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Caregivers of people with dementia face important health challenges due to the natural progression of the disease. Self-care is associated with improvements in quality of life and well-being, howev...

This study examined the association between caregivers' burdens and their individual characteristics and identified characteristics that are useful for predicting the level of caregiver burden. We successfully surveyed 387 family caregivers, having them complete the caregiver burden inventory scale (CBI) and an individual characteristic questionnaire. When we compared the average CBI scores between groups with a particular individual characteristic (including caring for older adult(s), educational level, employment status, place of birth, marital status, financial status, need for family support, need for friend support, and need for nonprofit organizational support), we found a significant difference in the average scores. From a logistic regression model, with burden level as the outcome, we found that caring for older adult(s), educational level, employment status, place of birth, financial situation, and need for nonprofit organizational support were significant predictors of the burden level of caregivers. The research findings suggest that certain individual characteristics can be adopted for identifying and quantifying caregivers who may have a higher level of burden. The findings are useful to uncover caregivers who may need prompt support and social care.

Objective The main objective of this study was to explore how health care professionals experience adaptation of user-involvement for people with dementia receiving health and social care. Method A qualitative explorative design was used with eight focus groups as the method of data collection. A total of 49 health care professionals were included representing a variety of professions, municipal and specialized health services, and all health regions of Norway. The transcribed focus group interviews were analyzed using qualitative content analysis following six steps to identify categories and the overall theme. Results Six main categories were identified: 1) facilitation of self-determination, 2) challenges of reduced or lack of awareness, 3) family caregivers' concern and protection, 4) open communication, 5) establishing a trustworthy relationship, and 6) clarifying expectations. To maintain independent lives for people with dementia, health care professionals must facilitate and support shared decision-making using an open and trustworthy communication. Conclusion To facilitate user-involvement, health care professionals need to develop and implement strategies that consider the perspectives of people with dementia and support the relationship between people with dementia and their informal caregivers.

This study examined the associations between respite services use and self-rated health of older family caregivers who provided eldercare; and how the age of caregivers (i.e., young-old vs. old-old...

Background The extant literature portrays informal caregiving by family members who care for a person with a diagnosis of schizophrenia, as one that involves a tremendous amount of stress and burden. Aim This investigation sought to assess informal caregiving experience with regard to variables such as perceived positive aspects, preparedness, resilience, and life satisfaction. Method Data was collected from two groups of respondents accessing services at the Thanjavur Medical College Hospital, Tamil Nadu, India. The study group consisted of 75 family caregivers of persons with a diagnosis of schizophrenia and the reference group had an equal number of caregivers of people with minor physical ailments. The two groups were matched on important background factors, ensuring their comparability. Standardised instruments were administered to all respondents to collect data pertaining to the key variables and analysed using appropriate statistical procedures. Results Results indicated that caregivers of people with a diagnosis of schizophrenia, while manifesting higher levels of resilience, perceived lesser positive aspects in their caring role. A significant statistical difference between both groups of respondents in terms of their life satisfaction and resilience. Regression analyses extracted preparedness and life satisfaction as significant contributors to the manifestation of resilience in the caregivers. Conclusions The study highlights the importance of caregiver preparedness and life satisfaction in enhancing their resilience.

Parkinson’s disease (PD) is the second most common neurodegenerative disease globally. It is a progressive neurological disorder which can lead to a decline in wellbeing and quality of life for people living with PD (PwP) and their families/caregivers. However, little is known about the experience of PwP in low- and middle-income countries. In high-income countries, the benefits of support groups in providing social support, preventing social isolation and normalising the PD experience have been established. As part of a wider ethnographic study over 10 months, we explored the role of support groups in the management of PD in Kenya, sub-Saharan Africa. Fifty-five PwP and 23 informal family caregivers took part, and observations took place over ten support group meetings. Both positives and drawbacks were identified. The groups played a role in filling in gaps in information and services that the healing landscape in Kenya was unable to provide, while acting as an important source of care and support for PwP and caregivers, enabling ‘sociality’ and legitimacy. Drawbacks included limited reach and accessibility, ‘social comparisons’, and seeing the severity of progressed PD in others. Findings suggest PD support groups could become important components within resource-constrained healthcare settings.

