Family Caregivers Of People Research Articles

Family caregivers of people with dementia experiences of interaction with the Danish healthcare sector: a qualitative study on changes

Family caregivers of people with dementia experiences of interaction with the Danish healthcare sector: a qualitative study on changes

Effect of a single-session mindfulness-based intervention for reducing stress in family caregivers of people with dementia: study protocol for a randomized controlled trial

BackgroundCaregiver stress can pose serious health and psychological concerns, highlighting the importance of timely interventions for family caregivers of people with dementia. Single-session mindfulness-based interventions could be a promising yet under-researched approach to enhancing their mental well-being within their unpredictable, time-constrained contexts. This trial will evaluate the effectiveness and feasibility of a blended mindfulness-based intervention consisting of a single session and app-based follow-up in reducing caregiver stress.Methods/DesignThe study is a single-blinded randomized controlled trial with two arms (intervention versus an education session on dementia care) and assessments at baseline, 8 weeks, and 6 months. The eligibility criteria include: family caregivers aged 18 years or older; providing care for an individual with a confirmed medical diagnosis of dementia for at least 3 months prior to recruitment, with a minimum of 4 hours of daily contact; and exhibiting a high level of caregiver stress. The intervention comprises a 90-minute group-based session with various mindfulness practices and psychoeducation. Participants will receive a self-practice toolkit to guide their practice over a duration of 8 weeks. Sharing activities will be implemented through an online social media platform. The primary outcome is perceived caregiving stress. The secondary outcomes include depressive symptoms, positive aspects of caregiving, dyadic relationship, trait mindfulness, and neuropsychiatric symptoms of care recipients. The feasibility outcomes include eligibility and enrollment, attendance, adherence to self-practice, and retention, assessed using mixed methods.DiscussionThe study will contribute to the evidence base by investigating whether a single-session mindfulness intervention is effective and feasible for reducing caregiver stress among family caregivers of people with dementia.Trial registrationClinicalTrials.gov, NCT06346223. Registered on April 3, 2024.

Validation and reliability of the Chinese version of the Friendship Scale (FS-C) in family caregivers of people with severe mental illness

Social isolation has been shown to contribute to negative health outcomes. Within a Chinese cultural context where people highly value social relationships, family caregivers of people with severe mental illness are prone to experience social isolation due to demanding caregiving tasks and prevalent social stigma. However, an instrument that could comprehensively measure social isolation in Chinese family caregivers is lacking. The six-item Friendship Scale was designed to measure social isolation but it has not previously been validated for use in the Chinese context. This study aimed to assess the reliability and validity of the Friendship Scale – Chinese version (FS-C) in family caregivers of people with severe mental illness (SMI) (N = 200). Confirmatory factor analysis affirmed FS-C's single-factor structure. FS-C demonstrated good internal consistency (Cronbach's alpha = 0.74) and test-retest reliability (ICC = 0.72). Convergent validity was supported by moderate to strong correlations with social networks (r = 0.342, p < 0.01) and loneliness (r = −0.608, p < 0.01). Divergent validity was confirmed by a weak correlation with perceived social stigma (r = −0.190, p < 0.01). FS-C is a reliable and valid tool for assessing social isolation among Chinese family caregivers of people with SMI.

Psychological distress in family caregivers of people with Alzheimer’s disease: Positive and negative aspects of caregiving

Research focusing on family caregivers of people with Alzheimer&amp;rsquo;s disease (PWAD) has predominantly highlighted the negative aspects of caregiving, reporting variables associated with poor mental health such as depression, anxiety, and burden. In recent decades, efforts have also been made to study positive variables associated with care, such as gain (positive results from the caregiving activity), satisfaction, and quality of life. The present study includes both positive and negative aspects of caregivers of PWAD, aiming to clarify their relationships and how they affect psychological distress. The study employed a cross-sectional descriptive design, enrolling a sample consisting of 140 family caregivers of PWAD. The variables assessed as negative aspects included hours of care per day, perceived burden, and psychological distress, while happiness, gain in caregiving, and quality of life were assessed as positive aspects. The results confirmed that family caregivers of PWAD experience both negative and positive aspects associated with caregiving. The relationship between these aspects is inversed: as the perceived burden increases, the mental health of the caregiver declines, and the positive aspects associated with caregiving decrease. Specifically, the perception of happiness begins to decrease with more than 15 h of care/day, while the perception of gain increases after 10 h of care/day. Respite care or financial aid that helps PWAD family caregivers reduce the number of hours dedicated to caring, along with psychological and support interventions to reduce subjective burden, would result in improved mental health of caregivers of PWAD.

