Caregivers Of People With Dementia Research Articles

Family function, psychological distress and burden in informal caregivers of people with dementia

Abstract Background Dementia presents a public health priority due to its high global prevalence, mortality, economic cost, and caregiver burden (CB). Dementia care can be stressful and may negatively influence the health of informal caregivers. This cross-sectional study aimed to identify psychological and social factors associated with subjective CB in informal home care providers of people with dementia (PwD), controlling for sociodemographic, clinical, and care-related variables. Methods We included 115 informal caregivers of PwD from community settings (mean age: 54.0±12.4 years; 81.7% women). Participants fulfilled the Zarit Burden Interview (ZBI-12), the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), the Family APGAR, and the short IQCODE used to assess dementia severity. Multiple linear analyses were used to analyse the data. Results The mean caregiving duration was 4.8±4.8 years, and 55.7% of informal caregivers extend care for >40 hours/week. We found that a total of 52.5 % of informal caregivers experienced a high CB (ZBI-12 cut-off score: 17). Univariate analyses showed an association between depression (β = 0.36; p < 0.001), anxiety (β = 0.52; p < 0.001), family dysfunction (β = 0.36; p < 0.001), and CB. Regression analyses showed that CB was the most strongly associated with anxiety (β = 0.51; p < 0.001). This association weakened (0.47; p < 0.01) when family function was added to the final model (β=-0.22; p < 0.05). The final model explained 23.5% of the variance in CB. No associations between the caregiver's age, sex, caregiving duration, the extent of care per day, use of community care, dementia severity, and depression were identified. Conclusions Long-term care for people living with dementia can be very demanding. Thus, the implementation of tailored interventions to enhance family function and diminish psychological distress can mitigate level of caregiver burden. [Grant support: APVV-22-0587]. Key messages • Dementia caregiving is a global public health priority. • The caregiver’s burden and distress can be alleviated by the interventions focusing on family dysfunction.

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.

CREATION OF A FAMILY CAREGIVER NEGOTIATION TRAINING PROGRAM USING ARTIFICIAL INTELLIGENCE

Abstract Family caregivers of people with dementia (PWD) experience conflicts as they navigate the healthcare system but do not have adequate training to resolve these disputes. We sought to develop and pilot test an artificial-intelligence negotiation training program, NegotiAge, for family caregivers. With NIH funding [R01AG068421], we convened a team of negotiation experts, geriatrician, social worker, and community-based family caregivers (Illinois/Florida/New York/California). Content matter experts created informational videos to teach negotiation skills. Family caregivers generated dialogue surrounding caregiver conflicts. Computer science experts input generated dialogue into the Interactive Arbitration Guide Online (IAGO) platform to develop avatar-based agents (e.g. sibling, older adult, physician) for caregivers to practice negotiating. Family caregivers review didactic material then access scenarios to negotiate (e.g. physician recommendations, sibling disagrees with care, PWD refusing support). Caregivers negotiate in real-time with avatars designed to act like humans, including emotional and irrational behaviors. Caregivers can use negotiation tactics until either mutual agreement occurs or time expires. Immediate feedback is generated from the responses chosen and tactics to assist with the negotiation skills training. Pilot testing was conducted with family caregivers of PWD (n=12) and showed that the negotiation and conflict resolution training program was feasible and usable for family caregivers. Subjects found the program to present real-world applicability. NegotiAge is an Artificial Intelligence-based Caregiver Negotiation Program, that is usable and feasible for family caregivers to become familiar with navigating conflicts seen in caring for PWD.

