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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. 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. 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. Limitations of motor and cognitive function, dyspnea, and weakness may contribute to the persistence of residual symptoms of late-life depression. [ABSTRACT FROM AUTHOR]

Background: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. Methods: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face‐to‐face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non‐profit organisations. Results: Forty‐nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single‐point‐of‐contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. Conclusions: These findings provide a first insight on dementia inequalities across Europe, generate cross‐country learnings on how to address these inequalities in dementia, and can underpin further solution‐focused research that informs policy and key decision makers to implement changes. Key points: There are numerous similar barriers to accessing dementia care across different European countries.Some of the key challenges to equitable dementia care are lack of workforce knowledge, lack of information, stigma, financial barriers, and lack of communication among care professionals.Cultural challenges, postcode lottery, and service suitability were also raised as key barriers to dementia care. [ABSTRACT FROM AUTHOR]

In the context of Italian aging population, clinical psychology can play a crucial role in enabling older adults to cope with the multiple challenges associated with the aging process and disease-related issues. This manifesto was written by the 'Clinical Psychology of Aging' working group, which is part of the Italian Association of Psychology (AIP) consisting of academic experts in this field who collaborated to elaborate the contents highlighting the most relevant dimensions of the clinical psychology of aging. Specifically, the aging process was addressed from multiple points of view (i.e., theoretical perspectives, multidimensional assessment, interventions), and the role of the clinical psychologists in the National Health System along with training issues were discussed in the attempt to specify the unique contribution of the clinical psychology in aging. [ABSTRACT FROM AUTHOR]

Background: Older adults with mood disorders constitute a heterogeneous group in a complex spectrum interlinked with physical comorbidities. Worldwide, Bipolar disorders in older people (OABD) remain underestimated and underdiagnosed. OABD is challenging in the clinical setting and is associated with adverse outcomes (increased risk of anti-social behaviour triggered by inappropriate drugs and increased incidence of health deficits, including cancer). This article aims to describe the state of the art of OABD in the Italian framework and provide a new field of research. Methods: We performed an overview of the literature, selecting our target population (over 65 years) and synthesising the main challenging issues. By exploiting the Italian database from the Minister of Health in 2021, we analysed epidemiological data in the age range 65–74 years and 75–84 years old. Results: Females showed the highest prevalence and incidence in both groups, with a regional difference across the country but more evident in the Autonomous Provinces of Bolzano and Trento for the 65–74 years range. Several projects recently focused on this topic, and the urgency to define better the epidemiological framework is mandatory. Conclusions: This study represented the first attempt to report the comprehensive Italian framework on OABD aimed at fostering research activities and knowledge. [ABSTRACT FROM AUTHOR]

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. Semi-structured interviews explored participants' experiences of the pandemic, its restrictions and the services' status during lockdown. Transcripts were analysed via thematic analysis. 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. 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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: 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. Methods: 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. Results: 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. Conclusions: 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. Key points: During COVID‐19 technology allowed people with dementia and informal carers to be socially engaged, have a routine, and stay active.Benefits of technology in dementia health and psychosocial care were limited.Barriers to the access and use of technology included lack of digital literacy, dementia severity, and lack of appropriate digital environments.The pandemic should prompt actions towards a more extensive and well‐adapted use of technology in dementia care. [ABSTRACT FROM AUTHOR]

