An Assessment of Dementia Caregivers’ Interaction With Community-Based Services

Respite care is an important service to address caregivers' stress and fatigue when caring for a person with dementia (PWD). YouthCare is a non-medical, at-home, intergenerational respite care program that partners trained student volunteers with PWDs. The Family Caregiver Survey was created and distributed to caregivers of PWDs in Los Angeles to better understand interactions with the community and its caregiver services. The survey assesses caregivers’ demographics, daily activities, mental health, and the type of respite support needed. The survey findings (n=47) show that 53.2% of caregivers are 54 and older and 83% females. 40.4% of the caregivers listened to the radio primarily in the morning while 61.7% watched television in the afternoon to evening time. For transportation of PWDs to and from destinations, 78.3% of caregivers reported using their own vehicles. In regards to their mental health, 61.7% of the caregivers stated that they felt tired and unmotivated to complete daily activities. When asked why they sought respite services, 40% stated that they were overwhelmed by the responsibilities in addition to their own work. The groups that primarily support caregivers are family and professional respite services. Findings indicate that caregivers are most likely to trust resource recommendations from family and friends. Similar surveys should be administered in other cities and in rural locations to improve the generalizability of our findings.

Perceptions of Hospice and Transfusion Access Among Patients with Advanced Blood Cancers: Results from a Best-Worst Scaling Survey

Background: Patients with hematologic malignancies have low rates of hospice use, and when they do enroll, they often do so in the last three days of life. While lack of access to transfusions in hospice has been posited to be a key barrier to hospice use for this population, data are lacking regarding the perception of patients with blood cancers about the importance of transfusion access compared to traditional hospice services. We sought to characterize the utility of transfusions and hospice services from the perspective of patients with advanced blood cancers, who would potentially be eligible for hospice care. Methods: In October 2020, we began a web-based survey of patients with hematologic malignancies recruited from the clinics of two large cancer centers. Eligible patients were at least 18 years of age, had at least two outpatient visits to the cancer center, and had a physician-estimated prognosis of six months or less based on their hematologic oncologist answering "no" to a modified "surprise" question (Hudson KE, JPM 2018): "would you be surprised if this patient died within the next six months?" A physician-estimated prognosis of ≤ 6 months was used for study inclusion as this is an eligibility criterion for hospice. The survey was developed through literature review, a series of patient/caregiver focus groups (n=27) and cognitive debriefing with blood cancer patients (n=5). The survey included a best-worst scaling (BWS) section to assess patients' perceptions of the utility of various services routinely provided in hospice (visiting nurse, case manager, home health aide, chaplain, social worker, respite care) as well as non-routine services (transfusion access, transportation, peer support, telemedicine through videoconferencing). We asked patients to imagine a program developed to support quality of life for patients with blood cancers just like them. We then presented them with 10 questions with different combinations of the services in groups of 4 and participants were asked to select the service they considered "most important" and "least important" in deciding whether to sign up for the program. The BWS questions were constructed using a near balanced incomplete block design (Louviere JJ, Patient 2010). We conducted a hierarchical Bayesian analysis to ascertain a standardized utility score assigned to each service, a measure of the average propensity to choose a service as most important more often than least important. Analyses were conducted using Sawtooth (Sawtooth Software, Inc). Results: As of July 2021, 102 patients had completed the survey (response rate: 64.6%). The median age of respondents was 71 years (IQR 63, 77). The majority of respondents were male, white, and married/living with partner (Table). The most common diagnosis was acute leukemia (38.2%). Patients considered access to blood transfusions to have the highest importance (Figure) with a standardized utility score of 21.1, 95% confidence interval [CI] [19.6-22.6], followed by telemedicine (19.4, 95% CI [17.8-20.9]), transportation to/from medical appointments (13.4, 95% CI 11.7-15.1), and visiting nurses (10.8, 95% [9.5-12.2]. The three least important services perceived by respondents were access to respite care (4.7, 95% CI [3.9-5.6]), social workers (4.5, 95% CI [3.5-5.5]), and chaplains (2.3, 95% CI [1.3-3.3]). Conclusions: In this cohort of blood cancer patients who would potentially be eligible for hospice care, access to blood transfusions had the greatest level of importance relative to services routinely provided in hospice settings. The high value placed on transfusion access suggests that this factor plays a crucial role in hospice decision making. Accordingly, lack of transfusion access in many hospices likely reduces the propensity of patients with blood cancers to choose hospice. Innovative hospice delivery models that include access to palliative transfusions may have strong potential to increase hospice use and optimize end-of-life care for this patient population. Figure 1 Figure 1. Disclosures Huntington: Genentech: Consultancy; SeaGen: Consultancy; Thyme Inc: Consultancy; Servier: Consultancy; Novartis: Consultancy; Bayer: Honoraria; AstraZeneca: Consultancy, Honoraria; AbbVie: Consultancy; DTRM Biopharm: Research Funding; TG Therapeutics: Research Funding; Flatiron Health Inc.: Consultancy; Pharmacyclics: Consultancy, Honoraria; Celgene: Consultancy, Research Funding.