The role of hyperarousal for understanding the associations between sleep problems and emotional symptoms in family caregivers of people with dementia. A network analysis approach.

Caregiving for a family member with dementia is a stressful situation that has been associated with symptoms of depression, anxiety, and insomnia. Several models have highlighted the role of hyperarousal for understanding sleep disorders; however, there is little evidence about how insomnia, depression, and anxiety are linked together. Network analysis could help to explore the mechanisms underlying the associations between these disorders. A total of 368 community-dwelling family caregivers of a person with dementia took part in the study. The depression-anxiety-sleep symptoms network was composed of 26 items using the R package qgraph to estimate and visualise the network. The results showed that the strongest symptoms in the network were shakiness, tension, restlessness, nervousness, and restless sleep. Tension was the symptom with the most predictive power, restless sleep was the most important shortcut node in the connection between other symptoms. The central stability coefficient showed adequate indices. The strength of hyperarousal symptoms suggested a prominent role of this variable. Our results invite the hypothesis that sleep problems may trigger symptoms specific to depression via fatigue or energy loss. This study is the first to examine the network structure of the associations between the symptoms of depression, anxiety, and insomnia in a sample of informal caregivers, and to explore the role of hyperarousal in this network.

Relationship quality perceived by family caregivers of people with dementia in the context of a psychoeducational intervention: A qualitative exploration.

Caring for a person with dementia can be a challenging experience, often associated with chronic stress and a heavy burden on family caregivers. Dementia also impacts the relationship between the caregiver and the person with dementia. The quality of this relationship is, in turn, an important factor influencing the well-being of both dyad members. The psychoeducational intervention "Learning to feel better . . . and help better" has shown positive results regarding family caregivers' subjective burden, psychological distress, and self-efficacy. However, relationship quality has not been addressed in the context of this intervention. A longitudinal constructivist grounded theory approach was used to explore relationship quality as perceived by caregivers, possible changes and intervention components facilitating or preventing such changes. Three qualitative, semi-structured interviews (before, during and after the intervention) were performed with 13 family caregivers from three different intervention groups. The resulting 39 interviews were analysed regarding individual caregiver trajectories, per time point for all caregivers and regarding specific caregiver subgroups. A model focusing on sustaining relationship quality in dementia was developed. It shows strategies that family caregivers develop and apply to facilitate positive interactions and feelings of connectedness with their family members with dementia. It also indicates that mastering such strategies requires reflective skills based on specific knowledge of dementia and coping strategies, which can be enhanced through active skills training, in which caregivers are guided to work on their individual stressful situations. Factors hampering change included difficulties in accepting dementia-related changes. Findings suggest that psychoeducation, with active skills training based on caregivers' current daily life situations, providing systematic procedures to handle daily challenges and specific knowledge about the impact of the disease, could support them in developing and applying supportive strategies to sustain or improve their relationship to their family member with dementia.

How do care-related beliefs contribute to depression and anxiety in family caregivers of people with dementia? Testing a cognitive vulnerability-stress model

