Caregivers Of Persons With Dementia Research Articles

Assessing Caregiver Burden, Tasks, and Heart Rate Using Wearable Sensors: A Longitudinal Study of Informal Caregivers of Persons With Dementia and Older Adults.

Purpose In recent years, research on caregivers has highlighted the importance of integrating advanced technologies, such as wearable devices. Furthermore, when investigating the characteristics of persons with dementia (PWD), comparative analyses should be conducted based on the presence or absence of the condition. We aimed to elucidate the relationship between caregivers' subjective burdens, tasks, and heart rate (HR) using wearable sensors to objectively assess the health status of caregivers of PWDand older adults requiring long-term care. Methods The study recruited 21 caregivers of PWDs and older adults requiring long-term care between September 2022 and December 2024 from one hospital, two care plan centers, and visiting nursing stations in Fukuoka Prefecture, Japan. We collected the participants' sociodemographic data using a questionnaire survey for caregivers. We also measured the caregiver's HR, walking steps, and total sleep time using a wearable sensor. Results Data from 17 participants with no missing values were included in this analysis among the 21 caregivers who provided consent to participate in this study. The demographic variables of the caregivers and care recipients revealed that the caregivers were predominantly female (typical spouses). Most PWDs were diagnosed with atopic disease. No significant correlations were found between the short Japanese version of the Zarit Burden Interview (J-ZBI_8) and the following measures: caregiving years, activities of daily living (ADL), the 14-item Short-Memory Questionnaire (SMQ), caregiving time, the Caregiving Gratification Scale (CGS), total caregiving tasks, sleep time, walking steps, or conversation time. Caregiver burden was significantly associated with caregiving experience and continued caregiving. We observed no significant differences in the average HR for pre- and post-caregiving tasks. Significant differences were found in the maximum pre- and post-caregiving HR. While caregiver burden showed a high-scoring trend and positive perception showed a low-scoring trend, none of the variables differed according to the presence or absence of PWDs. Conclusions These results indicate that subjective appraisal of caregiver burden was not significantly associated with HR change during caregiving tasks. No differences were observed in the behaviors of caregivers with or without dementia. It is necessary to measure subjective and objective appraisals using wearable sensors to better understand caregivers' situations.

A modified transactional model of stress and coping on depressive symptoms among informal caregivers of persons with dementia

Informal caregivers are crucial to the care of persons with dementia (PWD), but their role is often reported as challenging. This study aims to examine caregiver stress and depressive symptoms among informal caregivers of PWD using a modified transactional stress and coping model. Path analysis was conducted among a sample of informal caregivers of PWD in Singapore (n = 281) using information on functional dependence and memory and behavioral problems of PWD, and self-reported measurements on caregivers’ knowledge of dementia, perceived positive aspects of caregiving, social support, coping patterns, caregiving self-efficacy, caregiving burden and depressive symptoms. The initial model reflecting our assumptions for the transactional stress and coping model showed a poor fit (model 1 - CFI = 0.858, TLI = 0.665, RMSEA = 0.118). Logical modifications were made until sufficient model fit was achieved (model 2 - CFI = 0.987, TLI = 0.955, RMSEA = 0.043). We then removed the insignificant paths in model 2 and obtained our final model (model 3 - CFI = 0.990, TLI = 0.974, RMSEA = 0.033). The final model supported our hypotheses, with some adjustments. This study advances our understanding of caregiver distress by modifying the transactional stress and coping model, including (1) the key role of caregiver self-efficacy in the primary appraisal process, (2) the dynamic assessment of coping resources across all stages of the model, and (3) the importance of coping patterns. Future studies could explore the generalizability of these findings.