OBJECTIVES Psychosocial and cognitive-behavioral dementia caregiver interventions are effective, yet accessing counselor/therapist-led programs can be costly and difficult. Face-to-face therapist-led Acceptance and Commitment Therapy (ACT) is highly effective in dementia caregivers, as established by two different randomized control trials. The current study evaluates a pilot ACT for Caregivers program, which is a community-based, self-guided, online adaptation of ACT. METHOD Participants (N = 51; Mage=66.0 S. D =11.7, 80% women) completed 10 self-guided sessions teaching ACT, along with accessing an online dementia education library. RESULTS Repeated measures ANOVA from pre-, posttest, and 4-week follow-up demonstrated decreased depressive symptoms, burden, and stress reactions to behavioral symptoms, and increased positive aspects of caregiving and quality of life. ACT-specific measures improved, with decreases in cognitive fusion and psychological inflexibility (AAQ-II), and improvements in living according to personal values (ValuingProgress increased; ValuingObstruction decreased). All outcomes were statistically significant (at p < .01) and sustained over 4-week follow-up. Although this was a non-clinical sample, the program demonstrated clinical significance, as average depressive symptoms were at the clinical cutoff at baseline, but one standard deviation below clinical cut-off at post-test and 4-week followup. Use of education materials was low (29% of participants used these, albeit rating them helpful), suggesting that ACT likely contributed more to overall improvements. CONCLUSION The online ACT for Caregivers pilot program offers an empirically supported translation of traditional ACT, improving accessibility, and affordability for family dementia caregivers.

In addition to health and financial burdens, family caregivers can experience stress in their romantic relationships. Relational turbulence theory (RTT) is used to understand how family caregivers ...

Providing long-term care for a family member diagnosed with a Prolonged Disorder of Consciousness (PDoC) can have a significant impact on the lives of family caregivers. This scoping review aimed to explore the current literature investigating the impact of caring for a person in a PDoC on family caregivers' Quality of Life (QOL), as categorized using the WHOQOL-BREF model. We observed that articles employing quantitative methodologies mostly reported QOL outcomes relating to negative feelings, thinking, learning, memory and concentration, and personal relationships. Articles employing qualitative methodologies mostly reported QOL outcomes relating to negative feelings, personal relationships, positive feelings, and health and social care accessibility and quality. A descriptive content analysis of the QOL outcomes highlighted the limitations of the current literature base in representing the complexities of the experiences of family members providing care for a person in a PDoC. To provide valuable and personalized support to caregivers, without pathologizing or medicalizing their distress, it is vital to characterize more accurately the contextual subtleties of each person's situation.

Family caregivers faced unprecedented circumstances and experienced increased levels of stress during the COVID-19 pandemic. Resourcefulness can minimize the effect of stress on health outcomes. The purpose of this study was to examine the associations between caregiving stress during the pandemic, resourcefulness, and self-rated health and assess the mediating effect of resourcefulness. A convenience sample of 70 family caregivers of adults with chronic and/or disabling conditions was recruited using social media groups and professional networking platforms. Data were collected using an online survey and analyzed using linear regression. Mediation analysis was conducted using the PROCESS macro. Higher levels of caregiving stress during the pandemic and lower levels of resourcefulness were associated with worse self-rated health, while controlling for age, employment status, and weekly caregiving hours. Resourcefulness mediated the relationship between caregiving stress and self-rated health. Our findings highlight the importance of assessing the psychological impact of the pandemic on family caregivers’ outcomes. Resourcefulness skills can be targeted to improve the health and well-being of family caregivers during and beyond the pandemic.

Social workers often address the emotional needs of family caregivers, which are particularly salient during the decision-making process regarding the choice of a living environment for a relative with dementia. In most home care settings, an assessment of caregivers' needs is not part of routine practices. This study aims to describe the intervention strategies adopted by social workers in relation to caregivers' emotions during their decision-making process. A qualitative research design was adopted. Seven social workers were recruited from three health and community service facilities in Montreal, Canada. One group and three individual semi-structured interviews were conducted. Data was analyzed using Miles, Huberman and Saldana's method (2013). Seven intervention strategies were identified: investigating emotions, acknowledging emotions, encouraging caregivers to carry on their role, focusing on the rational aspects of the decision, mitigating prejudices against nursing homes, mediating family dynamics and acting upon families' needs. Some of these strategies are aimed at social workers meeting the demands of their jobs whilst others are centered around soothing caregiver emotions. These results can inform support services and future interventions by grounding them in the realities of service providers.

It is widely accepted that family caregivers are central to the future of cancer care and the impetus is to understand how best to support and empower them.This study explored the role of the relat...

The purpose of this study is to explore the experiences of Muslim mothers of children with disabilities. Many studies have addressed the challenges faced by family caregivers in Western societal se...

