Family Caregivers Of People Research Articles

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.

Psychosocial factors affected by burden in family caregivers of people with Alzheimer's disease.

Identify the psychosocial factors affected by the burden on family caregivers of people with Alzheimer's disease. Forty-nine family caregivers of people with Alzheimer's disease, from a city in Minas Gerais, Brazil, participated in the study. They filled out a form of sociodemographic variables, and answered the Burden Interview Scale (BI-Zarit), Quality of Life in Alzheimer's Disease Caregiver version (CQoL-AD), the Depression, Anxiety and Stress Scale (DASS-21), the Mindfulness and Awareness Scale (MAAS) and the Clinical Dementia Rating Scale (CDR). All participants were female with an average age of 54.26 (±8.99). Daughters comprised 77.55% of the sample, and 34.69% were sole caregivers. The Bi-Zarit scale positively and significantly correlated with DASS-21 Depression (r=0.440; p=0.002), DASS-21 Anxiety (r=0.415; p=0.003), DAAS-21 Stress (r=0.583; p<0.001). On the other hand, it showed a negative correlation with MAAS (r=-0.429; p=0.002) and CQoL-AD (r=-0.533; p<0.001). This study demonstrates that family caregivers of people with Alzheimer's disease may be overloaded, and that the heavier the burden, the lower level of attention, the worse quality of life and the greater the possibility for the caretaker to present symptoms of depression, anxiety, and stress.

Burden of Care, Depression, and Anxiety Among Family Caregivers of People With Dementia.

There are many challenges that entail caring for an individual with dementia, affecting not only the individual with the condition but also their caregivers. This can lead to increased burden, frustration, and depression among those taking care of them. A research gap exists concerning the care of people with dementia in Egypt, particularly regarding the mental health of caregivers. Limited studies have been conducted in Egypt, particularly focusing on the mental health of caregivers. This lack highlights the need to understand the prevalence and impact of caregiver burden in this population. The research aimed to evaluate the burden of dementia, levels of depression, and anxiety among family caregivers of individuals with dementia. A cross-sectional study was conducted at a geriatric unit clinic of a psychiatric hospital in Cairo University, Egypt. Caregiver burden, anxiety, and depression were assessed using questionnaires. These questionnaires included the Zarit Burden Interview (ZBI), Generalized Anxiety Disorder scale (GAD-7), and Patient Health Questionnaire-9 (PHQ-9), together with demographic data on the patients and caregivers. The majority of the 141 participants (73% (n = 103)) were female, mostly daughters, with an average age of 40 years. Approximately 50% (n = 71) of the subjects exhibited mild to moderate burden, whereas 30% (n = 43) showed moderate to severe burden. About 31% (n = 44) of the subjects exhibited symptoms of moderate depression, whereas 9% (n = 13) had symptoms of severe depression. Furthermore, almost 43% (n = 60) of caregivers exhibited a moderate level of anxiety. Furthermore, a significant association was seen between caregiver burden and the presence of anxiety and depression. This study showed a substantial burden in providing care, elevated levels of despair, and anxiety among caregivers of PWD. The findings highlight how important it is to develop targeted therapies and support systems in order to lessen the load on caregivers, advance their mental health, and improve overall care for both caregivers and their patients in Egypt. Policy-makers should prioritize investing in dementia-related support systems and services to empower caregivers and improve the quality of life for both caregivers and their patients.

Profiles of Dementia Caregivers according to Psychosocial and Resource Variables. Importance of Kinship.

