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Objective: 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. Methods: 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. Results: 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. Conclusion: 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.

Background: There is a need for a broader understanding of the psychological influences impacting healthy older adults’ intentions to use assistive smart home technologies if these technologies are to succeed in helping older adults to continue to live independently in their own homes. Objective: This qualitative paper aimed to analyse healthy older adults’ intentions to adopt and use assistive smart home technologies using the Theoretical Domains Framework (TDF), which synthesises a large number of theories of psychology and behaviour change. Method: Using a focus group methodology, an in-person workshop presented fictitious personas representing end-user cases to participants, soliciting potential problems that may arise while living independently and solutions that might help. Online Zoom workshops facilitated discussions centred on participant opinions about how various forms of technology could support independent living for older adults. Comments were analysed using a TDF approach. Results: Key domains identified as influencing intention to adopt and use assistive smart home technologies included Knowledge, Skills, Beliefs about Capabilities, Goals, Beliefs about Consequences, Social Influences, Emotions, and Environmental Context and Resources. Conclusion: This paper has identified the eight most relevant TDF domains and mapped these to some of the theories and associated behaviour change strategies most suited to investigating and shaping intentions to use assistive smart home technology. The TDF-based analysis successfully elucidated a broad range of psychological influences driving intentions to adopt and use such technology. Knowledge of these influences can assist those involved in technology design, development, and marketing to ultimately increase the uptake of smart technology by older adults. Key advantages of the TDF include its comprehensive theoretical coverage contained within domains comprising mediators of behaviour change, and its capacity to elicit a wide range of influences with the potential to drive acceptance and adoption of smart technology among community-dwelling older adults.

Background While it is less common, young onset dementia manifests at a significantly younger age (< 65). Many people with young onset dementia are parents; however, little is known about impact of the condition on children and young adults. A qualitative thematic analysis was conducted to synthesise the literature on the perspectives of children and young adults with a parent living with young onset dementia. Methods Electronic databases were searched in order to identify all peer-reviewed literature in relation to the perspectives of children and young adults with a parent living with young onset dementia. A thematic analysis was conducted on the relevant literature. Results The electronic database search resulted in 15 full texts articles. Four main themes with related subthemes emerged from the thematic analysis. The four main themes were: changing family dynamics; psychological and physical strain; stigma and coping strategies. Conclusion The current synthesis outlines the perspectives of children and young adults with a parent living with young onset dementia. There is a significant lack of research in this area which adds to the stereotypical view of dementia as an older person’s disease. This can lead to children and young adults being impacted by lack of awareness and stigma resulting in significant psychosocial problems. As the number of people living with dementia (including young onset) is set to increase, future research with children and young adults with a parent with young onset dementia is important in order to better support this cohort.

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.

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. This project has received funding from the European Union’s Horizon 2020 research and innovation program under grant agreement No 769830.

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. International Registered Report Identifier (IRRID) DERR1-10.2196/35277

Objectives: Relationship quality (RQ) between a person with dementia and a family carer may influence their health and quality of life. However, evidence regarding its course and influencing factors is limited. We aimed to explore RQ trajectories in dementia, and identify predictors of change. Methods: We analysed longitudinal data from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. The Positive Affect Index, rated separately by both people with dementia and their carers, assessed RQ. Other measures included the Neuropsychiatric Inventory Questionnaire (regarding persons with dementia), and the Relative Stress Scale, Sense of Coherence Scale and Lubben Social Network Scale (for carers). Trajectories and influencing factors were explored applying a latent growth model (LGM). Results: RQ in the group of carers declined over 1year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers’ RQ, whereas social support was associated with more positive RQ trajectories. Conclusion: This study provides a valuable insight into the course of RQ. LGM proved useful to explore the factors that influence RQ trajectories and variability within- and between-persons. Our findings emphasise the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ. Fundação para a Ciência e Tecnologia - FCT info:eu-repo/semantics/publishedVersion