Researchers are continuing to focus on the nature and sources of burden of family caregivers of persons living with dementia. Caregiving stress and burden are assessed and addressed by social workers, including at high-risk times such as hospitalization. This study tested whether adult-child family caregivers experience greater perceived burden than spousal caregivers, accounting for risks of acute stress which can accompany hospitalization for their care recipient, where social workers may be meeting with family caregivers for the first time. Family caregivers (N = 76; n = 42 adult-child; n = 34 spouse) were recruited during care-recipient clinical treatment. The settings of care included an outpatient memory care program and an inpatient geriatric psychiatry service. Results showed that adult-child caregivers reported greater burden as compared with spousal caregivers, but no differences regarding depressive symptoms, perceived stress, or grief. After controlling for demographics and location of care, being an adult-child caregiver remained a predictor of greater burden severity. Being an adult-child family caregiver may place an individual at increased risk for experiencing high burden. These findings suggest socials workers should consider how adult-child caregivers may benefit from strategies to address and reduce burden, beyond those typically offered to spousal caregivers.

By analysing the 2016 Japanese Supreme Court case concerning family caregivers’ liability for damages caused by a person with dementia who was killed by a train while wandering, this article sugges...

The prevalence of Alzheimer's disease and related dementias (ADRD) is increasing. In the United States, older adults are among those most likely to have firearms in the home. Addressing firearm access among persons with ADRD can be confusing and stressful for family caregivers, healthcare providers, firearm industry representatives and law enforcement. This study sought to examine key stakeholder perspectives concerning legal and logistic considerations for temporary firearm transfers when a person with ADRD owned firearms. A secondary analysis of 24 qualitative interviews conducted to inform the development of a firearm safety tool for ADRD caregivers revealed four types of barriers. These barriers were each associated with logistical challenges and legal ambiguities that hampered ADRD-related firearm transfers: (1) legal questions on firearm ownership and permitted transferees; (2) transfer logistics and duration; (3) issues of engaging law enforcement or retailers for transfers; and, (4) lack of information resources and guidance. Siloes between stakeholder groups persist and limit information sharing. Broad initiatives engaging caregivers, older adults, clinicians, aging service providers, law enforcement, and firearm outlets could inform the development of policies, programs, and practices to enhance the safety and well-being of people with ADRD and their caregivers.

Purpose: This pilot feasibility study aimed to gain preliminary insight into the acceptability and usefulness of the FAB-PBS program for providing behavior support to families following acquired brain injury (ABI) in community settings. The FAB-PBS program is based on a Positive Behavior Support (PBS) framework and principles of Family-Centered Care and Family-Directed Intervention. It consists of an education phase followed by individualized sessions during which the family is supported to develop and implement a PBS plan.Methods: A mixed-methods design was utilized, with feedback obtained from family members via short questionnaires and semi-structured interviews post education phase and individualized sessions, and at three-month follow up.Results: Two family members completed the full FAB-PBS program and reported high satisfaction with the program and increased confidence in providing behavior support. Findings also suggested an increase in desired behaviors and a decrease in challenging behaviors presented by family members with ABI.Conclusions: The FAB-PBS program may be an acceptable and feasible approach to increasing the capability of family caregivers in providing behavior support following ABI. Further pilot testing is required to inform the development of a larger feasibility study.

INTRODUCTION: Patients with end-stage liver disease (ESLD) have impaired physical, psychological, and social functions, which can diminish patient quality of life, burden family caregivers, and increase healthcare utilization. For those with a life expectancy of less than six months, these impairments and their downstream effects can be addressed effectively through high-quality hospice care, delivered by multidisciplinary teams and focused on the physical, emotional, social, and spiritual wellbeing of patients and caregivers, with a goal of improving quality of life. AREAS COVERED: In this review, we examine the evidence supporting hospice for ESLD, we compare this evidence to that supporting hospice more broadly, and we identify potential criteria that may be useful in determining hospice appropriateness. EXPERT OPINION: Despite the potential for hospice to improve care for those at the end of life, it is underutilized for patients with ESLD. Increasing the appropriate utilization of hospice for ESLD requires a better understanding of patient eligibility, which can be based on predictors of high short-term mortality and liver transplant ineligibility. Such hospice criteria should be data-driven and should accommodate the uncertainty faced by patients and physicians.

The all-consuming role and responsibilities of providing care to an aging parent or spouse create identity disruption and stress. However, this stress may be resolved as family caregivers integrate...

