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ObjectiveThe quality of the relationship between persons with dementia and family carers influences health and quality-of-life outcomes. Little is known regarding those at higher risk of experiencing a decline in relationship quality, who could potentially benefit the most from interventions. We aimed to identify these risk profiles and explore the underlying factors.MethodsWe applied a latent profile analysis to relationship quality data from a 1-year follow-up of 350 dyads of persons with dementia and their informal carers from the Actifcare cohort in eight European countries. Assessments included sociodemographic, clinical, functional, psychosocial and quality-of-life measures. Relationship quality was assessed with the Positive Affect Index. A discriminant analysis explored factors influencing the risk profiles.ResultsThere were two relationship quality profiles among persons with dementia (gradually decreasing, 74.0%; low but improving, 26%) and two among carers (steadily poor, 57.7%; consistently positive, 42.3%). The ‘gradually decreasing’ profile (persons with dementia) was related to their levels of dependence and unmet needs, along with carers’ social distress and negative feelings, lower baseline RQ and sense of coherence. The ‘steadily poor’ profile (carers) was influenced by their social distress and negative feelings, lower sense of coherence and perceived social support. These two predominant profiles showed significant decreases in quality-of-life over one year.ConclusionsSpecific profiles of persons with dementia and their carers are at risk of worse relationship quality trajectories. By considering modifiable related factors (e.g., carers’ stress), our findings can help develop tailored, effective interventions.

Introduction: The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables. Methods: This was a longitudinal, observational study using a convenience sample of 54 dyads of people with dementia and their family carers. Our main outcomes were the Camberwell Assessment of Need for the Elderly (CANE) and the Resources Utilization in Dementia. Clinical-functional, quality of life, psychological distress and caregiving-related assessments were also used. Results: At follow-up, the cognitive and functional status of people with dementia declined (p < 0.001), and their neuropsychiatric symptoms increased (p = 0.033). Considering CANE interviewers’ ratings, the total needs of people with dementia increased at follow-up (p < 0.001) but not the unmet needs. Quality of life was overall stable. The use of formal care did not increase significantly, but informal care did in some domains. Carers’ depressive symptoms increased (p = 0.030) and perseverance time decreased (p = 0.045). However, carers’ psychological distress unmet needs were lower (p = 0.007), and their stress and quality of life remained stable. Conclusion: People with dementia displayed complex biopsychosocial unmet needs. Their cognitive-functional decline over one year was not accompanied by a corresponding increase in any pattern of unmet need, nor of service use. Reliance on informal care (namely supervision) may have contributed to this. Caregiving-related outcomes evolved according to different trends, although stability was almost the rule. Primary carers were even more present at follow-up, without an apparently heavier toll on their own needs, burden, and quality of life. Overall, this longitudinal study comprehensively assessed Portuguese community-dwelling people with dementia. Despite the lack of generalizability, participants’ needs remained overall stable and partly unmet over one year. Longer follow-up periods are needed to understand such complex processes.

Introduction: We studied the accuracy of the automatic speech recognition (ASR) software by comparing ASR scores with manual scores from a verbal learning test (VLT) and a semantic verbal fluency (SVF) task in a semiautomated phone assessment in a memory clinic population. Furthermore, we examined the differentiating value of these tests between participants with subjective cognitive decline (SCD) and mild cognitive impairment (MCI). We also investigated whether the automatically calculated speech and linguistic features had an additional value compared to the commonly used total scores in a semiautomated phone assessment. Methods: We included 94 participants from the memory clinic of the Maastricht University Medical Center+ (SCD N = 56 and MCI N = 38). The test leader guided the participant through a semiautomated phone assessment. The VLT and SVF were audio recorded and processed via a mobile application. The recall count and speech and linguistic features were automatically extracted. The diagnostic groups were classified by training machine learning classifiers to differentiate SCD and MCI participants. Results: The intraclass correlation for inter-rater reliability between the manual and the ASR total word count was 0.89 (95% CI 0.09–0.97) for the VLT immediate recall, 0.94 (95% CI 0.68–0.98) for the VLT delayed recall, and 0.93 (95% CI 0.56–0.97) for the SVF. The full model including the total word count and speech and linguistic features had an area under the curve of 0.81 and 0.77 for the VLT immediate and delayed recall, respectively, and 0.61 for the SVF. Conclusion: There was a high agreement between the ASR and manual scores, keeping the broad confidence intervals in mind. The phone-based VLT was able to differentiate between SCD and MCI and can have opportunities for clinical trial screening.

