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.

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.

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.

BACKGROUND: As the U.S. population ages, family members increasingly act as informal caregivers, particularly for minority patients and those with limited English proficiency (LEP). However, physicians often do not identify or engage caregivers until there is a health crisis. This study aims to further our understanding of characteristics associated with having a caregiver present at a primary care visit, and better understand the specific roles family caregivers engage in to support older Chinese and Latino primary care patients.
METHODS: Primary care patients were surveyed by telephone in a study of language access and communication. Participants included Chinese and Latino primary care patients (≥ 65 years old) from an academic general medicine practice. We asked patients if anyone was in the room with them during their most recent primary care visit (yes = caregiver accompanied). We asked about caregiving support for various needs, and examined associations of patient and visit characteristics with being accompanied, and frequency of caregiver support roles overall and by caregiver accompaniment.
RESULTS: Among 906 participants, 80% preferred a non-English language, 64% were women, 88% had Medicare, and mean age was 76 years (range 65-97). 43% were accompanied to their most recent visit. Speaking English \'not at all\' vs. \'very well\' was associated with being caregiver accompanied (OR 3.5; 95% CI 1.3-9.7), as was older age ≥ 75 vs. 65-74 (OR 2.7; 95% CI 2.0-3.7). The most common roles being supported by caregivers included: transportation to medical appointments (63%), helping with medical decisions (60%), and talking with the doctor about the patient\'s medical care (54%). Even among unaccompanied patients, substantial proportions reported caregiver support with medical decisions (45%), talking with the doctor (33%), and medical needs at home (26%).
CONCLUSIONS: Opportunities for physicians to engage caregivers who have active support roles may be missed, especially if those caregivers are not present at the visit. Future interventions should aim to help physicians identify which patients have caregivers and for what needs, so they may effectively engage caregivers before a health crisis occurs.

BACKGROUND: Palliative care schemes, which include pain management, symptom control, psychosocial support and rehabilitation, aim to boost patients\' quality of life, ease the burden and anxiety of informal caregivers, and ultimately provide a comprehensive approach to enhance well-being during this challenging and sensitive period. This study aims to evaluate the impact of a comprehensive rehabilitation palliative care program on the quality of life of patients with terminal cancer and their informal caregivers.
METHODS: This quasi-experimental study, conducted from August 2023 to January 2024 at outpatient clinics affiliated with the Oncology Center at Mansoura University, Egypt, focused on cancer patients and their caregivers in the palliative care department. Employing pre- and post-test phases, data were gathered using a questionnaire, EORTC QLQ C30, Hospital Anxiety and Depression Scale, Short Form Health Survey, Caregiver Burden Inventory, and Beck Anxiety Inventory. The investigation evaluated a 16-week rehabilitation program comprising exercise, psychoeducation, individual counselling, and spiritual support. Exercises, led by a physiotherapist, targeted fatigue and stress through tailored aerobic and resistance training. Psychoeducation sessions aimed to bolster coping abilities, covering fatigue management and nutrition. Trained counsellors addressed spiritual and existential concerns. Personal advisory sessions were available for individual support. Caregivers received education on rehabilitation and palliative care protocols, ensuring comprehensive patient care.
RESULTS: The mean age for cancer patients was 65.79 ± 13.85. In contrast, the mean age for primary carers was 42.05 ± 11.15. The QOL for cancer patients during the pre-test phase was 77.8 ± 7.16 and rose to 87.34 ± 14.56 during the post-test phase. Additionally, the total anxiety level of patients before the rehabilitation palliative care program was conducted was 15.45 ± 3.05 compared to 6.12 ± 3.21 after the post test phase. Furthermore, the total depression levels of the patients during the pre-test phase were 20.89 ± 9.21. However, after implementing the rehabilitation palliative care program, it decreased to 15.5 ± 6.86. In regards to the total quality of life of informal caregivers, it was measured at 67.28 ± 32.09 before conducting the program. Nevertheless, it increased to 25.95 ± 40.29 after conducting it. Additionally, the total Caregiver Burden Inventory before implementing the program was 37.45 ± 25.7, and it decreased to 29.36 ± 16.4 after conducting it. Additionally, the total score on the Beck Anxiety Inventory decreased from 45.7 ± 4.3 during the initial testing phase to 17.35 ± 23.67.
CONCLUSIONS: The program for rehabilitation palliative care successfully achieved its goals by enhancing the overall quality of life for cancer patients and their caregivers. Additionally, it reduced the anxiety and depression levels among the patients, as well as the anxiety and caregiver burden among the caregivers. Continue research into the effectiveness of rehabilitation palliative care programs to identify best practices, improve existing programs, and expand access to these services.

