Dementia caregiving is a dynamic and multidimensional process. To gain a comprehensive understanding of informal caregiving for people living with dementia (PLWD), it is pivotal to assess the quality of life (QoL) of informal caregivers.
To evaluate whether the care-recipient relationship type predicts changes in the QoL of informal caregivers of PLWD over a two-year period.
This was a secondary analysis of longitudinal data. The data were drawn from two waves of linked data from the National Health and Aging Trends Study (NHATS) and the National Study of Caregiving (NSOC) (2015: NHATS R5 & NSOC II; 2017: NHATS R7 & NSOC III). Caregivers were categorized into spousal, adult-child, \"other\" caregiver and \"multiple\" caregivers. QoL was assessed through negative emotional burden (NEB), positive emotional benefits and social strain (SS). Generalized estimating equation modelling was used to examine changes in caregivers\' QoL outcomes across types of relationship over time.
About, 882 caregivers were included who linked to 601 PLWD. After adjusting caregivers\' socio-demographics, \"other\" caregivers had lower risk of NEB and SS than spousal caregivers (OR = 0.34, P = 0.003, 95%CI [0.17, 0.70]; OR = 0.37, P = 0.019, 95%CI 0.16, 0.85], respectively), and PLWD\'s dementia status would not change these significance (OR = 0.33, P = 0.003, 95%CI [0.16, 0.68]; OR = 0.31, P = 0.005, 95%CI [0.14, 0.71], respectively).
The study demonstrates that spousal caregivers face a higher risk of NEB and SS over time, underscoring the pressing need to offer accessible and effective support for informal caregivers of PLWD, especially those caring for their spouses.

Dementia can be overwhelming to families and their caregivers. Informal caregiving is a widespread mode of providing dementia care in African American communities, yet impact of caregiving on informal or family caregivers in African American communities is burdensome. This study aimed to describe the lived experiences of informal caregivers of African American People Living with Dementia (PLWD) to understand their perceptions of dementia and dementia care, caregiver support needs, and service needs. Interpretive phenomenological qualitative inquiry guided this study to understand caregivers\' experiences and needs. Ten family caregivers of African American PLWD in the community participated in this study. Data were collected through in-depth interviews and a diary study approach to document and interpret caregivers\' experiences. The data analysis was based on procedures of content analysis. Four major themes emerged from the in-depth interviews: caregiver burden, familism, lack of information and community-based resources, and desire and need for culturally appropriate community-based resources. Triangulated diary entry data complemented the in-depth interviews with similar themes. This study highlights how African American informal caregivers of PLWD face various caregiving needs and challenges in dementia care including lack of culturally appropriate community resources and information. The study illustrates that African American cultural beliefs of familism are significant aspects of their caregiving experience and their coping strategies. These study results provide a useful foundation for various stakeholders to develop culturally targeted interventions and programs to support African American informal caregivers and their family members with dementia.

BACKGROUND: Addressing informal caregivers\' needs is essential for ensuring quality healthcare and promoting citizen-centred care. This systematic review assessed current knowledge about programmes aimed at meeting the needs of informal caregivers of adults who are dependent on others for daily life activities.
METHODS: Following the PRISMA guidelines, the electronic databases EBSCOhost Research Platform, MEDLINE, CINAHL, Scopus, Web of Science and The Virtual Health Library were searched for randomized experimental studies published between 2012 and 2022 that implemented programmes addressing informal caregivers\' needs to improve their experiences, health, and well-being. Quality was assessed using the standardized critical evaluation tools from the Joanna Briggs Institute. Two independent investigators performed the eligibility assessment and data extraction. Quantitative data on the effectiveness of interventions were collected, and the content of each intervention was synthesized and aggregated into categories, through narrative synthesis.
RESULTS: The majority of the included studies (n = 16) were conducted in European countries and implemented a structured intervention programme compared to the provision of usual care. The studies were of fair to high methodological quality, with a higher risk of bias related to blinding. The results supported the achievement of favourable health outcomes among informal caregivers, namely improvements in mental health (n = 3) and quality of life (n = 3) and a decrease in psychological symptomatology (n = 5) and burden (n = 3). None of the interventions reported adverse outcomes; however, five studies did not describe significant differences in the outcomes assessed after the implementation of the programmes. Interventions focusing on training and educating caregivers (n = 14) and cognitive-behavioural strategies (n = 7) were the most common, while programmes focusing on emotional and psychological support as a resource to improve caregivers\' psychological outcomes were scarce.
CONCLUSIONS: This systematic review adds to the growing body of evidence and insight showing that programmes that address informal caregivers\' needs seem to contribute to better physical and psychological health outcomes through the promotion of caregivers\' educational support and the implementation of cognitive-behavioural strategies. Future research should implement methodologically robust cross-country programmes tailored to informal caregivers\' physical, emotional, psychosocial, societal, and educational needs throughout the care trajectory.

