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Breast cancer is the leading cause of cancer death in women worldwide. Recently, the focus of research has shifted from psychiatric, psychological, and social consequences on the woman who gets sick from breast cancer to the impact on the couple. Indeed, the psychosocial perspective has developed the construct of the Quality of Relationship (QoR) that affects the quality of life of both members of the dyad.The aim of this study was to extend knowledge in this field by identifying and analyzing what dimensions of QoR may impact couples' psychosocial adjustment to breast cancer and related treatments.Semistructured interviews explored couples' experiences of breast cancer diagnosis and treatment. Transcripts were analyzed using inductive thematic analysis.Twelve couples were interviewed. Results showed how the dimensions of psychosocial support, dyadic coping, communication, and intimacy are associated and define the construct of QoR, thus affecting the couples' adjustment to breast cancer diagnosis and to the disease pathway.Assessment procedures of couple functioning since and after diagnosis could increase the appropriateness and benefits of integrating existing clinical practice in oncological settings.

Objectives: The COVID-19 pandemic and public health measures caused serious consequences for several population cohorts, including people with dementia in care homes and their families. The aim of this study was to explore the impact of COVID-19 on care home residents with dementia as experienced by family carers in Italy. Specifically, strategies implemented to overcome the pandemic’s constraints, their influence upon care, and consequences for everyday life of residents with dementia and carers were investigated. Methods: Semi-structured interviews explored participants’ experiences of the pandemic, its restrictions and the services’ status during lockdown. Transcripts were analysed via thematic analysis. Results: 26 family carers were interviewed. Three themes emerged: (1) COVID-19 restrictions negatively affected both residents with dementia and family carers, (2) Changing policies in care homes during COVID-19, and (3) Technology use in care homes during COVID-19. COVID-19 restrictions severely affected care home residents with dementia, disrupted their daily living, and accelerated their cognitive decline. Consequently carers’ emotional burdens increased. Care home response strategies (safe visiting and digital solutions) were critical, though they were not enough to compensate for the lack of close in-person contacts. Conclusions: Mixed evidence emerged about the feasibility of care home strategies and their associated benefits. To meet arising needs and possible future pandemic waves, there is a need for updated health strategies. These should prioritise a continuity of therapeutic activities and minimize negative effects on residents’ quality of life, whilst incorporating feasible and accessible digital solutions to provide remote communication and psychological support for family carers.

Background: Physical symptoms play an important role in late-life depression and may contribute to residual symptomatology after antidepressant treatment. In this exploratory study, we examined the role of specific bodily dimensions including movement, respiratory functions, fear of falling, cognition, and physical weakness in older people with depression.Methods: Clinically stable older patients with major depression within a Psychiatric Consultation-Liaison program for Primary Care underwent comprehensive assessment of depressive symptoms, instrumental movement analysis, dyspnea, weakness, activity limitations, cognitive function, and fear of falling. Network analysis was performed to explore the unique adjusted associations between clinical dimensions.Results: Sadness was associated with worse turning and walking ability and movement transitions from walking to sitting, as well as with worse general cognitive abilities. Sadness was also connected with dyspnea, while neurovegetative depressive burden was connected with activity limitations.Discussion: Limitations of motor and cognitive function, dyspnea, and weakness may contribute to the persistence of residual symptoms of late-life depression.

La psicologia dell'invecchiamento è emersa nel secondo dopoguerra come dimensione importante della ricerca e della clinica. Canestrari colse questo ambito della psicologia tempestivamente e nel corso di trent'anni contribuì con ricerche metodologicamente robuste ed organiche elaborazioni teoriche allo sviluppo della disciplina nell'ambito della psicologia non solo bolognese ma italiana. La sua attenzione al tema è stata raccolta da diversi collaboratori nel corso degli anni con contributi diversificati. Da tema marginale la psicologia dell'invecchiamento è diventata una materia di insegnamento nei corsi di Laurea in Psicologia e un'area importante di ricerca.

Considering the adverse outcomes of COVID-19, it is essential to provide adequate support and care for people with dementia and informal carers. Technology can reduce the distress associated with social distancing rules and the decreased access to in-person services. This study aimed to explore the use of technology and its perceived effects across different settings and countries.The sample was composed of 127 informal carers and 15 people with dementia from the UK, Italy, Australia and Poland. Semi-structured interviews explored participants' experiences of using technology and their perceived effects. Transcripts were analysed by researchers in each country using an inductive approach.Three overarching themes were developed: (1) Technology kept us alive during COVID-19; (2) Remote care was anything but easy; (3) Perceived technology limitations. Many similarities emerged between countries supporting the role of technology for being socially engaged, having a routine, and staying active. However, the benefits of technology for health and psychosocial care were more limited. Across countries, barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments. Help and supervision from carers were also necessary and sometimes perceived as an additional burden.Technology can effectively reduce the shrinking world that may be amplified by the pandemic, thus preserving people with dementia's social skills and maintaining family connections. However, for more extensive and well-adapted use of technology in dementia care, actions should be taken to overcome the barriers to the access and use of technology by older and vulnerable people globally.