Objectives Care-related beliefs are considered risk factors for decreased mental health in family caregivers of people with dementia. However, their exact role in the caregiver stress process remains unclear. Hence, we tested a cognitive vulnerability-stress model of depression and anxiety in family caregivers of people with dementia. Method A cross-sectional study was conducted using baseline data from a caregiver intervention trial (N = 322). Within Bayesian moderated mediation analysis, we examined mediation of effects of objective demands (severity of dementia, challenging behavior, caregiving intensity, caregiving duration) on depression and anxiety via subjective caregiver burden and moderation by care-related beliefs in four domains (dysfunctional caregiving standards, dysfunctional attitudes towards dementia, functional self-care-related beliefs, functional acceptance-related beliefs). Results The relation between objective demands and subjective burden was amplified by dysfunctional caregiving standards and dysfunctional attitudes towards dementia and mitigated by functional self-care-related beliefs. Further, functional acceptance-related beliefs attenuated the effect of subjective caregiver burden on depression. Conclusion The study provides preliminary evidence for a cognitive vulnerability-stress model of depression and anxiety in family caregivers of people with dementia. The results indicate that the four-domain model of care-related beliefs is a valuable framework for future research and may serve as a heuristic model for cognitive-behavioral therapy in this population.

Family Care in Members with COVID-19 Using Telenursing.

The COVID-19 pandemic has caused the infection and death of millions of people around the world. The Pan American Health Organization (PAHO) and the Center for Disease Control and Prevention have issued recommendations for caregivers of patients sent home with COVID-19, such as; the use of facemasks, hygiene at home, the use of the vaccine, among others. The purpose of the study was to determine the relationship between the level of support from information technologies (Whatsapp) with the level of knowledge to provide better care at home by family caregivers of people with COVID-19 by an educational program to 130 caregivers.

What Has the Pandemic Taught Us About Caregiving? Mental Health in Family Caregivers of People with Dementia One Year After the Lock-Down Due to the COVID-19 Pandemic.

Caregiving for a person with dementia is considered a situation of chronic stress, with consequences on caregivers' physical and psychological health. The usual challenges of dementia care were intensified during the pandemic due to the risk of contagion, social isolation measures, and decrease in healthcare resources. The COVID-19 pandemic increased the stress both in the persons with dementia and their caregivers. This commentary reflects on the long-term effects of the pandemic on caregivers' mental health, focusing on the study by Olavarría and colleagues and drawing future research lines for culturally diverse family caregivers.

Evaluation of interactive web-based tools to stimulate reflection and communication about advance care planning with people with dementia and their family caregivers

BackgroundPeople with dementia and their family caregivers often encounter challenges in engaging in advance care planning (ACP), such as a lack of information and difficulties in engaging in ACP conversations. Using a user-centred design, we developed two interactive web-based tools as part of an ACP support website to stimulate ACP reflection and communication: (1) the ‘Thinking Now About Later’ tool, with open-ended questions about ‘what matters most’, and (2) a digital version of the ‘Life Wishes Cards’, a card tool with pre-formulated statements that prompt reflection about wishes for future care. This study aimed to evaluate the use of and experiences with two web-based tools by people with dementia and their family caregivers.MethodsDuring an eight-week period, people with dementia and family caregivers were invited to use the ACP support website in the way they preferred. The mixed-methods evaluation of the ACP tools involved capturing log data to assess website use and semi-structured qualitative interviews to capture experiences. Analyses included descriptive statistics of log data and framework analysis for qualitative data.ResultsOf 52 participants, 21 people had dementia and 31 were family caregivers. The ‘Thinking Now About Later’ tool and ‘Life Wishes Cards’ were accessed 136 and 91 times respectively, with an average session duration of 14 minutes (SD = 27.45 minutes). 22 participants actively engaged with the tools, with the majority using the tools once, and seven revisiting them. Those who used the tools valued the guidance it provided for ACP conversations between people with dementia and their family caregivers. Participants reported that people with dementia experienced barriers to using the tools on their own, hence family caregivers usually facilitated the use and participation of people with dementia. Some highlighted not knowing what next steps to take after completing the tools online.ConclusionsAlthough less than half the people used the ACP tools, those who used them found them helpful to facilitate communication between people with dementia and their family. Family caregivers of people with dementia played a crucial role in facilitating the use of the web-based tools.