BACKGROUND: People living with multiple chronic conditions (MCCs) face substantial challenges in planning and coordinating increasingly complex care. Family caregivers provide important assistance for people with MCCs but lack sufficient support. Caregiver apps have the potential to help by enhancing care coordination and planning among the health care team, including patients, caregivers, and clinicians.
OBJECTIVE: We aim to conduct a scoping review to assess the evidence on the development and use of caregiver apps that support care planning and coordination, as well as to identify key factors (ie, needs, barriers, and facilitators) related to their use and desired caregiver app functionalities.
METHODS: Papers intersecting 2 major domains, mobile health (mHealth) apps and caregivers, that were in English and published from 2015 to 2021 were included in the initial search from 6 databases and gray literature and ancestry searches. As per JBI (Joanna Briggs Institute) Scoping Review guidelines and PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews), 2 authors independently screened full texts with disagreements resolved by a third author. Working in pairs, the authors extracted data using a pilot-tested JBI extraction table and compared results for consensus.
RESULTS: We identified 34 papers representing 25 individual studies, including 18 (53%) pilot and feasibility studies, 13 (38%) qualitative studies, and 2 experimental or quasi-experimental studies. None of the identified studies assessed an intervention of a caregiver app for care planning and coordination for people with MCCs. We identified important caregiver needs in terms of information, support, and care coordination related to both caregiving and self-care. We compiled desired functionalities and features enabling apps to meet the care planning and care coordination needs of caregivers, in particular, the integration of caregiver roles into the electronic health record.
CONCLUSIONS: Caregiver needs identified through this study can inform developers and researchers in the design and implementation of mHealth apps that integrate with the electronic health record to link caregivers, patients, and clinicians to support coordinated care for people with MCCs. In addition, this study highlights the need for more rigorous research on the use of mHealth apps to support caregivers in care planning and coordination.

UNASSIGNED: The need for support in self-care at home will increase with the growing older population with chronic illness. Many people have one or more chronic illnesses and struggle with self-care activities, often supported by informal carers at home. The rapid development of telemonitoring applications in primary care calls for increased knowledge about how people with chronic illness and their informal carers experience the use of telemonitoring applications at home.
UNASSIGNED: This study aims to describe experiences of self-care management at home when living with hypertension or heart failure, with support from primary care through telemonitoring.
UNASSIGNED: A descriptive qualitative approach was applied using semi-structured interviews with patients and informal carers in a pilot project on telemonitoring of chronic illness in primary care from October 2019 to June 2021.
UNASSIGNED: Participants were recruited from three primary care settings and one medical department at one hospital in a region in southern Sweden.
UNASSIGNED: A purposive sample of patients (n = 20) with chronic illness living at home and their informal carers (n = 4) were recruited.
UNASSIGNED: Semi-structured telephone interviews were conducted, guided by open-ended questions targeting patients\' and informal carers\' experiences of self-care management at home and using telemonitoring applications as support. Transcribed interviews were analyzed through qualitative content analysis.
UNASSIGNED: \'Developing the capability to perform self-care with technology as both an intruder and an invited guest\' was the unifying theme that tied together the experiences of patients with chronic illness and their informal carers. Experiences of self-care management included acquiring necessary self-care skills, expertise in managing their chronic illness, and reciprocal relationships with healthcare professionals when using telemonitoring application as support in self-care monitoring of vital parameters. However, uncertainty regarding the interpretation of symptoms and a feeling of exclusion were seen.
UNASSIGNED: Telemonitoring applications offer potential support for patients with chronic illnesses and their informal carers, enabling them to establish new routines and enhance motivation for self-care activities at home. This study emphasizes the adaptability of telemonitoring applications in meeting the unique support requirements of patients and informal carers when managing self-care at home.