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: 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.

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: Osteoporotic hip fracture is a major health problem. Falls, the primary cause, might lead to a persistent fear of falling (FoF) among older adults, affecting their daily activities and rehabilitation. While in-person interventions exist, limited research is available on the effects of tele-rehabilitation on the FoF after a hip fracture. Thus, this study aims to test the association of the @ctivehip tele-rehabilitation programme on reducing the levels of FoF experienced by both older adults with hip fracture and their family caregivers.
METHODS: A non-randomised controlled trial (ClinicalTrials.gov; Identifier: NCT02968589) that compared a webpage-based tele-rehabilitation (@ctivehip) against usual care. Fear of falling was assessed using the Short Falls Efficacy Scale-International. Patients\' functional status was evaluated using the Functional Independence Measure. Physical performance was assessed by the Timed Up and Go test and Short Physical Performance Battery. We conducted a per-protocol analysis as the primary outcome, and an intention-to-treat approach as secondary analysis.
RESULTS: A total of 71 patients with hip fracture (78.75 ± 6.12 years, 75% women) and their family caregivers participated. Participants in the intervention showed a higher decrease in FoF in comparison to those in the usual care (0.5 Cohen\'s d; p = 0.042). The reduction in FoF resulting from participation in the tele-rehabilitation programme was mediated by improvements in functional status by 79%. The @ctivehip programme did not decrease FoF of family caregivers.
CONCLUSIONS: @ctivehip is associated with a reduction of the FoF in older adults with hip fractures, but not in their family caregivers, with the reduction being mostly explained by improvements in the patients\' functional status. Although the intervention seems promising, it should not be applied in clinical settings until confirmed by appropriate-designed randomised clinical trials.

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.

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.

BACKGROUND: The COVID-19 pandemic has catalyzed a move from face-to-face to digital delivery of services by hospitals and primary care. However, little is known about the impact of digital transformation on organizations supporting unpaid caregivers. Since the start of the COVID-19 pandemic, the value of care provided by such informal caregivers is estimated to be £111 billion (US$ 152.7 billion) in England.
OBJECTIVE: This study aims to analyze service uptake patterns (including digital service options) over the pandemic period in an English caregivers\' support organization covering a population of 0.98 million; measure changes in organizational performance, service efficiency, and quality; and identify the views of caregivers on service provision and future digital delivery.
METHODS: This was a retrospective analysis of the use of digital versus nondigital support services (January 2019 to June 2021) by caregivers in city and rural geographic areas. We compared organizational performance and service quality indicators for 2 financial years (2019-2020 and 2020-2021). A survey was conducted to identify barriers and facilitators to digital service uptake, the computer proficiency of caregivers (the Computer Proficiency Questionnaire, 12-item version), and preferences for future digital service provision. Quantitative data were analyzed using Stata 13 (StataCorp LLC). Thematic analysis was used for open-text survey responses.
RESULTS: The number of caregivers registered with the organization rose from 14,817 in 2019 to 20,237 in 2021. Monthly contacts rose from 1929 to 6741, with remote contacts increasing from 48.89% (943/1929) to 86.68% (5843/6741); distinctive patterns were observed for city versus rural caregivers. There was an increase in one-to-one contacts (88.8%) and caregiver assessments (20.9%), with no expansion in staffing. Service quality indicators showed an improvement in 5 of 8 variables (all P<.05). The 152 carers completing the survey had similar demographics to all registered caregivers. The Computer Proficiency Questionnaire, 12-item version, mean score of 25.61 (SD 4.40) indicated relatively high computer proficiency. The analysis of open-text responses identified a preference for the organization to continue to offer face-to-face services as well as web-based options. The digital services that were the most highly rated were carers\' well-being assessments, support needs checks, and peer support groups.
CONCLUSIONS: Our findings show that staff in the caregiver support organization were agile in adapting their services to digital delivery while dealing with increased numbers of registered clients and higher monthly contacts, all without obvious detriment to service quality. Caregivers indicated a preference for blended services, even while recording high computer proficiency. Considering the economic importance of unpaid caregivers, more attention should be given to organizations funded to provide support for them and to the potential for technology to enhance caregivers\' access to, and engagement with, such services.