Introduction: Care for people with vascular cognitive impairment (VCI), like vascular dementia or post-stroke cognitive impairment, is provided by various healthcare professionals. People with VCI present in different settings like (acute) neurology, rehabilitation and dementia care, all with their own guidelines and workflow. We explored experiences and perspectives of healthcare professionals on care provision, organization and collaboration regarding care for people with VCI. Methods: We performed a qualitative focus group study in regions across the Netherlands. Focus groups were divided in three types: (i) primary care, (ii) secondary care and (iii) mixed focus groups with healthcare professionals from both settings. We included forty healthcare professionals across seven focus groups, including medical specialists, elderly care physicians, general practitioners, nurses, paramedics and case managers in dementia care. Inclusion ended when we reached thematic saturation, meaning new data did not provide additional (sub-)themes. Focus groups were audiotaped and transcribed verbatim. Transcripts were iteratively coded, recoded, analyzed and grouped into themes according to the inductive thematic analysis method by Braun & Clarke. Results: Three themes were identified. An overarching theme was “Knowledge and awareness of VCI.” Participants stated that the general public as well as healthcare professionals had insufficient knowledge of VCI. They agreed that awareness of the condition was a prerequisite for adequate care for people with VCI. The second theme was “Specific care.” Participants noted a lack of differentiation in current VCI care, while specific recommendations are needed for typical symptoms and fluctuations in functioning. Participants also highlighted the need to unburden informal caregivers, who struggle with symptoms like apathy or uncertainty of the disease course, described by one participant as a “no man's land”. The third theme was “Integrated care.” Current care for VCI was perceived as highly fragmented: various professionals provided a specific part, but a central lead or coordinator was often lacking. Participants proposed an integrated and transmural VCI-network. Discussion: More specific and integrated care is needed to accommodate people with VCI and informal caregivers, combining expertise from dementia and rehabilitation settings. Knowledge and awareness of VCI should be improved by providing (psycho-)education to professionals and the public.

ObjectiveThe recognition of dementia as a multifactorial disorder encourages the exploration of new pathways to understand its origins. Social health might play a role in cognitive decline and dementia, but conceptual clarity is lacking and this hinders investigation of associations and mechanisms. The objective is to develop a conceptual framework for social health to advance conceptual clarity in future studies.ProcessWe use the following steps: underpinning for concept advancement, concept advancement by the development of a conceptual model, and exploration of its potential feasibility. An iterative consensus-based process was used within the international multidisciplinary SHARED project.Conceptual frameworkUnderpinning of the concept drew from a synthesis of theoretical, conceptual and epidemiological work, and resulted in a definition of social health as wellbeing that relies on capacities both of the individual and the social environment. Consequently, domains in the conceptual framework are on both the individual (e.g., social participation) and the social environmental levels (e.g., social network). We hypothesize that social health acts as a driver for use of cognitive reserve which can then slow cognitive impairment or maintain cognitive functioning. The feasibility of the conceptual framework is demonstrated in its practical use in identifying and structuring of social health markers within the SHARED project.DiscussionThe conceptual framework provides guidance for future research and facilitates identification of modifiable risk and protective factors, which may in turn shape new avenues for preventive interventions. We highlight the paradigm of social health in dementia as a priority for dementia research.

