Intergenerational caring: a systematic literature review on young and young adult caregivers of older people.

BACKGROUND: The theme of young family caregivers of older relatives is still partially uncovered, although the phenomenon is increasing worldwide. This Systematic Literature Review discusses methodological and content issues of ten articles covering this topic, in order to contribute to increase the knowledge and provide suggestions for designing effective support services for adolescent young caregivers. To this purpose, the findings of this review are framed within the caregiving stress appraisal model (renamed CSA model) elaborated by Yates' and collegues, in order to highlight differences between young caregivers and the older ones. METHODS: Multiple databases including PubMed, Web of Science, Scopus, ProQuest - Psychology Database, CINAHL Complete - EBSCOHost were used to carry out a systematic review of the literature. Additional references were retrieved from experts contacted and research knowledge. The selected articles underwent both methodological appraisal and contents analysis: for every article an appraisal score was calculated and themes and sub-themes were identified. RESULTS: Out of the ten included studies three were mixed methods, six qualitative and one quantitative. Nine reached a high quality methodological score and one medium. Four main themes emerged from the content analysis: aspects of the caregiving relationship; effects of caregiving; coping strategies; recommendations for services, policy and research. CONCLUSIONS: Selected studies explored practical features of the relationship between young caregivers and older family members (tasks performed, motivations, coping strategies) and highlighted both positive and negative outcomes on young people's everyday life condition and future development. Nevertheless, these evidences were often limited to small samples that did not allow to make generalizations. More studies are needed including large samples in order to deepen the different aspects of caregiving and design tailored support services.

Impact of working situation on mental and physical health for informal caregivers of older people with Alzheimer's disease in Italy. Results from the UP-TECH longitudinal study.

OBJECTIVES: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. METHODS: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. RESULTS: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. CONCLUSIONS: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.

The awareness, visibility and support for young carers across Europe: a Delphi study.

BACKGROUND: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17 years old. METHODS: A two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs. RESULTS: Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care. CONCLUSIONS: In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.

The impact of the COVID-19 pandemic on frail older people ageing in place alone in two Italian cities: Functional limitations, care arrangements and available services.

The study aimed to explore and compare effects of lockdown, due to the COVID-19 pandemic in 2020, on frail older people living alone at home in Brescia and Ancona, two urban cities located respectively in Northern and Central Italy. This country was the Western epicenter of the first wave of the pandemic (February-May 2020), which affected the two cities differently as for infections, with a more severe impact on the former. A follow-up study of the IN-AGE research project (2019) was carried out in July-September 2020, by means of telephone interviews, involving 41 respondents. Semi-structured questions focused on the effects of the first wave of the pandemic on their mobility and functional limitations, available care arrangements, and access to health services. The lockdown and social distancing measures overall negatively impacted on frail older people living alone, to a different extent in Ancona and Brescia, with a better resilience of home care services in Brescia, and a greater support from the family in Ancona, where however major problems in accessing health services also emerged. Even though the study was exploratory only, with a small sample that cannot be considered as representative of the population, and despite differences between the two cities, findings overall suggested that enhancing home care services, and supporting older people in accessing health services, could allow ageing in place, especially in emergency times.

Perceived Loneliness, Social Isolation, and Social Support Resources of Frail Older People Ageing in Place Alone in Italy.

This paper presents some findings from the IN-AGE ("Inclusive ageing in place") study, which the authors carried out in 2019 in Italy. It explores the available social support resources for frail older people with functional limitations ageing in place alone, and possible links between their social isolation and perceived loneliness. The authors conducted qualitative/semi-structured interviews involving 120 participants aged 65 years and over, and used a mixed-methods analysis (quantitative/qualitative). The main results show the family as the main help resource for daily activities, but also for intimate confidences against social isolation, especially when said relatives live close. Family confidants are less present when seniors are supported by friends/neighbours or/and public services. Moreover, the family is valuable for decreasing loneliness, although not always. However, some older people feel particularly alone when they are supported by public services. Such a complex context draws attention on the need of support for frail seniors living alone and could provide insights for policymakers on adequate policies for preventing and managing loneliness and social isolation in later life. This is especially relevant when family (and other) resources are not available or scarce, also considering the opportunities offered by technology, which can help seniors remain socially connected to relatives, friends and their overall community.

Depends on whom you ask: Discordance in reporting spousal care between older women and men across European welfare states.

