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Background: In a rapidly ageing 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 Internet of Things integrated system coupled with Artificial Intelligence to offer unobtrusive health and wellness monitoring to support older adults to live 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: Mixed methods research (online survey and focus groups) was conducted with 426 participants including older adults (aged 60 and above), 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 two 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 trial (Phase 3). For the Friendly Trial, 7 older adult participants aged 60 years and above and living alone in their own homes for a 10-week period were enrolled in the trial. Thirty older adult participants aged 60 years and above and living alone in their own homes will be recruited for the Action Research trial for a 10-week period (Phase 3). Results: Phase 1 of the project (n=426) participants 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 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 IoT technologies and AI to identify and predict changes in the routines of older adults. The findings of this overall project will contribute to the e-Health research agenda focusing on the improvement of healthcare provision and patient support in home and community environments.

Supplemental Material, sj-pdf-1-dem-10.1177_14713012221077531 for Childhood perspectives of parental young onset dementia: A qualitative data synthesis by Cathal Blake and Louise Hopper in Dementia

Objectives To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. Methods We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. Results Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p

OBJECTIVES: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. METHODS: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. RESULTS: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p

Introdução: As pessoas com demência e os seus familiares deveriam ter acesso atempado a cuidados formais na comunidade (centros de dia, apoio domiciliário). O projecto EU-Actifcare investigou o acesso/utilização destes serviços em países europeus. Descrevemos a implementação do estudo de coorte e a avaliação inicial em Portugal, com foco nas necessidades de cuidados e recurso aos serviços.Material e Métodos: Selecionámos uma amostra de conveniência de 66 pessoas com diagnóstico de demência ligeira a moderada (residindo na comunidade sem cuidados formais relevantes) e respetivos familiares-cuidadores. A avaliação (clínico-funcional e social) incluiu os instrumentos Camberwell Assessment of Need for the Elderly e Resource Utilization in Dementia.Resultados: Identificámos necessidades não-cobertas dos doentes (média 1,1; DP = 1,7), principalmente de companhia (23% dos casos), sofrimento psicológico (20%) e atividades diárias (14%). Os familiares-cuidadores dedicavam 150 minutos/dia (mediana) à prestação de cuidados e 44% apresentavam necessidades não-cobertas de sofrimento psicológico. Quando havia problemas de acesso/utilização dos serviços de saúde e sociais na comunidade, estes estavam frequentemente relacionados com recusa ou desconhecimento de utentes/familiares.Discussão: A seleção dos participantes não foi fácil, pela especificidade dos critérios adotados. Não almejando representatividade nacional, recrutámos uma amostra típica de pessoas em estádios ligeiros a moderados de demência, em serviços e regiões diferentes. Nalguns casos, encontrámos necessidades não-cobertas e repercussões familiares que já justificariam respostas de serviços na comunidade, não fossem os problemas de acesso/utilização.Conclusão: Na área das demências, existem dificuldades no acesso atempado e utilização efectiva de cuidados formais, coexistindo com uma cobertura menor de necessidades específicas.

Funding: The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript Objectives: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. Method: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. Results: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. Conclusion: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers. publishersversion published

Purpose The Quality of Life Alzheimer’s Disease Scale (QoL-AD) is commonly used to assess disease specific health-related quality of life (HRQoL) as rated by patients and their carers. For cost-effectiveness analyses, utilities based on the EQ-5D are often required. We report a new mapping algorithm to obtain EQ-5D indices when only QoL-AD data are available. Methods Different statistical models to estimate utility directly, or responses to individual EQ-5D questions (response mapping) from QoL-AD, were trialled for patient-rated and proxy-rated questionnaires. Model performance was assessed by root mean square error and mean absolute error. Results The response model using multinomial regression including age and sex, performed best in both the estimation dataset and an independent dataset. Conclusions The recommended mapping algorithm allows researchers for the first time to estimate EQ-5D values from QoL-AD data, enabling cost-utility analyses using datasets where the QoL-AD but no utility measures were collected.

Objectives: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. Method: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. Results: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. Conclusion: The Actifcare Best Practice Recommendations suggest practical measures that can be taken bydecision makers to enhance access and use of community care services, and there by enhance quality of care and quality of life for home dwelling people with dementia and their informal carers. Abbreviations: Actifcare: ACcess to TImely Formal Care; AE: Alzheimer Europe;; EWGPWD: European Working Group of People with Dementia;; GP: General Practitioner.

Objectives:In the current study, the Anderson model is used to determine equita-ble access to dementia care in Europe. Predisposing, enabling, and need variableswere investigated to find out whether there is equitable access to dementia‐specificformal care services. Results can identify which specific factors should be a target toimprove access.Methods:A total of 451 People with middle‐stage dementia and their informalcarers from eight European countries were included. At baseline, there was no useof formal care yet, but people were expected to start using formal care within thenext year. Logistic regressions were carried out with one of four clusters of serviceuse as dependent variables (home social care, home personal care, day care, admis-sion). The independent variables (predisposing, enabling, and need variables) wereadded to the regression in blocks.Results:The most significant predictors for the different care clusters are diseaseseverity, a higher sum of (un)met needs, hours spent on informal care, living alone,age, region of residence, and gender.Conclusion:The Andersen model provided for this cohort the insight that (besidesneed factors) the predisposing variables region of residence, gender, and age do playa role in finding access to care. In addition, it showed us that the numbers of hoursspent on informal care, living alone, needs, and disease severity are also importantpredictors within the model's framework. Health care professionals should pay atten-tion to these predisposing factors to ensure that they do not become barriers forthose in need for care.

This paper reports on qualitative data from the Actifcare study investigating experiences, attitudes, barriers and facilitators concerning access to and use of formal care. A total of 85 semi‐structured in‐depth interviews were conducted in eight European countries. Results were analysed with a deductive content analysis, first within country and then integrated in a cross‐national analysis. Overall, analysis of the in‐depth interviews revealed two major themes with five subcategories. The results can be summarised in an optimal pathway for access to dementia care. This pathway includes fixed factors such as disease‐related factors and system‐related factors. In addition there are personal factors that are subject to change such as attitudes towards care. An important finding consisted of the necessity of having sufficient information about the disease and available care and having a key contact person to guide you through the process of finding suitable care while monitoring your needs. In addition, it is important to involve your social network as they can take on care‐giving tasks. It is helpful to have a diagnosis (in most countries). Concerning decision‐making, the person closest to the person with dementia is in the majority of cases the one who makes the ultimate decision to access and use services and he/she should therefore be supported in this process. These results provide insight into the factors that influence the pathway to formal care use and help professionals to enhance access to formal dementia care by focusing on factors that can be modified.

Our work exhibits how previous projects on the Active and Healthy Ageing field have advanced to the conception of CAPTAIN, a radically new approach towards increased enduser acceptance. The goal is to create intuitive technology that does not require specific skills for interaction and blends in with real life. CAPTAIN will be co-designed by all types of stakeholders, including older adults, involved in all stages, from the initial design to delivery of the final system

This is an EU Joint Programme - Neurodegenerative Disease Research (JPND) project (http://www.jpnd.eu). The project is supported through the following national funding organisations under the aegis of JPND: Germany, Ministry of Education and Research; Ireland, Health research board; Italy, Ministry of Health; the Netherlands, The Netherlands organisation for Health Research and Development; Sweden, The Swedish Research Council for Health, Working Life and Welfare; Norway, The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript. We acknowledge the financial support within the funding programme Open Access Publishing by the German Research Foundation (DFG). 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. publishersversion published

Actifcare_topic guide. The topic guide which was used in the focus groups across all countries. (DOCX 47 kb)

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.