Dementia is a syndrome where the origins are not fully understood, and we have no cure. New thinking through exploration of paradigms beyond biological approaches has scope to improve knowledge about this complex condition. We aim to explore the role of social health in cognitive decline and the onset of dementia. We performed a scoping and a systematic review of the literature, hypothesizing that social health acts as a driver for stimulating the use of cognitive reserve. The review yielded theoretical pathways and evidence for the association between neurobiological and social health markers. However, lack of conceptual clarity on social health hinders its articulation and associated inclusion of social health markers in epidemiological studies. We therefore apply concept advancement of social health. We developed a conceptual framework, and we present a first testing of our overarching hypothesis. This framework proved to effectively guide the identification of social health markers in our epidemiological data bases. This promotes the identification of modifiable risk factors, which may in turn shape new avenues for preventive interventions.

OBJECTIVE: In this literature review, long term cognitive training’s effect is assessed. The issue is investigated by also considering additional training sessions (also called booster sessions) and their impact on the retention of after-training benefits. The aim is achieved by analyzing four variables: involved population, training domains, effect transferability, and training duration.METHODS: In compliance with the PRISMA statement, a search was conducted in the following database: Scopus, PubMed, WoS, and CINAHL.RESULTS: Out of the 1063 articles we identified initially, 47 studies were eligible.The studies showed that training can maintain cognitive functioning in healthy people or people with MCI, especially for what concerns the six months after the intervention. In people with dementia, the results were controversial. Regarding the booster training sessions, when they were offered to either healthy people or people with MCI, they both maintained or increased training benefits. In contrast, people with dementia appeared to benefit from booster sessions in one study only. It also emerged that single and multi-domain training improved cognitive functioning in either healthy people or people with MCI. In contrast, only multi-domain training was effective in people with dementia. Cognitive training showed both direct and far transfer effects. CONCLUSIONS: Although cognitive training benefits appear to persist, especially when working with healthy people or people with MCI, future studies should focus more on the benefits carried by booster sessions. Moreover, once the analysis of these outcomes is cross-referenced with individual characteristics and preferences, it will specify the long-term benefits factors.

Objectives Most studies have been concerned with the experiences and needs of spouses/partners and adult children of people with dementia. In this review, children and young people's lived experience of parental dementia was investigated. Findings will inform both researchers and professionals in the area of dementia care. Design A systematic literature search was performed in CINAHL, PsychINFO, PubMed, Scopus, and Web of Science. A rigorous screening process was followed, and a checklist for qualitative and observational studies was used to evaluate the methodological quality of the studies. Narrative synthesis of the selected articles was carried out. Results Twenty‐one studies were included and a synthesis of the literature revealed six themes. The first theme concerned the difficulties in dealing with the diagnosis which was often preceded by a long period characterized by uncertainty, confusion, family distress, and conflicts. The second theme discussed changes in family relationships in terms of the role of children and young people in supporting both parents and keeping family together. The third theme described the impact of caring on children and young people who struggled to balance caring tasks and developmental needs. The fourth theme showed consequences on children and young people's personal lives in terms of education/career and life planning. The fifth theme illustrated main adaptation models and coping strategies. The last theme discussed the need for appropriate support and services based on a “whole family” approach. Conclusions The included studies provide the basis for knowledge and awareness about the experience of children and young people with a parent with dementia and the specific needs of support for this population., Key points Children and young people living and/or caring for a parent with dementia are likely to experience relevant changes in family relationships in terms of providing significant support to both parents and keeping family togetherParental dementia is likely to affect children and young people's choices, time perspectives and life planning in relation to education/career, mobility, and personal livesChildren and young people can assume similar levels of caring responsibilities to adult carers, although they may be more vulnerable due to their age and developmental needsAppropriate support and care services are urgently needed to suit the needs of this population within a “whole family” approach

The COVID-19 pandemic has significantly limited access to health and social care support systems for people with dementia and their carers, compounding the severe social restrictions. The aim of this study was to investigate the experiences of COVID-19 among community-dwelling people with dementia and their informal carers in Italy. Specifically, we focused on access to community-based services and adopted solutions to provide support and care during exceptional times. Informal carers, caring for someone with dementia and attending community-based services in Italy, participated in remote semi-structured interviews between October and November 2020. Participants were asked about the effects of social isolation and closure of in-person services on their daily lives as well as the challenges of dementia care. Transcripts were analysed using inductive thematic analysis. 22 informal carers were interviewed. Three themes emerged: (1) Disruptions to people with dementia's lives and health; (2) COVID-19 as an additional stressor for carers; and (3) New ways of caring for people with dementia during COVID-19. Face-to-face social care and social support services were suddenly interrupted and restrictions on social distancing were introduced, thus leading to people with dementia's impaired health and increased behavioural and psychological symptoms. Not only the amount but also the intensity of care increased, with no chance of respite for informal carers. Overall remote activities provided participants with emotional and social benefits, while allowing the continuity of relationships with services staff and users and of care. However, according to carers, a combination of virtual and face-to-face activities could better counterbalance the multiple adverse outcomes of COVID-19. Public health measures should be designed carefully to consider the safety needs and the physical, psychological and social needs of people with dementia. Within a holistic care approach, social care services need to be enabled better to guarantee high-quality care even during pandemic times.