The present study aims to analyze the existence of different profiles in family caregivers of people with dementia according to psychosocial and resource variables. In addition, it aims to study whether there is a greater representation of each kinship group in each of the profiles and if there are differences in emotional distress among such profiles considering the kinship with the care-recipient. Participants were 288 family dementia caregivers, divided into four kinship groups (wives, husbands, sons and daughters). Psychosocial (familism, dysfunctional thoughts and experiential avoidance), resource (leisure activities and social support) and outcomes (depressive, anxious and guilt symptomatology) variables were collected. A hierarchical cluster analysis using Ward's method, an exploratory factor analysis of two fixed factors and contingency tables were performed. Five clusters were obtained: Low psychosocial vulnerability-High resources, Low psychosocial vulnerability-Low resources, Mixed, High psychosocial vulnerability-High resources, and High psychosocial vulnerability-Low resources. Results suggested that clusters associated with lower distress were the Low psychosocial vulnerability-High resources and the High psychosocial vulnerability-High resources. Clusters associated with higher distress were the Low psychosocial vulnerability-Low resources and Mixed. High levels of dysfunctional thoughts, familism and experiential avoidance do not always have a maladaptive function. This could depend on sociocultural and resource variables such as the kinship with the caregiver or perceived social support. The identification of profiles of family caregivers potentially needing protection and vulnerable to psychological distress could help to increase the effectiveness of interventions aimed at this population.

Examine Fatigue Levels And Mental Health Among Dementia Patients' Caregivers In Saudi Arabia

Introduction: Since dementia has no treatment, its prevalence will strain healthcare systems. Dementia also impairs daily tasks, requiring long-term caregivers. Since dementia patients need 24-hour care, it can have a substantial impact on the caregivers' physical health and put a strain on their caregivers' mental health. Aim: Evaluate the extent of fatigue and mental health indicators among dementia patients' caregivers in the eastern region. Methods: A descriptive cross-sectional study was conducted from June 2023 to April 2024 at private hospitals, geriatric homes, and private homes in the eastern region of Saudi Arabia to collect data from dementia caregivers. The Fatigue Assessment Scale (FAS) and General Health Questionnaire (GHQ 12) collected data from 205 convenient dementia caregivers. Results: 50% of the participants reported fatigue, while 72% reported mild mental exhaustion. The participants had a moderate level of fatigue (M= 23.8, SD= 6.65). There is no statistically significant difference in the overall fatigue scores among relative caregivers and nurses (p=0.211); however, there is a difference between males and females (p=&lt; .001). Specifically, the females experienced more fatigue. There is no significant difference in general mental health among the two caregiver groups (p=0.211) or between genders (p = 0.085). Conclusion: The majority of the participants suffered from mild mental exhaustion, while half reported fatigue. Still, there is a difference between males and females, with females reporting more fatigue than males. Family caregivers for people with dementia encounter challenges and require comprehensive assistance to meet their demands.

ALCOHOL CONSUMPTION AND ABUSIVE/NEGLECTFUL BEHAVIORS AMONG FAMILY CAREGIVERS OF PEOPLE LIVING WITH DEMENTIA

Abstract Despite its suspected role in elder abuse and neglect (EAN), little is known about alcohol use disorders (AUD) among family caregivers of people with Alzheimer’s disease and related dementia (ADRD). As part of a micro-longitudinal study in which caregivers completed 21 daily surveys about their caregiving experiences, we examined the effects of daily drinking behaviors and screening positive for hazardous drinking (based on the Alcohol Use Disorder Identification Test (AUDIT-C)) on the daily risk of EAN. A generalized linear mixed model with days (n = 9513) nested within caregivers (N=453) was used to evaluate the relationships between caregivers’ alcohol consumption patterns and the odds of using an abusive and/or neglectful behavior. Caregivers’ alcohol consumption on a given day increases the odds of using physical abuse (OR=2.19; 95% CI=1.12–4.28; p=.022), psychological abuse (OR=1.40; 95% CI=1.01–1.94; p=.041) and neglect (OR=1.48; 95% CI=1.17–1.86; p=.001) that same day. Screening positive for AUD significantly increases the odds of a caregiver’s use of neglect on a given day (OR=2.43, 95% CI=1.52–3.88, p=&amp;lt;.001), but not physical or psychological abuse. There were no interaction effects between AUD and daily drinking, meaning AUD increases the risk of neglect independent of daily drinking behavior. Interventions to manage AUD may reduce the risk of neglect among ADRD caregivers experiencing hazardous drinking. Interventions focused on daily drinking behaviors are needed to reduce the general risk of EAN among ADRD caregivers. Findings show that subpopulations exist within ADRD caregivers who engage in EAN behaviors that would benefit from different targeted interventions.