Blended web-based Acceptance and Commitment Therapy for Informal Caregivers of people with dementia (ACT-IC study): Result of social health aspects

Objective:Numerous e-health programs have shown the potential to enhance psychological and social health outcomes in informal caregivers of People with Dementia (PwD). However, there is still a need for evidence-based interventions tailored to the specific needs of this population, such as maintaining self-management and participating in meaningful activities. This mixed-methods study aims to evaluate the feasibility, acceptability, and preliminary effectiveness of a blended intervention based on acceptance and commitment therapy for informal caregivers of PwD, leading to a better understanding of intervention refinements for future controlled trials.Method:A single-arm clinical trial design is conducted. A total of 20 informal caregivers of PwD are recruited through memory clinics and social media platforms in the Netherlands. The ACT-IC intervention is delivered over a 9-week period and consists of a collaborative goal-setting session, nine online modules, and nine telephone-based motivational coaching sessions. Feasibility and acceptability are assessed using the attrition rate, adherence to, and engagement with the intervention, the proportion of missing data, and semi-structured interviews. Clinical outcome measures assess depression, anxiety, stress, sense of competence, burden, and self-efficacy at baseline and post-intervention.Results:Data collection will be completed by May 2023, and analyses are ongoing. Of the 20 caregivers, 19 completed the baseline assessment, and 3 dropped out. Results of an ANOVA investigating the effect of ACT-IC on the outcome measures at post-intervention will be reported, as well as the results of post-hoc analyses that explored the effect on outcomes of goal attainment and meaningful activities, observed use of the website, and reported adherence to the recommended frequency of website use.Conclusion:The result will contribute to the need for further research on supportive e-health interventions for informal caregivers of PwD. The ACT-IC study is the first trial to apply an evidence-based blended approach to address and evaluate the specific shared needs of caregivers. The mixed-method approach may offer a better understanding of reasons for dropouts, as well as barriers and facilitators that informal caregivers experience over the course of the intervention. Furthermore, social interaction (telephone-based motivational coaching) might improve the feasibility and acceptability of the online ACT intervention.

Factors influencing choice and ability to age in place: A qualitative study with patients, caregivers, and clinicians

AbstractBackground“Aging in place” (AIP), the ability to remain in one’s home with age, has broad appeal to policy makers and professionals providing services to adults with serious illness. AIP is viewed as both an intervention for people with dementia (PWD) and as a desirable outcome. However, it’s not clear that AIP is always associated with sustained quality of life, and in some circumstances, may hinder it. As clinical and policy efforts increase to promote AIP for PWD, it is imperative to understand how AIP aligns with patient and family values and what factors influence choice and ability to remain in one’s home.MethodIn this qualitative study, we explored stakeholders’ perspectives on what makes a “good day” for a PWD and their family caregivers and decision making around AIP. We conducted semi‐structured interviews among PWD or cognitive impairment, family caregivers of PWD or cognitive impairment, and clinicians who care for PWD. Participants were purposively sampled to enroll individuals with a range of dementia severity, professional expertise, and demographic characteristics. All interviews were audio‐recorded and transcribed. De‐identified transcripts were reviewed by the research team independently and during weekly consensus meetings to identify relevant themes. Sample size was determined by reaching thematic saturation within each stakeholder sub‐group.ResultWe conducted 70 interviews among 13 patients, 33 caregivers, and 24 clinicians (Table 1). Caregiver burden, caregiver guilt, patient independence, patient safety, perceptions of care facilities, and financial consideration were all themes that influence whether a person can and will AIP (Table 2). Among patient‐caregiver dyads who wished to prioritize AIP, a change in the patient’s living situation was only pursued if and when a “breaking point” was reached by the caregiver. Themes were organized in a conceptual model as patient, caregiver, or systems factors (Figure).ConclusionNumerous factors influence the ability and choice of PWD and their family caregivers to AIP and likely impact the quality of life of patient and family caregivers as dementia progresses. Any program seeking to enhance AIP must take these factors into account. Furthermore, measuring success of AIP will need outcome measures that better capture these dimensions.