Telephone-Based Acceptance and Commitment Therapy for Caregivers of Persons with Dementia: Results of a Randomized Controlled Trial

ABSTRACT Objectives Family caregivers of persons with dementia (PwD) experience high levels of distress. We used a randomized-controlled trial to investigate the effects of telephone-based acceptance and commitment therapy (tbACT) for family caregivers. Methods Caregivers were randomly allocated to an intervention group (tbACT, n = 41) or an untreated control group (CG, n = 40). The intervention consisted of eight weekly sessions of tbACT. Depression and anxiety (primary outcomes), physical symptoms, pre-death grief, care-related thoughts, acceptance (secondary outcomes), quality of life, coping and well-being (well-being/coping outcomes) were assessed pre- and post-assessment. A 6-month follow-up was conducted. Results Compared to CG participants, tbACT participants had at post-assessment significantly lower depressive symptoms; fewer physical symptoms (rheumatic pain); better physical health; more resource utilization (coping with daily hassles, social support); better coping with the care situation and better emotional well-being. During the six-month follow-up, tbACT participants showed less pre-death grief, fewer physical symptoms, and more utilization of resources related to coping with daily hassles. Conclusions tbACT is a feasible and promising psychotherapeutic intervention for family caregivers of PwD. Because of small sample size our results are preliminary. Clinical Implications Most of the effects of tbACT were not maintained 6 months after the intervention, suggesting that booster sessions may be helpful.

Facilitators and barriers of help-seeking for persons with dementia in Asia-findings from a qualitative study of informal caregivers.

The deterioration in cognition of persons with dementia (PWD) makes their caregivers key players in their help-seeking process. This study aimed to identify the facilitators and barriers of help-seeking for persons with dementia in Asia from the perspective of their informal caregivers. A qualitative methodology was adopted in the current study. Twenty-nine informal caregivers of PWD in Singapore were interviewed between April 2019 and December 2020. All interviews were audio-recorded and transcribed verbatim for the analysis. The transcripts were analyzed using inductive thematic analysis. The results revealed four major themes with 12 sub-themes, including (1) Barriers to diagnosis-seeking (i.e., lack of knowledge and awareness of dementia, emotional denial, resistance from PWD, and delays in the healthcare system); (2) Facilitators of diagnosis-seeking (i.e., synergy between awareness of dementia and an active diagnosis-seeking intention and incidental diagnosis resulting from seeking treatment for comorbid conditions); (3) Barriers to treatment-seeking (i.e., challenges from PWD and disease, challenges faced by caregivers when seeking treatment for PWD, and challenges imposed by the COVID-19 pandemic); (4) Facilitators of treatment-seeking (i.e., caregivers' capabilities of handling PWD, cooperation/compliance from PWD, and an integrated care plan for PWD). The findings highlight the importance of raising public awareness, enabling health professionals to tailor psychosocial interventions better, and improving community support through dementia awareness and education.

WHAT MATTERS TO CHINESE AND KOREAN DEMENTIA CAREGIVERS: INFORMING THE CULTURAL ADAPTATION OF THE NYUCI-ES PROGRAM

Abstract Family caregivers of persons with dementia (PWD) undertake an extensive amount of care and many are challenged by heavy caregiving burden and their own health problems. The New York University Caregiver Intervention (NYUCI) program has demonstrated effectiveness in multiple studies among largely Caucasian samples in improving the wellbeing of caregivers of PWD by decreasing their levels of depression and stress and improving self-reported health. As two large Asian immigrant population in the U.S., Korean and Chinese American caregivers of PWD have unique challenges impacted by their cultural background. However, there are limited studies on what can be done to support them in a culturally sensitive way. The current study aims to inform the cultural adaptation of the program for Chinese and Korean caregivers with multiple chronic conditions by exploring their perspectives to understand their unique challenges, unmet needs, and the best ways to support them in caregiving and engage them in selfcare. We interviewed 14 Chinese and 11 Korean caregivers living in the New York Metropolitan Area. We compared themes mentioned by both groups and found that cultural beliefs profoundly impact their perceptions of dementia and caregiving, their way of utilizing social and family support, and understanding of self-care and counselling services. Caregivers are facing and addressing new challenges during and after the Pandemic, providing insights into how we can use technology and telehealth to assist them in caregiving and coordinating support from others. Our findings provided implications to culturally adapt the NYUCI program to culturally diverse populations.

