Do Caregiver Interventions Improve Outcomes in Relatives With Dementia? A Meta-analysis

Despite plenty of reviews on the benefits of nonpharmacological interventions for dementia informal caregivers, large-scale review on the effects of these interventions on the care-recipients (CRs) is lacking. We searched PsycINFO, CINAHL with Full Text, MEDLINE, and PubMed from inception to end of 2020 and found 144 articles that reported randomized controlled trials of caregiver interventions using CR outcomes. Interventions were found to reduce neuropsychiatric symptoms and mood disturbance, enhance cognition and quality of life, and delay institutionalization and mortality, with care coordination/case management, educational intervention with psychotherapeutic components, and direct training of the care-recipient (with caregiver involvement) being the more potent interventions. However, the effects were generally small to very small. Together with existing findings on caregiver outcomes, a tripartite scaffolding model of caregiver support is proposed. Future directions in terms of developing consensual guidelines, a registry of intervention manuals, and family-centered programs are discussed.

Caregiver Support for Asian American Alzheimer’s Disease and Related Dementias Caregivers: A Conceptual Synthesis

Informal caregiver support has been defined as different types of interventions. However, it has not been well explained in the social context and not well discussed as an integrative concept for dementia caregivers who are Asian Americans. Therefore, the aim of this study was to conduct a dimensional analysis--a type of evidence synthesis--to explore caregiver support in the context of Asian American dementia caregivers. A synthesis of 40 articles produced four interrelated dimensions of caregiver support: Individual (language, information, psychological issue, and culture); Family (family member support, availability of extended family, and decision making); Community (bilingual and bicultural help, and religion and spiritual source); and Professional healthcare system (expectations from healthcare professionals and caregivers for caregiver interventions, communication concordance, initiative in seeking help, and trust). The findings provide guidance for future studies on this population in promoting caregiver’s health and developing caregiver interventions.

Virtual CARE for Caregivers of PWD: Adapting to the New Normal

Caregivers of persons with dementia (PWD) often experience increases in depression, anxiety, and burden as the disease progresses. In fact, as the PWD’s neuropsychiatric symptoms increase and independence in ADLS decrease, caregivers psychological and physical health outcomes worsen. The literature suggests that caregiver interventions that teach specific skills are more beneficial than psychoeducational interventions, particularly regarding the amelioration of the psychological impacts of informal caregiving. However, because of caregiving demands, caregiver’s own physical limitations, and competing obligations, it can be difficult to attend caregiver support or education programs outside the home. With the emergence of the COVID-19 pandemic, arranging such interventions became more complex, Therefore, we report on preliminary qualitative outcomes of a study investigating the feasibility and acceptability of converting an in-person, group dementia caregiver education intervention, CARE, to a telehealth platform. We report the findings of two objectives: 1) lessons learned when attempting to convert an in-person group intervention to telehealth and 2) experience and perceived benefit of attending a virtual group from the perspective of the participants of our first two groups. Briefly, our findings demonstrate the strong need for technological support. Participants report positive experience regarding the convenience of attending the group from their home, the benefits of the assigned exercises, and the support they found from other group members. The COVID-19 pandemic has forced many to embrace the virtual option as they adapt to a new normal. There are undoubtedly hurdles to overcome, but there are also advantages to be leveraged.

Focus Group Findings of Trial Participants in a Caregiver Psychosocial Intervention: Savvy Caregiver Program