Background Since the 1980’s, the number of established dementia registries worldwide has grown considerably and new registries continue to develop (e.g. Cuba, Netherlands, Greece and Australia). Ireland does not currently collect data relating to dementia in any systematic way. A National Dementia Registry model has been commissioned by the National Dementia Office (funded by Dormant Accounts through the Department of Health) to address this gap. Methods Despite a growth in dementia registry numbers (30+), no international standard has emerged, nor does Ireland have national guidelines in relation to patient registries. We commenced with a review of research, volunteer, epidemiological, and quality of care registries to examine similarities and differences in their design, governance, data collection, outputs and perceived value, so that we can mirror and learn from these and determine the possibilities for value creation in an Irish context. Results Key models have emerged along with a willingness to share experiences and support our learning (e.g. France, Spain, Sweden, Norway and USA). Common data includes patient characteristics, diagnostic work-up, diagnosis, treatment (point in time) and service provider details. There is a clear shift towards quality models that identify variation in best practice, follow the patient over time (only Sweden to date), and provide feedback on performance in an effort to stimulate quality improvement and motivate change. No jurisdiction has perfect conditions. The creation of a registry can itself drive the change required to enable it to add value to the health system. Conclusion Existing dementia registries evidence the value that a dementia registry provides, in particular the fostering of clinical best practice and improvement in patient outcomes. Notwithstanding the challenges of integrated data collection in Ireland, these registry models illustrate that the time is right to develop a national dementia registry. The value and importance in having dementia data cannot be underestimated.

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”.

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.

The current study focuses on the short-term effect of MARIO, a social robot, on quality of life, depression, and perceived social support in persons with dementia (PWD) and evaluates their acceptability of MARIO. Ten PWD in one nursing home took part in a 4-week pilot study, where each participant had up to 12 sessions with MARIO. Sessions comprised engagement in music, news, reminiscence, games, and calendar applications. Standardized questionnaires were administered before and after the 4-week period. Participants had a sustained interest in MARIO during their interactions and an acceptance of MARIO's appearance, sound, and applications. Consequently, participants spent more time socially engaged. No statistically significant differences were found in quality of life, depression, and perceived social support. PWD can engage with a social robot in a real-world nursing home. Future research should incorporate a larger sample and longer intervention period. Funding received from European Union Horizons 2020—The Framework Programme for Research and Innovation (2014–2020) (grant agreement 643808). The authors acknowledge all members of the MARIO Project Advisory Board and the Irish Research Council Government of Ireland Postdoctoral Fellowship scheme (project ID: GOIPD/2017/1301). peer-reviewed 2020-06-25

Ageing is a significant risk factor for developing dementia; however, some people develop symptoms before the age of 65. Although less common, it is referred to as young-onset dementia. Estimating prevalence rates in Ireland is difficult, as there has been little study around what it is like to live with/care for this cohort; consequently, it is poorly understood. Nine primary carers were interviewed using semi-structured one-to-one interviews. Interview data were analysed with inductive thematic analysis. Themes included sense of loss, diagnostic issues, appropriateness of services, stigma and carer strain, illustrating the complex nature of caring for someone with young-onset dementia.

ObjectivesTo examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia.MethodsWe 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.ResultsUnmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p < 0.001), 0.76 (p < 0.001) and 0.78 (p = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p = 0.007) and at six months follow-up (mean 0.31 points, p = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 (p = 0.033), 0.67 (p < 0.001) and 0.91 (p < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p = 0.005) and at six months (mean 0.35 points, p = 0.002) follow-up.ConclusionInterventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

Timely access to care services is crucial to support people with dementia and their family carers to live well. Carers of people with dementia (N = 390), recruited from eight countries, completed semi-structured interviews about their experiences of either accessing or not using formal care services over a 12-month period in the Access to Timely Formal Care (Actifcare) study. Participant responses were summarised using content analysis, categorised into clusters and frequencies were calculated. Less than half of the participants (42.3%) reported service use. Of those using services, 72.8 per cent reported timely access and of those not using services 67.2 per cent were satisfied with this situation. However, substantial minorities either reported access at the wrong time (27.2%), or feeling dissatisfied or mixed feelings about not accessing services (32.8%). Reasons for not using services included use not necessary yet, the carer provided support or refusal. Reasons given for using services included changes in the condition of the person with dementia, the service's ability to meet individual needs, not coping or the opportunity to access services arose. Facilitators and barriers to service use included whether participants experienced supportive professionals, the speed of the process, whether the general practitioner was helpful, participant's own proactive attitude and the quality of information received. To achieve timely support, simplified pathways to use of formal care services are needed.