EXPLORATION OF PREPAREDNESS FOR MEDICAL DECISION MAKING FOR FAMILY CAREGIVERS OF PEOPLE WITH DEMENTIA

Abstract As dementia progresses, many family caregivers of people with dementia (PWD) often experience increasing demands of making medical decisions for their loved ones and feel unprepared, causing severe psychological distress. This presentation explores what factors influence preparedness level of family caregivers in medical decision-making for PWD. As part of a larger two-group randomized trial in which 273 PWD-family caregiver dyads received either a control protocol or a multi-component communication intervention including advance care planning (ACP) facilitation, this qualitative study used thematic analysis methods to analyze 10 transcripts resulting from audio-recorded and transcribed ACP conversations with an ACP facilitator, PWD, and family caregivers. Interview duration was over 30 minutes. The major themes identified were: (1) knowledge about PWD’s treatment preferences, (2) experience with death and dying, (3) previous decision-making involvement, and (4) spiritual beliefs. Many family caregivers found ACP conversations with PWD about their goals of care to be beneficial in improving their confidence in making medical decisions. A few participants also reported witnessing a loved one’s suffering at the end of life or having made care decisions for family before helped them to initiate conversations with PWD about medical wishes, thus enhanced readiness for decision making. Lastly, few caregivers reported belief in God would help them make the “right decisions”. Preliminary results highlight that caregivers’ understanding of PWD’s treatment preferences helps to prepare family caregivers for decision-making, underlining the need for early and culturally appropriate ACP conversations among residents, caregivers, and clinicians.

An integrated model of psychosocial correlates of insomnia severity in family caregivers of people with dementia

Objectives Research has shown the relevance of stress and coping factors in explaining caregivers’ insomnia symptoms. However, few attempts have been made to empirically test an integrative model for insomnia severity in family caregivers of people with dementia. The aim of this study was to test such a model, in which insomnia severity is proposed to be influenced by predisposing factors, precipitated by stressors, and perpetuated by behaviors to cope with these stressors. Methods 311 family caregivers of people with dementia were assessed for variables categorized as predisposing (e.g. female gender), precipitating (e.g. care-recipient’s behavioral and psychological symptoms of dementia [BPSD]), and perpetuating factors (e.g. sleep aids). A theoretical model was developed and then statistically tested using structural equation modelling, analyzing the direct and indirect effects of the assessed variables on caregivers’ insomnia severity. Results Distress, sleep aids, and experiential avoidance showed a direct association with insomnia severity. Female gender, younger age, cognitive fusion, leisure activities, dysfunctional thoughts, frequency and distress caused by care-recipient’s BPSD showed indirect associations with insomnia severity. The model explained 22% of the variance of caregivers’ insomnia severity. Conclusion The results provide additional empirical support for the importance of predisposing, precipitating and perpetuating factors associated with caregivers’ insomnia severity. The integrative model we propose may also be useful for developing interventions targeting insomnia symptoms in family dementia caregivers.

Predictors of Sleep Quality in Spouse Caregivers of Community-Dwelling People With Dementia Using Propensity Score Matching Analysis.

Many family caregivers of people with dementia (PwDs) have sleep problems and poor sleep quality. Sleep may be negatively affected by caring for a family member with dementia, especially a spouse. This study was designed to assess sleep quality in spouse caregivers of PwDs and determine the impact of care provision on their sleep quality. A secondary analysis of 58,050 participants in the 2018 Korea Community Health Survey was conducted. To prevent selection bias, a propensity score matching analysis was performed. Multiple logistic regression analysis was conducted to investigate the predictors of sleep quality. After obtaining a propensity score matching threshold of 3:1, the percentage of poor sleepers was 24.2% in the control group and 33.3% in the spouse-caregiver group, which indicates a significant difference (χ 2 = 11.79, p = .001). After adjusting for depressive symptoms in the multiple logistic analyses, no intergroup difference was found in terms of risk of poor sleep quality (odds ratio = 1.12, 95% CI [0.90, 1.61]). The findings of this study support that spouse caregivers of PwDs have poorer sleep quality than their nonspouse peers and that management of depressive symptoms is important to improving the sleep quality of spouses providing care to PwDs. Nursing interventions such as light therapy and exposure to sunlight during daytime hours to both improve sleep quality and reduce depressive symptoms can improve sleep quality in this vulnerable caregiver group.