HIGHER STRESS AMONG ETHNIC MINORITY ADULT-CHILD CAREGIVERS COMPARED TO SPOUSAL CAREGIVERS IN DEMENTIA CARE

Abstract Ethnic minority family caregivers of persons with dementia (PWD) suffer from negative health conditions resulting from continuous care responsibility for PWD. While adult-child caregivers have additional family care and job responsibilities, cultural and linguistic needs in ethnic minority families further compound caregiving challenges. Little research examines ethnic minority caregivers’ health statuses. This study aimed to understand the emotional health status and dementia care experiences of minority caregivers, between spouses and adult-children. The study collected cross-sectional survey data on perceived stress and utilizations of caregiving resources: Alzheimer’s agencies, state-funded in-home supportive service, adult-day service, support groups, and caregiving education. Recruitment focused on diverse communities with special emphasis on minority caregivers who speak Spanish, Vietnamese, or Korean in California. Seventy-six caregivers participated in surveys in their respective language; 42% Korean, 38% Vietnamese, 20% Spanish; 49% spouses/partners vs 51% adult-children/grandchildren; 78% females; 55% PWD with Medicaid; Mean English Proficiency (EP) of 3/5(1.3). Sixty-four percent of adult-child caregivers were employed (full-time or part-time) compared to 5% of spousal caregivers (P<.05). Adult-child caregivers showed higher stress compared to spousal caregivers (P<.05) despite no differences in PWD’s activities of daily living (ADL) scores and instrumental ADL scores. Although EP of adult-child caregivers was higher than spousal caregivers (P<.05), both caregivers underutilized care resources and showed little awareness of Alzheimer’s agencies. Findings demonstrated higher caregiving stress of adult-child caregivers compared to spousal caregivers of PWD among minority groups. Tailored interventions with appropriate language and cultural aspects should consider the caregiver’s relationship to the PWD.

DEVELOPMENT OF AN ONLINE DISASTER PREPAREDNESS PROGRAM FOR CAREGIVERS OF PERSONS WITH DEMENTIA

Abstract Individuals with medical conditions, including persons with dementia (PWD), are vulnerable in disaster situations. Disasters limit caregivers’ ability to continue with care due to stress, reduced resources and limited social support. We previously developed and tested a disaster preparedness program for older adults, Disaster PrepWise, and showed its impact on improving preparedness and personal emergency support networks. Through community engaged approaches, we adopted this program to specifically support family caregivers of PWD. Contents were revised based on the emergency management and dementia caregiving literature, and input from the stakeholder advisory board (SAB) consisting of caregivers, aging service providers, public health, and emergency management agencies. The SAB also provided guidance on implementation strategies from the lens of over-burdened caregivers. The new program includes a five-step process with an emphasis on the needs of caregivers and caregiving tasks, for example, developing emergency caregiving network to be activated during and after a disaster. The program also informs caregivers of tasks involved in the event of an emergency and provides various information such as how to navigate staying at public shelters with PWD, identify services during and after an emergency, and manage stress. Preliminary data shows high levels of acceptance and perceived usefulness of this caregiver-specific program. The program is perceived to fill a gap in current disaster management approaches that have limited ability to support vulnerable populations. Caregivers and service providers also praised this program’s ability to connect caregivers to community programs and resources. Additional pilot data will be presented.

Improvements in Heart Rate Variability among Dementia Family Caregivers Receiving a Home‐Visit Based Intervention: Preliminary Results from a Randomized Controlled Trial

AbstractBackgroundEmotional stress of family caregivers of persons with dementia (PWD) is often a topic of concern, as many experience negative health outcomes resulting from their years‐long caregiving role. A home‐visit based educational intervention focused on improving caregiving skills and managing stress was delivered to ethnically diverse dementia family caregivers in California in their preferred language. Previously, survey data were used to evaluate caregivers’ stress and well‐being. However, there might be limitations in using survey instruments to measure stress among diverse caregivers with limited English proficiency. Data collected via wearable technology (e.g., smartrings) can objectively measure stress in the form of Heart Rate Variability (HRV). We examined the intervention’s effect on stress levels measured by HRV among diverse dementia family caregivers using wearable technology.MethodsThe study design was a randomized controlled trial. Family caregivers of community dwelling PWD identifying as either Korean, Vietnamese, Hispanic/Latino, or Non‐Hispanic White were recruited through community outreach. Participants were randomly assigned with a 2:1 ratio to either the intervention group (IG) receiving language‐specific home‐visit based education or the attention control group (AG) receiving only care resource information. All participants wore smartrings monitoring HRV for 3 months. We used linear mixed models to assess the differences in HRV between the two groups using random intercept and slope for intervention, controlling for the covariates (age, gender, relationship, cohabitation, ethnicity, education).ResultsHRV data was collected from 59 caregivers (69% IG and 31% AG). Demographics included: 20 Korean (33.9%), 17 Vietnamese (28.8%), 10 Hispanic (17%), 12 Non‐Hispanic White (20.3%); 32 spouses (54%), 27 off‐spring (46%); 45 females (76%), ages 34 to 87 years (mean = 65.3, SD = 13.6). The linear mixed models showed a significant improvement in stress (higher HRV indicating better stress management) among IG caregivers compared to the AG caregivers over time (Beta coefficient = .079, P‐value = .032).ConclusionsMeasuring stress using smartrings was feasible and effective to track stress levels among diverse caregivers. Preliminary analyses suggest the home‐visit based intervention may have a positive effect on stress in ethnically diverse family caregivers of PWD compared to those only provided with care resource information.