PURPOSE: We aim to investigate systematic differences in reporting spousal care between caregivers and cared-for persons and their possible effects for the analysis of care regimes and correlation of care with health. MATERIALS AND METHODS: Using information on care provided/received from the Survey on Health, Ageing and Retirement in Europe (SHARE), we estimate the prevalence of spousal care and discordance between caregivers and cared-for persons in the reporting of care among caregiving dyads. Multinomial regressions are used to estimate systematic differences in reporting spousal care. We then use multivariable logistic regressions to assess the association between discordance in reporting informal care and carer's self-rated health (SRH) and depression using the EURO-D scale. RESULTS: Only 53.9 % of dyads report care that is confirmed by both spouses. Multinomial regressions show that agreement on care being provided/received is more common when women are caregivers, while men are likely to underreport when providing or receiving personal care. Prevalence of spousal care across care regimes is sensitive to who reports care. There is no effect on the association of care with SRH regardless of who identifies the carer, while the magnitude and statistical significance of the association between depression symptoms and care varies according to the choice of respondent. CONCLUSIONS: Informal care may be understated across Europe when relying solely on carer self-identification through description of tasks in surveys. From a policy standpoint, relying on self-identification of carers to access support or social benefits may potentially reduce the take-up of such benefits or support.

Active Aging Policies Targeting Health and Care During the of COVID-19 Pandemic: A Systematic Review and Thematic Analysis of Italian National and Regional Policies.

A primary objective of active aging policies is to promote health and optimize care for individuals. In aging societies, the maintenance of good physical and mental health and the management of risk factors are of utmost importance. Few research studies have analyzed active aging policies related to health and care from a multi-level governance perspective. The aim of this study was to determine what national and regional policies in these domains existed in Italy. We conducted an inductive thematic analysis of health- and care-related policies on active aging, selected through a systematic review in 2019-2021. The analysis uncovered three themes at both the national and regional levels (health promotion and disease prevention, health monitoring, and informal caregivers) and two additional themes at the regional level (access to health and social care services, and mental health and well-being). According to the findings, COVID-19 partially influenced the evolution of active aging policies.

Functional and Psychosocial Profile of Older People Living in Nursing Homes: Findings from the European Survey of Health, Ageing and Retirement in Europe (SHARE).

BACKGROUND: This paper is based on results from the Survey of Health, Ageing and Retirement in Europe (SHARE), exploring many aspects (health, economic situation and welfare) of the European population aged 50+. Differently from many other international studies, SHARE includes persons living in nursing homes or residential care facilities as part of its sample. The aim of this paper is to provide a socio-demographic, functional and psychosocial snapshot of older residents in nursing homes in Europe. METHODS: This paper uses data from SHARE Wave 8/2020, carried out in 27 European countries. A quantitative/descriptive approach explores the prevalence of older people aged 65+ living in residential facilities as mapped by the SHARE survey across Europe, with regard to associated dimensions, i.e., socio-demographic, family relationship, perceived health/main diseases, functional and psychological status. RESULTS: These show that older residents live mainly in Central and Northern Europe, are aged 80+, female and widowed. A small social network (SN) size is often reported. Health is perceived, above all, as being fair-poor, and the presence of long-term illness is high, with several chronic health conditions and functional limitations. The reported quality of life (QoL) is low for most respondents, with moderate-low satisfaction with life. CONCLUSION: The analysis depicts a profile of seniors needing residential care in Europe, and provides useful insights for policymakers, to better sustain this frail population group, and to allow and improve access to high-quality long-term care (LTC) in Europe. Our findings could also be of help to train health professionals, and potentially drive the research towards the exploration of new housing solutions for seniors. This would in turn contribute to the effective implementation of European initiatives to strengthen LTC systems.

Personalized Technological Support for Informal Caregivers of Older People with Dementia: A Co-Design Approach Involving Potential End Users and Healthcare Professionals in Three Focus Groups in Italy.

Informal/family caregivers (ICs) of older people with dementia (PwD) can suffer from depression and burnout. However, digital solutions can potentially provide innovative ways to facilitate care provision. The aim of this study was to analyze the opinions of end users (EUs), i.e., PwD aged 65 years and over and their ICs and healthcare professionals (HPs), on the use of digital technology to support care activities. Qualitative data were collected during the co-design phase of the European project "DemiCare-Personalized support for informal caregivers of people with dementia". This study focused on the Italian context and included two PwD, three ICs, and seven HPs. Three focus groups were held in April-June 2022. Qualitative data were analyzed using MaxQDA 2020 software. Seven thematic areas were identified: daily activities, care tasks, information needs, support received, relationship with and expectations from technology, functionality of the DemiCare integrated system, and ethical issues. Smart devices seemed to be received positively by ICs and HPs, although older PwD seemed to have difficulty accepting the technology. Overall, despite the low number of participants, it seems important and potentially effective to consider the needs and preferences of PwD during exploratory co-design to allow social interactions with them. This study was not registered.

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15-17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020-2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

Role and Characteristics of Personal Care Assistants of Frail Older People with Functional Limitations Ageing in Place in Italy.

