Thematic Analysis of Alzheimer's Medication Management Discussion in a Non-Moderated Online Forum.

BACKGROUND: Managing medications for Alzheimer's disease and related dementias is challenging for caregivers. Information about caregivers' strategies to manage these challenges is needed to inform intervention development. OBJECTIVE: This study aimed to understand caregivers' medication management experiences by analyzing online community discussions. METHODS: Posts were extracted from the ALZConnected® Forum using keywords "medication" and "drug" via web scraping. The researchers applied thematic analysis. RESULTS: Four major themes emerged: (1) role transition of medication management responsibilities, (2) caregivers' uncertainty about medication purpose and values, (3) conflicts between the care recipients and caregivers, and (4) difficulty accessing and affording medications. CONCLUSIONS: The experiences shared on a non-moderated, unstructured online forum indicate that medication management is challenging and overwhelming for caregivers of people living with Alzheimer's disease and related dementias. Since this is a progressive disease with various stages and changing needs, caregivers' strategies vary and are often limited by available resources and support. Health care providers should offer training and support for caregivers to navigate the transfer of medication management responsibilities and changing care needs as the disease progresses.

"I Lay Awake at Night": Latino Family Caregivers' Experiences Covering Out-of-Pocket Costs When Caring for Someone Living With Dementia.

BACKGROUND AND OBJECTIVES: The financial burden of caregiving has received less research attention than physical and emotional costs. This is especially true for underserved ethnic minorities. Financial strain affects mental and physical health and is unequally distributed across caregivers of different races and ethnicities. Although caregivers overall spend, on average, one quarter of their income on caregiving, Latino caregivers, the focus of this study, spend nearly half. RESEARCH DESIGN AND METHODS: To better understand this disparity, we conducted 11 qualitative interviews with 14 Latino caregivers of persons living with dementia located in either California or Texas. Interview transcripts were thematically coded, guided by a material-psychosocial-behavioral conceptual model of financial strain. RESULTS: We identified 3 themes: daily needs and costs, psychological distress caused by financial issues, and stressful barriers to accessing family and societal support. Furthermore, interviews revealed how Latino culture may influence spending patterns and management of costs. Findings suggest that preference by Latino families to care for a family member in the home may be met with a financial disadvantage due to the high out-of-pocket costs of care. DISCUSSION AND IMPLICATIONS: A better understanding of the factors contributing to high costs for Latino caregivers and how these costs affect caregivers will inform approaches at both the individual and policy levels and develop culturally relevant interventions to help Latino families to lower caregiving costs. This is especially important as the number of Latinos living with dementia is expected to increase over the next 4 decades and effective interventions are lacking.

Comprehensive Older Adult and Caregiver Help (COACH): A person-centered caregiver intervention prevents elder mistreatment.

BACKGROUND: Elder mistreatment (EM) harms individuals, families, communities, and society as a whole. Yet research on interventions is lagging, and no rigorous studies demonstrating effective prevention have been published. This pilot study examines whether a first-of-its-kind coaching intervention reduced the experience of EM among older adults with chronic health conditions, including dementia. METHODS: We used a double-blind, randomized controlled trial to test a strengths-based person-centered caregiver support intervention, developed from evidence-based approaches used in other types of family violence. Participants (n = 80), family caregivers of older adults who were members of Kaiser Permanente, completed surveys at baseline, post-test, and 3-month follow-up. The primary outcome was caregiver-reported EM; additional proximal outcomes were caregiver burden, quality-of-life, anxiety, and depression. Nonparametric tests (Mann-Whitney U, Fisher's Exact, Wilcoxon Signed Rank, and McNemar's) were used to make comparisons between treatment and control groups and across time points. RESULTS: The treatment group had no EM after intervention completion (assessed at 3-month follow-up), a significantly lower rate than the control group (treatment = 0%, control = 23.1%, p = 0.010). CONCLUSIONS: In this pilot study, we found that the COACH caregiver support intervention successfully reduced EM of persons living with chronic illness, including dementia. Next steps will include: (1) testing the intervention's mechanism in a fully powered RCT and (2) scaling the intervention for testing in a variety of care delivery systems.