The experiences of family caregiver and clinician facilitators implementing a co-delivered acceptance and commitment training (ACT) intervention

Family caregivers of people with neurodevelopmental disabilities (NDDs) experience high levels of stress, anxiety, and depression, yet few interventions target their wellbeing. Moreover, most evidence-based interventions fail to include caregivers in their design and delivery despite evidence that caregivers can play a vital role in enhancing the success of interventions to other caregivers. The present study explored the experiences of caregivers and clinicians who worked in partnership to co-deliver an Acceptance and Commitment Training (ACT) intervention to caregivers of people with NDDs in the community.Caregiver and clinician facilitators completed an open-ended survey asking about their experiences co-facilitating an evidence-based, group ACT intervention. Thematic analysis was used to analyze the data. Elements of successful partnerships, the benefits and challenges co-leading the intervention, and considerations for future implementation efforts were explored. Findings revealed the complementary contributions of facilitators’ diverse perspectives, experiences and skills, as well as how regular communication, trust, and flexibility supported successful partnerships. Benefits of co-facilitating included connection with others and personal growth, while challenges included emotional costs, capacity and compensation. Taken together, results highlight ways to support the successful implementation of an ACT intervention co-led by caregivers and clinicians, as well as other partnered interventions.

Relationship between Depressive Symptoms, Caregiver Strain, and Social Support with Dementia Grief in Family Caregivers.

Background and Objectives: Dementia grief in family caregivers of people with dementia refers to grieving prior to the death of the care recipient. It is related to psychosocial risk factors that may have a negative impact on the health of these family caregivers. This study aimed to describe the relationship between depressive symptoms, caregiver strain, and social support with dementia grief in family caregivers of people with dementia. Materials and Methods: A descriptive correlational cross-sectional study was conducted. A total of 250 family caregivers of people with dementia participated. Dementia grief was the main variable, and depressive symptoms, caregiver strain, and social support were assessed. Additionally, socio-demographic data were collected. Descriptive statistics were calculated, and a bivariate correlation analysis and a multiple linear regression analysis were performed for dementia grief. Results: Higher scores for dementia grief were found in women, in family caregivers of patients at advanced stages of dementia, and in family caregivers with a low level of education. High levels of depressive symptoms and caregiver strain and low levels of social support indicated greater intensity of dementia grief. Depressive symptomatology was the variable with the greatest influence on dementia grief. Caregiver strain and social support also related to dementia grief, but to a lesser extent. Conclusions: In family caregivers, depressive symptoms, caregiver strain, and social support are related to the intensity of dementia grief, with a greater influence of depressive symptoms. Moreover, being female, having a low level of education, and caring for a care recipient at an advanced stage of dementia are factors associated with increased dementia grief. Concerning study limitations, the sample was restricted, belonging to a specific region of Spain and to a Provincial Federation of associations. It is necessary to exercise caution in generalizing results due to the sociodemographic and geographical characteristics of the sample.

Interventions to Foster Resilience in Family Caregivers of People with Alzheimer's Disease: A Scoping Review.

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.

Emotion Regulation, Coping Strategies, and Hazardous Drinking Among Family Caregivers of People With Alzheimer's Disease and Related Dementias.

The current study investigated hazardous drinking and alcohol use disorders among 453 family caregivers of individuals living with Alzheimer's disease and related dementias (ADRD). We examined the prevalence of hazardous drinking and its relationship with emotion regulation and coping strategies (problem-solving, social support, and avoidance) using data from the first wave of a longitudinal study on daily ADRD caregiving experiences. A binary logistic regression model was performed to predict the relationship between potential risk factors and hazardous drinking. Findings revealed that 18.1% of ADRD caregivers screened positive for hazardous drinking based on the Alcohol Use Disorders Identification Test-Consumption. Caregivers experiencing greater difficulties in emotion regulation and greater reliance on avoidance as a coping strategy were at higher risk of screening positive for hazardous drinking. These findings stress the importance of targeted interventions to improve emotion regulation and reduce avoidance coping in ADRD caregivers, ultimately enhancing their well-being. [Research in Gerontological Nursing, 17(2), 81-90.].

Evidence of validity and accuracy for the Mindful Self-Care Scale-Brief among family caregivers of people with cancer in Brazil: A cross-sectional study.