Background: The Surprise Question (‘Would I be surprised if this patient died within 12 months?’) identifies patients in the last year of life. It is unclear if ‘surprised’ means the same for each clinician, and whether their responses are internally consistent. Aim: To determine the consistency with which the Surprise Question is used. Design: A cross-sectional online study of participants located in Belgium, Germany, Italy, The Netherlands, Switzerland and UK. Participants completed 20 hypothetical patient summaries (‘vignettes’). Primary outcome measure: continuous estimate of probability of death within 12 months (0% [certain survival]–100% [certain death]). A threshold (probability estimate above which Surprise Question responses were consistently ‘no’) and an inconsistency range (range of probability estimates where respondents vacillated between responses) were calculated. Univariable and multivariable linear regression explored differences in consistency. Trial registration: NCT03697213. Setting/participants: Registered General Practitioners (GPs). Of the 307 GPs who started the study, 250 completed 15 or more vignettes. Results: Participants had a consistency threshold of 49.8% (SD 22.7) and inconsistency range of 17% (SD 22.4). Italy had a significantly higher threshold than other countries ( p = 0.002). There was also a difference in threshold levels depending on age of clinician, for every yearly increase, participants had a higher threshold. There was no difference in inconsistency between countries ( p = 0.53). Conclusions: There is variation between clinicians regarding the use of the Surprise Question. Over half of GPs were not internally consistent in their responses to the Surprise Question. Future research with standardised terms and real patients is warranted.

Il senso di competenza è un fattore determinante per la buona riuscita delle cure alle persone con demenza. Per poter agire con interventi efficaci occorrono misure efficienti. Il Short Sense of Competence Questionnaire è uno strumento adatto ma poco studiato nel contesto italiano. Dopo averlo tradotto e somministrato localmente, il questionario è studiato assieme a scale per misurare l’affaticamento, il distress, la salute psico-fisica, lo stato dell’umore e l’auto-efficacia dei caregiver, ed i disturbi neuropsichiatrici delle persone con demenza. Le analisi hanno confermato i caratteri originari del questionario ed evidenziato l’affidabilità, la consistenza interna e la validità concorrente. La traduzione effettuata risulta affidabile e adatta ai contesti di prevenzione e intervento con i caregiver delle persone con demenza. The sense of competence is a key factor in the success of care for people with dementia. In order to act with effective interventions, efficient measures are needed. The Short Sense of Competence Questionnaire is a suitable but little studied tool in the Italian context. After having translated and administered it locally, the questionnaire was studied along with scales to measure fatigue, distress, psycho-physical health, mood and self-efficacy of caregivers, and neuropsychiatric disorders of people with dementia. The analyses confirmed the original characteristics of the questionnaire and highlighted the reliability, internal consistency and concurrent validity. The performed translation is reliable and suitable for the contexts of prevention and intervention with the caregivers of people with dementia.

In dementia care, psychosocial interventions can increase people's quality of life with dementia and their caregivers. Despite their effectiveness, their translation into practice lacks the desirable systematicity. Systematic educational programs on psychosocial interventions in dementia will improve this translation, as it prepares professionals to face the complexity of dementia care. This study aimed to systematically map out the extent to which higher education programs in Europe include teaching activities about psychosocial care of dementia.We collected quantitative and qualitative data about 303 higher education teaching activities on psychosocial care in dementia across Europe. The analysis revealed that the number of teaching activities focusing on psychosocial care in dementia was relative.Although the results reflected UNESCO indications, the teaching activities on psychosocial care in dementia appeared less systematized than optimal. As world health agencies recommend, international higher education systems should consider more psychosocial care topics because they can prepare professionals to respond timely and effectively to dementia patients and caregivers' needs.

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.

Background:Emerging evidence describes impacts of the COVID-19 pandemic upon people living with dementia and their informal carers, however without evidence-based global comparisons to date. The aim of this international study was to explore and compare the impact of COVID-19 and associated public health restrictions on the lives of people living with dementia and informal carers and access to dementia care across five countries.Methods:People with dementia and informal carers from the UK, Australia, Italy, India, and Poland participated in remote semi-structured interviews. Participants were asked about their experiences of the pandemic and how restrictions have impacted on their lives and care. Transcripts were analysed by researchers in each country using thematic analysis, then combined across sites.Results:Fifteen people living with dementia and 111 informal carers participated across the five countries. Four themes emerged: (1) Limited access and support; (2) Technology and issues accessing remote support; (3) Emotional impact; and (4) Decline of cognitive and physical health reported by carers. Whilst variations were noted, the pandemic has indirectly affected people with dementia and carers across all five countries. The pandemic removed access to social support services and thus increased carer burden. Remote services were not always provided and were limited in benefit and usability for those with dementia. Carers frequently described noticeably deteriorating cognitive and physical health in people with dementia.Conclusions:The pandemic has amplified dementia as a global public health problem, and both people affected by the condition ad their carers need support to better access vital support services to live well. This is even more important with emerging new waves and new variants of the virus affecting different countries, in our globally connected world.