Social Activity Restriction and Psychological Health Among Caregivers of Older Adults With and Without Dementia.

OBJECTIVES: We examined associations between social activity restriction and psychological distress and well-being for caregivers of older adults with and without dementia, and if the identified associations are different for the two groups. METHODS: Using data from the 2017 National Study of Caregiving, we identified caregivers of older adults with (N = 541) and without (N = 1701) dementia. Linear regression models were estimated, adjusting for caregivers' age, gender, race, education, relationship to care recipient, and self-rated health. RESULTS: Restriction in visiting friends and family and attending religious services were associated with higher distress in dementia caregivers. Restriction in visiting friends and family was associated with higher distress and lower well-being in non-dementia caregivers. Any activity restriction had stronger association with distress for caregivers of older adults with versus without dementia. DISCUSSION: Findings highlight the need for tailored interventions based on caregivers' perceptions of meaningful social activities and dementia-friendly communities to promote social participation.

How do family caregivers of older adults cope with relationship strain?

OBJECTIVE: Studies of families' experiences with caregiving to older adults most often focus on overall burden and stress. Yet, caregiving is also a type of relationship, and the onset of caregiving can contribute to relationship strain between care partners. Despite implications for both care partners, little is known about how caregivers cope with caregiving relationship strain. METHODS: The authors conducted nine focus groups and 8 interviews with a purposeful sample of racially and ethnically diverse family caregivers in Los Angeles. Conventional content analysis was applied to transcripts to identify how caregivers cope with relationship strain. RESULTS: Analyses revealed four overall coping approaches to manage relationship strain: (1) Self-Care; (2) Adapting Behaviors, (3) Adapting Feelings and Cognitions, and (4) Help and Support. Selected strategies likely vary by care recipient condition. For example, caregivers for persons living with dementia emphasize adapting their own behaviors and feelings, rather than trying to change their loved one's behaviors. CONCLUSIONS: Findings suggest that caregivers cope with relationship strain using both interpersonal tension and care management strategies. We also identified possible variations by care recipient condition and caregiver race and ethnicity. These results suggest a need for interventions focused on caregiver coping should also be tested for effects on relationship strain.

Qualitative Evaluation of Family Caregivers' Experiences Participating in Knowledge and Interpersonal Skills to Develop Exemplary Relationships (KINDER): Web-Based Intervention to Improve Relationship Quality.

BACKGROUND: The onset of Alzheimer disease and related dementias (AD/ADRD) can alter relationships between family caregivers and persons living with AD/ADRD, such as through the occurrence of distressful behavioral and psychological symptoms of dementia. Poorly perceived relationship quality by caregivers contributes to negative outcomes for both care partners, such as low-quality caregiving and potential mistreatment of older adults. Knowledge and Interpersonal Skills to Develop Exemplary Relationships (KINDER) is a new, web-based, asynchronous psychoeducational intervention with content informed by focus groups with family caregivers. The program was developed to prevent low-quality caregiving and potential mistreatment of older adults by focusing on building healthy caregiving relationships. OBJECTIVE: The purpose of this study is to describe caregivers' experiences participating in KINDER to understand intervention acceptability. Of particular interest was learning how comfortable caregivers were viewing content addressing potential mistreatment, as well as whether asynchronous delivery created any barriers to participating in the intervention. Findings will inform future program refinements before efficacy testing. METHODS: Although 23 caregivers enrolled in the KINDER parent study, only 7 of them completed the 8-week intervention. In-depth, semistructured qualitative interviews were conducted with all participants who completed the program to understand their experiences while attending KINDER and to decipher barriers to participation. We also asked participants about which program elements were most valuable and which were least valuable to them, as well as how the program could be improved. Interview transcripts were analyzed by 2 coders using thematic analysis. RESULTS: Our findings indicate that caregivers were overall satisfied with KINDER's focus and content. Participants particularly liked how KINDER materials felt authentic and relevant to supporting healthy care relationships (Theme 1). The program's multiple components were found to be valuable, especially story-based video vignettes and readings (Theme 2). Most caregivers were comfortable viewing depictions of mistreatment and understood the importance of this content (Theme 3). Notably, while caregivers appreciated the convenience of participating in an asynchronous web-based intervention, several expressed a desire for more opportunities to speak with other caregivers (Theme 4). Technology challenges, such as a lack of clarity about automated intervention activities, deterred completion. CONCLUSIONS: Findings from this study suggest an asynchronous web-based intervention covering sensitive topics such as mistreatment is acceptable for at least some AD/ADRD caregivers. Caregivers' comments that materials felt authentic may suggest that the integration of caregiver voices before intervention development enhanced the relevance of content. To make KINDER easier to deliver and participate in, the investigators plan to reduce the use of automation and integrate more group-based programming, as recommended by participants. Further, given the higher-than-expected dropout rate, in future studies, the investigators will collect data to determine the reasons for participants not completing study activities.