Effectiveness of a digitally supported care management program for family and other informal dementia caregivers: baseline data and first results from the GAIN randomized controlled trial

AbstractBackgroundAlmost two‐thirds of people with dementia (PwD) living at home receive care from informal caregivers. The caregiver’s work load can be comparable or above a full‐time employment. Evidence shows that family caregivers have a higher risk for psychiatric and non‐psychiatric diseases compared to non‐caregivers. A dyadic approach on disease management can help to reduce the burden of care and increase the quality of life (QoL) of caregivers and PwD.MethodsThe cluster randomized controlled trial “Gesund Angehörige Pflegen” (GAIN; ClinicalTrials.gov Identifier NCT04037501) conducted in general practitioner (GP) practices and memory clinics in Northern Germany aimed to evaluate the effectiveness of a 6‐months digitally supported care management program delivered by specifically qualified study nurses to reduce unmet needs of informal caregivers of PwD. Primary outcomes were the number of self‐reported unmet needs, regarding the caregiver and the PwD, assessed with a modified version of the Camberwell Assessment of Need for the Elderly (CANE) and the health‐related quality of life with the EQ‐5D‐5L questionnaire. A generalized linear mixed effects model was used with intercept as random effect.ResultsThe recruitment for the GAIN trial (October 2020 to January 2022) yielded n = 192 participants (mean age: 65 years, women 75%). The number of identified unmet needs was on average 8.66 (range 1 – 30). Analyses of the primary endpoints revealed a statistically significantly higher reduction of unmet needs of caregivers in the intervention group compared to the control group. Evaluation of the EQ‐5D‐5L showed no significant difference between groups.ConclusionThe GAIN care management program was able to lower the number of unmet needs for informal dementia caregivers. Health related quality of life showed a major ceiling effect (high scoring at baseline), which might explain the lack of an effect. The study shows the benefit of a computerized self‐assessment system in primary care and should be further developed as an entry point to the existing health care system.

Implementation and dissemination of home and community‐based interventions for informal caregivers of people living with dementia: A systematic scoping review

AbstractBackgroundInformal caregivers of people with dementia (PwD) living at home are often the primary source of care, and, in their role, they often experience loss of quality of life. Implementation science knowledge is needed to optimize the real‐world outcomes of evidence‐based interventions (EBIs) for informal caregivers. This scoping review aims to systematically synthesize the literature that reports implementation strategies employed to deliver home‐ and community‐based EBIs for informal caregivers of PwD, implementation outcomes, and the barriers and facilitators to implementation of these EBIs.MethodsEmbase, MEDLINE, Web of Science and Cochrane Library were searched from inception to March 2021; included studies focused on “implementation science”, “home‐ and community‐based interventions” and “informal caregivers of people with dementia”. Titles and abstracts were screened using ASReview (an innovative AI‐based tool for evidence reviews) and data extraction was guided by the ERIC taxonomy, the Implementation Outcome Framework, and the Consolidated Framework for Implementation Science Research; each framework was used to examine a unique element of implementation.Results67 studies were included in the review. Multi‐component (26.9%) and eHealth (22.3%) interventions were most commonly reported, and 31.3% of included studies were guided by an implementation science framework. Training and education‐related strategies and provision of interactive assistance were the implementation strategy clusters of the ERIC taxonomy where most implementation strategies were reported across the reviewed studies. Acceptability (82.1%), penetration (77.6%) and appropriateness (73.1%) were the most frequently reported implementation outcomes. Design quality and packaging (intervention component suitability) and cosmopolitanism (partnerships) constructs, and patient’s needs and resources and available resources (infrastructure) constructs as per the CFIR framework, reflected the most frequently reported barriers and facilitators to implementation.ConclusionCurrent studies focused largely on intervention outcomes rather than implementation outcomes and lacked detailed insights on inner and outer setting determinants of implementation success or failure. Future dementia studies must prioritize implementation science for more contextually relevant findings and structurally examine the mechanisms through which implementation partners can strategically leverage existing resources and regional networks to streamline local implementation. Mapping local evidence ecosystems will facilitate structured implementation planning and support implementation‐focused theory‐building.