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.

Background:Social distancing rules and the closure of services associated with the COVID-19 pandemic have strongly impacted the physical and mental health of people with dementia. Digital technologies can represent an effective means to compensate for the distress associated with social distancing rules and the decreased use of in-person services. More specifically, technologies such as smartphones, tablets, and smart home systems can minimize the negative effects of social distancing and isolation, and the pressure on health and care systems. Indeed, they can provide a continuity of care and social connectedness, while decreasing exposure to risk. However, barriers such as digital literacy and lower income households can impede the access and use of digital technologies. The aim of this international study was to compare the use of technology by people with dementia from different care settings, and their informal carers across four countries (Italy, UK, Australia, and Poland).Methods:People with dementia and informal carers were invited to participate in semi-structured interviews. Verbatim transcripts were analysed by researchers in each country using inductive thematic analysis.Results:A total of 141 people with dementia and carers (47 in Italy; 50 in the UK; 18 in Australia; 26 in Poland) were interviewed. The analysis identified three overarching themes: 1) different uses of technology (three subthemes); 2) benefits of technology (three subthemes); 3) limitations of technology (three subthemes). Results show that calls, video calls, and group-chats were effectively used across countries to guarantee the continuity of relationships with professionals, families, and small groups of peers. Telemedicine was used with varying levels of satisfaction. Furthermore, the benefits experienced by carers exceeded those for people with dementia. Similar barriers were reported across countries, and were strictly associated with dementia deficits, low level digital literacy, and the need for carer’s supervision.Conclusions:These international findings highlight the importance to maximise the benefits related to the use of technology according to people with dementia’s impairment and care context. Moreover, it should be complementary to in-person care which should be provided, at least to some extent, even during pandemic times.

Background: The Meeting Centres Support Programme (MCSP) offers a combined approach to providing practical, emotional and social support to people living with mild to moderately severe dementia and their family carers in the community. Methods: A mixed methods explanatory design was used. The evaluation took place within the framework of the international Joint Programme – Neurodegenerative Disease Research (JPND) – MEETINGDEM study in nine Meeting Centres in Italy, Poland and the United Kingdom. Eighty-seven people with dementia and 81 family carers completed a user evaluation survey after three months and 83 people with dementia and 84 carers after 6 months of participation in MCSP. Thirty-two people with dementia and 30 carers took part in focus groups after nine months. Results: The percentage of people with dementia who were very satisfied with the programme increased significantly over time (p = 0.05). The majority of carers reported that they felt less burdened after three months of participation in MCSP (48.1% much less; 35.4% a little less). After six months, this percentage increased significantly to 91% (p = 0.04, 57.7% much less; 33.3% little less). Focus group analysis showed that people with dementia and carers in all countries/centres improved their ability to maintain emotional balance. Conclusions: The MCSP is highly appreciated by people with dementia and carers in all countries and it confirms the results of previous research into MCSP in the Netherlands. Our findings indicate that MCSP is a model that can help its users to increase their capacity to deal with the challenges caused by dementia and can promote emotional balance.

Most studies have been concerned with the experiences and needs of women with breast cancer and spouses/partners separately. In this review, the relationship dynamics that characterize the couple’s experience of breast cancer treatment were investigated. Findings will inform both researchers and professionals in the area of oncology. A systematic literature search was performed in CINAHL, PsychINFO, MEDLINE, Scopus and Web of Science. A checklist for qualitative and observational studies was used to evaluate the methodological quality of the studies. Seventeen studies were included, and the synthesis of the literature revealed five domains that characterized the dyadic process: dyadic coping strategies, psychosocial support, communication, the couple’s sexual life and spirituality. The included studies provide the basis for knowledge and awareness about the experience of couples with cancer, the specific dimensions enacted during the breast cancer treatment path and the type of responses that are associated with a positive couple’s adjustment to the disease.

Measuring Quality of Life (QOL) can be difficult due to its individual character. To explore the value of personalized QOL measurement for people with dementia, personalized versions of two dementia-specific QOL scales (Dementia quality of Life (DQoL) and Quaility of Life in Alzheimer's Disease (QoL-AD)) were constructed. This study investigated whether the personalized measures are more valid to detect variations in QOL than their standard versions for people with mild to moderate dementia, with sufficient internal consistency. Moreover, the relationship between the personalized QOL measures and severity of dementia was investigated. Finally, the study explored the differences between countries regarding the personalized overall QOL and differences in the importance of QOL domains. This explorative one-group design study used baseline data from the MEETINGDEM study into the implementation of the Meeting Centres Support Programme in Italy, Poland and the UK. The personalized versions of the DQoL and QoL-AD were reliable, but not more valid than their standard versions. No relationship between severity of dementia and personalized QOL was found. While no differences were found between countries for the overall QOL score, some QOL domains were valued differently: people with dementia from the UK rated self-esteem, mood, physical health, energy level and the ability to do chores around the house significantly less important than people from Italy and Poland. The personalized versions of the DQoL and QoL-AD may offer dementia care practice important insights into what domains contribute most to an individual’s QOL.