Caregivers of persons with young-onset dementia (YOD) have an explicit need for tailored information and support about YOD. Therefore, during the European RHAPSODY project a web-based information and support program for YOD caregivers was developed. The program was recently tailored to the Dutch context. This study evaluates the Dutch version on user acceptability, usability, user satisfaction, and user behavior. Methods: A cross-sectional study was conducted to evaluate the publicly available Dutch RHAPSODY program. A pop-up survey, extensive survey, and a semi-structured interview were used to evaluate how visitors perceived the program in terms of acceptability, usability, and their satisfaction. Web metrics registered user behavior. Quantitative data were analyzed using descriptive statistics and a deductive content analysis was used to analyze qualitative data. Results: A total of 26 participants completed the pop-up survey, 19 completed the extensive survey, and 10 participated in the semi-structured interviews. Most participants were caregivers and healthcare professionals. They perceived the program as acceptable and usable in daily life and were satisfied with the quality of the content. The majority would use the program again and recommend it to others. Participants emphasized the necessity and desirability of a central platform incorporating educational and practical information about YOD. The page with an explanation about what YOD entails was most viewed (360 unique page views). Most time was spent on the page about the diagnostic process (6.5 min). Conclusions: The Dutch RHAPSODY program showed good user acceptability, usability, and user satisfaction. The program met the need for tailored information and support regarding YOD and adds value to existing available support for YOD caregivers. Raising awareness about the program's existence among healthcare professionals may help caregivers to find appropriate post-diagnostic information. The program also provides educational opportunities for healthcare professionals.

Frontotemporal dementia (FTD) typically starts before the age of 65 years, and symptoms differ from other dementias (e.g. Alzheimer's dementia). Spouses are often caregiver and experience difficulty coping with the profound changes in personality and behavior accompanying FTD. Most interventions available to these spouses do not match their need for tailored and flexible psychosocial support. Therefore, tailored content for spouses of persons with FTD was recently incorporated in the proven effective and web-based Partner in Balance intervention. Methods: This feasibility study prospectively evaluated the tailored Partner in Balance content for spouses of persons with FTD. Spouses followed the 8-week intervention, and qualitative and quantitative measures were used to evaluate expectations and barriers prior to participation and aspects of usability, feasibility, and acceptability of content. Additionally, effects were explored regarding caregiver self-efficacy, sense of mastery, stress, depression and anxiety. Results: Twenty-seven spouses caring for a spouse with FTD at home started the intervention. Eventually, 20 completed the intervention (74.1%). Partner in Balance matched the expectations of participating spouses and helped them to find a better balance between caregiving and personal life, acquire more peace of mind, and facilitated coping with behavioral and communication difficulties. Before participation, time restraints were identified as a potential barrier, but afterwards spouses positively evaluated the flexibility of the web-based approach that allowed them to participate at a convenient time and place. They valued the recognizability of the videos and narrative stories on FTD. Post-intervention, spouses qualitatively felt more confident, more at ease, and strengthened as a caregiver. Quantitatively, levels of self-efficacy, anxiety and depression significantly improved. Conclusions: Partner in Balance is a usable, feasible, and acceptable intervention for spouses caring for a spouse with FTD at home. Healthcare organizations could consider adopting Partner in Balance in their daily practice to offer flexible and tailored support to spouses.