P117: The role of hyperarousal for understanding the association among sleep problems and emotional symptoms in family caregivers of people with dementia. A network analysis approach.

Objective:Caregiving for a family member with dementia is a highly stressful situation that may last up to several years, and has been associated with symptoms of depression, anxiety, and sleep problems. These disorders frequently co-occur, with previous studies suggesting a bidirectional relationship between sleep and psychiatric disorders (i.e., anxiety and depression). Several models have highlighted the role of hyperarousal for understanding sleep disorders; however, there is little evidence about how sleep problems, depression and anxiety are linked together. Network analysis (NA) could help exploring the mechanisms underlying the associations between anxiety, depression, and sleep disturbances.Methods:Participants were 368 family caregivers of a person with dementia. The depression-anxiety-sleep symptoms network was composed of 26 items. All the analyses were done using R (version 4.1.1).Results:Symptoms of tension, shakiness, restlessness, nervousness, and anxiety were strongly connected with the symptom feeling depressed. Symptoms of insomnia were connected to trouble focusing, which was linked to feeling that everything is an effort and apathy. The strongest nodes in the network were shakiness, tension, restlessness, nervousness, and restless sleep. Tension was the node with the most predictive power, while restless sleep was the node with the highest betweenness. Central stability coefficient showed adequate indices.Conclusion:Hyperarousal symptoms (e.g., tension, restlessness) were the most strongly connected symptoms and showed close connection with symptoms of depression. The strength of these nodes suggests a prominent role of hyperarousal to maintaining, or even fueling, anxiety and depressive symptoms. Besides, our results invite the hypothesis that sleep problems may trigger symptoms specific to depression via fatigue or energy loss. Even though this study is limited by its cross-sectional design, it is the first to examine the network structure of the associations between symptoms of depression, anxiety, and sleep problems in a sample of informal caregivers, and to explore the role of hyperarousal in this network. Future studies should explore the temporal association between symptoms and the network dynamics, including response to the potential treatments.

A Music Based Intervention: “Stay with Me” Results Reveal Challenges and Opportunities related to Burden in Family Caregivers of People with ADRD

AbstractBackgroundFamily caregivers of home‐based people with ADRD took part in a 6‐week psychoeducational music‐based intervention, facilitated by a board‐certified music therapist. Caregivers identified care recipients’ strengths and needs related to symptoms of ADRD. In the following weeks, caregivers learned how to incorporate music‐based activities during their care. This included caregiver singing, adding background music to bath/shower routines, creating personalized playlists, the use of music for sundowning, etc. A concurrent, mixed methods approach was employed. The Short Zarit Burden Interview (12 item) was completed at baseline and follow‐up. During week 6, in small groups ranging from 2 – 6 persons, family caregivers (n = 20) rewrote the lyrics of Stand by Me, using a fill‐in‐the‐blank template.MethodA content analysis of rewritten lyrics revealed a focus on themes. A paired samples t‐test was performed to determine changes in burden. To merge the lyrics and burden scores, a joint display analysis was performed. A box plot of mild to high burden was created to demonstrate how the post‐test scores were distributed across levels of burden accompanied by a descriptive display of the most dominant lyrics that reflected each level.ResultFollowing the music‐based intervention, a paired samples t‐test found that caregiver burden reduced significantly from baseline (from M = 20.73 ± 6.72 to M = 16.1 ± 4.89; p = .000) indicating that caregiver participation in the 6‐week workshop contributed to perceived reduced burden. Post‐tests and box plot showed most caregivers (80%) scored with mild to moderate burden following the study. The results from content analysis of the lyrics described caregivers’ desire to persevere without fear, issues of falling or failing (a replica of the progression of ADRD) but indicate a desire to stay with the person for whom they are caring.ConclusionBurden decreased following participation in the psychoeducational, music‐based intervention. Nevertheless, caregivers cope with a range of emotions related to caring for a person with ADRD, revealing the facilitation of music‐based interventions at home is a useful tool for caregivers but also a need for continuous support. The study is ongoing.