Family caregivers of older adults with dementia have significant challenges across many domains. While this role has been found to be burdensome on the caregiver, increasingly, though, there are also significant positive aspects reported by caregivers (known as the positive aspects of caregiving-PAC). This participatory qualitative study of 30 United States caregivers of family members age 65 and older who died with a dementia-related diagnoses used in-depth qualitative interviews and directed content analysis to understand the data. The study addressed a gap in the research literature and asked about caregiver's positive experiences during their family members' last weeks of life and investigated what this meant for the caregiver. Three primary themes were identified: (1)

The Helping Invested Families Improve Veterans' Experiences Study (HI-FIVES) evaluated a skills training program to support family caregivers of cognitively or functionally impaired persons. HI-FIVES demonstrated sustained improvements in caregivers' and patients' experiences of VA care. The aim of this distinct, secondary qualitative study was to explore the potential processes related to the individual tailored skills-based telephone training underpinning HI-FIVES intervention effects. We explored topics caregivers selected, characteristics of action items created, patterns of action or inaction, and barriers to action item completion across topics.Qualitative data was analysed from 118 dyads randomized into the HI-FIVES intervention which included three weekly facilitated training calls covering five education topics and action items developed by caregivers for each topic. Qualitative analysis of text responses to questions from the training calls was used.Three of the top four most selected topics were caregiver-oriented and caregivers created an action item most often for self-care topics. Caregiver-oriented topics also had the highest action item completion rates. The majority of action items created met SMART guidelines for goal setting and simple structure. With regard to barriers to action item completion, caregivers commonly reported still contemplating/pending.Our findings identify motivational interviewing as an effective technique to identify critical intervention content and address barriers to achieving caregiving goals. We suggest that caregivers felt more empowered to create and complete an action item when they had more control over completing the action item, such as in topics related to their own self-care.

Purpose This study explored the consistency between preferences for end-of-life care for elderly hospitalized patients and their primary caregivers and predictors of consistency. Patients and Methods This cross-sectional correlational study recruited 100 dyads of elderly hospitalized patients and their primary caregivers from a medical center in Central Taiwan. A structural questionnaire about preferences for seven end-of-life medical treatment options involved cardiopulmonary resuscitation, intravenous therapy, nasogastric tube feeding, intensive care unit, blood transfusion, tracheotomy, and hemodialysis. Results The consistency was 42.28% for preferences of end-of-life medical care between patients and caregivers. The Kappa values for seven life-sustaining medical treatments ranged from 0.001 to 0.155. Logistic regression showed that the predictors of consistency for preferences of treatment were: a patient with a signed living will (odds ratio [OR] = 6.20, p

In the United States, 8 out of 10 elders, 65 or older, have at least one chronic disease. Their care likely falls mostly to family members; many experience financial strain associated with providin...

There is an increased belief in the benefits of information and communication technologies (ICT) in healthcare, but the perceived benefits of ICT in family caregiver support need to be explored. Th...

Background Cancer has a major impact on the lives of family caregivers, including their health and quality of life (QOL). However, little is known about the QOL of family caregivers of adult cancer patients in Ethiopia. This study aimed to assess the QOL and associated factors among primary family caregivers of adult cancer patients in Addis Ababa, Ethiopia. Methods In this cross-sectional study, 291 family caregivers completed the survey in the Amharic language. The Caregiver Quality of Life Index-Cancer (CQOLC) was used to measure QOL of family caregivers. Descriptive and linear regression analyses were conducted using SPSS version 23. Results The mean age of the family caregivers was 37.04±11.47 years and 51.5% were male. The mean score of QOL was 82.23 (±16.21). Not being employed in private sector (β = -0.128; CI=-7.82, -0.45; p= 0.028), having family monthly income less than 16 USD (β = 0.132; CI=0.87, 10.88; p= 0.021) and not having family monthly income greater than 64 USD (β = -0.128; CI= -10.43, -0.66; p= 0.026), being spouse (β = 0.179; CI: 1.34, 11.99; p= 0.019) and not residing in urban areas (β = -0.139; CI: -10.53, -0.96; p= 0.019) were negatively associated with the QOL of the family caregiver and explained 8.7% of the variation (R2 =0.087; p=0.000). Conclusion Our findings identified factors such as occupation, income, relationship with the patient, and place of residence that negatively associated with the QOL of family caregivers. Targeted interventions such as social and economic support and bringing the care to the patient's residence place are needed to improve the QOL of family caregivers of adult cancer patients.

We examined whether gender plays a role in how financial strain moderates the relationship between health status and objective burden among employed family caregivers. Using data from "Caregiving in the U.S., 2015," the sample included 704 employed caregivers (311 males and 393 females) of adults 50 years of age and older. The relationship between objective caregiver burden and self-reported health was moderated by financial strain in the full sample. However, in separate analyses by gender, this moderated relationship was limited to females. Findings inform interventions to improve caregiver health while accounting for the financial strain experienced by women in particular.