Background The death toll of COVID-19 topped 170,000 in Europe by the end of May 2020. COVID-19 has caused an immense psychological burden on the population, especially among doctors and nurses who are faced with high infection risks and increased workload. Objective The aim of this study was to compare the mental health of medical professionals with nonmedical professionals in different European countries during the COVID-19 pandemic. We hypothesized that medical professionals, particularly those exposed to COVID-19 at work, would have higher levels of depression, anxiety, and stress. We also aimed to determine their main stressors and most frequently used coping strategies during the crisis. Methods A cross-sectional online survey was conducted during peak COVID-19 months in 8 European countries. The questionnaire included demographic data and inquired whether the participants were exposed to COVID-19 at work or not. Mental health was assessed via the Depression Anxiety Stress Scales32 (23.53)–21 (DASS-21). A 12-item checklist on preferred coping strategies and another 23-item questionnaire on major stressors were completed by medical professionals. Results The sample (N=609) consisted of 189 doctors, 165 nurses, and 255 nonmedical professionals. Participants from France and the United Kingdom reported experiencing severe/extremely severe depression, anxiety, and stress more often compared to those from the other countries. Nonmedical professionals had significantly higher scores for depression and anxiety. Among medical professionals, no significant link was reported between direct contact with patients with COVID-19 at work and anxiety, depression, or stress. “Uncertainty about when the epidemic will be under control” caused the most amount of stress for health care professionals while “taking protective measures” was the most frequently used coping strategy among all participants. Conclusions COVID-19 poses a major challenge to the mental health of working professionals as a considerable proportion of our participants showed high values for depression, anxiety, and stress. Even though medical professionals exhibited less mental stress than nonmedical professionals, sufficient help should be offered to all occupational groups with an emphasis on effective coping strategies.

The author would like to change the authorship in the previous publication [...]

BACKGROUND The death toll of COVID-19 topped 170,000 in Europe by the end of May 2020. COVID-19 has caused an immense psychological burden on the population, especially among doctors and nurses who are faced with high infection risks and increased workload. OBJECTIVE The aim of this study was to compare the mental health of medical professionals with nonmedical professionals in different European countries during the COVID-19 pandemic. We hypothesized that medical professionals, particularly those exposed to COVID-19 at work, would have higher levels of depression, anxiety, and stress. We also aimed to determine their main stressors and most frequently used coping strategies during the crisis. METHODS A cross-sectional online survey was conducted during peak COVID-19 months in 8 European countries. The questionnaire included demographic data and inquired whether the participants were exposed to COVID-19 at work or not. Mental health was assessed via the Depression Anxiety Stress Scales32 (23.53)–21 (DASS-21). A 12-item checklist on preferred coping strategies and another 23-item questionnaire on major stressors were completed by medical professionals. RESULTS The sample (N=609) consisted of 189 doctors, 165 nurses, and 255 nonmedical professionals. Participants from France and the United Kingdom reported experiencing severe/extremely severe depression, anxiety, and stress more often compared to those from the other countries. Nonmedical professionals had significantly higher scores for depression and anxiety. Among medical professionals, no significant link was reported between direct contact with patients with COVID-19 at work and anxiety, depression, or stress. “Uncertainty about when the epidemic will be under control” caused the most amount of stress for health care professionals while “taking protective measures” was the most frequently used coping strategy among all participants. CONCLUSIONS COVID-19 poses a major challenge to the mental health of working professionals as a considerable proportion of our participants showed high values for depression, anxiety, and stress. Even though medical professionals exhibited less mental stress than nonmedical professionals, sufficient help should be offered to all occupational groups with an emphasis on effective coping strategies.

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.

ObjectivesIn the current study, the Anderson model is used to determine equitable access to dementia care in Europe. Predisposing, enabling, and need variables were investigated to find out whether there is equitable access to dementia-specific formal care services. Results can identify which specific factors should be a target to improve access.MethodsA total of 451 People with middle-stage dementia and their informal carers from eight European countries were included. At baseline, there was no use of formal care yet, but people were expected to start using formal care within the next year. Logistic regressions were carried out with one of four clusters of service use as dependent variables (home social care, home personal care, day care, admission). The independent variables (predisposing, enabling, and need variables) were added to the regression in blocks.ResultsThe most significant predictors for the different care clusters are disease severity, a higher sum of (un)met needs, hours spent on informal care, living alone, age, region of residence, and gender.ConclusionThe Andersen model provided for this cohort the insight that (besides need factors) the predisposing variables region of residence, gender, and age do play a role in finding access to care. In addition, it showed us that the numbers of hours spent on informal care, living alone, needs, and disease severity are also important predictors within the model's framework. Health care professionals should pay attention to these predisposing factors to ensure that they do not become barriers for those in need for care.