Cultural adaptation of a mobile caregiver intervention application for Hispanic caregivers of persons with dementia (PWD)

AbstractBackgroundFamily caregivers for persons with dementia (PWD) in the U.S. who identify as part of a racial or ethnic minority group experience higher levels of depression, receive less support from home and community‐based services, and often cannot access services in their primary language. The Alzheimer’s Association has recommended that proven interventions be adapted to address the needs of informal caregivers from different racial and ethnic backgrounds. Although several clinical interventions have been developed with promising results to improve the overall caregiving experience of PWD, the effectiveness of current interventions for Hispanic caregivers of PWD are unclear. Mobile, technology‐based interventions may address specific needs of Hispanic caregivers of PWD such as providing at home access to culturally tailored interventions, but current mobile caregiver interventions do not sufficiently consider equity factors. In the current study, we will culturally adapt an existing, validated, mobile caregiving intervention app for Hispanic caregivers of PWD using an equity focused framework.MethodBrain CareNotes was guided by the NIH Stage Model for Behavioral Intervention Development and is a secure mobile telehealth application for informal caregivers to manage behavioral and psychological symptoms of dementia (BPSD) with the aid of a remote care coach. To culturally adapt this intervention, we will addresses stage 0 – 1 of the NIH Stage Model and apply a previously developed equity framework, PROGRESS‐Plus, which identifies specific cultural factors (i.e. Place of Residence, Race/ethnicity, etc) that should be considered in the development of equity focused interventions. We will qualitatively identify specific PROGRESS‐Plus needs that are insufficiently met among Hispanic caregivers of PWD through semi‐structured interviews. We will incorporate this information in the modification of Brain CareNotes, which will be made using a participatory co‐design methodology. Two groups of n = 5 Hispanic English and Spanish speaking caregivers of PWD will participate in five co‐design sessions to adapt the intervention to meet identified PROGRESS‐plus related needs. The adapted intervention will then be pilot tested.ResultDescription of this ongoing study will be presented.ConclusionThis will result in an extensible framework for modifying and culturally tailoring other previously developed caregiver interventions for ethnic minority groups.

Association of dementia comorbidities with caregivers’ physical, psychological, social, and financial burden

BackgroundInformal caregivers of older adults with dementia may experience substantial burdens during their caregiving process, especially when caring for older adults with other comorbid conditions. This study evaluated whether and how comorbidity burden for persons with dementia (PWD) was associated with caregivers’ physical, psychological, social, and financial burden as well as caregiving gain.MethodsData were from 1,065 community-dwelling older adults living with dementia and their primary caregivers in the National Health and Aging Trends Study and the National Study of Caregiving. PWD’s comorbidity burden was measured by the count of chronic conditions and the pattern of comorbidity identified by the latent class analysis (LCA). We considered four domains of caregiving burden—physical, psychological, social, and financial burden. We used linear regressions to identify the unadjusted and adjusted associations between PWD’s comorbidity burden and caregiving burden and gain.ResultsOf 1,065 PWD, 13.5% had 0–1 and 24.9% had 5 or more number of comorbid chronic conditions, respectively. After multivariable adjustment, an additional chronic condition is associated with an 0.11- and 0.36-point increase in caregivers’ physical and psychological burden, respectively. Caregivers of PWD with 5 or more chronic conditions had a 0.64- and 2.22-point higher score of physical and psychological burden, respectively, than those caring for PWD with 0 or 1 comorbid condition. LCA divided PWD into two classes, a high comorbidity class (69.0%) and a low comorbidity class (31.0%). Caregivers of PWD in the high comorbidity burden class had a 0.46-point higher score of physical caregiving burden than those in the low comorbidity burden class. No significant association was found between care recipients’ comorbidity burden and their caregivers’ social and financial burden or caregiving gain.ConclusionsThe comorbidity burden of PWD was associated with their caregivers’ physical and psychological caregiving burden. Relevant interventions to manage the comorbid conditions of people living with dementia and support their caregivers are crucial to improving their physical health and psychological wellbeing.