Objectives Although young-onset dementia (YOD) affects the whole family system, this population is still under-represented in literature, and no progress in care provision has been made. Hence, additional evidence is necessary to understand how family and social relationships are affected by YOD and care challenges, as to provide recommendations for clinical practice and service improvement from a family perspective. Method Family carers were recruited via one memory clinic and the local Alzheimer's Associations in Italy. Semi-structured interviews explored their experiences with YOD, the impact of the condition on their lives, family and social relationships, and the support and care they received. Transcripts were coded by three researchers and analysed using inductive thematic analysis. Results Thirty-eight interviews were conducted with 26 spouses and 12 adult children. Three themes emerged: 1) Problems around diagnosis, 2) Lack of post-diagnostic support, and 3) Living with YOD as a family. Overall, problems occurred across the dementia pathway. Without appropriate support, it was difficult for families to adjust to living with YOD and to the associated changes in family roles and relationships. Conclusions Since optimal care depends on good family relationships, better support for families in the adaptation to condition would likely benefit patient care while ensuring social inclusion and health equity for vulnerable groups.

Objectives: This is the first study to focus on the role and impact of a psychosocial intervention, the Meeting Centre Support Programme (MCSP), for people living with dementia and mild cognitive impairment (MCI) on the experience of stigmatisation across three different European countries. Method: A pre/post-test control group study design compared outcomes for 114 people with dementia (n=74) and MCI (n=40) in Italy, Poland and the UK who received either the MCSP or usual care (UC). The ‘Stigma Impact Scale, neurological disease’ (SIS) was administered at two points in time, 6 months apart. The Global Deterioration Scale (GDS) was used to assess the level of cognitive impairment. Results: Although statistical analysis did not show any significant differences between MCSP and UC at pre/post-test for the 3 countries combined, there were significant results for individual countries. In Italy, the level of SIS was significantly lower (p=0.02) in the MCSP group following the intervention. The level of Social Isolation increased significantly (p=0.05) in the UC group at follow-up in Poland. The level of Social Rejection was significantly higher (p=0.03) over time for UK participants receiving MCSP compared to UC. Conclusion: The experience of stigma by people living with dementia and MCI is complex and there may be different country specific contexts and mechanisms. The results do not enable us to confirm or disconfirm the impact of a social support programme, such as MCSP, on this experience. Difficulties in directly measuring the level of stigma in this group also requires further research.

Introduction: Dementia represents a public health priority worldwide. The number of studies consistently reporting the positive effects of psychosocial interventions for people with dementia, families and professional caregivers is constantly increasing. Despite the evidence, research results struggle to be transferred into higher education and then into practice. In order to foster the translational process, the SiDeCar, Eu E+ project funded through the KA2 asset, will develop an international curriculum of studies aimed at increasing psychosocial practices knowledge in dementia care. Method: Data about the European state of the art in HE in dementia care is being collected via an ad-hoc online survey and then matched to the European, National and Regional recommendations for dementia care. Results: Preliminary data reveals that in Europe the 19% of the provided teachings belong to first HE level, the 80% to the second level, and the 1% to the third level. Among them, the 38% are courses, 23% are modules and 39% are topics delivered within course and modules not directly referable to dementia care themes. The taught issues appear having a theoretical focus in the 18% of cases, being related to the practice of care in the 53% and to mixed issues in the remaining 29%. Finally, most of the teachings are provided in central/western institutes (89%). Discussion: Aimed at producing intellectual output such as, academic syllabi for the HE students, manuals for academics, guidelines for welfare stakeholders, recommendations for politicians, the SiDeCar project will work to foster the bridging process of translation from research into practice by supporting those universities and institutes that still lack of curricula centred on psycho-social care in dementia towards the relevance of the psycho-social approach in dealing with dementia-related problems.

Alzheimer’s disease, other causes of dementia and cardiovascular diseases have many common risk factors, as hypertension, hypercholesterolemia, obesity, diabetes, nicotinism, low physical activity. There is enough evidence-based research proving that brain vascular disease leads to earlier manifestation and accelerates the progress of dementia (also in Alzheimer ´s disease and other neurodegenerations) People with higher risk of dementia, Alzheimer’s disease, or other cognitive disorders certainly belong among the frequent, cardiology out-patient departments.However, their risk or even cognitive disorder remains often unrecognised. Primary, secondary and tertiary prevention may significantly reduce the incidence of dementia in population. Timely recognition of cognitive disorder and dementia and their proper management may have positive impact on quality of life and care of patients with cardiologic diagnoses. The aim is to propose a nursing care algorithm of cardiology patients with respect to the risk or occurrence of cognitive disorder. Methods: literature review, secondary data analysis, Czech Alzheimer's society consultation, workshop with health care specialists. This topic has been also addressed by the international project ERASMUS+ (Sidecar) -analysis of specialised health professionals´ education programmes and curriculum. Results: Algorithm of care of cardiology out-patient department patients has been proposed: providing information about main risk factors and first symptoms of dementia, targeted nursing/medical assessment focusing on cognition, testing of cognitive functions. Conclusion: Providing information about dementia, cognitive disorder, their risk factors, and focused assessment may improve care of patients in the cardiology out-patient department and their quality of life.