When older people become frail with functional limitations, and age alone in place, caring support is fundamental for performing daily living activities. The present study aimed to explore the current role and characteristics of privately hired Personal Care Assistants (PCAs) of older people in Italy, in light of the decreasing care availability of the family and the low provision of public services. In the study "Inclusive ageing in place" (IN-AGE), 120 qualitative interviews were carried out in 2019, involving frail older people living at home in three Italian regions: Lombardy, Marche, and Calabria. A content analysis was conducted, in addition to some simple quantifications of statements. Results showed the support of PCAs in 27 cases, mainly when health issues of seniors were referred. In addition, informal and irregular employment contracts were reported. Moreover, a comparison between PCA and Domestic Home Help (DHH, 44 cases), highlighted how they even more provide very similar functions (i.e., home and personal care). The role of PCA emerged as crucial in Italy, especially in the South. Thus, to boost up home services seems necessary for allowing ageing in place, also by integrating PCAs in formal public Long-Term Care (LTC), and by providing incentive systems for regular hiring.

Active Ageing in Italy: An Evidence-Based Model to Provide Recommendations for Policy Making and Policy Implementation.

In ageing societies, active ageing (AA) has been recognized as a useful conceptual tool due to its holistic approach to social issues and recognised benefits from it at multiple levels (micro, meso and macro) for addressing demographic challenges. However, one of the main problems identified in relation to AA, is to turn into practice, at the policy making level, the many positive aspects that it promises at the conceptual level, as is demonstrated by the available evidence based on experiences carried out in some European countries. As an advancement in this field, through an original research experience carried out in Italy between 2019 and 2021, this study for the first time provides a model for producing recommendations for policy making and policy implementation in the field of AA, by managing the main problematic aspects related to the operationalization, at the policy making level, of the AA concept, with the potential for replication in other countries. The main challenges were identified, as well as the way to deal with them through a model, for a proper operationalization of the AA concept, based, among other aspects, on a solid international framework concerning this matter, on a mainstreaming ageing approach (at the public policy level) and on a wide stakeholder participation through co-decisional tools. A multi-level (national-regional-local) perspective was adopted to consider cultural and geographical diversity, among other challenges.

Factors Worsening and Mitigating the Consequences of the COVID-19 Outbreak on the Overall Health of Informal Caregivers of Older People with Long-Term Care Needs Living in Germany and in Italy.

Population ageing and the higher prevalence of multimorbidity in later life are increasing the demand for Long-Term Care (LTC) worldwide; this has been exacerbated by the COVID-19 pandemic. As in Europe and beyond, the bulk of care for frail older people is carried out by informal caregivers. This study aimed at understanding the factors affecting the overall worsening health of informal caregivers of older people with LTC needs living in Germany and Italy during the outbreak. To this purpose, 319 informal caregivers (149 in Germany and 173 in Italy) were surveyed online in 2020-2021. A logistic regression analysis was performed by country, to obtain an adjusted estimate of the risk of worsening of caregivers' health. This risk increased by 42% for German caregivers compared to Italian ones, despite the former receiving more formal services. This may depend on different quality standards of LTC services and caregivers' expectations, and on differing policies concerning migrant care workers (MCWs) during the outbreak, who could not enter Germany and were "trapped" at care recipients' homes in Italy. Results call for in-home care reforms and policies guaranteeing more effective caregiver support, home care services and fairer working condition for MCWs in both countries.

Changes in Volunteering of Older Adults in the Time of the COVID-19 Pandemic: The Role of Motivations.

This paper elucidates the relationship between possible changes in volunteering experienced by older people during the COVID-19 pandemic, and their motivation to volunteer, as well as the direct or indirect experience of COVID-19 symptoms. Given the well-known positive benefits of volunteering in older age both for individuals (in terms of improved health and wellbeing) and society at large, there is a paucity of studies on older volunteers in the time of COVID-19. In this context, older people's volunteering was highly challenged due to age-based physical and social restrictions put in place by national governments, which have been considered as ageist by a large part of the gerontological scientific community. This study was carried out on a sample of 240 Italian older volunteers. The results suggest that during the COVID-19 pandemic, especially older volunteers driven by social goals (e.g., opportunities to have relationships with others) were able to continue volunteer activities without needing to change them. The study also clarified that having directly or indirectly experienced COVID-19 symptoms did not influence changes in voluntary activities of older people. These results have important policy implications, given the indication that through volunteering, older individuals may try to counter the undesired calls by the governments for self-isolation and physical distancing. It is important that in emergency situations involving older people, policy makers should not treat them as only recipients of health and social care, but also as useful providers of help in the community.

Difficulties and Needs of Adolescent Young Caregivers of Grandparents in Italy and Slovenia: A Concurrent Mixed-Methods Study.