This study aims to advance the understanding of the ethnic food transformation and motivation to prepare ethnic food at home. By mapping the identities and roles of the family caregivers, the study...

Introduction All over the world, healthcare team members are recommended to respect patients' human dignity. However, the dignity of hospitalized patients is not preserved in many cases. Due to the abstract, complex, and cultural nature of the concept of human dignity, further studies are required to precisely determine the different aspects of this concept. Purpose The aim of the present study was to explore the experiences and perceptions of physicians, nurses, family caregivers, and hospitalized patients with regard to patient dignity in Iranian clinical setting. Materials and methods This is a qualitative, exploratory study in which physicians, nurses, family caregivers, and patients were recruited from 2 educational hospitals located in an urban area in Iran from April 2016 to February 2017 using the purposive sampling method (n = 24). Data were collected through individual interviews and subsequently analyzed using conventional content analysis in the software MAXQDA 2007, VERBIO`. Results Three major themes emerged from analyses of the data obtained from the interviews: a peaceful environment, respect, and comprehensive support. Conclusion From the participants' point of view, in order for their dignity to be preserved, patients need to be hospitalized in a peaceful environment in which they are treated with empathy, they receive comprehensive support, and the care settings are managed properly. Furthermore, it is important to respect patient's values and beliefs, to provide unbiased care and treatment, and to maintain patient's autonomy in order to maintain hospitalized patients' dignity.

This pilot study examined the effects of Brief Problem-Solving Therapy on caregiver quality of life, depression, and problem-solving in family caregivers of hospice patients. Thirty-seven family caregivers to home-based hospice patients (mean age 62.8 [SD = 12.32]) were randomized to the study group (PST-Hospice), for a 45 minute per week/5 week intervention or comparison group of usual care plus caregiver education (UC + CE). The severity of depressive symptoms, caregiver quality of life and problem-solving functioning were assessed at baseline and follow-up. At post-test, the PST-Hospice condition had significantly higher scores on caregiver quality of life compared to UC + CE. On the Social Problem Solving Inventory-Revised Short Form (SPSI-R) measure, PST-Hospice scores clinically improved as compared to UC + CE on Positive Problem Orientation and Rational Problem-Solving subscales. In addition, this pilot study found that brief problem-solving treatment delivered by a hospice social worker appears to be an acceptable and feasible tool for routine use in the home-hospice setting.

Overeating and obesity are major public health issues in the United States. Caregivers are at greater risk of engaging in poor health behaviors, such as emotional eating, to cope with the demands of caregiving. Using Heatherton and Baumeister (1991) Escape Theory, this study examines the associations between caregiver characteristics (i.e. age, gender, and BMI) and emotional eating, including the extent to which family strain mediates these associations.Data are from the MIDUS 3 dataset (Female caregivers were more likely than male caregivers to engage in emotional eating. Age was significantly associated with emotional eating, where increased age was associated with less emotional eating. ANCOVA results indicated that obese caregivers were the most likely to engage in emotional eating. Results also indicated that family strain significantly mediated the association between caregiver age and emotional eating. Linear regression analyses indicated that female gender predicted emotional eating, although family strain did not mediate the association between gender and emotional eating. Similarly, after controlling for family strain as a mediator, higher BMI was still significantly associated with emotional eating, suggesting that BMI is a strong predictor of emotional eating among family caregivers regardless of present family strain.Interventions targeted at managing family strain, particularly for younger, female caregivers, could improve coping and decrease poor health behaviors.

It is important to facilitate death at a place that is in accord with dying patients' preferences. To see if nurses and family members agreed with patients themselves, we asked about attitudes toward death at home of 96 nurses working in oncology departments, 274 cancer patients, and 278 family caregivers in southeastern Iran. Most of the participants saw death at home as a good way of dying and preferred patients to spend their end-of-life days at home. This study supports the argument that providing hospice home care services for terminally ill patients with cancer may facilitate a preference of home death.