A Community Initiative to Engage Employers to Support Caregiving Employees and Build an Advocacy Alliance.

Family caregivers to persons living with a chronic or disabling condition often report disruption to their employment. Employment disruption can cause long-term financial difficulty and psychological distress for caregivers, high costs for employers, and exacerbates social inequities. In this commentary, we describe a community initiative to better support employees who are caregivers conducted with nonprofit employers in San Antonio, located in the central Texas region of the United States. This initiative aimed to raise awareness among local employers about the challenges employees face in balancing employment and caregiving. This led to the co-development of a pledge to guide employer efforts to support employees who are caregivers. This initiative represents a first step to mobilize employers as stakeholder allies to improve workplace support for family caregivers. The authors draw on the Shilton Model of Policy Advocacy to make the case that the mobilization of employers as advocacy stakeholders can hasten the advancement of policies that enable family caregivers to balance both roles. Further, the implementation of organization-level changes, in addition to state and federal policy changes, to support employed caregivers by employers is consistent with recommendations of the recently published National Strategy to Support Family Caregivers.

A Multiple Stakeholder Perspective on the Impact of COVID-19 on Dementia Care.

The aim of this study was to describe the impact of the COVID-19 pandemic on dementia care from a multiple stakeholder perspective. We used a multi-method design, with a cross-sectional survey followed by focus groups/interviews. Surveys were completed by people living with dementia (n = 27), family caregivers (n = 161), and health and social care professionals (n = 77). A sub-sample (n = 55) participated in an interview or one of 9 focus groups. Surveys were analyzed with descriptive statistics and focus group/interview data were analyzed using a thematic approach. Participants reported an impact of COVID-19 on dementia care, including less access to care and resources for care. Telehealth and tele-support/education were reported to be effective alternatives to support care. Themes from the qualitative data about dementia care were: (1) planning and providing care, (2) making choices around risk and safety, (3) experiences of loss, and (4) technology and dementia care. The results of this study present opportunities to improve the quality of care through addressing inequities and identifying improved and innovative approaches to address social isolation and virtual care for this vulnerable population.

Family caregivers' perceptions and experiences of participating in the learning skills together intervention to build self-efficacy for providing complex care.

The purpose of this study was to describe how an intervention to teach family caregivers of persons living with dementia to provide complex care tasks contributes to their self-efficacy. This qualitative study was embedded in a pilot study evaluating the intervention. Semi-structured interviews were conducted with 15 caregivers who had completed the intervention. Content analysis was used to analyze the data. Themes identified from the interviews were: "helpfulness of the content", "if they can do it, so can I", and "applying what I have learned". Caregivers described the helpfulness of learning from expert healthcare professionals in a supportive environment. They valued the group setting, including interacting with and learning from their peers. Caregivers demonstrated mastery of the content by applying it to their caregiving situations and sharing information with other family members. These findings provide insights into successful elements in a complex care intervention that contributed to building caregiver self-efficacy.

Caregiver self-efficacy improves following complex care training: Results from the Learning Skills Together pilot study.

