Search Results (67)

This study predicts how sociodemographic trends—smaller family sizes, increased longevity, and marital patterns—could affect family care for people with dementia through 2060. By coupling dementia information from the Health and Retirement Study with a well-established kinship microsimulation model, we analyze the impact of demographic changes on the future care landscape, focusing on changes in race and gender differences in two key areas: (1) the availability of family caregivers for people with dementia, and (2) the likelihood of having a family member with dementia, among those without dementia. Our model projections suggest that future dementia cohorts will be more likely to have a living spouse than the current ones, with diminishing gender disparities due to increased male longevity. However, racial disparities will persist, particularly for Black women. The likelihood of older adults lacking spouses, children, and siblings will increase, but remain low. For potential caregivers, we predict an increased likelihood and longer duration of exposure to family members with dementia in future birth cohorts, particularly for Black individuals, potentially placing more people at risk of the adverse health and well-being outcomes associated with caregiving. Full article

Background: Women carry out an array of demanding tasks due to their multiple roles as mothers, workers, spouses, and caregivers. Their responsibilities to the family and society are essential throughout life, but they become even more important at times of crisis and unanticipated events. All these obligations may have a detrimental effect on their mental health and general well-being. According to the social model of health, through personal development groups, women improve their health because they can transform their personalities, enhance their social and personal abilities, and strengthen their resilience to unforeseen occurrences, health crises, and adversity. Aim of the study: This follow-up study examined the viewpoints of women regarding the durability and efficacy of group therapy’s positive impact on their resilience and mental health, especially through unforeseen circumstances and crises. This group of women had taken part in group therapy six years ago to strengthen their resilience and improve their mental health. Methods: Data collection was implemented through semi-structured in-person interviews conducted from December 2020 to March 2021. Five topics emerged from the framework analysis: (a) personal development and mental health; (b) reinforcement of their resilience; (c) group therapy and women’s health during the COVID-19 pandemic; (d) an assessment of group therapy on women’s health through imagery; (e) future recommendations. Results: Most of the women stated that group treatment had a beneficial impact in terms of improving their individual abilities. The group experience was described as a bridge that allowed them to recognize and accept their emotions. Since COVID-19, women have developed helpful coping strategies to deal with daily tension, loneliness, and work-related stress. Conclusions: Our research results indicate that group therapy is a useful tool for women’s empowerment and mental health in times of crises and adversity. Social policy should take it into account in order to meet women’s highly demanding roles and personal needs. Full article

Family relationships are important for the well-being of older adults, yet these relationships may involve ambivalence and/or conflict, particularly in high-stress scenarios such as hospitalization. This study aimed to identify factors predicting conflict between hospitalized older adults and family members, considering individual, social, and cultural factors. The sample comprised 573 cognitively intact older adults (65+) admitted to internal units in Israeli hospitals. Structural equation modeling (SEM) revealed that emotional support a decrease in conflict (β = −0.105, p = 0.007), while instrumental care (β = 0.146, p = 0.003), number of visitors (β = 0.125, p = 0.011), and the spouse being a primary caregiver (β = 0.159, p < 0.001) was associated with an increase in conflict. On the cultural level, being a Former Soviet Union (FSU) immigrant was a risk factor (β = 0.106, p = 0.016), while being an Israeli Arab had an indirect effect mediated by involvement in instrumental care and larger visitor numbers, which increased the risk for conflict (β = 0.087, p = 0.045). On the individual level, depressive symptoms increased conflict via emotional support (β = 0.01, p = 0.031), and independence in activities of daily living reduced conflict via lower instrumental care (β = −0.002, p = 0.003). These findings highlight the complex interplay of risk and protective factors in predicting conflict and highlight the role of social and cultural factors. Targeted interventions for spouses, caregivers providing instrumental support, and FSU immigrants may help reduce conflict during hospitalization. Full article