Perceived Usefulness and Perceived Ease of Decision to Use Non‐Face‐To‐Face Service Among Family Caregiver of People with Dementia

AbstractIntroductionThe prevalence of dementia is increasing worldwide. It will further increase by more than 50 million by 2050. Over 50% of persons with dementia are receiving care by family caregivers such as spouse or children in Korea even after introducing the long‐term care insurance system in Korea. The outbreak of COVID‐19 resulted in shifting to non‐face‐to‐face services to persons with dementia and family caregivers especially in provision of education and support. Non‐face‐to‐face services allows older persons with dementia and caregivers to participate beyond limitation of time and place during COVID‐19 pandemic.PurposeThis study tested perceived usefulness and perceived ease of non‐face‐to face service using The Technology Acceptance Model (TAM). The TAM can explain variables such as perceived usefulness and perceived ease of technology use. Perceptions of using non‐face‐to‐face services influences the intention of use of the service. Thus, this study aims to investigate the awareness and demands for non‐face‐to‐face services among family caregivers of persons with dementia.MethodA cross‐sectional study was conducted from 2021 to 2022 at 25 dementia centers, South Korea. Family caregivers who were 18 years/ older who had no difficulty in reading, understanding and writing had participated. An online and offline survey was used to collect data on preferred method of information access, use of smart devices, non‐face to face services and support needed for family caregivers and persons with dementia, perceive usefulness, perceived ease, and intention of non‐face‐to‐face service use.Results and DiscussionA total of 284 caregivers responded. Seventy percent of respondents preferred online group education and self‐help groups as the best methods of getting information about dementia. Among respondents, 75% of them had smartphones. Most of them need support such as training on how to use non‐face‐to‐face services (41.2%), 24‐hour available information center (44.4%) and discount on internet usage fee (29.9%) to facilitate their use of non‐face to face service. Perceived usefulness (p &lt;.01) and perceived ease of use (p &lt;.01) influences the intention of use of non‐face‐to‐face services among family caregivers.

Factors related to sleep in family caregivers of people with dementia: A systematic review

Background: Family caregivers (FCGs) face many problems when taking care of people with dementia. Purpose: This study wanted to explore the factors related to FCGs’ sleep in people with dementia. Methods: The study used a systematic review approach based on PRISMA. The study focused on FCGs for people with dementia in the home setting. A narrative synthesis was employed. Results: The result showed that the sleep problem and severity of a patient with dementia have an essential role in their state. Those indirectly impact the FCGs’ condition. The majority of the study’s sleep problems were related to physical fatigue that influenced the FCGs’ distress. Coping mechanisms have an essential role in the caregiver situation. A maladaptive coping mechanism would increase the stress of the caregiver and lead to a sleep problem. Conclusion: The consequences of those are burden and depression. Therefore, FCGs should be supported by families, friends, and healthcare workers. Community online groups of the FCGs might be helpful to support each other.

Physical activity and its relationship to burden and health concerns in family caregivers of people with dementia.

Caring for people with dementia (PwD) usually triggers stress and leads to mental and somatic health complaints (SHCs). Physical activity (PA) can provide burden relief in PwD caregivers, but it is not clear whether PA habits would contribute to reducing SHCs. This study aims to analyze the effect of PA on the relationship between burden and SHCs in a sample of family caregivers of PwD. One hundred and fifty-seven caregivers of PwD reported their PA habits, and completed the Giessen's Subjective Health Complaints Questionnaire (GBB-8) and the Zarit Burden Interview (ZBI). The relationship between PA habits, burden of care (ZBI), and SHCs (B-GBB-8 scale) was examined. Subsequently, the moderating effect of PA habits on the relationship between burden and SHCs was tested. PA habit was inversely associated with ZBI(rbp = -0.242) and GBB-8 scores (rbp (Gastrointestinal) = -0.174; rbp (Musculoskeletal) = -0.195; rbp (Exhaustion) = -0.247; rbp (Cardiovascular) = -0.250; and rbp (Overall) = -0.257, respectively), whereas moderate positive correlations were found between ZBI and GBB-8 scores (r (Gastrointestinal) = 0.483; r (Musculoskeletal) = 0.536; r (Exhaustion) = 0.542; r (Cardiovascular) = 0.438; and r (Overall) = 0.598, respectively). The interaction effect of PA habit and burden was significant for the overall SHCs (b = -0.11; P < 0.05) and cardiovascular complaints (b = -0.06; P < 0.05). However, the association between burden and SHCs was significant (P < 0.001) only for sedentary caregivers. These findings indicate that maintaining an active lifestyle through regular PA could potentially help alleviate the adverse effects of caregiver burden on somatic health among caregivers of PwD. Encouraging and endorsing PA interventions for informal caregivers might yield substantial advantages for their health and general well-being.

