Background: Because the pattern of illnesses changes in an aging population and many people manage to live well with chronic diseases, a group of health care professionals recently proposed reformulating the static WHO definition of health towards a dynamic one based on the ability to physically, mentally and socially adapt and self-manage. This paper is the result of a collaborative action of the INTERDEM Social Health Taskforce to operationalize this new health concept for people with dementia, more specifically the social domain, and to formulate directions for research and practice to promote social health in dementia. Method: Based on the expertise of the Social Health Taskforce members (N = 54) three groups were formed that worked on operationalizing the three social health dimensions described by Huber et al.: (1) capacity to fulfil potential and obligations; (2) ability to manage life with some degree of independence; (3) participation in social activities. For each dimension also influencing factors, effective interventions and knowledge gaps were inventoried. After a consensus meeting, the operationalizations of the dimensions were reviewed by the European Working Group of People with Dementia (EWGPWD). Results: The social health dimensions could be well operationalized for people with dementia and are assessed as very relevant according to the Social Health Taskforce and EWGPWD. Personal (e.g. sense of coherence, competencies), disease-related (e.g. severity of cognitive impairments, comorbidity), social (support from network, stigma) and environmental factors (e.g. enabling design, accessibility) that can influence the person with dementia's social health and many interventions promoting social health were identified. Conclusion: A consensus-based operationalization of social health in dementia is proposed, and factors that can influence, and interventions that improve, social health in dementia identified. Recommendations are made for research and practice.

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. 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. 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. 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.

Background:Reports in the literature on the effects of behavioral problems in patients with dementia on the decision to institutionalize the patient have shown conflicting results. Few studies have taken into account the possibility that specific behavioral problems may have differential effects on the decision to institutionalize the patient. Moreover, it is probably not patient behavior itself that causes nursing home placement (NHP), but caregivers’ emotional reaction to it. The aim of the present study was to examine the impact of specific behavioral subsyndromes and caregivers’ emotional reaction on NHP.Methods:A total of 119 patients with dementia and their informal caregivers were followed up for 2 years. Time to NHP was measured in months from the date of the baseline interview to the date of NHP. Behavioral disturbances in the patient and caregivers’ emotional reactions were measured with the Neuropsychiatric Inventory (NPI). Cox regression analyses were used to determine the probability that caregivers would institutionalize the patient when patient behavioral problems or caregiver distress were present at baseline.ResultsForty-one percent of the patients were institutionalized during the 2-year follow-;up. Caregiver distress related to patient behavior was a significant predictor of NHP, while behavior in itself did not predict NHP. Contrary to our expectations, we did not find a differential impact of specific aspects of problem behavior. Children caregivers, especially daughters, were associated with shorter time to NHP compared to spouses.Conclusions:Our findings indicate that the caregiver's emotional reaction to patient behavior is more important than problem behaviors per se in the decision to institutionalize patients. Interventions aimed at teaching caregivers strategies to better manage difficult patient behaviors may provide caregivers with the necessary resources to continue care at home. Future interventions need to account for the specific needs and problems of different caregiver groups.