Background Access to formal care is not always timely and a better understanding on the impact of untimely access is needed. Objective To examine, from a societal perspective, the impact of untimely access to formal care in terms of total costs and quality of life over one year in community dwelling people with dementia. Methods Within the Actifcare study, needs, resource use, and quality of life were observed for one year in a cohort of 451 community dwelling people with dementia in 8 European countries. Untimely access to care was operationalized as having at least one unmet need for care identified by the Camberwell Assessment of Need for the Elderly (CANE) instrument. Two regression models were built for both total costs and quality of life measured by the EQ-5D-5L, one using sum of unmet needs and one using a predefined selection of need items. Results Unmet needs were not associated with higher total costs but they were associated with a lower quality of life of people with dementia. Of all CANE items, only an unmet need for "company" was significantly related to lower total costs. Conclusion Total costs did not seem to differ between participants with unmet and met needs. Only few associations between specific unmet needs and costs and quality of life were found. Furthermore, quality of life of people with dementia decreases when multiple unmet needs are experienced, indicating that assessing and meeting needs is important to improve quality of life.

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.

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

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.

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. The project is supported through the following funding organizations under the aegis of JPND – www.jpnd.eu [grant number 733051001]. Germany, Ministry of Education and Research, Ireland, Health research board, Italy, Ministry of Health, the Netherlands, The Netherlands organization 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 (Fundação para a Ciência e Tecnologia [grant number FCT–JPND‐HC/ 0001/2012], United Kingdom, Economic and Social Research Council. JPND has read and approved of the protocol of the Actifcare study

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.

With dementia prevalence set to increase as our population ages, there is an urgent need to gather valid epidemiological data in Ireland that provides accurate and reliable estimates of current and future dementia prevalence and facilitates the development of effective dementia health and social policy. This study examined the feasibility of developing a national dementia register for Ireland. A rapid review of national and international patient registry literature was undertaken to identify registry functions, underlying design and process models, best-practice guidelines for their development, and the legal, ethical, clinical, technology, and financial issues relevant to the creation of an Irish dementia registry. Following ethical approval, we also conducted two focus groups with people with dementia and twenty-one expert stakeholder interviews with clinicians, and representatives from research, health, and social care organisations in Ireland and the UK, existing Irish patient registries, and international dementia registries. Discussions followed an agreed structure, were audio-recorded, transcribed, and analysed using inductive content analysis. Common themes that emerged from the literature review and stakeholder discussions were: registry function; registry data; benefits and risks; governance; legislation; barriers and facilitators; lessons learned; best practice; and complexities within the Irish system. Given the government strategy of addressing research and information systems as part of the 2014 National Dementia Strategy, it is opportune to examine the best approach to improving dementia data recording in Ireland. These results provide an evidence-base on which to progress this debate.

BACKGROUND: People with dementia and their informal carers often do not receive appropriate professional support or it is not received at the right time.OBJECTIVES: Description and comparison of common pathways to formal community dementia care in eight European countries as a part of the transnational Actifcare project.MATERIALS AND METHODS: The German team was responsible for creating an individual case scenario as a starting point. The research teams in Ireland, Italy, the Netherlands, Norway, Portugal, Sweden, and the United Kingdom were then asked to describe a common pathway to formal dementia care by writing their own vignette using the provided individual case scenario.RESULTS: A transnational qualitative content analysis was used to identify the following categories as being the most important: involved professionals, dementia-specific and team-based approaches, proactive roles, and financial aspects. General practitioners (GPs) are described as being the most important profession supporting the access to formal care in all the involved countries. In some countries other professionals take over responsibility for the access procedure. Dementia-specific approaches are rarely part of standard care; team-based approaches have differing significances in each of the countries. Informal carers are mainly proactive in seeking formal care. The Nordic countries demonstrate how financial support enhances access to the professional system.CONCLUSION: Enhanced cooperation between GPs and other professions might optimize access to formal dementia care. Team-based approaches focusing on dementia care should be developed further. Informal carers should be supported and relieved in their role. Financial barriers remain which should be further investigated and reduced.