Family caregivers to persons living with dementia increasingly provide complex care tasks, though most (53%) do so without any training. "Complex care" includes medical/nursing tasks, as well as personal care tasks that require disease knowledge. Of the 67% of dementia caregivers who provide complex care, nearly half worry about making a mistake. To help caregivers feel more confident when providing complex care tasks, we developed and conducted a pilot study of the 4-week Learning Skills Together psychoeducation program (LST; N=35). Participants in LST reported high satisfaction with the program and found the information shared about complex care was easy to understand. Pre- and post-test data demonstrated improvements in mean caregiver self-efficacy at both 4-weeks and 8-weeks post-intervention (mean difference (MD)=1.0, SD= 1.6, p-value=0.004 and MD= 1.0, SD=2.2, p-value=0.038, respectively). Results demonstrate the potential for a brief psychoeducational program to prepare caregivers to provide complex care to persons living with dementia.

An Interprofessional Skills Workshop to Teach Family Caregivers of People Living with Dementia to Provide Complex Care.

The purpose of this study was to evaluate the acceptability of and satisfaction with an interprofessional educational workshop to teach family caregivers of persons living with dementia to provide complex care. The workshop was developed by a team that included nursing, occupational therapy, speech-language pathology, nutrition and dental hygiene. Caregivers who attended the workshop completed an evaluation to describe their satisfaction and acceptability using a Likert-type scale, as well as open ended comments about their learning needs and feedback about the workshop. Semi-structured interviews were conducted with family caregivers and members of the interprofessional team to analyze and evaluate how the workshop may have improved their confidence in performing complex tasks and to obtain their perspectives on offering this program as a virtual workshop in the future. Family caregivers (n=171) reported high satisfaction with the workshop and strongly agreed that the workshop provided them with useful information to support their caregiving roles. Themes identified from the content of the interviews were: i) building understanding; ii) mastering new skills; and iii) learning skills together. Our results suggest and emphasize the importance and the benefits of an interprofessional team approach to support family caregivers and build confidence with complex care.

Simulation learning to train healthcare students in person-centered dementia care.

In coming decades, healthcare providers will treat a greater number of individuals living with Alzheimer's Disease and related dementias than ever. Simulation-based learning provides experiential learning opportunities to enhance clinical training, but little is known about how dementia simulation training improves understanding of dementia or how it changes in participants' ability to deliver high-quality healthcare to individuals living with dementia. In this study, we examine how a simulation training program may prepare healthcare trainees to treat individuals living with dementia. We conducted eight in-depth, one-on-one interviews with healthcare trainees who participated in the Virtual Dementia Tour (VDT) program and faculty who added VDT to their curricula, and also examined 20 reflection papers from students following participation in VDT. A thematic analysis of qualitative data led us to three themes: 1) dementia simulation complements and enhances traditional teaching methods, 2) dementia simulation helps students to understand the experiences of people living with dementia, and 3) experiential learning inspired students to reflect on actions they would take as clinicians and leaders to support individuals living with dementia and their families. Based on these findings, we propose a modified transformative learning process for dementia simulation training with healthcare students.

Full Code to Do-Not-Resuscitate: Culturally Adapted Palliative Care Consultations and Code Status Change Among Seriously Ill Hispanic Patients.

BACKGROUND: Palliative care and hospice services are disproportionately underutilized by ethnic minority patients. Addressing barriers to utilization of these services is critical to reducing disparities. The purpose of this study was to assess the impact of a culturally adapted palliative care consultation service for Hispanics on end-of-life decisions, specifically likelihood of changing from full code to do-not-resuscitate (DNR) status during index admission for serious illness. METHODS: A cross-sectional study design was applied to data extracted from electronic health records (EHR) of patients seen by a Geriatric Palliative Care service during inpatient stays between 2018 and 2019. The majority of referrals came from critical care sites. Culturally adapted palliative care consultations using the SPIKES tool featured a Spanish-speaking team member leading discussions, involvement of multiple and key family members, and a chaplain who is a Catholic Priest. RESULTS: The analytic sample included 351 patients who were, on average, 72 years old. 54.42% were female, 59.54% were Hispanic, and of Hispanic patients, 47.37% spoke primarily Spanish. Culturally adapted consults resulted in higher rates of conversion to DNR status in palliative cases of the target population. Both primary language and ethnicity were associated with likelihood of change from full code to DNR status, such that Spanish speakers and those of Hispanic ethnicity were more likely to switch to DNR than non-Hispanics and English-Speakers. CONCLUSION: This study illustrates how culturally adapted palliative care consultations can help reduce barriers and improve end-of-life decision-making, and can be applied with similar populations of seriously ill Hispanic patients.