‘Turbulence even in a bubble’: a reflexive thematic analysis with family caregivers of people with dementia in the United Kingdom during and beyond the COVID-19 pandemic

Objective This study aimed to understand how family caregivers of people with dementia managed changes caused by COVID-19 restrictions and how they adjusted to the lifting of restrictions. A particular focus of the study was on understanding the impact of social isolation, a reduction of social interactions, and reduced access to healthcare services. Methods and measures Fourteen voluntary caregivers (nine women) were interviewed using a semi-structured interview schedule. Results Five themes were identified based on reflexive thematic analysis: (i) Outlets to cope with lockdown; (ii) ‘Not all doom and gloom’: A silver lining amid COVID-19; (iii) Optimism helps provide resilience; (iv) The challenges and joys of reopening; and (v) Caregiving toward a new normality. Conclusion The research highlighted difficulties reported by family caregivers and people with dementia during COVID-19, while also showing how such carers coped. Interviews also identified ways that family caregivers often used optimism to help navigate through lockdown and to tackle the reopening stage. Family caregivers in this study reported coping well overall, but welcomed the lifting of restrictions.

The Effect of Spiritual Orientations and Religious Attitudes on Coping with the Difficulties Encountered by Family Caregivers of People with Parkinson's Disease in Türkiye.

This study aimed to determine the effect of spiritual orientations and religious attitudes on coping with the difficulties of family caregivers of people with Parkinson's disease. This descriptive and cross-sectional study was conducted with 113 family caregivers of people with Parkinson's disease who came to be examined in the Neurology outpatient clinic of a Training and Research Hospital in Türkiye between July and September 2023. Data were obtained using a Patient and Family Caregivers Information Form, the Spiritual Orientation Scale (SOS), and the Ok-Religious Attitude Scale (Islam) (ORASI). The mean age of the family caregivers was 55.6 ± 14.2, the SOS total mean score was 89.1 ± 16.2, and the ORASI total score mean was 34.4 ± 4.0. It was determined that 61.1% of the caregivers experienced changes psychologically, 57.5% in their social life, 58.4% in their home life, and 57.5% in their family relationships. A statistically significant relationship was detected between the ORASI of family caregivers who experienced financial and physical distress and the SOS of those who experienced physical and psychological distress (p < 0.05). It was determined that family caregivers of people with Parkinson's disease were affected in many areas physically, socially, and psychologically and that their spiritual orientation and religious attitudes were effective in coping with the problems experienced. Training and support programs are recommended for nurses to develop positive religious attitudes, increase their spiritual orientation and reduce the care burden, taking into account the beliefs and values of family caregivers.