Positive aspects of caregiving among informal caregivers of persons with dementia in the Asian context: a qualitative study

BackgroundPositive aspects of caregiving are important coping resources for informal caregivers of persons with dementia (PWD). However, existing studies mostly focused on caregivers from western societies and less attention was paid to the potential cultural differences. This study aims to explore positive aspects of caregiving in the Asian context.MethodsA qualitative methodology with semi-structured interviews was adopted. A total of 29 informal caregivers of PWD in Singapore were interviewed from Apr 2019 to Dec 2020. All the interviews were audio-recorded and transcribed verbatim for the analysis. Inductive thematic analysis was conducted.ResultsThe results revealed a total of three major themes with 11 sub-themes including: 1) positive aspects within self (i.e., better understanding of dementia and caregiving, personal growth, role satisfaction, and improved awareness of self-care); 2) positive aspects between caregiver and PWD (i.e., chance to demonstrate filial piety towards PWD, happiness and positive attitudes of PWD, positive interactions with PWD, and closer relationships with PWD); and 3) positive aspects between caregiver and others (i.e., empathy towards other caregivers, befriending peers, and sharing dementia and caregiving knowledge with others).DiscussionFindings from this study improved our understanding on positive aspects of caregiving among informal caregivers of PWD in the Asian context. In addition to similar themes across cultures such as personal growth, our study identified a few unique themes like improved awareness of self-care and chances to demonstrate filial piety. For future studies targeting Asian caregivers, it is necessary to include these cultural-specific positive aspects of caregiving.

Impact of the COVID‐19 Pandemic on Dementia Caregivers in the South US

AbstractBackgroundCompared to their non‐caregiving peers, caregivers of persons with dementia (PWD) endure higher psychological distress, social isolation and increased morbidity and disability. Stress and isolation experienced by caregivers during the COVID‐19 pandemic have added to caregiver burden and worsened health. The objective of this study was to obtain a greater understanding of the health and needs of informal caregivers of PWD during the COVID‐19 pandemic.MethodUsing a cross‐sectional questionnaire, we attained demographic data, characteristics of caregiving during the COVID‐19 pandemic, mental health status, COVID‐19 testing and illness, and protective measures taken to prevent infection with COVID‐19 among caregivers of PWD. From March 2021 to August 2021, respondents were recruited through the Maya Angelou Center for Health Equity’s Alzheimer’s disease (AD) registry. Descriptive statistics (frequency and proportions) of demographic, caregiving, health, and COVID‐19 related data for caregivers of PWD was conducted using SAS® software version 9.4.ResultA total of 274 caregivers of PWD participated in the study. More than half of caregivers were women (56.57%), and approximately 73% of caregivers were married. The racial composition of the majority of caregivers included African American (44.16%), Non‐Hispanic White (26.64%), and Native American (20.44%). Most caregivers were providing care for parents (59.86%) or a partner (21.17%). Nearly 46% of caregivers reported experiencing stress, but not being burnt out. Almost 47% of caregivers reported high psychological distress during the COVID‐19 pandemic. In addition to caregiving stressors due to the COVID‐19 pandemic, caregivers also experienced behavioral changes in their household; more than half of caregivers experienced increased interpersonal conflict with loved ones, friends, or co‐workers. The top 3 needs reported during the COVID‐19 pandemic included support with caregiving, medical care, and food.ConclusionApproximately half of caregivers of PWD experienced stress and psychological distress during the COVID‐19 pandemic. In addition to the stress of caregiving, caregivers lacked support for necessary medical services and social needs. The data collected from caregivers during the COVID‐19 pandemic will be used to develop recommendations to support informal caregivers during emergency situations.