Young-onset dementia (YOD) poses specific challenges for caregivers involved. However, most available support does not address their specific needs. Previously, the web-based Partner in Balance intervention showed promising results and facilitated role adaptation in dementia caregivers. Although the web-based format proved a good fit for YOD caregivers, the evaluation showed a need for tailored content on YOD. Therefore, new content was iteratively developed respectively for spouses and other family caregivers of persons with YOD. This study evaluates how caregivers perceived the tailored content. Methods: A pre-post design was used to prospectively evaluate how end-users perceived two tailored versions of the Partner in Balance intervention, one for spouses and one for other family members of people with YOD. After the intervention, participants were interviewed for approximately 60 min in-person or by telephone using the Program Participation Questionnaire. A qualitative deductive content analysis was used to evaluate (1) usability, (2) feasibility and acceptability, (3) perceptions on intervention content. To evaluate if the intervention facilitated role adaptation, preliminary effects were examined using pre-post questionnaires on self-efficacy, mastery, stress, anxiety and depression. Results: Spouses (n = 11) and other family members (n = 14) both positively evaluated the tailored content on YOD and valued that the web-based approach could easily be integrated in daily life. Participants perceived the intervention as usable, feasible and acceptable. Participants valued the recognizability of the content. Goal-setting helped participants to translate the intervention to daily life, although for some participants setting goals was difficult. Caregivers of persons with frontotemporal dementia suggested incorporating specific content to further increase recognizability. After participation, participants felt better equipped for the caregiving role. In line with previously demonstrated effects on generic modules of Partner in Balance, the tailored version increased levels of self-efficacy in the group of other family caregivers, t(12) = 3.37, p = .006. Conclusion: The tailored Partner in Balance intervention was positively evaluated by YOD caregivers. Offering participants more guidance on goal-setting and adding content about frontotemporal dementia may facilitate implementation.

Samenvatting Deze studie betreft de evaluatie van een publiekscampagne geïnitieerd door het Alzheimer Centrum Limburg. Het doel was inwoners uit de provincie Limburg van middelbare leeftijd bewust te maken van de invloed van een gezonde leefstijl op het verminderen van de kans op dementie. Het campagneteam gebruikte berichten via de massamedia en publieksactiviteiten, ondersteund met een campagnewebsite en mobiele applicatie (MijnBreincoach app). De gemeentes Roermond, Landgraaf en Brunssum voerden aanvullend een wijkgerichte campagne, waarbij lokale belanghebbenden werden betrokken bij de vormgeving en uitvoering. De campagne is geëvalueerd door middel van twee onafhankelijke steekproeven pre- en postcampagne. Op populatieniveau werd geen pre-post verschil geobserveerd in mate van bewustwording van het verminderen van het risico op dementie. In een aanvullende analyse bleek dat de groep mensen die na afloop van de campagne aangaven met de campagne in aanraking te zijn gekomen, zich meer bewust waren van het verminderen van het risico op dementie en vaker gemotiveerd rapporteerden te zijn voor gedragsverandering dan de groep mensen die niet in aanraking waren gekomen met de campagne. De wijkgerichte aanpak resulteerde in meer herkenning van campagnemateriaal en de mobiele applicatie. Gezonde voeding en fysieke activiteit werden vaker herkend na afloop van de campagne. Mentale activiteit werd zowel voor- als na de campagne het vaakst herkend als beschermend tegen dementie maar een toename werd niet geobserveerd na de campagne. Abstract This study evaluates a public health campaign initiated by the Alzheimer Center Limburg of Maastricht University. The aim was to increase awareness of the influence of a healthy lifestyle on lowering the risk of dementia in community-dwelling inhabitants of the Province of Limburg (aged 40 – 75 years). The campaign used mass media and public events, supported by a campaign website and mobile application (MijnBreincoach app). An additional district-oriented approach was chosen in the municipalities of Roermond, Landgraaf and Brunssum, in which local stakeholders were involved in the design and execution of campaign-related events. Population-level difference in awareness before and after the campaign was assessed in two independent samples. No pre-post difference was observed in the level of awareness of dementia risk reduction. An additional analyses in the post-campaign sample revealed that the group that reported to have heard of the campaign, was more often aware of dementia risk reduction and reported higher motivation for behavioural change than the group that had not heard of the campaign. The district-oriented approach resulted in better recognition of campaign-material and the mobile application. With regard to the individual lifestyle factors, healthy diet and physical activity were identified more often postcampaign. Cognitive activity was identified most often at both pre- and post-assessment, but there was no increase in awareness after the campaign