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.

Introduction: Given the rise in dementia prevalence, primary care dementia workload is inevitably increasing. Caring for people with dementia is demanding and it requires ongoing specialist training (1), yet many health and social care staff in contact with people with dementia in Ireland lack specialist dementia knowledge and are less likely to have received specialist training in comparison to health professionals based in nursing homes (2, 3). The Irish National Dementia Strategy (4) prioritizes the need for dementia specific training to broaden the skills base of primary care health professionals. The overall aim of the Primary Care Education, Pathways and Research of Dementia (PREPARED) program is to deliver and evaluate training, education and support interventions for general practitioners (GPs) and Primary Care Teams (PCTs) that will contribute to patients receiving an integrated, collaborative dementia care response from a prepared, proactive local primary care network. Practice Change: The specific aims of the PCT component of PREPARED are to develop, test and implement a dementia educational workshop for PCTs around collaborative and integrated dementia care. The workshop content is suitable for all primary care clinicians and health professionals who provide care and support to people with dementia and their families in the community. The workshop has been peer reviewed and will be piloted in 2 sites in December and early January 2017, following which it will be rolled out nationally. The training reflects the priorities within the NDS, draws on the principles of the widely used Chronic Care Model (5) and is grounded in the day-to-day needs of patients and PCT members. Successful implementation depends on behaviour change underpinned by increased understanding of dementia and improved outcomes for people with dementia and their families through integrated care practice. The PCT workshop has been developed to achieve change on the basis of an evaluation of current education and support needs among health professionals delivering dementia care within primary care settings. Program Highlights: The impact of the PCT workshop will be evaluated against the following outcomes: (a) increased knowledge of the characteristics of dementia, (b) increased knowledge of how best to support those living with dementia, (c) increased understanding of PCT roles and responsibilities involved in providing integrated dementia care, and (d) increased skill regarding PCT collaboration and inter-professional communication. Researchers from Dublin City University will carry out a comprehensive outcomes and process evaluation of the program guided by the Medical Research Council UK framework for the evaluation of complex interventions (6, 7). Conclusions: The evaluation results will be used to determine level of programme success, why it works and how it can be optimised, and why less successful or unexpected outcomes occurred. Findings will also be used to make recommendations for the subsequent operation and national rollout of the program. The PREPARED PCT Training has the potential to contribute to the impact assessment of collaborative educational interventions on dementia care in Ireland, making it an exemplar for other chronic disease management pathways. References: 1- Brooker D. Person-centred dementia care: making services better. London: Jessica Kingsley Publishers; 2007. 2- de siun A, Manning M. National dementia project: Dementia education needs analysis report. Ireland: Health Service Executive; 2010. 3- Farrell A, Cahill S, Burke S. Rural practice, dementia and CMHN activity. Partnerships in Community Mental Health Nursing and Dementia Care: Practice Perspectives2007. p. 142. 4- Department of Health. The Irish National Dementia Strategy. 2014. 5- Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness: the chronic care model, Part 2. Jama. 2002;288(15):1909-14. 6- Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M, et al. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ. 2008;337:a1655. 7- Moore GF, Audrey S, Barker M, Bond L, Bonell C, Hardeman W, et al. Process evaluation of complex interventions: Medical Research Council guidance. BMJ. 2015;350:h1258.

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. Lessons learned: Meeting physical need alone is not sufficient to maintain quality of life. It is essential to take a holistic view of the individual and their environment in order to adequately assess the support needed. Limitations: Although all PwD were able to report their needs at baseline, fewer were able to do so at 6-months (n=38) and 12-months (n=33). Suggestions for future research: Future research is needed that formally and regularly assesses needs from diagnosis. If coupled with analysis of the type, duration and benefits of supports used, greater insight will be gained to enable the development of integrated dementia care that better supports the complex biopsychosocial needs of PwD and their families.