The co-design of a mobile health (mHealth) application for family caregivers of people with dementia to address functional disability care needs is presented. Participants included family caregivers of people with dementia, aged care nurses, physicians, occupational therapists, and information technology (IT) experts. The co-design process involved two phases: (1) needs assessment phase (an online survey and in-depth interviews with family caregivers and expert consultation); and (2) development of an mHealth application (content and prototype development). Data triangulation from phase one informed the content of the application. Data triangulation resulted in three content modules: "an overview of dementia and care," "management of daily living activities," and "caregivers' health and well-being." The content was based on contemporary literature, and care guidelines with input from family caregivers and dementia care experts. IT engineers developed the mHealth application. In this study, an Android-based mHealth application was designed to address the functional care needs of family caregivers and the co-design process ensured the incorporation of end-users' real-world experiences and the opinions and expertise of key stakeholders in the development of the application prototype.It is to be noted that before releasing the application into the app store, testing its feasibility and effectiveness is essential.

People with intellectual or developmental disabilities (IDDs) face lifelong challenges in areas such as self-care, learning and socializing abilities. Having such individuals at home brings family caregivers extra stress, especially when support is insufficient. Because of the inadequacy of professional support available globally, the need to increase the ability of the caregivers to provide effective support is evident. Behavior skills training (BST), an approach consisting of instruction, modelling, rehearsal, and feedback, has been used in numerous studies to train caregivers in necessary skills to help their family members with IDDs. This study conducted a systematic review of past literatures, wherein BST was used to train family caregivers of individuals with IDDs. Seventeen relevant studies were summarized according to their countries, participant characteristics, training focus, intervention details, and outcomes. Outcomes revealed that BST had been used to train caregivers of varying demographics, various target skills (e.g. discrete trial training, incidental training, etc.), order of delivery, and sometimes the introduction of novel components. Most studies showed an improvement for both caregivers and the individuals with IDDs. However, some studies did not present desired outcomes in relation to the individuals. Possible reasons and future measures were also discussed in this review.

Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers.

This study characterized emotional connections between largely female caregivers and female care recipients with dementia living in nursing homes with the research question: How does interpersonal communication between family caregivers and older adults with dementia convey enacted emotional support? Ten dyads (8 with at least one female) of regularly-involved family caregivers (7 female; 3 male) and their relatives with dementia (5 female; 5 male) were videotaped. Qualitatively, three themes emerged: 1) distinct conversational topics, 2) shared physical proximity and silence, and 3) catalysts for natural interaction. These findings may help improve the quality of life of these predominantly female dyads.

Objectives: Family caregivers of people with dementia often report feelings of guilt. However, the number of studies analyzing guilt and the factors associated with its appearance are scarce. The aim of this study is to explore the subjective experience of guilt in the family care of people with dementia. Methods: A qualitative analysis of the narratives of 13 family caregivers of people with dementia about their feelings of guilt was done. Results: Seven categories for understanding guilt in caregiving were obtained: guilt derived from actions themselves; guilt derived from one’s limitations; guilt for feeling negative emotions; guilt associated with the change in the relationship with the person cared for; guilt for neglecting other areas; guilt induced by the person cared for, and guilt induced by others. The results showed the existence of cases in which guilt is absent by distress-avoiding processes. Conclusions: Guilt is a relevant variable in understanding caregiver distress, and its analysis is necessary for therapeutic work in the field of care. Clinical implications: Psychological interventions aimed at family caregivers should include specific techniques in order to address guilt feelings., The study was supported by the Spanish Ministry of Economy and Competiveness (grants PSI2015-65,152-C2-1-R and PSI2015-65,152-C2-2-R)

Objective Relationship continuity/discontinuity refers to whether a spouse/partner experiences their current relationship with someone with an acquired brain injury (ABI) as a continuation of their loving pre-injury relationship or as radically changed. The aim of this study was to adapt a questionnaire measure of continuity/discontinuity from dementia research for use in an ABI context and to evaluate the psychometric properties of this adaptation. Method The questionnaire was adapted in response to feedback from a focus group of ABI caregivers. Its psychometric properties were then evaluated in two studies involving partners of people with ABI. Results The measure showed high internal consistency (alpha = .956 in Study 1 and .963 in Study 2), test-retest reliability (intra-class correlation = .960 in Study 1) and discriminative power (Ferguson's delta = .975 in Study 1 and .963 in Study 2). Evidence of construct validity was provided by a predicted pattern of correlations with other relationship questionnaires. Exploratory factor analysis suggested that the questionnaire is unidimensional. Discussion A valid and reliable quantitative measure of relationship continuity/discontinuity will enable more robust evaluation of suggestions about this construct that have been made in qualitative studies (e.g. that discontinuity is associated with a greater sense of caregiver burden).