Previous work highlights the importance of sociobehavioral interventions to address dementia caregiving health and wellbeing outcomes. By empowering caregivers to become objective managers of their loved one’s illness, and own self-care, they are less likely to exhibit negative outcomes. We are conducting a mixed-method, randomized trial to test manualized, multi-family psychoeducational group interventions: Savvy Caregiver Express, and Savvy Caregiver Program. This poster describes the qualitative findings of four focus group interviews recently conducted to elucidate the study participation experiences of family caregivers enrolled in the parent study. Twenty-five racially and ethnically diverse participants (21 women, 4 men) caring for a family member with cognitive decline participated in focus group interviews conducted via videoconferencing methods. We captured more nuanced experiences from the perspective of study participants with regards to the caregiver interventions and their research participation. Interviews were conducted by trained research personnel, lasted 60-75 minutes, and followed an open-ended questioning route. Based on thematic analyses, we identified the following themes: 1) Changing one’s mindset: Seeing life through their shoes; 2) Getting information in one place; 3) Expanding the personal experience; 4) Fears and vulnerability; 5) Time constraints vs. wanting more; 6) Not everyone is at the same place; 7) Technology: It’s going to be part of our lives; and 8) Research: Not always in sync. Our findings indicate high satisfaction with most components of the program while specific recommendations were offered to improve the intervention and study experience such as tailoring materials to stage-specific needs.

PPA Tele-Savvy: Developing an Online Intervention with Caregivers of Persons with Primary Progressive Aphasia

Primary progressive aphasia (PPA) typically results from a neurodegenerative disease such as frontotemporal lobar degeneration or Alzheimer’s disease and is characterized by a progressive loss of specific language functions with relative sparing of other cognitive domains until later stages when widespread cognitive decline consistent with generalized dementia is more prevalent. PPA tends to appear earlier than most dementias, in late middle-age, and can result in a high degree of psychological and economic burden for the family. Thematic analysis of PPA caregiver studies reveal families are learning to adapt to not only declining language across communicative contexts and domains, but concomitant behavioral, social communication and personality changes over time. While there are several evidence-based dementia caregiver interventions, none are specifically designed for the PPA family caregiver. This pilot project, funded by the Emory University Roybal Center is the adaptation of an evidence-based on-line psychoeducation program (Tele-Savvy) to address the unique challenges facing informal caregivers of those living with PPA and to help these caregivers achieve mastery within this context. PPA caregivers have been engaged through focus groups to identify their most pressing caregiving challenges and how the existing Tele-Savvy curriculum should be adapted to meet their needs. Synchronous and asynchronous video modules have been designed to address: PPA education, the impact on dyadic connection and caregiving challenges and communication strategies specific to PPA. The Tele-Savvy central processes of coaching and de-briefing will also be pilot tested and refined.

The Caregiver Initiative: A Model for Caregiver Health and Wellness in Age-Friendly Health Systems

Health care systems have historically relied on family caregivers to provide long-term care for older adults, often including medically complex care for which they have no medical training. Yet there are few interventions in place to assist them within health care systems. The Rush Caregiver Initiative (Rush-CGI) provides system-level and caregiver interventions. Rush-CGI’s system-level interventions focus on culture change, including modifying workflows, training, and electronic health record data. Rush-CGI caregiver interventions begin with assessment of needs and provision of resources for caregivers, offering interprofessional family-based interventions. Interventions include a Teach-Back Clinic, Family Care Planning sessions, and Goals of Medical Care meetings, all held on an outpatient basis either in person or virtually. Outcomes include decreased caregiver depression and anxiety, and increased caregiving self-efficacy. This presentation will discuss creating system level change and providing customized caregiver interventions, including how the Rush-CGI can be modified to fit a variety of patient populations.

ACT-related Processes: Value-based Living Attenuates Meditating Relationships in Caregiver Stress Outcomes

Associations between behavioral and psychological symptoms of dementia (BPSD), caregiver burden, and depressive symptoms are well-established, and these constructs are often targeted in interventions. Increasingly, dementia caregiver interventions are informed by mindfulness- and acceptance-based approaches, such as Acceptance and Commitment Therapy (ACT). In addition to standard outcomes, like burden and depressive symptoms, these interventions/therapies seek improvements in individuals’ psychological flexibility (e.g., cognitive defusion, present moment awareness, values-based living). Less is known how these constructs interact within well-established caregiver stress processes. We examined a moderated mediation model (N=161 dementia caregivers; PROCESS Procedure; SPSS Release 2.16.1), with BPSD frequency (Revised Memory and Behavior Problems Checklist) predicting depressive symptoms (10-item CES-D), mediated via caregiver burden (short Burden inventory). The moderator was the Values Questionnaire (Progress scale), and we controlled for gender, caregiver duration, age, income, and education. Results revealed that the indirect effect of BPSD on depressive symptoms through caregiver burden was weakened through higher progress toward values (moderated mediation significant at p<.05). In essence, greater levels of living according to values dampened the effect of BPSD on depressive symptoms, through care-related burden. These findings are important because caregivers often cannot leave this role, requiring them to learn to live with the caregiving role in healthy ways. Value-based living and committed action toward values signify caregivers’ success at balancing care-related stress with other priorities, and psychologically adjusting to difficulties. Interventions that emphasize values-based living, like ACT, have promise for caregivers, offering healthy ways to psychologically adjust to, and live with, the experience.