Many adolescent young caregivers (AYCs) care for a grandparent (GrP) with chronic disease, especially in countries with no or low developed long-term care systems and/or level of awareness of and policy responses to young caregivers. This mixed-methods study aimed at shedding light on the needs and difficulties faced by a sample of 162 adolescents aged 15-17, caring for GrPs, living in Italy (87) and Slovenia (75), respectively. A multiple linear regression model was built for the quantitative data. Qualitative data were content analysed using an open coding process. Italian and Slovenian respondents reported a moderate amount of caring activity and relatively high positive caregiving outcomes. Nevertheless, one out of three AYCs reported health problems due to their caring responsibilities. Compared to their Italian counterparts, Slovenian respondents were supported to a lesser extent by public services. Italian respondents faced communicative and practical problems; Slovenian AYCs experienced mainly emotional discomfort. AYCs from both countries requested emotional and practical support from formal services and family networks. Further, Slovenian AYCs requested emotional support and a personalized learning plan from schoolteachers. Support measures aimed at training AYCs of GrPs on geriatric care are recommended to address specific issues related to ageing and long-term care needs.

The Impact of COVID-19 on the Health and Experience of the Carers of Older Family Members Living with Dementia: An Italian-Hungarian Comparative Study.

This quantitative study (n = 370) compares the pandemic-related experiences of the family carers of older people living with dementia during the first wave of the pandemic, in two countries with different care regimes: Italy (Mediterranean) and Hungary (Eastern European). It aims at answering the following research questions: (1) How did the pandemic affect the subjective health of carers, and what were their experiences with care-related worries and workload? (2) What factors significantly predicted negative changes in these experiences? (3) What were carers' main difficulties during the first pandemic wave? Results have shown that carers in both samples reported a worsening in mental health (Italy/Hungary: M = 2.25/2.55, SD = 0.93/0.99), and Italian carers also in general health (M = 2.54, SD = 0.98) (on a scale of 1 to 5, with values under "3" representing deterioration). Carers in both samples experienced high worry levels (Italy/Hungary: M = 4.2/3.7, SD = 0.93/0.89) and feeling overwhelmed with care tasks (M = 3.2/3.7, SD = 1.3/1.3) (on a scale of 1 to 5, higher values representing higher worry/work overload). In regression models, all of the above negative experiences were predicted by a combination of factors. Two of these factors stood out in importance due to being a predictor of more than one type of negative experience: a decline in the carer-care receiver relationship, predicting work overload, as well as general and mental health deterioration and being the child of the care receiver, predicting both high worry and subjective work overload. The top five encountered problems were the unavailability of medical and social care, difficulties with shopping (medicine included), restricted freedom, isolation, and anxiety.

Frail Older People Ageing in Place in Italy: Use of Health Services and Relationship with General Practitioner.

Functional limitations, chronic diseases and frailty often occur in later life. These aspects become very challenging when older people age alone in place, thus needing support in the activities of daily living, and in this context, it is important they can access and use health services. The present study aimed to explore these issues in Italy. In 2019, 120 qualitative interviews were carried out within the "Inclusive Ageing in Place" (IN-AGE) project, involving frail older people living at home in three Italian regions (Lombardy, Marche, and Calabria). A content analysis and some quantifications of main statements are presented. Results showed that the majority of seniors report poor self-rated health (SRH), suffer from many chronic diseases, and mainly use the General Practitioner (GP) and Medical Specialists (MSs), even though long waiting list in the public sector and high costs in the private one act as barriers to access health services. Complaints regarding GPs mainly refer to the almost exclusive provision of prescriptions and the lack of home visits. Some regional peculiarities highlighted a better overall context in the north than in the south, especially with regards to the public health sector. These results can provide useful insights for policy makers, in order to deliver health services assuring frail, older people the continuity of assistance needed at home.

Caring for Frail Older People Living Alone in Italy: Future Housing Solutions and Responsibilities of Family and Public Services, a Qualitative Study.

When frail older people age alone in place, with increasing functional limitations, they require support in performing daily living activities. In this respect, it is important to assess their preferences in terms of future housing solutions, and their opinions/orientations on the care responsibilities of both family and public services. The present study aimed to explore these aspects in Italy. Qualitative interviews were carried out in 2019 within the "Inclusive ageing in place" (IN-AGE) research project, involving 120 frail older people who lived at home in three Italian regions (Lombardy, Marche, and Calabria). A content analysis was conducted, and some quantifications of interviewees' statements were provided. The results revealed that the majority of seniors prefer ageing at home, at least with a personal care assistant (PCA), whereas moving to a nursing home is typically deemed as a last option. Moreover, they considered the family to be primarily responsible for taking care of them, even with the support of public services. In addition, some territorial differences emerged. Strengthening an integrated model of long-term care (LTC) for older people, where both formal and informal supports allow frail older people to age at home, seems thus a good overall policy solution to pursue, with interventions based also on the needs and preferences of both seniors and their respective families.