Il presente lavoro riporta il risultato del processo di traduzione in Italiano del questionario Motivations of Marathons Scales (Masters, Ogles, & Jolton, 1993). La traduzione fu preparata seguendo le linee guida per la traduzione e l’adattamento transculturale di misure psicometriche auto-somministrate e pubblicata sul web tramite la piattaforma Google Moduli in modo da raccogliere dati anonimi. Al questionario hanno risposto 1091 atleti. Per poter essere inclusi nello studio ogni partecipante doveva dichiarare di aver corso almeno una maratona competitiva nella sua carriera. Nonostante l’impossibilità di valutare l’affidabilità nel tempo delle risposte (i.e., test-retest), i risultati indi- cano un buon livello di coerenza interna ( = .95) e che la traduzione delle nove scale fattoriali originali ha prodotto livelli di adeguatezza simili ai valori riportati nel lavoro originario. The present work describes the results of the process of translation we performed over the questionnaire Motivations of Marathons Scales (Masters et al., 1993). The translation from the original English form to the Italian version was achieved following the guidelines for translation and cross-cultural adaptation of psychometric self-administered measures. Once translated, the questionnaire was published on the web via the Google platform Modules to collect anonymous data. The respondents declared to be 1030 marathon runners. Notwithstanding the impossibility to evaluate test-retest reliability, results indicated that the translated form of the questionnaire has good internal consistency ( = .95) and that the nine original scales showed levels of fitness that correspond to the ones reported in the original work.

Although psychosocial interventions are receiving increased validation, actions to translate evidence into practice are inconsistent. This study is one pillar of the Erasmus+ project entitled “Skills in DEmentia Care - Building psychosocial knowledge and best practice in dementia care” (SiDECar). In light of the importance of policies in establishing what is needed to meet dementia challenges, the aim of this study was to analyze European national strategies/plans to check whether they include references or full sections devoted to psychosocial care. The amount and content of the information along with its coherence with scientific evidence were investigated. European strategies/plans were searched on the “Alzheimer Europe” and the “Alzheimer Disease International” websites and, if not available, Google and Google Scholar were used. Keywords were: “psychosocial care”, “psychosocial interventions”, “non-pharmacological care”, “non-pharmacological interventions” and “non-medical”. A thematic analysis was carried out to identify: a) main dimensions associated with the topic of psychosocial care, and b) ways of psychosocial interventions delivery. An ad-hoc table was also developed to collect information on the following features relevant to clinical practice: a) type of psychosocial interventions; b) target population/s); c) staff qualifications; d) agencies or services involved in the provision of psychosocial care. The area of psychosocial interventions was addressed by 18 documents out of 28 found across Europe. Main dimensions were: “Quality of care” and “Education/Training”. Psychosocial interventions were just mentioned as an appropriate care in Finland, Israel, Switzerland and Wales. The remaining documents provided information on ways of psychosocial interventions delivery which were classified as follows: “Referral of non-pharmacological approach”, “Person-centred diagnosis and care”, “Guidelines implementation”, “Education and training programs”, “Networking and strengthening of health and social services”. As for the other categories, almost no mention was made of type of interventions, professionals and services involved and, if available, it was not in line with scientific evidence. Overall, European dementia policies are characterized by high fragmentation, incompleteness and low systematization. Indeed, in 10 out of 28 policy documents no mention of psychosocial interventions was found and, as for remaining documents, it is still unclear what such provision would actually look like, how it would be enabled, and how it would be assessed. In order to improve people with dementia and their carers’ quality of life, multiple and simultaneous actions are needed. Among them, as to be effective, policies should be based on a comprehensive and well-integrated system of care where the topic of psychosocial care and interventions is embedded.

Introduction: Skills In DEmentia Care - Building psychosocial knowledge and best practice in dementia care (SiDECar) is an Erasmus+ project funded under the KA2 Strategic Partnerships for Higher Education (2018-2021). Partners are: the University of Bologna (Italy, project leader), Maastricht University (Netherlands), the University of Salamanca (Spain) and the Institute for Postgraduate Medical Education (Czech Republic). SiDECar general aim is to promote the psychosocial knowledge in dementia care through the introduction of an international curriculum of studies. Research has shown that psychosocial interventions can be effective in helping people with dementia (PWD), their informal and formal caregivers to cope with disease related problems. However, multiple factors act as barriers for the translation of empirical evidence into higher education (HE) and then into clinical practice. Among them, a lack of general knowledge and the public stigma often result in the prevalence of medical care models of assistance for PWD and their families. Indeed, HE curricula specifically focused on psychosocial care in dementia are few thus not fulfilling the job market needs. Method and Results: We developed a survey aimed to investigate HE curricula specifically focused on psychosocial care in dementia across Europe. Preliminary results showed that 19% of the delivered teachings belong to the first level, 80% to the second level, and 1% to the third one (Bologna Process, 1999). Among them 38% are courses, 23% are modules, and 39% are topics dealt with in courses or modules not directly concerning dementia care themes. As for their content, they have a theoretical focus in the 18% of cases while they relate to care practice in the 53%, and to mixed issues in the 29%. Finally, the majority of teachings are distributed in central/western institutes (89%). Discussion: Evidence-based curricula specifically focused on psychosocial care in dementia should be designed and delivered as to develop professional skills and competences for students interested in this field. In this sense, SiDECar expected outputs are also materials, guidelines, manuals and recommendations along with public campaigns of awareness towards the importance of the psycho-social perspective in improving quality of life of PWD, informal and formal caregivers