The Differential Effects of Caregiving Intensity on Overnight Hospitalization.

This study aims to examine how caregiving for a spouse affects caregivers' likelihood of overnight hospitalization. Using data from the Health and Retirement Study, we examine the odds of spousal caregivers experiencing an overnight hospitalization in the previous two years according to caregiving status, intensity, and change in caregiving intensity. Caregivers were no more likely to experience an overnight hospitalization than noncaregivers (OR = .92; CI [.84, 1.00]). Effects varied by intensity of care. Compared to noncaregivers, caregivers who reported providing no assistance with activities of daily living were less likely to experience overnight hospitalization (OR = .77; CI [.66, .89]); however, caregivers who provided care to someone living with dementia for 4 to <6 years had 2.11 times the odds of experiencing an overnight hospitalization (CI [1.16, 3.85]). Although caregivers overall experience overnight hospitalization at a similar rate as noncaregivers, there are differences between caregivers by the intensity of care.

Conceptualizing How Caregiving Relationships Connect to Quality of Family Caregiving within the Stress Process Model.

Family caregivers provide the majority of care for older and disabled family members living with an illness or disability. Although most caregivers want to provide high-quality care, many report providing care that is potentially harmful. We apply the Stress Process Model to review the preponderance of literature implicating quality of the relationship between caregivers and care recipients as a factor contributing to quality of family caregiving. In drawing together literature on caregiving relationships and caregiving quality, this commentary identifies potentially modifiable intervention targets to develop programs to support high-quality caregiving to older adults living with a chronic illness or disability.

Unmet needs and health-related quality of life of dementia family caregivers transitioning from home to long-term care: A scoping review.

This scoping review is to identify experiences, unmet needs, and health-related quality of life (HRQoL) of family caregivers transitioning their care recipients with dementia into long-term care (LTC). The methodological framework of Arksey and O'Malley guided the review. Themes from nineteen selected studies were organized around three categories. First, caregiver experiences during LTC placement featured challenges around placement decision-making and distress and changes in relationships and responsibilities. Second, unmet needs of caregivers were desired emotional support and information about transitions. Finally, caregivers' HRQoL varies around transition. Family caregivers experience unique challenges and can have unmet needs during the LTC placement of their care recipients with dementia. Findings suggest the need for interventions that teach skills, care planning, assistance with conflict resolution, communication training, and guidance finding services and resources.

A comparison of negative financial events experienced by carers and non-carers following onset of the Great Recession.

This study compares carers and non-carers on experiences of harmful financial events during and immediately after the Great Recession. Carer status was associated with experiencing more negative financial events since the Great Recession began, even after controlling for covariates in a negative binomial regression. Carers had a higher odds of reporting: job loss, moving in with family and friends to save money, and selling possessions to make ends meet. Compared to non-carers, carers were more likely to experience adverse financial events during and following the Great Recession.

Technology-based interventions for nursing home residents: a systematic review protocol.

INTRODUCTION: A growing number of technology-based interventions are used to support the health and quality of life of nursing home residents. The onset of COVID-19 and recommended social distancing policies that followed led to an increased interest in technology-based solutions to provide healthcare and promote health. Yet, there are no comprehensive resources on technology-based healthcare solutions that describe their efficacy for nursing home residents. This systematic review will identify technology-based interventions designed for nursing home residents and describe the characteristics and effects of these interventions concerning the distinctive traits of nursing home residents and nursing facilities. Additionally, this paper will present practical insights into the varying intervention approaches that can assist in the delivery of broad digital health solutions for nursing home residents amid and beyond the impact of COVID-19. METHODS AND ANALYSIS: Databases including the PubMed, PsycINFO, CINAHL and Scopus will be used to identify articles related to technology-based interventions for nursing home residents published between 1 January 2010 to 30 September 2021. Titles, abstracts and full-text papers will be reviewed against the eligibility criteria. The Cochrane Collaboration evaluation framework will be adopted to examine the risk of bias of the included study. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses procedures will be followed for the reporting process and implications for existing interventions and research evaluated by a multidisciplinary research team. ETHICS AND DISSEMINATION: As the study is a protocol for a systematic review, ethical approval is not required. The study findings will be disseminated via peer-reviewed publications and conference presentations. TRIAL REGISTRATION NUMBER: CRD 42020191880.