Family caregivers of dementia patients experience grief, not only after the death of the patient, but also during the course of the disease. The aim of the present study was to examine the psychometric properties of the Greek version (full and short) of the Marwit–Meuser Caregiver Grief Inventory (MM-CGI and MM-CGI Short Form) before death in a sample of Greek caregivers of persons with dementia. In particular, the study attempts to test the internal consistency reliability as well as the structural and convergent validity of the inventory. The inventory was administered to 515 family caregivers (offsprings and spouses) along with a socio-demographic information form, the Zarit Burden Interview (ZBI), the Beck Depression Inventory II (BDI-II), and the Mini-Mental State Examination (MMSE) exploratively to a subset of dementia patients cared for by survey participants. The application of confirmatory factor analyses revealed a slightly different structure of the Greek version of the MM-CGI, but they fully verified the structure of the Greek version of the MM-CGI-SF. Both the internal consistency reliability and the convergent validity of the subscales of the Greek version of the MM-CGI-SF were good. The findings of the present study indicate that the short version of the Marwit–Meuser Caregiver Grief Inventory is a reliable and valid tool for the early assessment of aspects of grief among the Greek population of family caregivers of dementia patients, in order to potentiate the prevention of their depression and anxiety. Full article

Background: Volunteering is a type of support that provides high motivation and supports social participation during the active aging process without any financial reward. Volunteering services provided by an active older person not only provide free services to the community where needed but also help individuals feel valued by creating a social environment, thereby increasing their resilience. The aim of this study was to determine the views on volunteering in palliative care services among older individuals over the age of sixty who attend the Ege University of the Third Age [U3A] and outline the volunteer profile of older students after receiving palliative care training. Methods: This study was conducted using a qualitative research method. The study population consisted of seventy students from the Ege U3A in İzmir who met the inclusion criteria. Before the training, the U3A students were given a brief pre-test about palliative care and volunteering, followed by 2-day, 16 h basic palliative care training. After the training, the students were asked to respond to written questions about volunteering in palliative care, and their responses were collected in their own handwriting. For the data analysis, a thematic content analysis was conducted using MAXQDA 20, a qualitative data analysis program. Results: In this study, the average age of the 70 University of the Third Age students were 67.47 (60–89) years. The participants were 75% women; 85% were married, 40% lived with their spouse, and 37.14% had been students at the University of the Third Age for 3 years. After the thematic analysis, six main themes emerged: physical and social support, educational support, medical/clinical support, financial support, spiritual support, and caregiving for pediatric patients. Conclusions: In our study, it was clearly observed that older students enrolled in the Ege U3A, who had a high potential for volunteering, were willing to work voluntarily in palliative care within the limits of their physical abilities and resources. This research, which aimed to create a volunteer profile in palliative care, allowed older students to find suitable roles for themselves and increased their motivation to provide this unpaid service. Based on this, it aimed to establish an effective start and an encouraging practice for the development of a pilot study, which is needed for Türkiye. Full article

Individuals with spinal cord injury (SCI) experience an increased risk for obesity and cardiometabolic disease. Recommendations to prevent and treat obesity for those with SCI follow those of the US Department of Agriculture to adopt a healthy eating pattern that includes eating a variety of fruits, vegetables, grains, dairy, and protein, plus limiting added sugars, saturated fats, and sodium. Yet, people with SCI eat too many calories, fat, and carbohydrates and too few fruits, vegetables, and whole grains. The study is based on secondary analyses of SCI participants (n = 122) who enrolled in a weight loss study to determine how SCI may impact their ability to prepare food at home. We hypothesize those with higher-level spinal injuries (specifically, those with cervical versus those with thoracic or lumbar/sacral injuries) experience significantly greater difficulty and are more likely to rely on others’ assistance to perform meal preparation tasks. Physiologic (weight, BMI, blood pressure, hemoglobin A1c) and self-reported data (demographic plus responses to the Life Habits Short Survey and meal prep items) were collected at baseline and qualitative data were obtained from a subsample after the intervention during phone interviews. Participants’ average age was 50 ± 14.7 years old, they lived with SCI for an average of 13.0 ± 13.1 years, and their average BMI was 32.0 ± 6.5. Participants were predominantly white (76.1%) men (54.1%) who had some college education (76.3%), though only 28.8% worked. A substantial proportion of respondents (30% to 68%) reported difficulty across the 13 tasks related to purchasing and preparing meals, with a proxy reported as the most common assistance type used across all tasks (17% to 42%). Forty-nine percent reported difficulty preparing simple meals, with 29% reporting a proxy does the task. More than half reported difficulty using the oven and stove, though between 60% to 70% reported no difficulty using other kitchen appliances (e.g., coffee machine, food processor, can opener), the refrigerator, or microwave. There was a significant difference in kitchen function by injury level. Those living with cervical-level injuries had significantly greater limitations than those with thoracic-level injuries. Spouses, other family members, and caregivers were most likely to serve as proxies and these individuals exerted both positive and negative influences on respondents’ dietary intake, based on qualitative data obtained during interviews. The results suggest that many people living with SCI experience functional and environmental barriers that impact their ability to prepare food and use kitchen appliances. Future research should examine how SCI-related functional limitations, transportation access, accessibility of the kitchen, ability to use appliances, availability of financial resources, and assistance by others to prepare foods impact people’s ability to follow a healthy eating pattern. Full article