Introduction: Dementia is a health priority worldwide. Research shows that psychosocial interventions can improve the quality of life of people with dementia and their caregivers. However, an actual gap concerns the implementation of empirical evidence into clinical practice. In this regard, knowledge base driven curricula in psychosocial care can improve skills and competences of the Higher Education (HE) students interested in this field. Skills In DEmentia Care (SiDECar) is an Erasmus+ project funded under the KA2 Strategic Partnerships for HE (2018-2021) aimed at promoting psychosocial knowledge in dementia care through the introduction of a transnational HE curriculum focused on it. Partners are: the University of Bologna (Italy), Maastricht University (the Netherlands), the University of Salamanca (Spain) and the Institute for Postgraduate Medical Education (Czech Republic). Method: A survey was implemented to identify courses on psychosocial care delivered across Europe. Furthermore, European guidelines/recommendations along with national dementia plans were analyzed to investigate the actual state of psychosocial care. These actions will lead to identify core topics for the development of academic courses and/or curricula. Results: Preliminary results showed that 19% of delivered teachings belong to the first level, 80% to the second level, and 1% to the third one (Bologna Process, 1999). 38% are courses, 23% are modules, and 39% are topics dealt within courses or modules not strictly related to dementia care themes. They have a theoretical focus in the 18% of cases while they relate to practice in the 53% and to mixed issues in the 29%. Most of them are distributed in central/western institutes/universities (89%). Conclusions: Results will be discussed linking the evidence about the actual situation of HE in psychosocial care across Europe and the marginal role of psychosocial care in national, regional and European plans, guidelines and recommendations.

La demenza ad esordio precoce (YOD) è una particolare forma di demenza che colpisce persone con età inferiore ai 65 anni. Nonostante essa conduca a conseguenze materiali e psicologiche peculiari in tale fascia di età, essa è ancora scarsamente studiata. Lo scopo del presente studio è quello di esplorare le esperienze e i bisogni delle persone con YOD e dei loro caregivers. Hanno partecipato alla ricerca 13 persone con YOD e 32 familiari. I soggetti sono stati sottoposti a interviste semi-strutturate che sono state audio-registrate, trascritte e analizzate tramite la metodologia qualitativa dell’analisi del contenuto. I temi emersi sono cinque: la diagnosi, i servizi e le strutture, l’impatto sulla persona con demenza, sul coniuge e sui figli. Dall’analisi dei dati si evince una scarsa conoscenza della malattia da parte dei professionisti, che spesso si accompagna a tempi più lunghi per ricevere la diagnosi e a elevate possibilità di ottenere una misdiagnosi. Inoltre, i servizi e le strutture in Italia risultano pochi e inadeguati in quanto rivolti ad anziani e non in grado di rispondere ai bisogni di cura specifici di questi pazienti. Nello specifico, dal presente studio sono emersi il bisogno delle persone con YOD di rimanere attivi e di socializzare; mentre, relativamente ai coniugi e ai figli risultano rilevanti il bisogno di informazioni pratiche rispetto alla gestione della malattia e di sostegno psicologico. In particolare, dalle interviste dei figli emergono le ripercussioni che la patologia ha avuto sul percorso di studi, sul lavoro, e persino nelle relazioni interpersonali, la difficoltà di accettare la patologia e la percezione di lutto anticipato. Il presente studio vuole fungere da apripista per ricerche analoghe nel contesto nazionale con il fine ultimo di ottenere indicazioni utili all’ideazione di servizi e attività specifici per questi pazienti e per le loro famiglie.

We examined the costs and cost-effectiveness of the Meeting Centre Support Programme (MCSP) implemented and piloted in the UK, Poland and Italy, replicating the Dutch Meeting Centre model. Dutch Meeting Centres combine day services for people with dementia with carer support. Data were collected over 2015–2016 from MCSP and usual care (UC) participants (people with dementia-carer dyads) at baseline and 6 months. We examined participants’ health and social care (HSC), and societal costs, including Meeting Centre (MC) attendances. Costs and outcomes in MCSP and UC groups were compared. Primary outcomes: Persons with dementia: quality-adjusted life years (EQ-5D-5L-derived); QOL-AD. DQoL was examined as a secondary outcome. Carers: Short Sense of Competence Questionnaire (SSCQ). Incremental cost-effectiveness ratios (ICER) and cost-effectiveness acceptability curves were obtained by bootstrapping outcome and cost regression estimates. Eighty-three MCSP and 69 UC dyads were analysed. The 6-month cost of providing MCSP was €4,703; participants with dementia attended MC a mean of 45 times and carers 15 times. Including intervention costs, adjusted 6-month HSC costs were €5,941higher in MCSP than in UC. From the HSC perspective: in terms of QALY, the probability of cost-effectiveness was zero over willingness-to-pay (WTP) ranging from €0 to €350,000. On QOL-AD, the probability of cost-effectiveness of MCSP was 50% at WTP of €5,000 for a one-point increase. A one-point gain in the DQoL positive affect subscale had a probability of cost-effectiveness of 99% at WTP over €8,000. On SSCQ, no significant difference was found between MCSP and UC. Evidence for cost-effectiveness of MCSP was mixed but suggests that it may be cost-effective in relation to gains in dementia-specific quality of life measures. MCs offer effective tailored post-diagnostic support services to both people with dementia and carers in a context where few evidence-based alternatives to formal home-based social services may be available.