OBJECTIVE: To clarify the mechanisms of interventions addressing loneliness and social isolation in older adults living in nursing homes through the involvement of primary and secondary informal caregivers.
METHODS: This scoping review was performed by two independent reviewers, covering the period between 2011 and 2022 and the databases MEDLINE, CINAHL, PsycINFO and Scopus. It included terms related to (A) informal caregivers, (B) nursing homes, (C) psychosocial interventions, (D) involvement and (E) social isolation or loneliness.
RESULTS: Thirty-three studies met the inclusion criteria. Although there were various definitions and assessment tools related to social isolation and loneliness, the studies referred to three dimensions of these concepts in nursing home residents: the quantity of social interactions, the perception of these encounters and biographical changes in social relationships. Most studies did not explicate the mechanisms of these interventions. The review uncovered the following aspects of intervention mechanisms: increasing opportunities for social contact, creating meaningful encounters, maintaining existing relationships with primary informal caregivers and establishing new ones with secondary informal caregivers.
CONCLUSIONS: Studies reporting on interventions addressing loneliness and social isolation in nursing home residents need to clarify and detail their intervention mechanisms in order to foster more targeted interventions. In addition, there is a need for further research on large-scale programs or care philosophies in this field and the development of intervention designs, which allow for tailored intervention formats in order to respond to the individual perception of social relationships.

UNASSIGNED: Pressure injuries (PIs) are prevalent in palliative care. Lack of knowledge and skills among informal caregivers on PI prevention and management contributes significantly to the occurance or deterioration of PIs.
UNASSIGNED: The aims of this study were to: (1) determine the level of knowledge and practices of informal caregivers on PI prevention and treatment; (2) explore the socio-demographic characteristics of informal caregivers that influence PI prevention and treatment among patients who need palliative care.
UNASSIGNED: The quantitative cross-sectional descriptive design was used to collect data from 146 informal caregivers, and a valid and reliable questionnaire was used.
UNASSIGNED: A total of 146 informal caregivers of patients with PI completed the study. Most participants had a relatively low level of PI prevention, treatment knowledge and practice. Participants who were older than 28 years, working for the government and married had significantly better knowledge and practice of PI prevention and treatment than other participants.
UNASSIGNED: Information for informal caregivers in different settings about PI prevention and treatment is needed. Informal caregivers need to acquire more professional practices and knowledge to improve the quality of patient care.

Care partners are crucial to supporting the complex health needs of older adults with dementia, but they are not systematically identified in care delivery. As part of a real-world implementation project in geriatric primary care, we adapted a portal-based agenda setting intervention, OurNotes, by incorporating items to help care partners self-identify. Semi-structured interviews were conducted with care partners (N = 15) who completed the adapted OurNotes to explore their perceptions of the tool (usability, benefits, and challenges) and recommendations for refinement. The data were analyzed using thematic analysis. Benefits included enhancing care partners\' preparedness for the visit and opening a direct channel to express concerns about patients\' cognition and memory loss to clinicians. Challenges pertained to clinician responsiveness; recommendations focused on enabling the submitted OurNotes responses to be edited and updated by multiple care partners. Such refinements may help to maximize the impact of adapted OurNotes\' and potential for future implementation and dissemination.

BACKGROUND: Informal care is a common form of social support, which can vary greatly in its intensity. While views of aging have shown to be relevant to mental health before, we aim to analyze whether the association between views of aging and depressive symptoms is influenced by the provision of informal care and its intensity.
METHODS: Data of six waves of the Health and Retirement Study in the United States was used. The sample includes up to 41,058 observations pooled over six waves of community-dwelling adults aged ≥50 years. Depressive symptoms were measured with the Center for Epidemiologic Studies Depression Scale (CESD) and attitudes towards own aging (ATOA) with the Philadelphia Geriatric Center Morale Scale (higher score indicates positive attitudes); informal caregiving (no/yes) and caregiving intensity (moderate, intense) were surveyed. Adjusted fixed effects regression analysis with robust standard errors, and with caregiving as moderator variable were calculated.
RESULTS: Informal caregiving did not interact with ATOA. However, transitioning into intense caregiving significantly moderated the association between ATOA and depressive symptoms. Lower depressive symptoms were associated with better ATOA and this association was significantly stronger in the intense caregiving condition than in the non-caregiving condition. No significant interaction effects were found between any form of caregiving and subjective age.
CONCLUSIONS: The possibility of reciprocal effects cannot be excluded.
CONCLUSIONS: Internalized ageism and depressive symptoms are more strongly related among caregivers who provide intense care. Thus, interventions to reduce internalized ageism could be helpful in particular among this vulnerable group of informal caregivers.