Older adults residing in long-term care facilities are especially vulnerable for severe illness or death from COVID-19. To contain the transmission of the virus in long-term care facilities, federal health officials have issued strict visitation guidelines, restricting most visits between residents and all visitors, including family members. Yet, many older adults rely on family care for social support and to maintain their health, well-being, and safety in long-term care facilities, and therefore need to stay connected to their families. The federal government, state and local leaders, and long-term care facilities should take further actions to enable the relationship between residents of long-term care facilities and families during the COVID-19 pandemic.

The present study was a 2 × 2 factorial randomized controlled trial that examined if a simulation-based empathy enhancement program and a lecture-based education program, together or separately, improved outcomes of family caregivers of people with dementia.A total of 101 participants were randomly assigned to simulation-based education only, lecture-based education only, simulation-based education plus lecture-based education, or treatment as usual. Data were analyzed using a two-way analysis of covariance while controlling for pretest results, kinship, and gender.Statistically significant interaction effects between the simulation program and the lecture program were found in the levels of well-being and helplessness. The lecture program accompanied by the simulation program led to higher level of well-being in terms of happiness and lower level of helplessness than the lecture program alone. Caregivers with the lecture program provided led to less frequent use of dysfunctional coping strategies than those with no lecture program provided. Caregivers with the simulation program provided led to more frequent use of emotion-focused coping strategies than those with no simulation program provided.Findings of the present study support benefits of combined of and separate simulation-based and lecture-based programs on family caregivers of people with dementia in important outcomes affecting quality of care and quality of lives in families of people with dementia. Further studies are needed to identify intervention components that can improve empathy of family caregivers of people with dementia and be embedded into a multicomponent program tailored better to families in different needs.

To synthesise research describing the long-term unmet needs of carers who are providing care to a stroke survivor at home who is at least 3 months post-discharge.A systematic review with a narrative synthesis of the English-language qualitative and quantitative studies identified from MEDLINE, CINAHL, PsycINFO, EMBASE, AMED, and Scopus was undertaken.Five quantitative studies, seven qualitative studies, and one mixed-method study were included in the review. Five themes of unmet needs were identified from the synthesis: (1) Obtaining adequate information, (2) Taking care of oneself, (3) Service accessibility, (4) Emotional and psychological, and (5) Relationship. Commonly reported needs across the 13 final studies included the need for support from health care and/or service providers, help with self-care, and help with coping and managing emotions. Variables associated with unmet needs included the severity of the stroke that the stroke survivor experienced and the length of hospital stay.Evidence from this review suggests that carers are experiencing a range of long-term unmet needs, particularly in education and training, coping and managing their own emotions, and accessing much-needed services. Recommendations to support carers at home include continuing engagement, assessment, and support from health care providers and services to meet the needs of carers throughout the stroke recovery process.IMPLICATIONS FOR REHABILITATIONCarers of stroke survivors experience complex long-term unmet needs around managing the recovery process of the stroke survivor when they have been discharged from hospital and returned home.Evidence suggests that continuing engagement and support from health care providers and services may assist carers in meeting their unmet needs.Healthcare professionals should provide help in accessing training and services.Support is required to help carers cope and to manage their emotions.

With its massive older population, China faces challenges related to elderly support and care. One of the proposed solutions is to diversify elderly support systems. Towards this goal, the establis...

Online interventions focused on mitigating the negative impact of care on family caregivers of people with dementia have become increasingly popular recently. The aim of this systematic review and meta-analysis was to analyze the effectiveness of these online support programs and to assess whether they do indeed enhance participants' wellbeing. A systematic literature search of 5 scientific databases was performed: PubMed, PsycInfo, CINAHL, Web of Science and Cochrane Library. Online interventions published between January 2014 and July 2018 targeted at informal family caregivers of people with dementia living at home were systemically reviewed. A total of 10 randomized controlled trials (RCTs) or studies with quasi-experimental designs were found. The characteristics of the interventions varied widely, as did their duration and results. In general, the effect size found was medium-small, despite the high methodological quality of the studies. The results reveal that online support interventions are a valid resource for improving caregivers' psychological wellbeing, including depression, anxiety, burden and caregiving competence. The best results were found for multi-component interventions: psychoeducation, training in psychological strategies and skills, professional support and online forums or support groups with other caregivers. The meta-analysis indicated that family caregivers' depression levels were reduced in the intervention group (Hedges' g = -0.21, 95% confidence interval of -0.410 to -0.025; z = -2.216