Objectives: Until now little research has been done to answer the question of whether people with dementia experience stigma. No previous studies investigated possible differences between countries and cultures. Therefore, the aims of this study were to compare the experience of stigma (with social isolation, social rejection and internalised shame as components) among people with dementia and mild cognitive impairment (MCI) (n = 180) in Italy (n = 79), Poland (n = 47) and the United Kingdom (UK) (n = 54); and to investigate possible relationships with demographical and clinical outcomes. Methods: A one group multinational cross-sectional design was used. Stigma was measured with the Stigma Impact Scale (SIS), quality of life aspects with Dementia Quality of Life scale (DQOL) and Quality of Life Alzheimer’s Disease scale (QOL-AD), social support with Duke Social Support Index (DSSI), cognitive functioning with Global Deterioration Scale (GDS). Results: The level of stigmatisation (SIS) among study participants varied from 2 to 65 (median = 33.5; Q1 = 27; Q3 = 41). People with dementia in the UK experienced a higher level of stigmatisation than people in Italy and Poland. The experienced stigmatisation negatively correlated with social support (DSSI; rho = −0.42, p = 0.000) and quality of life (QOL-AD; rho = −0.39, p = 0.000). People who experienced a higher level of stigmatisation scored higher in negative mood DQOL subscale (rho = 0.28, p = 0.0002). Conclusion: There is a strong need for research into the individual experience of people with dementia across the world. This could help in providing support and care services that match their experience, needs, preferences; and in designing well informed awareness campaigns based on their voice.

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 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 amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response 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 into 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.

Objectives: The MEETINGDEM research project aimed to implement the combined Dutch Meeting Centre Support Programme (MCSP) for community-dwelling people with dementia and caregivers within Italy, Poland and UK and to assess whether comparable benefits were found in these countries as in the Netherlands. Method: Nine pilot Meeting Centres (MCs) participated (Italy-5, Poland-2, UK-2). Effectiveness of MCSP was compared to usual care (UC) on caregiver outcomes measuring competence (SSCQ), mental health (GHQ-12), emotional distress (NPI-Q) and loneliness (UCLA) analysed by ANCOVAs in a 6-month pre-test/post-test controlled trial. Interviews using standardised measures were completed with caregivers. Results: Pre/post data were collected for 93 caregivers receiving MCSP and 74 receiving UC. No statistically significant differences on the outcome measures were found overall. At a country level MC caregivers in Italy showed significant better general mental health (p = 0.04, d = 0.55) and less caregiver distress (p = 0.02, d = 0.62) at post-test than the UC group. Caregiver satisfaction was rated on a sample at 3 months (n = 81) and 6 months (n = 84). The majority of caregivers reported feeling less burdened and more supported by participating in MCSP. Conclusion: The moderate positive effect on sense of competence and the greater mental health benefit for lonely caregivers using the MCSP compared to UC as found in the original Dutch studies were not replicated. However, subject to study limitations, caregivers in Italy using MCSP benefitted more regarding their mental health and emotional distress than caregivers using UC. Further evaluation of the benefits of MCSP within these countries in larger study samples is recommended.

Background: Shared decision-making (SDM) can be a way for staff to adopt international recommendations advocating the involvement of nursing home residents and their family members in care planning and the development of personalized care plans.Objective: The main aim was to analyze the effects of training nursing home staff in the implementation of SDM on agreement of residents' 'life-and-care plans' with the recommendations (primary outcome) and on family caregivers' quality of life and sense of competence, and staff's job satisfaction (secondary outcomes).Methods: In the intervention condition, staff attended a training program on the use of SDM with residents and family caregivers in the care planning process. In the control condition, care planning as usual took place. For the primary outcome, in-depth qualitative and quantitative analyses of the care plans were performed. Multivariate Permutation Tests were applied to assess the impact on secondary outcomes.Results: Forty-nine residents and family caregivers and 34 professionals were involved. Overall, many of the care plans developed during the intervention showed a high level of agreement with the care planning recommendations. Both Italian and Dutch care plans showed improvement in the number of clear problem statements (p < 0.001). In Italy, significant improvements (p < 0.05) were also found regarding specific care objectives, documentation of objectives met, and of residents and families' involvement. No impact was found on secondary outcomes.Conclusion: The involvement of residents and family caregivers in care planning contributed to an improvement of the residents' care plans, but it did not have an effect on family caregivers and staff outcomes.

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.