Informal caregivers play a crucial role in the care of individuals with dementia, and their caregiving may significantly impact their own health and well-being. This cross-sectional survey study focuses on the perceived importance of various types and characteristics of formal support in a convenience sample of caregivers aged 65 years or older (N = 175) caring for a spouse with dementia. Participants completed a questionnaire containing 17 items describing different types of support and 12 items describing different characteristics of support, rating their importance. The questionnaire also contained questions on various caregiving-related factors. Principle components analysis (PCA) was carried out on the importance ratings, separately, on the types of support items and the characteristics of support items. Each PCA produced three components. For types of support, they were Proficiency and Opportunity, Supportive Structures, Flexible Counselling. For characteristics of support, they included Respectful and Competent, Timely Support, and Accessible and Acceptable. The three characteristics of the support components all had higher mean importance ratings than the three types of support components. The content of some components indicated that while spouse caregivers rate support for their caregiving needs as important, they may not always differentiate their own needs from those of their partner with dementia. The negative impact of caregiving was the factor most strongly and consistently associated with the components’ importance ratings. This study emphasizes the need for health and social care providers to address the unique needs of spouse caregivers while simultaneously ensuring the delivery of quality care for individuals with dementia. Full article

(1) Background: Illness perception (IP) is an important psychological construct for couples dealing with cancer, which impacts health outcomes and the psychological adjustment to cancer. More research is needed to explore the traits of IP and the efforts of couples coping with cancer. Thus, this study was designed to explore the coping experiences and features of the IPs of couples dealing with cancer. (2) Methods: A total of 24 patients with colorectal cancer (CRC) and 20 spousal caregivers (SCs) participated in semi-structured interviews. All interviews were recorded digitally, transcribed, and analyzed by using an inductive thematic analysis. (3) Results: Two themes (individualized and predominant IP; IP sharing and restructuring) were developed. A preliminary framework was formulated to illustrate the relations among subthemes and the relations between themes with an adjustment of a positive IP to CRC. In this framework, based on multiple sources and factors, the natural disparities formed the IPs of the partners of couples and determined the incongruence of IPs. The effects of IP incongruence on lives under the disease guided the three directions of coping approaches (i.e., information and available support, appropriate disclosure and reflection, and leaving the CRC diagnosis behind) which were adopted by couples dealing with CRC to share and restructure the IP with their spouses for effective dyadic coping. (4) Conclusions: This study provides insights to healthcare providers into the experiences of couples dealing with CRC and the development of couple-based IP intervention programs: (a) it initially provides adequate factual knowledge for enhancing beliefs in the ability to control illness, (b) encourages illness-centered conversations and disclosure regarding thoughts and emotions for promoting positive congruence of IP between the partners of couples dealing with a hard dilemma, and (c) guides couples to perceive positive changes and explore the illness’s meaning. Understanding each theme of personalized IP and adopting effective IP coping approaches can help guide couples dealing with CRC to efficiently promote constructive IP and better health outcomes. Full article