Resilience of family caregivers of PwD in Korea: A scoping review

AbstractBackgroundFamily caregivers play a important role in living the journey of life of person with dementia through their involvement in caregiving as in informal carers in South Korea. The aim of this scoping review was to examine research theory, measurement instruments, correlates, interventions, and outcomes of resilience for family caregivers of persons with people with dementia (PwD).MethodThis scoping review was conducted according to Arksey and O'Malley’s scoping review framework and Joanna Briggs Institute’s manual for scoping reviews. Multiple databases, including Ovid‐MEDLINE, Ovid‐EMBASE, PsycINFO, CINAHL and Korean databases were searched using controlled vocabulary and text words. Two review authors independently screened and selected relevant studies.ResultMultiple database search identified 18 studies, published between January 2000 and February 2022. Most studies (72.2%) used theoretical framework, such as modified McCubbin and McCubbin’s Family stress, adjustment, and adaptation model and Walsh’s Family resilience model. Eight measurement instruments have been applied to measure the resilience for family caregivers of PwD. However, all the used instruments were not conducted the cross‐cultural adaptation and construct validation in Korean family caregivers of PwD. Moreover, some studies (4 of 18 studies) were used resilience tool focused the individual level rather than family and community levels.ConclusionThis review findings indicate that more rigorous research is needed to measure family resilience using cross‐cultural adapted and validated tools and to test the guided theory for family caregiver of PwD, considering Korean cultural and social context. Moreover, family resilience enhancement programs, considering identified correlates in this review are needed to develop and implement to help family caregiver achieve coping and adaptation with persistent distress in caregiving for their PwD.

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.

3 Relation of Stress and Cortisol to Primacy and Recency Performance Patterns in Older Adult Caregivers of People with Dementia

Objective:The serial position effect is the tendency to recall items at the beginning (primacy) and end (recency) of a word list best and middle items the worst, demonstrated by a 'U-shaped’ profile. Individuals with memory impairment often demonstrate a 'J-shaped’ profile, with a diminished primacy effect. An attenuated primacy effect could be one of the earliest indicators of cognitive decline in older adults. Chronic elevations in cortisol are related to hippocampal atrophy and decreased learning and recall. Given the rehearsal and encoding required to recall words at the beginning of a list, we hypothesized that reduced primacy would be related to higher cortisol levels, measured via hair cortisol concentration, in older adults, particularly caregivers of people with dementia (PWD), who are under increased stress.Participants and Methods:Data were taken from a deidentified dataset of 60 community-dwelling older adults (&gt; 50) with no evidence of dementia who participated in a larger study on memory and caregiving stress; 26 identified themselves as caregivers of PWD. The sample was 83% women and 98% White, with a mean age of 67.58 (SD=8.85) and 80% holding at least a college degree. Stress was measured with the Perceived Stress Scale. The List Learning and List Recall subtests from the Repeatable Battery for the Assessment of Neuropsychological Status were used to assess the serial position effect. Primacy and recency were determined by the first three and last three words on the list, respectively, and were measured for trials 1-4. Relative strength of primacy versus recency at delayed recall was also calculated such that positive scores indicate better primacy than recency and negative scores indicate worse primacy than recency (J-shaped profile). Hair samples were collected, and the first one cm of hair was used to assay hair cortisol concentration, reflecting the past month of cortisol.Results:Caregivers were younger than non-caregivers (p&lt;.001), but groups did not differ in gender (p=.412). Age was controlled for in all subsequent analyses. Caregivers reported more stress (p&lt;.001), but groups were not different in hair cortisol (p=.093). On memory tasks, caregivers showed lower list learning raw scores (p=.002) and lower list recall raw score (p=.046); groups were not different in primacy learning (p=.114), but caregivers showed worse recency over learning trials (p&lt;.001). Caregivers were not more likely to show the J-shaped serial position profile at recall (p=.285). Collapsed across groups, perceived stress was not related to cortisol (p=.124) but was related to recency (p=.001) and list learning raw (p=.004), but not list recall raw (p=.485) or primacy (p=.109). Cortisol was not related to primacy (p=.277) or recency (p=.538).Conclusions:Contrary to predictions, caregivers were not worse on primacy but were worse on recency. Caregivers also reported more stress; collapsed across groups, stress was associated with recency performance. This may suggest that stress is related more to poor attention and short-term memory (recency) than encoding and recall related memory problems (primacy).