Feasibility of Intentional Technology Pairing in Fostering Connections Among Dementia Caregivers.

To gather user input iteratively to develop a matching algorithm for peer-to-peer support and to assess the feasibility and usability of a web-based program to conduct matching. 32 caregivers of persons with dementia (PwD) participated in semi-structured focus groups and completed surveys to provide input regarding characteristics deemed valuable in someone they would choose to be connected with for emotional support. Through an iterative process as new information emerged, a web-based prototype and matching algorithm were developed. Caregivers interacted with the prototype and provided feedback indicating ease of accessibility and use, initial impression, and comfort/satisfaction with profile content. All 32 caregivers (age 40-90, education 12/GED-20, sex 88% female, 31% Black/African-American) completed online profiles. Of those who interacted with the prototype, 23 completed the feedback survey, on which 87% had no or only mild difficulty accessing the site, 91% had no difficulty with technology once there, 86% had a very or quite positive initial impression, 91% found it very or quite easy to navigate, 87% rated a very or quite high level of comfort with completing the personal profile questions, and 82% felt very or quite confident the questions asked would lead to a good match. A large majority of caregivers of PwD demonstrated the web-based platform was easy to access and navigate, provided a positive experience, and gathered information that would lead to a good supportive relationship with another caregiver. Phase II will optimize the design and algorithm and evaluate the matching process in 350 caregivers.

Culturally and linguistically appropriate home visit intervention for underserved dementia family caregivers: Preliminary results from a randomized controlled trial

AbstractBackgroundFamily caregivers of persons with dementia (PWD) suffer from stress and negative health outcomes related to round‐the‐clock caregiving responsibilities. Often caregivers lack awareness of community resources. Community Health Workers (CHW) have proven effective in educating families and can implement interventions that aim to reduce the impact of stress on their health. To alleviate caregiver burden among dementia family caregivers, this study has CHWs’ visit family caregivers’ homes offering education, stress reduction, and compassionate support/listening.MethodsParticipants were recruited from Southern California via non‐profit organizations, senior centers, and adult day services. Participants were randomly assigned to CHW home‐visit intervention group (IG) or control group (CG) with resource information only. The intervention includes stress reduction techniques of mindful breathing and compassionate support/listening, (2) education on dementia caregiving skills to handle difficult behaviors of PWD, and (3) resource information. The 3‐month intervention is given by bilingual CHWs who speak English, Spanish, Vietnamese, or Korean. A linear mixed model was used to compare differences from baseline to 3‐month on each outcome (caregiver burden, PWD behaviors ‐ memory, distress, disruption) between IG and CG. Exit interviews were conducted for IG participants.Results26 family caregivers participated in the study (12 Korean, 9 Vietnamese, 3 Hispanic, 2 Caucasian); 14 spouses (54%), 12 off‐spring (46%); 18 females (69%), age from 34 to 89 (mean = 66.8 sd = 12.6). IG Participants showed a significant decrease in caregiving burden compared to CG (coefficient = ‐7.68, p = .0041). PWD behaviors were significantly decreased from baseline to 3 months but no difference by group. However, there was a trend for improvement of PWD’s memory problems in the IG compared to the CG (coefficient = ‐2.43, p = .056). Language specific exit interviews showed that educational materials were valuable and communication skills training was helpful as was CHW home visits. Most participants reported the benefit of mindful breathing and practiced it when overwhelmed or having sleep problems. The overall satisfaction of the intervention was high (mean = 4.4 of 5). Recruitment is on‐going but challenging during the pandemic.ConclusionPreliminary results showed the CHW led home‐visit intervention helped improve burden and PWD memory problems and was acceptable by the family caregivers of PWD.