The family caregiver of a person with Alzheimer’s disease still experiences, in most cases, negative consequences in their biopsychosocial environment, which are related to the acquisition of this role. However, it has been observed that this fact is not universal in this type of population since benefits can be obtained in the act of caring through the development of resilience. Given this possibility and given that nurses are the health professionals who support people in this illness process, there is an urgent need to identify which non-pharmacological interventions could improve or promote resilience in family caregivers of people with Alzheimer’s disease. Therefore, our overall objective was to determine which interventions are useful in promoting resilience in family caregivers of people with Alzheimer’s disease through a scoping review. The data were analysed using an adapted version of Arksey and O’Malley’s methodological framework, after critically reading the articles with the CasP and MMAT tools. Nine articles were included (five analytical experimental, two quantitative and two mixed). Three types of interventions related to promoting resilience in family caregivers of people with Alzheimer’s disease were identified: meditation, multicomponent psychoeducation and creative art; nurses participated as co-therapists in the last two. Full article

Multimorbidity in older people is strongly linked to the need for acute hospital care, and caregiving activities usually become more complex after patients are discharged from hospital. This may negatively impact the health of close family members, although this has not been comprehensively investigated. This study aimed to explore the general and mental health of close family members caring for frail older (>65) persons recently discharged from acute hospital care, making assessments in terms of gender, relationship to the older person, and aspects of caring. A comparative cross-sectional study was conducted involving 360 close family members caring for frail older persons recently discharged from hospital. The statistical analyses included subgroup comparisons and associations to caring were examined. Half of the family members reported that their general and mental health was poor, with spouses reporting the poorest health. Female participants had significantly more severe anxiety, while males had significantly more severe depression. Providing care for more than six hours per week was associated with poor general health (OR 2.31) and depression (OR 2.59). Feelings of powerless were associated with poor general health (OR 2.63), anxiety (6.95), and depression (3.29). This knowledge may provide healthcare professionals with better tools in order to individualise support, preventing family members from exceeding their resources during these demanding periods. Full article

This study aimed to elucidate the role of psychological factors in caregiver burden among caregivers of stage 4 cancer patients. Data were collected from 328 caregivers of cancer patients, employing the Zarit Care Burden Scale, Depression-Anxiety-Stress Scale (DASS-42), Dysfunctional Attitudes Scale (DAS-A), Ruminative Thought Style Questionnaire (RTSQ), and Coping Orientation to Problems Experienced Inventory (Brief COPE). Males, spouses, and caregivers of patients with a PEG or tracheostomy, or those diagnosed with pancreatic biliary cancer were found to have a significantly higher risk of caregiver burden. Age, sex, caregiver-patient relationship, caregiving duration, patient’s catheter status, cancer types, depression and stress severity, rumination, dysfunctional attitudes, and dysfunctional coping strategies explained 69.7% of the variance in Zarit Care Burden Scale scores (F(14,313) = 51.457, p < 0.001), illustrating their significant predictive relationship with caregiver burden. Moderation analysis revealed significant interactions of emotional coping with depression (b = −0.0524, p = 0.0076) and dysfunctional coping with stress on caregiver burden (b = 0.014, p = 0.006). Furthermore, rumination mediated the relationships between caregiver burden, stress, and depression (p < 0.01). Overall, the results highlight the intricate relationships among caregiver burden, mental health, and coping strategies, suggesting tailored interventions to support caregiver health and quality of care. Full article

While Polish studies focus on the symptoms, causes and treatment of people suffering from Dravet syndrome (DS), much less is known about the situation of the family caregivers of DS children. This study was designed to explore the experiences, daily challenges and needs related to caring for DS children. An anonymous self-administered online questionnaire was developed. The survey was completed by 75 family caregivers affiliated with the Association for People with Severe Refractory Epilepsy DRAVET.PL on Facebook. Most caregivers felt burdened by their children’s reduced mobility (57.3%), mood swings (57.3%), lack of access to rehabilitation and medicine (56%) and healthcare expenses (50.7%). Caregivers also complained of a lack of time to themselves (76%) and work restrictions resulting from caregiving (72%). They consequently reported experiencing fatigue (84%), a deterioration of mental health (60%) and intimacy problems with their spouse/partner (53.4%). An important source of strain was a prolonged diagnostic odyssey and the constant struggle over the healthcare services for DS children. Since DS caregivers’ problems and needs are often overlooked, they may be described as the forgotten people in DS. Healthcare professionals should be educated about the challenges related to caring for DS child, psycho-social status and coping resources of DS caregivers, and should focus on identification, monitoring and supporting caregivers’ physical and mental well-being and needs. Full article

