The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce.

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.

The Role of the Quality of Relationship in Couples Facing Treatment for Breast Cancer: A Qualitative Italian Study.

INTRODUCTION: 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. OBJECTIVE: 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. PATIENTS AND METHODS: Semistructured interviews explored couples' experiences of breast cancer diagnosis and treatment. Transcripts were analyzed using inductive thematic analysis. RESULTS: 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. CONCLUSION: Assessment procedures of couple functioning since and after diagnosis could increase the appropriateness and benefits of integrating existing clinical practice in oncological settings.

The impact of COVID-19 restrictions and care home strategies on residents with dementia as experienced by family carers in Italy.

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.

Use of technology by people with dementia and informal carers during COVID-19: A cross-country comparison.

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.

COVID-19 and community-based care services: Experiences of people living with dementia and their informal carers in Italy.

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.

A qualitative 5-country comparison of the perceived impacts of COVID-19 on people living with dementia and unpaid carers.

BACKGROUND: Emerging evidence shows an impact of the COVID-19 pandemic on people living with dementia and informal carers, without any evidence-based global comparison to date. The aim of this international study was to explore and compare the perceived 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: Informal carers and people living with dementia who were residing in the community in the UK, Australia, Italy, India, and Poland were interviewed remotely between April and December 2020. 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 inductive thematic analysis. 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 very limited in benefit and usability for those with dementia. As a result, carers appeared to notice reduced cognitive and physical health in people with dementia. Particular differences were noted between India and Poland vs. the UK, Italy, and Australia, with less impact on care provision in the former due to limited uptake of support services pre-pandemic based on cultural settings. CONCLUSIONS: The pandemic has amplified dementia as a global public health problem, and people affected by the condition need support to better access vital support services to live well.

Family experience of young-onset dementia: the perspectives of spouses and children.

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.

Relationship Dynamics among Couples Dealing with Breast Cancer: A Systematic Review.

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.

Assistive Technologies in Dementia Care: An Updated Analysis of the Literature.

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.

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

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

The Integration of Psychosocial Care into National Dementia Strategies across Europe: Evidence from the Skills in DEmentia Care (SiDECar) Project.

There is evidence supporting the use of psychosocial interventions in dementia care. Due to the role of policy in clinical practice, the present study investigates whether and how the issue of psychosocial care and interventions has been addressed in the national dementia plans and strategies across Europe. A total of 26 national documents were found. They were analyzed by content analysis to identify the main pillars associated with the topic of psychosocial care and interventions. Specifically, three categories emerged: (1) Treatment, (2) Education, and (3) Research. The first one was further divided into three subcategories: (1) Person-centred conceptual framework, (2) Psychosocial interventions, and (3) Health and social services networks. Overall, the topic of psychosocial care and interventions has been addressed in all the country policies. However, the amount of information provided differs across the documents, with only the category of 'Treatment' covering all of them. Furthermore, on the basis of the existing policies, how the provision of psychosocial care and interventions would be enabled, and how it would be assessed are not fully apparent yet. Findings highlight the importance of policies based on a comprehensive and well-integrated system of care, where the issue of psychosocial care and interventions is fully embedded.

Children and young people's experience of parental dementia: A systematic review.

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.

The Focal Play Therapy: An Empirical Study on the Parent-Therapist Alliance, Parent-Child Interactions and Parenting Stress in a Clinical Sample of Children and Their Parents.

The present study aims to investigate the outcomes of the Focal Play Therapy with Children and Parents (FPT-CP) in terms of parent-therapist alliance, parent-child interactions, and parenting stress. Thirty parental couples (N = 60; 30 mothers and 30 fathers) and their children presenting behavioral, evacuation and eating disorders took part to the study. Through a multi-method longitudinal approach, data were collected at two time points (first and seventh sessions) marking the first phase of the intervention specifically aimed to build the alliance with parents, a crucial variable for the remission of the child's symptoms (and to the assessment of the child's symptoms within family dynamics.) Therapeutic alliance was assessed by the Working Alliance Inventory by therapists and parents. Parent-child interactions and parenting stress were evaluated using the Emotional Availability Scales and the Parenting Stress Index, respectively. Results showed that a positive parent-therapist alliance was developed and maintained during the first seven sessions. Furthermore, parent-child interactions significantly improved on both parents' and child's dimensions. However, parenting stress levels remained unchanged between the two time points. The findings should enrich scientific knowledge about the role of parental engagement in preschool child-focused treatments as to better inform practice and improve the quality of care for children and their families.

The Focal Play Therapy: A Clinical Approach to Promote Child Health and Family Well-being.