Needs and Concerns of Lewy Body Disease Family Caregivers: A Qualitative Study

Lewy body disease (LBD) is a devastating condition with cognitive and physical deficits that pose a challenge to family caregivers. The purpose of this study was to identify the needs and concerns of family caregivers of persons with LBD. A convenience sample of LBD caregivers were interviewed regarding their caregiving needs, concerns, strategies, and advice. A content analysis approach was used to organize data into themes from an existing needs and concerns framework. Findings included the need for more information about the disease, strategies for managing LBD-related emotions and behaviors, support and assistance with physical and instrumental care, and strategies for managing one’s own personal responses to caregiving. Findings highlight the need for a Lewy body specific caregiver assessment tool and future caregiver interventions.

Effectiveness of caregiver interventions for people with cancer and non-cancer-related chronic pain: a systematic review and meta-analysis

Background: People with chronic pain frequently have difficulties in completing everyday tasks to maintain independence and quality of life. Informal caregivers may provide support to these individuals. However, the effectiveness of interventions to train and support these individuals in caregiving remains unclear. The purpose of this study was to systematically review the evidence to determine the effectiveness of caregiver interventions to support informal caregivers of people with chronic pain. Methods: A systematic review of published and unpublished literature databases was undertaken (9 April 2021). Trials reporting clinical outcomes of caregiver interventions to train informal caregivers to support community-dwelling people with chronic pain were included. Meta-analysis was undertaken and each outcome was assessed using Grading of Recommendations, Assessment, Development and Evaluation. Results: Twenty-seven studies were eligible (N = 3427 patients). Twenty-four studies assessed patients with cancer pain and three with musculoskeletal pain. No other patient groups were identified. There was very low-quality evidence that caregiver interventions were beneficial for caregiver health-related quality of life (standardised mean difference = 0.26, 95% confidence interval = 0.01 to 0.52; N = 231). There was moderate-quality evidence that caregiving interventions were effective in reducing pain in the short-term (standardised mean difference = 0.16, 95% confidence interval = −0.29 to −0.03). There was low-quality evidence that caregiving interventions had no beneficial effect over usual care for psychological outcomes, fatigue, coping or physical function in the long-term. Conclusion: Caregiving interventions may be effective for patients and caregivers but only in the shorter-term and for a limited number of outcomes. There is insufficient evidence examining the effectiveness of caregiver interventions for people with non-cancer-related pain.

Caregiver burden in Buruli ulcer disease: Evidence from Ghana

Background Buruli ulcer disease (BUD) results in disabilities and deformities in the absence of early medical intervention. The extensive role of caregiving in BUD is widely acknowledged, however, associated caregiver burden is poorly understood. In this paper we assessed the burden which caregivers experience when supporting patients with BUD in Ghana. Method/ principal findings This qualitative study was conducted in 3 districts in Ghana between August and October 2019. 13 semi-structured interviews were conducted on caregivers of BUD patients in the local language of Twi. Data was translated into English, coded into broad themes, and direct content analysis approach was used to analyse results. The results show the caregivers face financial, psychological and health issues as a consequence of their caregiving role. Conclusion/ significance This study found significant caregiver burden on family members. It also highlighted the psychological burden caregivers experience and the limited knowledge of the disease within endemic communities. Further research is needed to quantify the caregiver burden of BUD at different economic levels in order to better understand the impact of possible caregiver interventions on patient outcomes.