BACKGROUND: Social support provided by a family member has been found to have a buffering effect on distress and is associated with better diabetes self-care. This study explores the meaning of social support, as described by close family members of foreign-born people living with type 2 diabetes (PWDM) in Sweden. It also explores the support provided by family members, and the support they need to be able to support the PWDM.
METHODS: Qualitative explorative study, semi-structured interviews for data collection. Qualitative content analysis based on a theoretical framework on social support. Purposive sample of 13 family members, 18-52-years-old, born in countries in the Middle East, Africa, and Russia.
RESULTS: The meaning of support was described as social and emotional. Most participants described a stressful situation; feelings of sadness/worry about the risk of the PWDM developing complications added to a strained life situation from which one could not opt out. Frequent daily contacts in a family network were evident, particularly by children trained as healthcare professionals. Caring for a family member was considered a filial piety, but it was also a chance to reciprocate. The support provided was mainly informational (e.g., reminders about nutritional intake), but it was also instrumental/practical (administering medicines, helping with economy/logistics, planning/cooking meals, basic care) and emotional (sharing meals, thoughts, and activities). The support the family members needed was getting first-hand information by attending the physician visits, being able to book appointments themselves at suitable times, and preventing the withholding of important information about the PWDM. They also desired an open telephone-line, oral and written information, particularly on diet.
CONCLUSIONS: To family-members, supporting the PWDM was normal and a filial piety. Support provided and needed was not only informational but also instrumental/practical and emotional. In diabetes care, addressing foreign-born individuals, diabetes education needs to be developed, also including family members. Informational material, particularly on diet, and improved access to healthcare and information about the healthcare system have the potential to increase family members\' control over the situation and prevent a negative trajectory in caregiving with perceived demands causing high levels of stress.

BACKGROUND: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout.
METHODS: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically.
RESULTS: We identified two overarching themes and five subthemes. The themes included \'Fighting on all fronts: Mounting strain between demands and resources\', which described the challenge of providing care in the context of coexisting SMI and LTCs, and \'Safekeeping: The necessity of chronic hypervigilance\', which captured how informal carers\' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care.
CONCLUSIONS: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden.
UNASSIGNED: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.

BACKGROUND: A significant proportion of patients and informal caregivers favor an active role in decisions concerning their health. Simultaneously, governments aim to shift treatment from a professional care setting to a community setting, in light of an ageing population, a decreasing number of health workers and allocation of scarce resources. This transition of care solicits patients\' and informal caregivers\' ability to self-manage. Therefore, the Maastricht University Medical Centre + has established the Academy for Patients and Informal caregivers. The aim is to proactively and professionally support patients and their informal caregivers to enhance their self-management. For that, the Academy offers activities in three categories: (1) instruction of nursing techniques, (2) training of e-health competencies and (3) the provision of self-management programs. Both patients with an episodic care need, as well as patients and informal caregivers with chronic illness, are eligible to participate in the Academy\'s activities. However, little is known about the experience of these interventions from the perspective of patients, informal caregivers and healthcare professionals.
METHODS: We conducted semi-structured interviews with 15 patients, 8 informal caregivers and 19 health care professionals who either participated in, referred to or received patients from the Academy. Topics revolved around self-management and the Quadruple aim, covering topics such as patient experiences, healthcare costs, health and well-being of the population and improving work life for health professionals. Data were analyzed using thematic analysis.
RESULTS: Patients and caregivers experienced an increase in the ability to manage health needs independently, leading to increased mental well-being and self-efficacy. They felt recognized as partners in care, although managing illness needs came with its own burdens. Health care professionals indicated that they felt assured of the quality, uniformity and availability of activities due to its central organization, with instruction nurses finding greater meaning in their work. On the level of health care systems, participants in this study mentioned a decrease in use of formal healthcare, whilst enabling a more equitable division of care.
CONCLUSIONS: Stakeholders\' experiences with the Academy for Patients and Informal caregivers indicate that participation contributes to development of self-management, whilst also improving working conditions, reducing the appeal to formal care and advancing equity in healthcare. The burden for patients and informal caregivers is to be considered in future developments.