Engaging multi-stakeholder perspectives to identify dementia care research priorities.

OBJECTIVES: The purpose of this study was to partner with stakeholders to identify gaps in care for persons living with dementia and their family caregivers and from this list, identify priorities for dementia care research. METHODS: Using a community-engaged research approach, a Stakeholder Advisory Council (SAC) consisting of diverse membership including persons living with dementia and family caregivers was convened. Through our work with the SAC, along with input from the wider network through a symposium, webinars, and an online learning community, gaps in dementia care and a list of topics for dementia care research was generated. This list was reduced to 46 topics for dementia care research and sent to stakeholders (persons living with dementia, family caregivers, and health/social care professionals in dementia care) to be prioritized by rating each of the 46 topics as "Not so important," "Important," or "Very important." Priorities for dementia care were summarized by frequencies and proportions. RESULTS: A total of 186 participants completed the survey from August through October 2020, including 23 (12.4%) persons living with dementia, 101 (54.3%) family caregivers, and 62 (33.3%) health/social care professionals. Consistent across stakeholder groups was the focus on research on how best to support families following a diagnosis of dementia. Among persons living with dementia, research focused on support for continuing to live in their own homes was ranked as the highest priority, rated by 91.3% as "Very Important". High priority research areas for family caregivers included interventions to slow cognitive decline (76.3%) as well as non-pharmacological approaches to manage behavioral symptoms (74.7%). The highest priority research topics for health/social care professionals were focused on the diagnosis including benefits of an early diagnosis (71.4%), how best to deliver the diagnosis (70.9%), and supports needed following a diagnosis (78.6%). CONCLUSIONS: This project draws on the strengths of its multi-stakeholder perspective to support patient-centered outcomes research. Findings are intended to inform those who conduct research and those who fund research about which research topics stakeholders believe are most important and thus have greatest potential to improve the quality of life among people living with dementia and their families.

"We Don't Feel so Alone": A Qualitative Study of Virtual Memory Cafés to Support Social Connectedness Among Individuals Living With Dementia and Care Partners During COVID-19.

Introduction: Loneliness and low social support can be detrimental to the health of individuals living with Alzheimer's and related dementias (ADRD) and family care partners. Restrictions on gatherings to prevent the spread of COVID-19 create an even greater risk for social isolation. Memory Cafés are a highly replicated program that provide individuals living with ADRD and care partners an opportunity to socialize in an inclusive and supportive environment without fear of judgment, pressure, or stigma. Following restrictions on in-person gatherings, virtual Memory Cafés offer regular social engagement opportunities in an online format. While the Memory Café model has been replicated globally, their effects on loneliness and perceived social support are generally unknown. Even less is known about their impact when operating in a virtual environment. Methods: Semi-structured interviews in Spanish and English were conducted with individuals living with dementia and family care partners who regularly attend Memory Cafés hosted by partners in a Texas Memory Café Network. Interviews took place online using video conferencing software, were transcribed, then analyzed for common themes using a combined inductive and deductive approach. Results: A total of 17 interviews were conducted with persons living with dementia (n = 5) and family care partners (n = 12) who attend Memory Cafés to learn about their perceived experiences of social connectedness since COVID-19. Care partners included spouses (n = 8) and adult children (n = 4). Interviews included attendees of different Memory Café models, including in-person only (n = 2), virtual only (n = 9), and those who attend both models (n = 6). Five key themes were identified: (1) Reprieve; (2) What is still possible; (3) Connectedness; (4) Inclusivity; and (5) Value added, with ten sub-themes supporting these main themes. Discussion: Findings substantiate evidence that Memory Cafés offer important benefits for families living with dementia, providing vital new insight into the potential for virtual Memory Cafés to offer similar benefits. Findings have implications beyond the context of COVID-19, where virtual models may support the social connectedness of those living in geographically marginalized and underserved areas. Virtual models may not address the needs of all families experiencing dementia due to lack of access to technology and limitations for virtual engagement with those experiencing later stage dementia.