INTERDEM network celebrates 20 years

Myrra Vernooij-Dassen, INTERDEM Chair, Esme Moniz-Cook,Co-chair and Rabih Chattat, Board member highlight some ofthe network’s key achievements of the past 20 years

Health care proxy and guardianship in Cecz Republic, Italy, The Netherlands, and Spain.

In the paper we report the situations of proxy services and facilities featuring some European countries

Abuses in dementia, and responses of care

In the paper, we provide a few comments on the phenomena of abuse on people with dementia. Alongside a description of the most frequent types of abuses, attention is driven towards theoretical models aimed at contextualizing the phenomena

Italian Revised Memory and Behavior Problems Checklist

Nella pagine seguenti sono riportate le istruzioni di somministrazione della versione Italiana della check list RMBPC di Teri et al. (1992). Le proprietà psicometriche della versione italiana sono state descritte da Ottoboni et al. (In press)

A Multifunctional Adaptive and Interactive AI system to support people living with stroke, acquired brain or spinal cord injuries: A study protocol

Background: Acquired brain injury and spinal cord injury are leading causes of severe motor disabilities impacting a person's autonomy and social life. Enhancing neurological recovery driven by neurogenesis and neuronal plasticity could represent future solutions; however, at present, recovery of activities employing assistive technologies integrating artificial intelligence is worthy of examining. MAIA (Multifunctional, adaptive, and interactive AI system for Acting in multiple contexts) is a human-centered AI aiming to allow end-users to control assistive devices naturally and efficiently by using continuous bidirectional exchanges among multiple sensorimotor information. Methods: Aimed at exploring the acceptability of MAIA, semi-structured interviews (both individual interviews and focus groups) are used to prompt possible end-users (both patients and caregivers) to express their opinions about expected functionalities, outfits, and the services that MAIA should embed, once developed, to fit end-users needs. Discussion: End-user indications are expected to interest MAIA technical, health-related, and setting components. Moreover, psycho-social issues are expected to align with the technology acceptance model. In particular, they are likely to involve intrinsic motivational and extrinsic social aspects, aspects concerning the usefulness of the MAIA system, and the related ease to use. At last, we expect individual factors to impact MAIA: gender, fragility levels, psychological aspects involved in the mental representation of body image, personal endurance, and tolerance toward AT-related burden might be the aspects end-users rise in evaluating the MAIA project

A cross-country comparison of family carers experiences with residential aged care facilities during the COVID-19 pandemic

Background:The number of research projects into residential aged care (RAC) during the COVID-19 pandemic is increasing, however there are limited data on the cross-country comparison of experiences residents living with dementia and their families. Our study aimed to 1) give an overview of the RAC restrictions and changes (visiting policy, governmental & health authorities' advice, service delivery) implemented during the pandemic in Australia, Italy and the UK and 2) and their impact on people with dementia in RAC facilities and their families.Methods:A total of 56 informal family carers of people with dementia residing in RAC took part in semi- structured interviews over the telephone or via Skype in Australia (n=6), Italy (n=25) and the UK (n=26) between July 2020 and March 2021. The interviews were recorded and translated verbatim. Transcripts were analysed by researchers in each country using thematic analysis, then combined across sites.Results:Inductive thematic analysis identified four overarching themes: 1) Adaptations implemented in RAC facilities due to the COVID-19 pandemic in Australia, Italy and the UK; 2) means of communication between RAC facility personnel, people with dementia living in RAC and family members; 3) impact of the implemented restrictions and changes in care provision due to the COVID-19 pandemic on people with dementia in RAC facilities and 4) impact of the implemented restrictions and changes in care provision due to the COVID-19 pandemic on families of people with dementia in RAC facilities. While differences between countries and facilities were identified, the restrictions and changes within the residential care system impacted families' well-being, increased their worries about care quality and safety of people with dementia. The consequences of a lack or modified services for people with dementia included noticeable physical and mental health changes. Although the majority of the facilities implemented some form of video-communication between families and residents, those solutions were unable to replace face-to-face contact.Conclusions:These findings demonstrate the need for implementing safe solutions which might facilitate more frequent in-person contact between families and residents with dementia preventing consequences in mental and physical health in both groups