Background: There is an acknowledged lack of information about dementia in Ireland, including very poor coding of dementia across all care settings. Yet with dementia prevalence set to increase as our population ages, there is an urgent need to gather valid epidemiological data that provides accurate and reliable national estimates of current and future dementia prevalence, and facilitates the development of robust and effective dementia health and social policy (Cahill, O’Shea, & Pierce, 2012). This study, commissioned as part of the Alzheimer Society of Ireland evidence-based policy series, examined the feasibility of developing a national dementia register for Ireland. Methods: A rapid review of national and international patient registry literature was undertaken to identify registry functions, underlying design and process models, and best-practice guidelines for their development. A ‘landscape analysis’ identified the legal, ethical, clinical, technology, and financial issues relevant to the creation of an Irish dementia register. Following ethical approval, we conducted two focus groups with people with dementia and twenty-one expert stakeholder interviews with clinicians and with representatives from research, health, and social care organisations in Ireland and the UK, existing Irish patient registries, and international dementia registries. Discussions followed an agreed structure, were audio-recorded, transcribed, and analysed using inductive content analysis. Results: Common themes emerged from the literature and stakeholder discussions with regard to: registry function; benefits and risks; data collection; data management; governance; legislation; barriers and facilitators; Irish complexities; and best-practice. Conclusions: The results provide an evidence-base on which to progress the issue of improved recording structures for dementia in Ireland. Given the strategic approach the government is now taking to address research and information systems as part of the 2014 National Dementia Strategy, it is opportune to examine the potential for a framework to collect information in a reliable, accurate, valid, complete, and timely way

Background There is a poor understanding of to how to recruit and involve primary care dentists in clinical trials. Aim To use a qualitative paradigm to explore the views of primary care dentists towards participating in clinical trials and develop an understanding of the factors that facilitate and prevent their involvement. Design, setting, subjects and methods An iterative approach was undertaken using a focus group (n = 6) followed by phased semi-structured interviews (n = 18). Data were analysed using thematic analysis and constant comparative analysis. Findings The semi-structured interviews generated nine codes which were organised into three themes: technical issues for trials in primary dental care, practical issues for research in primary dental care and primary care dentists as research consumers. Overall, primary care dentists had a poor understanding of research methodology and clinical research. Barriers to participation included loss of clinical freedom and control, practice disruption, patient welfare, staff workload, financial loss and time. Conclusions Barriers to primary dental care research need to be overcome through appropriate protocols, funding, training and support. Joint working of primary dental care teams and academic researchers is essential, along with a constructive and open dialogue, if clinical trials are to be successfully undertaken in a practice environment.

Aims To determine the attitudes and opinions of dentists undertaking research in primary care dental practices, about the value of research in primary care. Method The data were collected during a face-to-face interview utilising a schedule of open and closed questions, which were used to guide the interview. Results Twenty-seven of the 40 primary care dentists (67.5%) who had participated in a five-year primary care clinical trial completed the interview. All the respondents believed that primary care research was important and should be of relevance to their practice, but only 12 (44%) thought it was important they carried out this research. The majority (96%) of respondents felt it did not pay financially to do research as a primary care practitioner and 12 (44%) thought research in primary care was too time consuming, but 25 (92%) were prepared to get involved in a primary care research group. Five (56%) salaried service (SS) practitioners and 14 (78%) general dental services (GDS) dentists felt they did not have enough experience, skills or knowledge to conduct their own research. Significantly more salaried dentists compared with GDS dentists felt adequately supported to do primary care research. Conclusion Future research in primary care should be focused on topics primary care practitioners feel of use to their clinical practice. A method of funding practitioners and providing time for them to complete research away from their clinical duties is necessary. There is a need for collaborative working with an academic institution, which can provide training and academic support for practitioners.

As a result of several years of European funding, progressive introduction of assistive technologies in our society has provided many researchers and companies with opportunities to develop new information and communication technologies aimed at overcoming the digital divide of those at a greater risk of being left behind, as can be the case with healthy older people and those developing cognitive decline and dementia. Moreover, in recent years, when considering how information and communication technologies have been integrated into older people’s lives, and how technology has influenced these individuals, doubts remain regarding whether technologies really fulfil older users’ needs and wishes and whether technologies developed specifically for older users necessarily protect and consider main ethical values. In this article, we address the relevance of privacy, vulnerability and preservation of autonomy as key factors when involving older individuals as target users for information and communication technology research and development. We provide explanatory examples on ethical issues involved in the particular case of developing different types of information and communication technology for older people (from robotics to serious games), what previously performed research tells us about older adults’ preferences and wishes for information and communication technology and what steps should be taken into consideration in the near future.