Caregivers experience high levels of emotional stress and must cope with several clinical and hospital-related environmental factors that seriously impact their night’s rest. The purpose of this study was to establish the prevalence of insomnia symptoms in a sample of caregivers of adult hospitalized patients and to examine the relationships between insomnia symptoms and patient and caregiver-associated factors. A total of 152 caregivers were enrolled from the two main hospitals in Granada, Spain. Sociodemographic, economic, and care-related data were collected. Insomnia symptoms, burden, anxiety and depression, social support, and resilience were assessed. Information on patients’ hospital admission, dependence, and neuropsychiatric symptoms was also obtained. Most caregivers were middle-aged women caring for their spouses. Self-reported insomnia prevalence was set at 45.4%. Comparison analyses between caregivers suffering from insomnia symptoms and non-insomniacs showed significantly higher burden, anxiety and depression and patients’ neuropsychiatric symptoms (p < 0.05) and lower resilience and social support in the former (p < 0.01). A regression analysis showed that anxiety (ORa = 1.15; p < 0.05) and higher caregiver education level (ORa = 5.50; p < 0.05) were factors significantly associated with insomnia symptoms. Patients’ neuropsychiatric symptoms showed a trend toward statistical significance as well (ORa = 1.09; p = 0.06). There is an acute need to address, prevent and treat insomnia problems in caregivers. Full article

Chronic lymphocytic leukemia (CLL) caregivers play a central role in disease management—a role that has been heightened during the COVID-19 pandemic given the healthcare system’s reliance on frontline family caregivers and CLL patients’ increased risk of infection and mortality. Using a mixed-method design, we investigated the impact of the pandemic on CLL caregivers (Aim 1) and their perceived resource needs (Aim 2): 575 CLL caregivers responded to an online survey; 12 spousal CLL caregivers were interviewed. Two open-ended survey items were thematically analyzed and compared with interview findings. Aim 1 results showed that two years into the pandemic, CLL caregivers continue to struggle with coping with distress, living in isolation, and losing in-person care opportunities. Caregivers described experiencing increasing caregiving burden, realizing the vaccine may not work or didn’t work for their loved one with CLL, feeling cautiously hopeful about EVUSHELD, and dealing with unsupportive/skeptical individuals. Aim 2 results indicate that CLL caregivers needed reliable, ongoing information about COVID-19 risk, information about and access to vaccination, safety/precautionary measures, and monoclonal infusions. Findings illustrate ongoing challenges facing CLL caregivers and provide an agenda to better support the caregivers of this vulnerable population during the COVID-19 pandemic. Full article

As the number of dementia patients increases, there is a need to protect patients’ right to know. However, in reality, there are cases in Japan where spouses’ deaths are concealed from patients. We conducted a questionnaire survey of care managers (CMs) to obtain their attitude and actual behavior regarding the disclosure of a spouse’s death to patients with dementia. A self-administered, anonymous questionnaire survey was implemented at academic meetings attended by CMs from March to December 2019, inquiring about experiences with spousal deaths of patients with dementia, disclosure rates, behavioral and psychological symptoms of dementia, and depression. Over 80% had experienced the spousal death of a patient with dementia; the percentage of CMs who had implemented the disclosures varied widely. About 18% had experienced worsening behavioral and psychological symptoms of dementia (BPSD), and 26% had worsening depression as a result of the disclosure. About 83% of respondents were positive about disclosure, but about 44% did so less than 50% of the time. This study is the first to reveal the current state of CMs’ policies and behaviors regarding the disclosure of spousal death to patients with dementia in Japan. Family members’ wishes and the possibility of BPSD put a relatively large number of caregivers in a dilemma regarding disclosure. Full article