Background: Most people with dementia are cared for by family members. The workload associated with caregiving tasks is often associated with physical, mental, and social impairment. In line with the WHO's Global Action Plan on Dementia 2017‐2025 (WHO, 2017), calling for the provision of affordable and accessible interventions for dementia caregivers, we tested an eHealth intervention to improve self‐efficacy and mental health in dementia caregivers. Method: 8‐week eHealth psycho‐educational intervention aiming at increasing the knowledge of neurocognitive disorders, their at‐home management, and the presence of national and local support services. The intervention was conducted by an experienced psychotherapist assisted by a professional expert (e.g., geriatrician, educator, social worker, lawyer and advocacy patient organisations), according to the topic of each meeting. A pre‐post study design was used and validated psychosocial self‐report questionnaires were administered before and after the intervention (e.g., State‐Trait Anxiety Inventory ‐STAI‐Y1‐2, Zarit Burden Interview ‐ZBI, Beck Depression Inventory‐II BDI‐II, Revised Scale of Caregiving Self‐Efficacy ‐RSCSE). Pre‐post differences were tested with paired t‐test, correlations between scales with Pearson correlation coefficient Result: 41 caregivers (mean age: 57; range 31‐82; female: 78%; children: 61%) completed the study. The intervention had high participation (88% attended at least seven meetings). Following the intervention, the self‐efficacy regarding the ability to respond to the patient's disruptive behaviours effectively improved (RSCSE‐RDB subscale: t(40) = ‐2.817, p = 0.007), anxiety and burden levels decreased (STAI‐Y1: t(40) = 3.170, p = 0.003; STAI‐Y2: t(40) = 2.327, p = 0.025; ZBI: t(40) = 2.290, p = 0.027), while depression scores did not change significantly (BDI‐II: t(40) = 1.164, p = 0.251). Correlation analysis showed that the change of STAI‐Y1 was positively associated with the change of STAY‐Y2 (r = 0.440, p = 0.004), and the increase of RSCE‐RDB subscale was positively associated with the improvement of caregiver burden (r = 0.430, p = 0.005). Conclusion: Our study showed that the eHealth intervention improved the caregiver's ability to deal effectively with the disruptive behaviours of patients, and this change was associated with a reduction of caregiver burden. The results and participation rates support the implementation of online psycho‐educational interventions to meet the need for knowledge of disease management and avoid detrimental effects on caregivers' health. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

30 subjects with BJHS (Hypermobile) (M age = 32.3 yr., SD = 10.4) and two control groups, 25 healthy subjects (Healthy) (M age = 33.9 yr., SD = 9.3) and 30 fibromyalgic patients (Fibromyalgic) (M age = 32.2 yr., SD = 9.4), were given the Symptom Checklist-90-R, the Illness Behavior Questionnaire, the Female Functional Symptoms Frequency (FFF) and the Male Functional Symptoms Frequency (MFF), derived from the DSM-III-R, evaluating functional somatic disturbances and their intensity, and the Symptom Questionnaire. The mean scores for the Hypermobile group showed significant psychological distress and increased frequency and intensity of somatic symptoms. Scores on Anxiety and Somatic Symptoms, General Hypochondriasis, Disease Conviction, Affective Disturbance, Denial, and Irritability were significantly higher in the Hypermobile than in the Healthy group. Elevated scores were found for the Fibromyalgic group on the Illness Behavior Questionnaire subscales for Psychological vs Somatic Focus, Disease Affirmation, and Discriminating Factors when compared with the Hypermobile group. Considerable emotional symptoms were detected which should not be underestimated by physicians when establishing an integrated biopsychosocial therapy.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: Technology can assist and support both people with dementia (PWD) and caregivers. Recently, technology has begun to embed remote components. Timely with respect to the pandemic, the present work reviews the most recent literature on technology in dementia contexts together with the newest studies about technological support published until October 2020. The final aim is to provide a synthesis of the timeliest evidence upon which clinical and non-clinical decision-makers can rely to make choices about technology in the case of further pandemic waves. Methods: A review of reviews was performed alongside a review of the studies run during the first pandemic wave. PsycInfo, CINAHL, and PubMed-online were the databases inspected for relevant papers published from January 2010. Results: The search identified 420 articles, 30 of which were reviews and nine of which were new studies meeting the inclusion criteria. Studies were first sorted according to the target population, then summarized thematically in a narrative synthesis. The studies targeting technologies for PWD were categorized as follows: monitoring and security purposes, sustaining daily life, and therapeutic interventions. Each category showed potential benefits. Differently, the interventions for caregivers were classified as informative, psycho-education programs, psychosocial-supportive, therapeutic, and cognitive/physical training. Benefits to mental health, skills learning, and social aspects emerged. Conclusions: The evidence shows that technology is well-accepted and can support PWD and caregivers to bypass physical and environmental problems both during regular times and during future pandemic waves. Nevertheless, the lack of a common methodological background is revealed by this analysis. Further and more standardized research is necessary to improve the implementation of technologies in everyday life while respecting the necessary personalization. [ABSTRACT FROM AUTHOR]