Defining the content of a website on advance care planning in dementia: a focus group study with family and health professionals

BackgroundAdvance care planning (ACP) is a process that enables individuals to define goals and preferences for their future care. It is particularly relevant for people with dementia and their family. Interactive tools, such as websites, that encourage reflection, communication and/or documentation, may support this group in the ACP process. However, considering the specific needs of people with dementia, it is important to develop adapted tools for this population. This study was conducted to define the content of an interactive website for people with dementia and their family caregivers to support them in ACP and to assess the barriers and facilitators for potential users in finding and using such a website from the perspective of family caregivers and healthcare professionals.MethodsOnline focus groups with family caregivers (serving both as potential users and proxies for people with dementia) and healthcare professionals caring for people with dementia, using a semi-structured topic guide. To analyse the data, we used thematic framework analysis with a combination of deductive and inductive approaches to coding.ResultsWe conducted 4 focus groups with family caregivers of people with dementia (n = 18) and 3 with healthcare professionals (n = 17). Regarding the content of the website, participants highlighted that information on ACP (what and why) and guidance on how to start talking about ACP throughout the dementia trajectory should be included on the website. To increase the usability of the website, most participants considered a text-to-speech and a print option as important functionalities. A lack of computer literacy was found to be the most significant barrier to finding and using the website.ConclusionA website for people with dementia and their family caregivers to support them in ACP should focus on comprehensive content on ACP, peer testimonials, and interactive communication tools. Moreover, there should be certain flexibility in navigating through the website so people with dementia and their family caregivers can use it at their own pace. As the next step, we will include people with dementia in developing the website.

Sequential multiple assignment randomised controlled trial protocol for developing an adaptive intervention to improve depressive symptoms among family caregivers of people with dementia

ObjectivesFamily caregivers of people with dementia (FC-of-PWD) suffer from a high level of stress and depressive symptoms, which usually require different interventions at different stages. Although some standalone interventions such...

Cross-National Analysis of the Associations Between Familism and Self-Efficacy in Family Caregivers of People With Dementia: Effects on Burden and Depression.

Objectives: To examine the cross-national associations between familism and self-efficacy dimensions, and levels of burden and depression. Methods: Sociodemographic, familism, self-efficacy, depressive symptoms, and burden variables were measured in 349 dementia family caregivers from the US and Spain. Results: US sample: greater support from family was positively related to self-efficacy for obtaining respite and self-efficacy for controlling upsetting thoughts and behaviors. Both self-efficacy constructs were negatively related to depression. Similar findings were obtained for burden. Spanish sample: higher scores on family as referents were associated with lower scores on self-efficacy for obtaining respite; lower scores on self-efficacy for obtaining respite were associated with higher depressive symptomatology. Discussion: Study findings suggest that a significant interplay exists between the various facets of familism and self-efficacy, leading to differential caregiving outcomes. Unique cultural contexts and values derived from each country may exert distinct influences on how the caregiving role is perceived and appraised.

Caregiving Self-Efficacy in Family Caregivers of People with Dementia: The Role of Knowledge of Dementia and Perceived Social Support

ABSTRACT Purpose To examine the role of perceived social support and knowledge of dementia in family caregivers of people with dementia (PwD) regarding caregiving self-efficacy. Design Descriptive, cross-sectional, and predictive design was used. Methods The study was conducted with caregivers of PwD (n:102) between March and May 2022. Data was collected using the following forms: a socio-demographic characteristics form, the revised scale for caregiving self-efficacy (RSCSE), the dementia knowledge assessment scale (DKAS) and the revised form of the multidimensional scale of perceived social support (RFMSPSS). Data was assessed through descriptive statistics and multivariate regression analysis. Findings The participants’ RSCSE, DKAS and RFMSPSS mean scores were 1125.89 ± 417.18 (range:0–1800), 15.70 ± 6.06 (range:0–34), and 52.72 ± 20.07 (range:12–74), respectively. Analysis indicated that DKAS and RFMSPSS predicted positive caregiving self-efficacy scores but it was not statistically significant for DKAS (R2:0.209, F:13.077, p < 0.001). These variables accounted for 21% of total variance of caregiving self-efficacy. RFMSPSS predicted positively and statistically significantly (β:0.461, p < 0.001) the total score of the self-efficacy scale. Conclusions The perceived social support of caregivers of PwD is an important predictor of the self-efficacy level of caregivers. Clinical Evidence In order to enhance improving the quality of the caregiving process, caregivers should be strengthened, and caregiving self-efficacy should be comprehensively evaluated to enable assistance to the caregiver. The social support of caregivers is an important predictor of caregiving self-efficacy. Therefore, social support should be taken into consideration when engaging in appropriate initiatives.