Eating and evacuation disorders can cause serious health problems for children. Early recognition and early treatment require a multifactor intervention based on a collaborative relationship between pediatricians, psychotherapists and other health professionals. In this context the Focal Play Therapy (FPT) with children and parents is a psychodynamic model of intervention that improves parental ability to cope with child's difficulties. Parental engagement in child interventions allows to understand child's symptoms within family dynamics and to build an alliance with parents that represents a crucial variable of an effective psychological support for children and families. In the present study data were collected from 17 parental couples and their preschool children at two time points (1st and 6th FPT sessions) marking the first phase of this intervention. This phase was aimed to the assessment of child's symptoms within family relationships and to the promotion of the alliance with parents. Families were in treatment at the Psychological Consultation Center for Children and Parents located at the Department of Psychology of the University of Bologna (Italy). This Center provides health assessment and intervention services to children and their families. We investigated the alliance from both parents and therapist points of view along with other parental and child outcome variables implied in clinical works with children and families. Alliance scores were obtained through the Working Alliance Inventory and the System for Observing Family Therapy Alliances, two measures used in individual and family settings, respectively. Parenting stress and parent-child interactions were investigated using the Parenting Stress Index and the Emotional Availability Scales. Furthermore, paired t-tests were run to detect changes on parental and child variables. Findings advise that special attention should be paid to the building of an early alliance with parents. In this regard the FPT is specifically designed to promote the parent-therapist alliance in the context of child health and family well-being.

Mother-Toddler Play Interaction in Extremely, Very Low Birth Weight, and Full-Term Children: A Longitudinal Study.

Introduction: Although preterm birth represents a risk factor for early mother-infant interactions, few studies have focused on toddlerhood, an important time for the development of symbolic play, autonomous skills, and child's socialization competences. Moreover, no study has looked at the effect of birth weight on mother-child interactions during this period. Expanding on the available literature on prematurity, the main objective of this study was to explore the quality of mother-toddler interactions during play, using a longitudinal research design, as well as taking into account the effect of birth weight. Method: 16 Extremely Low Birth Weight (ELBW), 24 Very Low Birth Weight (VLBW), 25 full-term children, and their mothers were recruited for the present study. Mother-child dyads were evaluated at 18, 24, and 30 months of child age. Ten minutes of mother-child play interaction were recorded and later coded according to the Emotional Availability Scales (EAS). Furthermore, the child's level of development was assessed through the Griffiths Scale, and its contribution controlled for. Results: ELBW dyads showed an overall lower level of emotional availability, compared to VLBW and full-term dyads, but no main effect of birth weight was found on specific EA dimensions. Moreover, a significant effect of child age emerged. Overall scores, and Child Responsiveness and Involvement scores improved over time, independently of birth weight. Lastly, a significant effect of the interaction between birth weight and child age was found. Between 18 and 30 months, the overall quality of the interaction significantly increased in ELBW and VLBW dyads. Additionally, between 18 and 30 months, VLBW children significantly improved their responsiveness, while their mothers' sensitivity, structuring, and non-intrusive behaviors improved. In contrast, no change emerged in full-term dyads, although scores were consistently higher than those of the other groups. Discussion: Birth weight affects the quality of mother-toddler interactions. Monitoring the relational patterns of preterm dyads during toddlerhood is important, especially in the case of ELBW children.

Pattern of mother-child feeding interactions in preterm and term dyads at 18 and 24 months.

Literature on mother-child feeding interactions during the transition to self-feeding in preterm populations is lacking, particularly through observational methods. The present research study aims to look at the longitudinal patterns of mother-toddler feeding interactions, comparing preterm and full term dyads. To this end, a multi-method approach was used to collect data from 27 preterm to 20 full-term toddlers and their mothers. For each dyad, mother-child interactions were observed during the snack time at 18 and 24 months of age and then assessed through the Italian version of the Feeding Scale. Higher scores on the scale indicate a less healthy pattern of interaction. Additionally, at both points in time, mothers completed the BDI-II questionnaire as a screen for maternal depression and the child's developmental stage was assessed using the Griffiths Scales. A series of repeated measures Analysis of Variances were run to detect differences in feeding interactions between the two groups at the time of assessment. Our results show that preterm dyads report overall higher levels of maternal negative affection, interactional conflicts, and less dyadic reciprocity during the meal compared to full-term dyads. Additionally, longitudinal data show that dyadic conflict decreases in both groups, whereas the child's food refusal behaviors increase in the preterm group from 18 to 24 months. No differences were reported for both the BDI-II and the child's development for the two groups. The results reveal that regardless of maternal depression and the child's developmental stage, the two groups show different trajectories in the pattern of feeding interactions during the transition to self -feeding, at 18 and 24 months, with overall less positive interactions in preterm mother-child dyads.