This study aimed to evaluate the evidence of validity and accuracy for the Mindful Self-Care Scale-Brief (B-MSCS) in Brazil among family caregivers of people with cancer. This was a cross-sectional study with a sample of 203 family caregivers of people with cancer. The instruments used in this study were the following: B-MSCS, Brief Resilience Scale, and Brief Scale for Spiritual/Religious Coping. Exploratory factor analysis was carried out using the principal axis factoring method and direct oblimin oblique rotation, and confirmatory factor analysis using the robust weighted least squares means and variance adjusted estimation method and GEOMIM oblique rotation. The internal consistency of the latent factors was measured using Cronbach's alpha coefficients. The 6-factor model showed good fit to the data, with satisfactory reliability indices and adequate representation of the scale's internal structure. The results that can support arguments in favor of validity evidence based on internal structure for the B-MSCS-Brazilian version (BR) relate to a 19-item version which, grouped into 6 latent factors, explained 46.47% of the variance. The factor solution reproduced 79.2% of the theoretically expected structure and 5 items were excluded. The Cronbach's alpha coefficient of the factors in the B-MSCS-BR ranged from 0.58 to 0.84. Positive religious/spiritual coping had a direct association with the B-MSCS-BR factors, with the exception of the Physical Care factor (r = 0.033, p = 0.635). Negative spiritual/religious coping was inversely associated with the Mindful Relaxation (r = -0.160, p = 0.023), Supportive Relationships (r = -0.142, p = 0.043), and Mindful Awareness factors (r = -0.140, p = 0.045). There were no associations between the B-MSCS-BR factors and resilience. The findings reveal that the B-MSCS (19-item) is a valid, reliable, and culturally-appropriate instrument to examine the practice of mindful self-care by family caregivers of people with cancer in Brazil.

Purpose in life moderates the relationship between loneliness and caregiving stress among family caregivers of people with mental health problems

ObjectiveProviding care to others can exert a profound impact on caregivers' sense of purpose or meaning in life, thereby reciprocally influencing the caregivers' overall health and well-being. This study aims to investigate whether the sense of purpose in life moderates the association between loneliness and caregiving stress among family caregivers of people with mental health problems. MethodsA sample of family caregivers of people with mental health problems (N = 468, 57.1 % female) drawn from the 2020 survey of the Caregiving in the U.S. was investigated. Descriptive statistics, correlation analysis, and a multiple regression with an interaction term were performed. ResultsHigher levels of loneliness were associated with enhanced caregiving stress. Moreover, after demographic and care-related factors were controlled for, the association between loneliness and caregiving stress was moderated by purpose in life; namely, as the sense of purpose in life increased, so did the intensity of the relationship between loneliness and caregiving stress. ConclusionReducing loneliness or strengthening the sense of purpose helps alleviate caregiving stress, and lonely family caregivers with a strong sense of purpose deserve extra attention.

Health-related quality of life instrument with 8 items to measure health-related quality of life among family caregivers of people with dementia: A pilot validation study.

The health-related quality of life instrument with 8 items (HINT-8) was developed to measure health-related quality of life (HRQoL) in Korea. However, the HINT-8 has not yet been validated among the family caregivers of people with dementia (PwD). A cross-sectional pilot study. The study aimed to examine the convergent and discriminant validity of the HINT-8 among family caregivers of individuals with dementia. Forty-seven family caregivers of PwD. HINT-8 was compared with the 5-level EQ-5D (EQ-5D-5L) to assess its convergent and discriminant validity. Additionally, the association between the two instruments assessing HRQoL was examined using the short-form Bédard-Zarit Burden Interview (SZBI). The HINT-8 was a promising and valid HRQoL instrument for family caregivers of PwD. There was a significantly high correlation between the overall HINT-8 and EQ-5D-5L indices (r=0.85, p<.001). The HINT-8 had acceptable psychometric properties compared to the commonly used EQ-5D-5L, as indicated by the subdomains associated with family caregivers' burden measured by the SZBI. Future studies should compare the HINT-8 with existing dementia carer-specific QoL instruments among a larger study sample to enhance its statistical power and confirm its reliability and structural validity.