Assistive products to support daily time management of older persons with dementia in India: experiences and views of informal caregivers and occupational therapists

Purpose The present study aimed to understand how informal caregivers and occupational therapists support daily time management (DTM) of older persons with dementia (PwD) and their views regarding assistive products for DTM, i.e., time management products (TMPs). Methods The study involved a qualitative descriptive approach rooted in principles of naturalistic inquiry. Twelve caregivers of PwD and eight occupational therapists were interviewed. Conventional content analysis was performed. Results Findings are described in three categories. The first category “current strategies to support DTM” described the low-tech strategies used for specific cognitive functions. The second category “factors influencing DTM and TMP” entailed factors related to the PwD (especially premorbid time management), the caregiver (multiple caregivers, attitude towards technology), the occupational therapist (impairment-oriented practice, limited resources and training in DTM) and the context (attitude towards time, poor awareness and knowledge of dementia, an expectation of recovery, negative societal attitudes towards devices, affordability/access). The third category “expectations from TMP” described the participants’ expectations regarding device-related features (low-cost, easy to use, portable, low maintenance, customisable and useable across the disease continuum) and support for device use (maintenance, caregiver education). Conclusions The study provides contextually relevant recommendations and strategies to inform the provision, acceptance and adherence to DTM interventions and guide the development and prescription of indigenous TMP for PwD in India. Implications for rehabilitation Adoption of time management products (TMPs) for people with dementia in India requires an understanding of contextual factors, especially culturally influenced attitudes of persons with dementia and their family members towards time, assistive products and elders. Contextually relevant approaches and strategies are suggested to guide the provision of daily time management (DTM) interventions including TMPs for people with dementia and their families in India. It is imperative to assess the relevance, acceptance and feasibility of available TMPs for people with dementia and their families living in India and develop contextually relevant indigenous products. Occupational therapists working with people with dementia and their families would benefit from more opportunities for training and access to resources (including contextually relevant standardized assessments) to implement DTM interventions.

A Culturally and Linguistically Appropriate Telephone Support Intervention for Diverse Family Caregivers of Persons With Dementia During the COVID-19 Pandemic.

Caregivers of persons with dementia (PWDs) were socially isolated with little support during the COVID-19 pandemic "Stay-At-Home" order in the United States. To enhance social and emotional connection for diverse caregivers, a culturally/linguistically appropriate telephone intervention provided compassionate listening, mindful breathing, and COVID-19 safety education. The study purpose was to understand caregiving challenges and to evaluate the intervention for caregivers during the early pandemic using a qualitative approach. Twenty-three caregivers participated in the intervention provided by bilingual research assistants for 3 months. Call logs were used to describe the caregivers' dialogue. Thematic analysis identified (a) the challenges, including fear of coronavirus disease, providing around-the-clock care, and forced isolation and negative emotions; and (b) caregivers' experience with the intervention, including connecting with the outside, relief from emotional stress, reliable COVID-19 information, and reinformed caregiving skills. Results suggest that the telephone support was of benefit to diverse caregivers of PWDs during the pandemic by promoting social connection and reducing emotional distress.

The impact of having foreign domestic workers on informal caregivers of persons with dementia \u2013 findings from a multi-method research in Singapore

BackgroundInformal caregivers of persons with dementia (PWDs) sometimes engage foreign domestic workers (FDWs) to support their caregiving journey. However, there has not been much research to establish if this is really beneficial. The current study aims to investigate whether engaging FDWs specifically for caregiving of PWDs truly moderates caregiver stress and to explore caregivers’ experiences of engaging FDWs.MethodsA multi-method study design with a quantitative and qualitative sub-study was adopted. For the quantitative sub-study, 282 informal caregivers of PWDs were recruited. Propensity score matching analysis was used. For the qualitative sub-study, 15 informal caregivers with FDWs were interviewed. Inductive thematic analysis was conducted.ResultsThe quantitative sub-study confirmed that engaging FDWs did moderate the depressive symptoms of informal dementia caregivers (marginal effect = -3.35, p = 0.0497). However, such support did not affect their caregiving burden, self-efficacy, and perceived positive aspects of caregiving. The qualitative sub-study suggested that engaging FDWs is an ambivalent experience, which entails both support and challenges.ConclusionsThe current study confirmed previous research findings, that engaging FDWs moderated depressive symptoms among caregivers of PWDs, and it could be through their physical support such as in daily caregiving activities. Policy-makers may consider providing more subsidies to caregivers caring for PWDs with mobility issues to hire FDWs. They may also consider providing training to FDWs on dementia caregiving skills and improving the intake of such training as this might be helpful for both FDWs and caregivers during this journey.