Introduction Researchers, policy-makers and healthcare professionals often stress the importance of an early dementia diagnosis. Empirical evidence, however, is scarce leading to a lack of consensus on the necessity of diagnosing dementia early. We emphasise the need for a ‘timely’ diagnosis, that is, one that occurs at the right moment for a person with memory complaints and his/her significant other. As the optimal timing differs between individuals, the implementation of shared decision making (SDM), preferably by the general practitioner (GP), as the start of a diagnostic trajectory, could help to determine this timely moment. SDM, however, is rarely practised with respect to dementia diagnoses. Therefore, in the context of the Shared Decision-Making regarding Dementia Diagnosis project, a patient decision aid (PtDA) for ‘timely’ dementia diagnosis in general practice will be developed. This protocol will describe the planned before and after evaluation of its implementation.Methods and analysis In a mixed-methods pilot study, we will investigate decision-making processes and experiences regarding a diagnostic trajectory before and after the introduction of a PtDA for people with memory complaints, their significant others and their GPs. The ‘before group’ will receive diagnostics as usual from their GPs. The ‘after group’ will use the PtDA. We expect the PtDA to increase the level of SDM and to contribute to a timely and personalised diagnostic trajectory. Data will be collected using semistructured interviews, questionnaires and information retrieved from people with memory complaints’ medical records.Ethics and dissemination This study protocol was approved by the Medical Review Ethics Committee of the Maastricht University Medical Centre. The findings will be published in peer-reviewed international journals and presented at conferences. This study was funded by the public funded Dutch Research Institute for Care and Medical Sciences (ZonMw).Trial registration number NCT04531956.

Abstract Background The total number of people with dementia is increasing worldwide, due to our aging society. Without a disease-modifying drug available, risk reduction strategies are to date the only promising way to reduce dementia incidence in the future. Substantial evidence exists that lifestyle factors contribute to the risk of dementia, such as physical exercise, mental activity and (non-)smoking. Still, most people seem unaware of a relationship between lifestyle and brain health. This paper investigates dementia literacy and knowledge of modifiable risk and protective factors of dementia in a Dutch population-based sample. Methods An online-survey was carried out among 590 community-dwelling people between 40 and 75 years old in the Province of Limburg, the Netherlands. The total group comprises both of a provincial sample (n = 381) and a sample of three specific districts within the province (n = 209). Dementia awareness and knowledge about 12 risk and protective factors was assessed with items derived from the British Social Attitudes (BSA) survey, supplemented with custom items developed by the research team. Results The majority of participants (56%) were unaware of a relationship between lifestyle and dementia risk. Most individuals identified low cognitive activity, physical inactivity and unhealthy diet as dementia risk factors. Particular gaps in knowledge existed with regard to major cardiovascular risk factors such as hypertension, hypercholesterolemia and coronary heart disease. Although the level of awareness varied by age and level of education, most people (70%) were eager to learn more about the topic of brain health, and indicated to be interested in using eHealth (54%) to measure or improve brain health. Conclusions Most people still are unaware of the relation between lifestyle and brain health, indicating the need for public health campaigns. Increasing awareness in the general population about the presence of modifiable dementia risk and protective factors is a crucial first step prior to implementation of preventative measures. Targeting specific subgroups, such as individuals with low socioeconomic status and low health literacy, is essential for the reach and effect of a prevention campaign. Outcome of this study was the rationale for an awareness campaign in The Netherlands, called “MijnBreincoach” (“MyBraincoach”).

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.