Purpose: To understand the challenges in delivering comprehensive care for patients recovering from stroke in Guangdong Province, China.Methods: A cross-sectional qualitative study was conducted in two tertiary hospitals with different socio-economic characteristics in Guangdong Province, Southern China. Interviews were conducted with 16 stroke care providers including doctors, nurses, rehabilitation therapists and care workers. The interviews were audiotaped, transcribed and translated from Mandarin to English. Thematic analysis was used to draw out descriptive and analytical themes relating to care providers' experiences of existing routine stroke care services and the perceptions of challenges in delivering comprehensive stroke care.Results: The interviews with stroke care providers highlighted three key factors that hinder the capacity of the two hospitals to deliver comprehensive stroke care. First, expertise and knowledge regarding stroke and stroke care are lacking among both providers and patients; second, stroke care systems are not fully integrated, with inadequate coordination of the stroke team and inconsistency in care following discharge of stroke patients; third, stroke patients have insufficient social support.Conclusions: While comprehensive stroke care has become a priority in China, our study highlights some important gaps in the current provision of stroke care.IMPLICATIONS FOR REHABILITATIONComprehensive integrated stroke care is essential to maximize the effectiveness of stroke services and in China it needs to be further improved.Multidisciplinary stroke care systems should strengthen collaborations across all relevant disciplines and should include a clear role for registered nurses.Follow-up care after discharge needs more engagement with family caregivers.

The demographic processes that have been avolving in recent years around the world and Israeli society in particular, associated with the rise in life expectancy and the aging of population, are r...

Family caregivers of people with dementia often must make crucial medical decisions for them that may increase the burden of care experienced. Although undertaking Advance Care Planning (ACP) might reduce their decision-making burden, completion rates remain very low. The present study aimed to explore the common beliefs of family caregivers of people with dementia about undertaking ACP for themselves. A qualitative study was conducted, using a semi-structured questionnaire based on the Theory of Planned Behavior. Face-to-face interviews were conducted with a convenience sample of 20 family caregivers of people with dementia in Israel. The behavioral beliefs expressed by the participants referred to the dual benefits of ACP, for the person who will not be able to make medical decisions at the end of life and for themselves. Participants mentioned that family members and friends were the main persons with whom they would consult in making decisions regarding ACP. Personal characteristics and instrumental factors were mentioned as enablers and barriers to undertaking ACP. Findings from the study provide an important basis for expanding research and for developing interventions that can encourage undertaking ACP.

Family caregivers play a critical role in dietary care and the nutritional status of people with dementia. The aim of this study was to investigate the effects of a family care-based dementia dieta...

The caregiver burden is increasing in the United States; there are fewer family caregivers each year, people with chronic illnesses are living longer, and costs are skyrocketing. The need for quali...

Aims: This mixed methods quasi-experimental study examined the outcomes of a brief art therapy-based and a narrative interview-based intervention to address the psychosocial needs of home hospice c...

Person-centered, family-oriented services are integral to palliative and end-of-life care. Effective communication with providers informs the quality of the dying experience for patients and how families fare in bereavement. This paper reports findings from a study exploring how communication and care in the later stages of an advanced illness influence family caregivers' well-being in bereavement. A concurrent triangulation design was used to analyze data collected during semi-structured interviews with 108 recently bereaved caregivers from a single hospice agency in Western New York. Findings from this study suggest that family caregivers assume the role of interpreter and advocate while engaged in both formal and informal communication with health care providers at the end of care-recipients' lives. Findings also suggest that families are more likely to feel emotionally prepared for loss and grief when health care providers are available to communicate in a concise, consistent, and compassionate manner. The results illuminate the important connection between communication during the transition from late-stage illness to end-of-life care and preparation for bereavement. The paper concludes with a discussion of how findings from this study align with recent concerted efforts to establish standards and competencies for social work education and practice in palliative care.

Purpose Perceived social support (PSS) is closely linked to health outcomes in dementia patients. However, its continuous benefits are unclear. This mixed-methods study examined the impact of social support perceptions and differentiation among patients and carers during disease progression. Patients and Methods Persons with dementia (PWDs), family caregivers, and community family physicians were recruited from nine community health centers. Semi-structured interviews conducted with 12 PWDs (7 PWDs in mild dementia and 5 in moderate dementia), 12 family caregivers, and 6 community family physicians and conventional content analysis were used to explore social support perspectives at different dementia stages. A total of 470 PWDs were divided into mild (n=224), moderate (n=190), and severe (n=56) groups. Demographic, physical, and psychological factors related to PSS were examined by the group using multiple regression analysis. The group-based characteristics were entered into three prediction models. Results In the qualitative study, three themes of social support were identified: two viewpoints refer to social support; different needs and preferences in each stage; non-personalized support services. Quantitatively, the mild group scored lowest in perceived social support, while the severe group scored highest (χ2=64.70, P