Developing an mHealth Application to Coordinate Nurse-Provided Respite Care Services for Families Coping with Palliative-Stage Cancer: Protocol for a User-Centered Design Study (Preprint)

BACKGROUND Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk for inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile applications (“apps”) to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed with families with cancer. OBJECTIVE The aim of this study is to develop an mHealth app prototype for coordinating flexible and trusted in-home respite care services, provided by nurses to families coping with palliative-stage cancer in Québec, Canada. METHODS This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments, and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proof-of-concepts for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof-of-concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. RESULTS We anticipate that preliminary results will be available by Spring 2022. CONCLUSIONS An app prototype will be developed that has enough complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services rendered to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be.

Self-Efficacy Mediates Acculturation and Respite Care Knowledge of Immigrant Caregivers

Past studies have shown that acculturation and self-efficacy can affect respite care knowledge, which are notable issues among immigrant caregivers due to the rapid increasing aging family members. The aim of this study was to investigate relationships among acculturation, self-efficacy, and respite care knowledge in immigrant caregivers, and to determine the mediating effects of self-efficacy on the relationship between acculturation and respite care knowledge. A cross-sectional design was used. We enrolled 134 female immigrant caregivers who had married Taiwanese men and lived with care recipients who used LTC services. Based on Baron and Kenny’ mediating analytic framework, multiple regression and Sobel tests were used to examine whether self-efficacy mediated the relationship between acculturation and respite care knowledge. The findings showed that after controlling for confounding factors, acculturation and self-efficacy separately affected respite care knowledge (B = 0.229, standard error (SE) = 0.084; B = 0.123, SE = 0.049, respectively). Acculturation had a positive impact on respite care knowledge through self-efficacy (B = 0.181, SE = 0.084). Therefore, self-efficacy partially mediated the effect of acculturation on respite care knowledge, and accounted for 20.9% of the total mediating effect in this study. Acculturation predicted immigrant caregiver’ respite care knowledge partially through self-efficacy. The association between acculturation and respite care knowledge was partially mediated by immigrant caregivers’ self-efficacy. As a result, it was proposed that boosting self-efficacy could increase and drive immigrant caregivers’ respite care knowledge. To assist this population in obtaining enough resources, targeted educational programs to promote immigrant caregivers’ self-efficacy should be designed and implemented. Furthermore, health care practitioners should be aware of the relevance of immigrant caregivers’ acculturation.

How do you build your care team?

No one person can manage the demands of dementia alone. Building a strong care team early following a diagnosis is critical to your wellbeing and to providing your loved one with the best care. By reaching out to family, friends, neighbors, and professional caregivers, you can limit your burden, reduce your feelings of isolation, and create a healthier environment for you and your loved one. Your loved one’s doctor should be a source of help as well. Support groups can provide you with information and important skills in addition to emotional support. Whether as a day program or overnight stay, respite care may be an invaluable resource for you. National organizations dedicated to Alzheimer’s disease and dementia can also be an invaluable resource.