Psychometric evaluation and adaptation of the stigma affiliation scale into the Indonesian language in primary family caregivers of schizophrenia patients

IntroductionThe Stigma Affiliation Scale (ASS) is an instrument to assess affiliation stigma used widely worldwide. This study aims to adapt the ASS to the Indonesian language and to evaluate the psychometric properties of the ASS among family caregivers of people with schizophrenia in Indonesia.MethodsA cross-sectional study was conducted of 94 schizophrenia patients’ family caregivers in communities, i.e., an items analysis, construct validity using the known-group method, and internal consistency reliability.ResultsThe consistency between items and overall scores using Pearson product-moment correlation shows that all the items had Pearson’s coefficient correlation ≥ 0.300, indicating good and acceptable discriminant power. The construct validity using the Mann–Whitney U test comparing the ASS scores between the primary caregivers and other family members of schizophrenic patients showed higher scores in the primary caregivers than the other family members in the three domains (p < 0.0001), indicating excellent construct validity. Cronbach’s alpha was 0.80–0.89 and above 0.90, which indicate good and excellent reliability, respectively.ConclusionThe Indonesian version of ASS shows good psychometric properties among family caregivers of people with schizophrenia in Indonesia.

NegotiAge: Development and pilot testing of an artificial intelligence-based family caregiver negotiation program.

Family caregivers of people with Alzheimer's disease experience conflicts as they navigate health care but lack training to resolve these disputes. We sought to develop and pilot test an artificial-intelligence negotiation training program, NegotiAge, for family caregivers. We convened negotiation experts, a geriatrician, a social worker, and community-based family caregivers. Content matter experts created short videos to teach negotiation skills. Caregivers generated dialogue surrounding conflicts. Computer scientists utilized the dialogue with the Interactive Arbitration Guide Online (IAGO) platform to develop avatar-based agents (e.g., sibling, older adult, physician) for caregivers to practice negotiating. Pilot testing was conducted with family caregivers to assess usability (USE) and satisfaction (open-ended questions with thematic analysis). Development: With NegotiAge, caregivers progress through didactic material, then receive scenarios to negotiate (e.g., physician recommends gastric tube, sibling disagrees with home support, older adult refusing support). Caregivers negotiate in real-time with avatars who are designed to act like humans, including emotional tactics and irrational behaviors. Caregivers send/receive offers, using tactics until either mutual agreement or time expires. Immediate feedback is generated for the user to improve skills training. Pilot testing: Family caregivers (n = 12) completed the program and survey. USE questionnaire (Likert scale 1-7) subset scores revealed: (1) Useful-Mean 5.69 (SD 0.76); (2) Ease-Mean 5.24 (SD 0.96); (3) Learn-Mean 5.69 (SD 0.74); (4) Satisfy-Mean 5.62 (SD 1.10). Items that received over 80% agreements were: It helps me be more effective; It helps me be more productive; It is useful; It gives me more control over the activities in my life; It makes the things I want to accomplish easier to get done. Participants were highly satisfied and found NegotiAge fun to use (91.7%), with 100% who would recommend it to a friend. NegotiAge is an Artificial-Intelligent Caregiver Negotiation Program, that is usable and feasible for family caregivers to become familiar with negotiating conflicts commonly seen in health care.

Correlates of felt age in caregivers of people with dementia: findings from the IDEAL study.

Family relationships influence how people appraise their own aging and how their appraisals impact their health. We analyzed felt age (FA) among family caregivers of people with dementia. We used a stratified sample of 1,020 spousal and 202 adult-child caregivers from the IDEAL study. We estimated cross-sectional associations and bidirectional influences between caregivers' FA and their health and wellbeing (depression, number of health conditions, stress, positive aspects of caregiving) over 2 years. Among spousal caregivers, 25% had a younger FA and 36% had an older FA. Among adult-child caregivers, 21.8% had a younger FA and 36.1% had an older FA. In spousal and adult-child caregivers an older FA was cross-sectionally associated with higher depression, number of health conditions, and stress, and fewer positive aspects of caregiving. In spousal caregivers, hours of care per day moderated the association between FA and depression, and FA was associated with stress 1 year later. Caregiving may impact FA and its relationship with health. We urge continued research on the connections between caregiving and FA, and how interventions might support caregivers' positive views on their own aging, which will translate views on aging scholarship to meaningfully improve caregivers' lives.