The effect of educational intervention based on the Progressively Lowered Stress Threshold extended model on the process of caregiving for people with dementia.

This study examined the impacts of an educational intervention based on the Progressively Lowered Stress Threshold (PLST) extended model on caregiving for people with dementia (PWD). This study was conducted in Isfahan, Iran, from May 2016 to June 2018, with 38 caregivers of PWD as participants assigned to an intervention group. Data were collected using a multi-sectional, researcher-developed questionnaire that recorded the demographic characteristics, and measured the dementia-related knowledge and caregiving practices of the participants. The questionnaire and an educational program were designed in three parts according to the educational needs of caregivers to enhance their practice, skills, and ability to handle challenging behaviours in PWD. The questionnaire's face validity was confirmed by expert review, and its reliability was assessed with Cronbach's alpha coefficient (knowledge section, 0.838; practice section, 0.802). The sampling method used was convenience sampling, and none of the caregivers refused to receive the educational content. Therefore, the evaluation of the program lacks a randomized controlled group. To tailor the intervention program to the participants' needs, the educational content was based on the PLST extended model. The mean scores for knowledge and practice increased following the intervention (P < 0.05). An educational intervention, using the PLST extended care model, thus produced positive impacts in improving the knowledge and practice of caregivers of PWD. Educating caregivers with the PLST extended model, with a specific focus on the cultural and religious backgrounds of societies, is recommended.

Blended intervention based on acceptance and commitment therapy for informal caregivers of people with dementia (ACT-IC): protocol of a mixed-methods feasibility study

IntroductionNumerous caregiver support programmes have shown promise in promoting the mental health of informal caregivers of people with dementia (PwD). However, there is still a lack of evidence-based interventions tailored...

Learning needs of family caregivers in the Japanese working generation who care for community-dwelling people with dementia: A qualitative research study

Objective: This study investigated and described the learning needs experienced by family caregivers in the Japanese working generation who care for community-dwelling people with dementia (PWD). Methods: This qualitative descriptive study conducted semi-structured in-depth interviews to explore the learning needs experienced by the family caregivers of PWD. 18 family caregivers were recruited via purposive sampling (age range 30-60 years) from two medical facilities, two self-help groups, and 10 prefectural-sponsored counseling facilities in Japan. The collected data were subjected to a qualitative content analysis. Then, the derived learning needs were independently reviewed by two nursing researchers with expertise in qualitative research and family nursing. The Standards for Reporting Qualitative Research (SRQR) recommendations were followed. Results: Four main categories and 20 subcategories were derived to clarify the learning needs of family caregivers in the Japanese working generation who care for community-dwelling PWD. The four main categories included (a) increasing long-term care literacy, (b) dispelling the negative images associated with dementia and long-term care, (c) working on long-term care as a unified team that handles issues concerning caregiving for dementia, and (d) promoting an active role as a member of society. Conclusions: This study clarified specific learning needs that family caregivers in the Japanese working generation experience when caring for community-dwelling PWD, thus, contributing to a more thorough understanding of the associated challenges. In addition, the structured list of learning needs should aid health professionals when conducting assessments and planning interventions, especially when framing these issues from the cultural perspective.

Impact of Hospitalization of People With Dementia or Cognitive Impairment on Family Caregivers.

