-production cycles will evaluate CAPTAIN prototypes (hardware and software) to determine the effectiveness of personalised recommendations, usability and acceptability. The evaluation (involves additional caregivers, HCPs and stakeholder groups) combines observed CAPTAIN use, system-generated data, self-report measures, participatory group workshops and one-to-one interviews. Results Participants found the personas helpful in terms of generating conversation in the co-design sessions. They confidently described older adult needs, suggested where technology could provide useful support, and features they thought CAPTAIN should offer. Requirements across seven thematic areas (health, nutrition, physical and cognitive activity, accessibility, social interaction, education and safety) have now been sent to technical developers. Data from each cycle will continue to inform the development of CAPTAIN until system completion. Conclusion Participant contributions have ensured the continued development of an accessible, easy-to-use assistive technology system that will facilitate independent living and support older adults "... to do the things they want to do, when they want to do them". [ABSTRACT FROM AUTHOR]

Background: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care.Objective: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs.Methods: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression.Results: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL.Conclusion: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care. [ABSTRACT FROM AUTHOR]

Background: Previous findings indicate that people with dementia and their informal carers experience difficulties accessing and using formal care services due to a mismatch between needs and service use. This mismatch causes overall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background and methods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practice development in finding timely access to formal care for community-dwelling people with dementia and their informal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the use of formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Compare these across European countries, 4) Understand the costs and consequences of formal care services utilization in people with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formal care services across European countries.Methods: In a longitudinal cohort study conducted in eight European countries approximately 450 people with dementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). In this year we will closely monitor the process of finding access to formal care. Data on service use, quality of life and needs will be collected.Discussion: The results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledge about enabling and predisposing factors regarding access to care services, as well as its costs and consequences, can advance the state of the art in health systems research into pathways to dementia care, in order to benefit people with dementia and their informal carers. [ABSTRACT FROM AUTHOR]

The global population is aging in an unprecedented manner and the challenges for improving the lives of older adults are currently both a strong priority in the political and healthcare arena. In this sense, preventive measures and telemedicine have the potential to play an important role in improving the number of healthy years older adults may experience and virtual coaching is a promising research area to support this process. This paper presents COLAEVA, an interactive web application for older adult population clustering and evolution analysis. Its objective is to support caregivers in the design, validation and refinement of coaching plans adapted to specific population groups. COLAEVA enables coaching caregivers to interactively group similar older adults based on preliminary assessment data, using AI features, and to evaluate the influence of coaching plans once the final assessment is carried out for a baseline comparison. To evaluate COLAEVA, a usability test was carried out with 9 test participants obtaining an average SUS score of 71.1. Moreover, COLAEVA is available online to use and explore. [ABSTRACT FROM AUTHOR]

Introduction: Research shows that PwD and their carers often do not receive the type, quality and amount of support needed from health and social care services. This study, part of the Access to Timely Care (Actifcare) JPND-funded project, aimed to identify the (un)met needs of Irish people with dementia (PwD) living at home and to compare these to needs assessments from a family caregiver and an independent Actifcare researcher. Theory/Methods: Forty-three PwD (22 female, mean age 74.05, mean MMSE 20.34) and family caregiver (33 female, mean age 58.12) dyads participated. The Camberwell Assessment of Need for the Elderly (CANE) was completed at baseline, 6-months and 12-months. All raters reported met and unmet need. Caregivers and researchers also reported formal and informal supports received. Additional measures included: Quality of life (Qol-AD, ICECAP-O, Carer- QoL), Neuropsychiatric symptoms (NPI-Q) and carer perseverance. Results: PwD perceived fewer met needs at baseline (M=4.79, SD=3.2) than caregivers (M=8.6, SD=3.78) and researchers (M=8.3, SD=3.6); particularly environmental and physical needs. Researchers identified significantly more unmet need (M=3.28, SD=2.33) than caregivers (M=2.19, SD=2.05) and PwD (M=0.72, SD=1.32). Unmet needs were typically psychological (memory) and social (daytime activities, company) and regularly rated as 'not the right type of care'. PwD sex had no impact on ratings, but group differences in unmet increased with dementia severity. Greater met needs were significantly related to higher NPI scores and greater functional need. Caregiver ratings of met need indicated longer care perseverance. Lower levels of unmet need were significantly associated with better quality of life. Similar patterns were found at 6- and 12-months with researchers increasingly identifying umet needs. Discussions: PwD reported fewest needs. Although often unaware of their psychological needs, these are generally identified by caregivers with the exception of support for memory difficulties; these were typically reported by researchers. Addressing unmet need positively influenced the dyadic quality of life, yet all groups reported high levels of unmet social need and found available services lacking and inappropriate. High levels of met physical need demonstrates a continued primary policy emphasis on soley supporting these needs. Conclusions: Dementia needs assessments must address the full range of biopsychosocial needs of the PwD and their caregivers such that timely tailored supports can be provided. Case management approaches that integrate the provision of health and social care are recommended. [ABSTRACT FROM AUTHOR]