To provide a new perspective on integrated biomedical and psychosocial dementia research. 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. 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. We provide a Manifesto on how to significantly move forward the dementia research agenda. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: People with dementia are often marginalized and excluded from influence, also in relation to dementia research. There is, however, a growing requirement for inclusion through Patient and Public Involvement (PPI), but there is still limited knowledge on how researchers can fully benefit from the involvement of people with dementia in the development and testing of psychosocial interventions. This paper describes the results of a pan‐European consultation with people with dementia, synthesizing their views on outcomes of psychosocial interventions. Objective: To involve people with dementia in establishing what are meaningful outcomes when participating in psychosocial interventions. Setting and participants: Consultations took place at four divergent sites across Europe, involving twenty‐five people with dementia from nine European countries. Methods: The methods used for the consultation were developed through an iterative process involving people with dementia. Data from the consultation were analysed from a thematic analysis approach. Results: The results suggested that people with dementia wish to participate in interventions that enhance their well‐being, confidence, health, social participation and human rights. This highlights a need for improvements in psychosocial research to capture these outcomes. Discussion and conclusions: Involving people with dementia in discussions of psychosocial interventions has enhanced our understanding about meaningful outcome measures in research and methods of data collection. This study suggests that new outcome measures in psychosocial research are needed where concepts of positive psychology and social health can guide innovation and outcome measurement. [ABSTRACT FROM AUTHOR]

ABSTRACTBackground:The "pathway to care" concept offers a helpful framework for preparing national dementia plans and strategies and provides a structure to explore the availability and accessibility of timely and effective care for people with dementia and support for their informal carers. Within the framework of the JPND-MEETINGDEM implementation project the pathways to regular day-care activities and the Meeting Centers Support Programme (MCSP), an innovative combined support form for people with dementia and carers, was explored.Methods: An exploratory, descriptive, qualitative, cross-country design was applied to investigate the pathways to day care in several regions in four European countries (Italy, Poland, United Kingdom, and the Netherlands).Results: Before implementation of MCSP, of the four countries the United Kingdom had the most structured pathway to post-diagnostic support for people with dementia. MCSP introduction had a positive impact on the pathways to day-care activities in all countries. MCSP filled an important gap in post-diagnostic care, increasing the accessibility to support for both people with dementia and carers. Key elements such as program of activities, target group, and collaboration between healthcare and social services were recognized as success factors.Conclusions: This study shows that MCSP fills (part of) the gap between diagnosis and residential care and can therefore be seen as a pillar of post-diagnostic care and support. Further dissemination of Meeting Centers in Europe may have a multiple impact on the structure of dementia services in European countries and the pathways to day care for people with dementia and their carer(s). [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: MEETINGDEM investigated whether the Dutch Meeting Centres Support Programme (MCSP) could be implemented in Italy, Poland, and the UK with comparable benefits. This paper reports on the impact on people living with dementia attending pilot Meeting Centres in the 3 countries.Methods: Nine pilot Meeting Centres (MCs) participated (Italy-5, Poland-2, UK-2). Effectiveness of MCSP was compared with Usual Care (UC) on outcomes measuring behavioural and psychological symptoms (NPI), depression (CSDD), and quality of life (DQoL, QOL-AD), analysed by ANCOVAs in a 6-month pre-test/post-test controlled trial.Results: Pre/post data were collected for 85 people with dementia and 93 carers (MCSP) and 74 people with dementia /carer dyads' receiving UC. MCSP showed significant positive effects for DQoL [Self-esteem (F = 4.8, P = 0.03); Positive Affect (F = 14.93, P < 0.00); Feelings of Belonging (F = 7.77, P = 0.01)] with medium and large effect sizes. Higher attendance levels correlated with greater neuropsychiatric symptom reduction (rho = 0.24, P = 0.03) and a greater increase in feelings of support (rho = 0.36, P = 0.001).Conclusions: MCSPs showed significant wellbeing and health benefits compared with UC, building on the evidence of effectiveness from the Netherlands. In addition to the previously reported successful implementation of MCSP in Italy, Poland, and the UK, these findings suggest that further international dissemination of MCSP is recommended. [ABSTRACT FROM AUTHOR]

This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group ‘Dementia Outcome Measures - Charting New Territory’. Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research. [ABSTRACT FROM AUTHOR]