Measuring the well-being of people with dementia : a conceptual scoping review

Background: Enabling people with dementia to ‘live well’ is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures.Methods: Three scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was then examined.Findings: Six conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties. To date, twenty have been used as outcome measures, with seven showing change over time. A number of identified instruments utilise traditional retrospective Likert-scaling formats, limiting their potential for use with some groups of people with dementia.Conclusion: An assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research on processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based ‘in-the-moment’ measurement. Key words: dementia; outcome measurement; well-being; quality of life; positive psychology; successful aging; lived experienc

Needs-appropriate services for people with young onset dementia: The perspectives of healthcare professionals

Young onset dementia has become a growing challenge in national healthcare systems. Concerns about the situation have already been expressed; however, they mostly report the views of services end-users. Aimed at finding out useful further improvement, interviews documenting the working experiences of professionals addressing healthcare services to people with young onset dementia (YOD) were analysed qualitatively. The interviews resulted in four themes and twelve categories. The themes regarded services’ complexity and responsiveness, the levels of education and knowledge on YOD, the impact that serving people with YOD reflects on staff working experience and quality of life, and a series of proposals aimed at improving services by giving people with YOD and families the provision of care they deserve. Although some of the themes recapped the ones reported in the previous literature, the mixture of internally and externally driven instances represented in the themes depict the complexity of care delivery in the services. Findings are discussed in the light of a pragmatical framework capable of suggesting what changes services should implement to be timely responsive

Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto

Objective: To provide a new perspective on integrated biomedical and psychosocial dementia research. Background: Dementia is being recognized as a multifactorial syndrome, but there is little interaction between biomedical and psychosocial approaches. A way to improve scientific knowledge is to seek better understanding of the mechanisms underlying the interaction between biomedical and psychosocial paradigms. One rationale for integrating biomedical and psychosocial research is the discordance between neuropathology and cognitive functioning. The concept of social health might bridge the two paradigms. It relates to how social resources influence the dynamic balance between capacities and limitations. Hypotheses: Social health can act as the driver for accessing cognitive reserve, in people with dementia through active facilitation and utilization of social and environmental resources. Thereby we link lifestyle social and opportunities to the brain reserve hypothesis. Manifesto: We provide a Manifesto on how to significantly move forward the dementia research agenda

Social health of people with dementia during the SARS-CoV-2 pandemic

Background:Limited access to medical and social services during the coronavirus outbreak has contributed to the exclusion of vulnerable populations, such as people with dementia and older adults. These limitations and the resulting social isolation have highlighted the importance of social relationships and their relationship to the mental health of these people. In the context of dementia, 'social health' (SH) can be defined as the role of social abilities for achieving a dynamic balance between opportunities and limitations. The concept encompasses the capacity and independency of an individual to participate in social activities alongside the influences of the surrounding social network.Methods:Using a qualitative and quantitative approach, we will present social health and its determinants of people with dementia related to social care service closures and self-isolation during the SARS-CoV-2 pandemic. We present an analysis of the survey data from the cross-country population- based study and the semi-structured telephone interviews with people with and without dementia from Poland, UK, Australia and Italy aged 65 and over.Results:Measuring the Social Health Index in relation to experiencing self-isolation and changes in the use of services before and during the pandemic among the people with dementia, allow us to identify the level of SH and its determinants. Also, the qualitative results revealed the indirect consequences of the pandemic-related restrictions in the access to social care service and social isolation. Reduction of social support was significantly related to deficits in social health and well-being.Conclusions:Our results highlight the emerging impact of health the current global epidemiological situation upon social health, with a particular focus on those affected by social disadvantage and isolation