Objectives Evaluate the effect of a health promotion campaign aimed at increasing awareness about dementia risk reduction in middle-aged community-dwelling individuals in the Netherlands.Design A 10-month public health campaign using mass media and community participation, supported by eHealth. Population-level difference in awareness before and after the campaign, including variation between demographic groups, was assessed in two independent cross-sectional samples from the same target population.Setting The public health campaign was launched in the Province of Limburg, the Netherlands, targeting all inhabitants aged 40–75 years old. Three specific districts within the Province were chosen for an additional community participation approach, in which local stakeholders were invited to support the campaign.Results No pre- (n=590) post- (n=602) difference was observed in people agreeing to the statement that dementia risk reduction is possible (X2(1)=1.27, p=0.260). For the individual lifestyle factors, physical activity (7.6% increase (X2(1)=7.48, p=0.006)) and healthy diet (10.5% increase (X2(1)=12.37, p≤0.001)) were identified more often as being protective against dementia after the campaign. Of all risk/protective factors assessed, cognitive activity was identified most often at both preassessment (79.4%) and postassessment (80.4%), but there was no increase in awareness (X2(1)=0.17, p=0.677). Self-reported exposure to the campaign was associated with greater awareness and motivation for behavioural change (X2(1)=6.52, p=0.011). Compared with mass media only, the addition of community participation resulted in better recognition of campaign material and the eHealth platform.Conclusions This study was not able to reach a population-level increase of awareness of dementia risk reduction. Two out of the three lifestyle factors that formed the foundation of the campaign were identified more often after the campaign. Those reported having been exposed to the campaign were more aware and more inclined towards behavioural change.

BackgroundIn the Corona Virus Disease 2019 (COVID-19) pandemic, the primary problem is respiratory-related, but there also is increasing evidence of central nervous system (CNS) involvement. This study aims to summarize the literature on neurological manifestations of COVID-19, underlying mechanisms of CNS involvement and cognitive consequences.MethodsA scoping review was conducted with multiple searches in PubMed, PsycInfo, and CINAHL databases. Full text articles in English were included if they involved humans with COVID-19. The search was updated twice, the latest on 19 May 2020.ResultsAfter screening 266 records and cross referencing, 85 articles were included. The articles were case studies, opinion papers, letters to editors, and a few observational studies. No articles were found regarding cognitive consequences in COVID-19 patients. All reported on neurological manifestations and/or underlying mechanisms of CNS involvement in COVID-19.ConclusionNeurological manifestations of COVID-19 vary from mild (e.g. loss of taste and smell, dizziness, headache) to severe (e.g. ischemic stroke, encephalitis). Underlying pathways are suggested to be both indirect (as a result of thrombotic complication, inflammatory consequences, hypoxia, blood pressure dysregulation), and direct (neurotropic properties of the virus). Since most articles were opinion papers and no studies have been conducted on cognitive consequences, further research is warranted.

Abstract 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.

Abstract Background As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers. Methods Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4–7 experts (total N = 38). The interview guide addressed the topics “Complexity and Continuity of Care”, “Formal Services”, and “Public Awareness”. Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries. Results The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness. Conclusions Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.

ObjectiveStudies have shown preliminary support for mindfulness-based interventions benefitting people with dementia and their caregivers. However, most studies focus on these two groups separately. This study examined whether it would be possible and beneficial for people with dementia and their caregiver to jointly undergo an adjusted Mindfulness-Based Stress Reduction (MBSR) training, named TANDEM.MethodsThe 8-week MBSR training was adjusted based on a literature review and interviews with experts (clinicians and mindfulness trainers). Seven couples (a person with early-stage dementia and their caregiver) participated together in the 8-week TANDEM program. Semi-structured qualitative interviews were conducted after completion. Questionnaires (administered before and after the intervention) assessed the primary outcomes of quality of life and psychological distress (stress, anxiety and depressive symptoms). Secondary outcomes were mindfulness, self-compassion, positive mental health, worrying, and perceived burden (for caregivers).ResultsAll participants completed the program and reported beneficial effects (relaxation, awareness, acceptance, and resilience). Most managed to integrate exercises into their daily lives and planned to continue their practice. Participating in a group was considered valuable and supportive. Furthermore, it was appreciated that participants could follow the training together (as a couple). The quantitative results showed a small effect on increased quality of life for caregivers. No substantial decrease in psychological distress was apparent. Caregivers displayed a large increase in mindfulness.ConclusionThe results of this mixed-methods study suggest that an adjusted mindfulness program is feasible and well-received among couples of persons with early-stage dementia and their caregiver, warranting further research in this area.