Maria Marques

Needs and quality of life of people with middle-stage dementia and their family carers from the European Actifcare study. When informal care alone may not suffice

ABSTRACT 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.

Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

BackgroundPeople 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.MethodFocus 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.ResultsOverall, 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.ConclusionFurther 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.

Family Issues in Behavioral and Psychological Symptoms of Dementia: Unraveling Circular Pathways?

Family issues are at the heart of biopsychosocial and systemic approaches to the way we understand and manage dementia. Based on evidence and clinical experience, this chapter revisits the circularities involving behavioral and psychological symptoms of dementia (BPSD) and the family. Negative and positive consequences of the caregiving experience are considered within the particular context of BPSD. We then analyze some of the “appalling dangers of family life” – i.e., negative ways in which family determinants, including expressed emotion, may impact BPSD. We see that these do not overshadow the family’s role as the most powerful resource throughout the disease. Although further research is needed, both directions of causality ought to be considered in clinical situations: the principle of circularity, as described by the Milan School of Family Therapy, is a heuristic assumption regarding part of the overall BPSD picture. This is discussed at the end of the chapter, together with examples of mediator or modulator variables such as personality and relationship quality, which deserve further exploration.

An architecture to support responsive production in manufacturing companies

This paper proposes an architecture aiming at promoting the convergence of the physical and digital worlds, through CPS and IoT technologies, to accommodate more customized and higher quality products. The architecture combines concepts such as cyber-physical systems, decentralization, modularity and scalability aiming at responsive production. Combining these aspects with virtualization, contextualization, modeling and simulation capabilities it will enable self-adaptation, situational awareness and decentralized decision-making to answer dynamic market demands and support the design and reconfiguration of the manufacturing enterprise.