People with dementia (PWD) have a higher risk of hospitalization than people without dementia. Hospitalizations are stressful events for PWD and their caregivers, representing a considerable change to their routines. The current descriptive longitudinal study aimed to identify the positive and negative reactions, experiences related to health and social integrated care, resource use, and work status of family caregivers of PWD or cognitive impairment admitted to the hospital with a proximal femur fracture undergoing surgery. Findings indicated that family caregivers (N = 174) are fully committed to providing assistance in activities of daily living and supervision, showing positive attitudes on self-esteem and negative attitudes toward lack of family support and impact on finances, schedule, and health. Overall caregiver experiences with integrated health and social care improved after hospitalization but decreased after discharge. One month after hospitalization, family caregivers maintained the same work hours but used fewer health care resources. Hospitalization represents a good opportunity to approach family caregivers and determine their needs to provide them with interventions to minimize their burden and improve their well-being. [Research in Gerontological Nursing, 16(6), 283-290.].

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.

Experiences of Family Caregivers of People with Dementia during the COVID-19 Pandemic: A Qualitative Study

Background: Given the rapid spread of the COVID-19 virus and an uncertain length of restrictions worldwide, it is extremely important to determine the experiences and needs of the caregivers of people with dementia (PwD). &#x0D; Objectives: This study aimed to understand the experiences of family caregivers of PwD during the COVID-19 pandemic. &#x0D; Methods: This study was a descriptive qualitative study using in-depth interviews. The study sample consisted of 29 caregivers of PwD from January to February 2021 in western of Turkey. The content analysis technique was used to analyze the data. &#x0D; Results: A range of themes were derived from the data. The experiences of caregivers of PwD were grouped into two main salient themes: difficulties and funding solutions. The experiences of caregivers during the pandemic process varied. Also, most caregivers had multiple and serious problems.&#x0D; Conclusion: This study highlights the challenges and needs for family caregivers of PwD during the COVID-19 pandemic. It is important to better tackle the rapid challenges of families living with dementia by using feasible and effective care strategies.

Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial.

Family caregivers play an essential role in supporting the health and well-being of older adults with dementia, a population projected to increase rapidly over the coming decades. Enrolling caregivers of people with dementia (PWD) in research studies is vital to generating the evidence necessary to support broader implementation of efficacious intervention programs in real-world care delivery, but a range of challenges impede recruitment and enrollment of sufficiently large and representative sample sizes. In this article, we characterize the challenges and lessons learned from recruiting caregivers of PWD to participate in a pilot randomized control trial. We utilize Bronfenbrenner's ecological model to categorize the challenges into three levels: individual (i.e., understanding caregivers' time constraints and motivations), community (i.e., reaching underrepresented populations and accessing caregiver support groups) and institutional (i.e., obtaining informed consent and navigating research registries). We found that establishing rapport and maintaining flexibility with participants was crucial for motivating individuals to enroll in our study. Building trust with local communities by collaborating with support group leaders, appointing a co-investigator who is already embedded within a given community, and establishing equitable partnerships with organizations increased recruitment rates. At the institutional level, engaging experts in regulatory affairs and geriatrics may help overcome barriers in obtaining approval from institutional review boards. We also recommend using research registries of individuals who offer their contact information to researchers. The lessons learned from our research-including the challenges and potential solutions to overcome them-may promote more effective and efficient recruitment in future research.

Relationship of Psychological Flexibility and Mindfulness to Caregiver Burden, and Depressive and Anxiety Symptoms in Caregivers of People with Dementia

Caregivers of People with dementia (PwD) commonly experience burdens and other mental health issues, e.g., depression and anxiety. At present, there are limited studies that examine the relationships between caregiver psychological factors and caregiver burden, and depressive and anxiety symptoms. Therefore, this study's objectives were to examine the relationships between psychological flexibility and mindfulness in caregivers of PwD, and to determine the predictors of these three outcomes. This was a cross-sectional study conducted in the geriatric psychiatry clinic of Kuala Lumpur Hospital, Malaysia, and the sample (n = 82) was recruited via a universal sampling method over three months. The participants completed a questionnaire that consisted of the sociodemographics of the PwD and caregivers, illness characteristics of the PwD, Acceptance and Action Questionnaire-II (AAQ-II), Mindful Attention Awareness Scale (MAAS), Zarit Burden Interview Scale (ZBI), Patient Health Questionnaire-9 (PHQ-9) and Generalized Anxiety Disorder-7 (GAD-7). The results show that despite significant relationships between psychological flexibility and mindfulness and lower levels of caregiver burden, and depressive and anxiety symptoms (p < 0.01), only psychological inflexibility (p < 0.01) remained as a significant predictor of the three outcomes. Therefore, in conclusion, intervention programs that target the awareness of the caregiver's psychological inflexibility should be implemented to alleviate these adverse outcomes in dementia caregivers.