Digital outreach in online dementia discourse

Introduction: The rapid online expansion of social media can decrease social isolation for both caregivers and persons with dementia (PWD) through the digital communities they create. Background: PWD and their caregivers are increasingly turning to social media to express their own concerns and offer advice to each other. Material analyzed: Multimodal methods were used to analyze three online sites – two caregiver sites and one site for PWD. The sites are StoryCall, a video archive recorded by South Carolina caregivers about caring for US veterans with dementia; Molly and Joey, a video series of Joey’s interactions with his mother Molly, who had Lewy body dementia; and Dementia Diaries, oral diaries transcribed by volunteers. Results: The topics discussed online by people who wish to advise caregivers often differ from the issues and topics that most concern or interest caregivers. Persons with dementia openly shared that they still wished to live as well as possible and wanted to be seen as real people. Implications and conclusions: Through social media, PWD remind themselves and others that they are more than their condition; similarly, caregivers of PWD educate themselves and others through sharing experiences and asking questions.

Interventions for Rural Caregiver Health: An Integrative Review.

Few health behavior interventions exist for rural caregivers of persons with dementia (PWD) in the United States. Of interventions that have been studied, little is known about health outcomes that are included in interventions and which interventions are most effective on health outcomes. An integrative literature review of intervention studies for rural caregiver health throughout the United States was undertaken with an emphasis on concepts related to health promotion, self-management, self-care, and/or self-efficacy. Findings from this review indicated multicomponent interventions that included self-care strategies were associated with improvements of caregiver psychosocial health outcomes of depression, burden, self-efficacy, social support, and self-rated health. Sleep problems and endurance potential were the only physical health outcomes measured. To prevent adverse physical health outcomes, interventions with attention to rural context are needed that emphasize health promotion with a focus on health behaviors and health outcome measurement in rural caregivers of PWD. [Research in Gerontological Nursing, 15(2), 101-108.].

Depression, Anxiety and Stress on Caregivers of Persons with Dementia (CGPWD) in Hong Kong amid COVID-19 Pandemic.

Background: Coronavirus disease 2019 (COVID-19) contributed to increasing prevalence of depressive symptoms and other psychological repercussions, particularly in the disease population in Hong Kong. Nonetheless, the caregiver burden of caregivers of persons with dementia (CGPWD), has been under-investigated. Aims: This study examined the psychological impact and its correlates on the CGPWD in Hong Kong amid the COVID-19 outbreak. Methods: CGPWD referred from rehabilitation clinics and online seminar were used to recruit participants to complete an online questionnaire by the end of the second-wave of the COVID-19 outbreak (June 2021). To be eligible, either full-time or part-time CGPWD, aged 18 or above, can understand Cantonese, currently reside in Hong Kong and offering care to PWD for at least one year, were recruited. Those CGPWD diagnosed with any type of psychiatric disorder were excluded from this study. The Chinese Center for Epidemiologic Studies Depression Scale (CES-D), Perceived Stress Scale (PSS-10), Generalized Anxiety Disorder (GAD-7), Zarit Burden Interview (ZBI-22), and Nonattachment Scale (NAS-7) were used to measure participants’ depression, perceived stress, anxiety symptoms, caregiver burden and wisdom in subjective feelings of internal stress. The modified Medical Outcomes Study Social Support Survey (mMOS-SS) and the SARS Appraisal Inventory (SAI) were also administered to measure participants’ perceived support and coping efficacy. Follow-up responses were gathered by the end of third-wave outbreak (October 2021). Results: A total of 51 CGPWD participated, of which, 33 (64.7%) suffered from probable depression (CES-D score ≥ 16). Participants also showed a significant increase in depression symptom scores at the three-month follow-up period (t = 2.25, p = 0.03). CGPWD with probable depression had less non-attachment awareness and higher scores in anxiety, stress, caregiving burden, and coronavirus impact (all p < 0.05) than those without. Conclusions: High prevalence of depressive symptoms was noted among our CGPWD sample and these symptoms seemed to worsen substantially. Contingent online mental health support should be prioritized to those CGPWD to reduce psychiatric morbidity and the global disease burden.