Adapting the World Health Organization iSupport Dementia program to the Indonesian socio-cultural context.

Providing care for people with dementia (PwD) without sufficient understanding of the condition might negatively affect the wellbeing of the caregivers, given the lengthy care and progressive nature of the disease. The iSupport for dementia developed by World Health Organization (WHO) is a self-administered training manual for caregivers of PwD, adaptable to local cultures and contexts. This manual needs translation and adaptation to produce a culturally appropriate version for use in Indonesia. This study reports the outcomes and lessons learnt from our translation and adaptation of iSupport content into Bahasa Indonesia. The original iSupport content was translated and adapted using the WHO iSupport Adaptation and Implementation Guidelines. The process included forward translation, expert panel review, backward translation, and harmonization. The adaptation process included Focus Group Discussions (FGD), involving family caregivers, professional care workers, professional psychological health experts, and Alzheimer's Indonesia representatives. The respondents were asked to express their opinions about the WHO iSupport program, which comprises five modules and 23 lessons covering well-established topics on dementia. They were also asked to suggest improvements and their personal experiences compared to the adaptations applied in the iSupport. Two experts, 10 professional care workers, and eight family caregivers participated in the FGD. Overall, all participants had positive views of the iSupport material. The expert panel identified the need to reformulate definitions, recommendations, and local case studies to fine-tune the original contents to local knowledge and practices. Based on the feedback in the qualitative appraisal, several improvements regarding the language and diction, additional relevant and concrete examples, personal names and cultural habits, and customs and traditions were addressed. The translation and adaptation of the iSupport into the Indonesian context have shown some changes needed to make the iSupport content culturally and linguistically appropriate for Indonesian end users. In addition, given the broad spectrum of dementia, various case illustrations have been added to improve the understanding of care in particular situations. Future studies are needed to evaluate the efficacy of the adapted iSupport in improving the quality of life of PwD and their caregivers.

Pragmatic Effectiveness of Face-to-Face Cognitive-Behavioral Therapy for Family Caregivers of People with Dementia

ABSTRACT Objectives The objective was to investigate the pragmatic effectiveness of face-to-face cognitive-behavioral therapy (F2F-CBT) for family caregivers of people with dementia (PwD) implemented in a routine care setting relative to usual care in a quasi-experimental study. Methods Participants indicating that attendance of F2F-CBT was possible were assigned to F2F-CBT (n = 49). F2F-CBT consisted of 12 sessions over 6 months. Effects were evaluated at posttest and 6-month follow-up on a variety of outcomes relative to usual care (CG; n = 134). Results At posttest, F2F-CBT yielded significantly fewer symptoms of depression (d = 0.37), better emotional well-being (d = 0.64), and better coping with the care situation (d = 0.52) than CG. At 6-month follow-up, the effect on emotional well-being was retained (d = 0.44) and social relationships were rated significantly better in F2F-CBT than CG (d = 0.34). Conclusions F2F-CBT proved to be effective in supporting family caregivers of PwD. However, only relatively few caregivers were able to regularly attend face-to-face sessions. Clinical Implications CBT seems particularly suitable for supporting family caregivers of PwD in coping with the complex psychological burden. Delivery via telephone or internet could be a necessary alternative to F2F-CBT for reducing barriers to participation.