Who are the beneficiaries and what are the reasons for non-utilization of care respite and support services? A cross-sectional study on family caregivers

Background Family caregivers assume substantial caregiving responsibilities for persons with chronic conditions, such as individuals with spinal cord injury, which leads to negative impacts on their lives. Respite care and other services are provided as a temporary relief and support for them. Design of appropriate respite care programs depends on identification of beneficiary subgroups for the different types of service. This study aimed to quantify the uptake of different respite and support services for family caregivers, the reasons for non-use, and to explore the respective predictors. Methods A cross-sectional survey of family caregivers of persons with spinal cord injury was conducted nationwide in Switzerland. The use of 11 different respite and support services during the previous 12 months was investigated, along with caregivers’ reasons for not using any respite. Classification trees were used to characterize the beneficiaries and reasons for not using respite. Results About a third of family caregivers used at least one type of respite or support service during the previous 12 months. Utilization of respite care was greater among those who employed professional home care (57% vs 24% of those without professional home care). Marked cantonal differences were also observed in utilization of respite care. The primary reason for not using respite services was “no demand” (80% of non-users of respite services), mainly among caregivers who were less emotionally affected by their caregiving tasks. Conclusions Utilization of respite and support services depends more on place of residence and use of home care services than on functional status of the care recipient. Accordingly, programs should be tailored to the cultural context of their potential users. This is best achieved through coordination with local health care professionals who can identify needs, provide information, initiate referrals, and integrate the care into a larger support plan.

Meeting the needs of autistic adults in Qatar: Stakeholder perspectives on gaps in services and priorities for future programming

Autism services in Qatar are expanding rapidly, but focus predominantly on young children. The shortage of qualified autism providers and minimal opportunities for autistic youth to participate in school, work, and community have led to a growing population of autistic youth transitioning to adulthood with substantial unmet needs for behavioral support and instruction in critical life skills. Our objective was to identify the needs and preferences for respite care for autistic adolescents and young adults in Qatar utilizing family and stakeholder input. Researchers from the United States collaborated with researchers and community leaders from Qatar to evaluate perspectives regarding respite care with families of autistic people ( n = 11) and providers/community stakeholders ( n = 20) through surveys and focus groups. Four main themes emerged including (1) a need for trust and reliability of individuals and of systems to support autistic adults, (2) prioritizing quality of life for autistic individuals and their families, (3) seeking meaningful inclusion, and (4) challenges stemming from service delivery systems. Families in Qatar endorsed clear interest in respite care services for young adults with autism, regardless of their child’s age. This study highlights the value of including both provider expertise and family concerns in developing new services for an under-served community. Lay abstract Qatar is expanding the services that it offers for autistic people, but these services focus mainly on diagnosing and treating young children. Because there are not enough autism providers in Qatar and few opportunities for autistic youth to participate in the community, more and more autistic teens and young adults have unmet needs during their transition to adulthood. The goal of this study was to conduct a needs assessment of transition-age autistic youth in Qatar and their families in order to inform the development of an adult respite care and support center. Respite care is a service that provides families with stress relief and time to participate in activities that are more difficult to do when their loved one with a disability is with them. The objective of this study was to use family and stakeholder input to identify the needs and preferences for respite care for autistic youth in Qatar. The project was conducted with a local research team in Qatar and a team of clinical researchers in the United States specializing in autism. Stakeholders, including parents of autistic people and providers working with individuals with autism, completed surveys and participated in focus groups. Families and providers in Qatar were very interested increasing services for young adults with autism to improve quality of life, although wanted to make sure the service providers would be reliable and trustworthy. Implications from this study may substantially improve the lives of autistic adults in Qatar.

Caregiver Burden and Associated Factors for the Respite Care Needs among the Family Caregivers of Community Dwelling Senior Citizens in Chiang Mai, Northern Thailand

Background: Families are the backbone of caregiving for older adults living in communities. This is a tradition common to Thailand and many low- and middle-income countries where formal long-term care services are not so available or accessible. Therefore, population aging demands more and more young people engaging as family caregivers. Informal caregiving can become an unexpected duty for anyone anytime. However, studies measuring the burden of informal caregivers are limited. We aimed to determine the caregiver burden, both from the perspective of the caregivers as well as that of their care recipients. Method: We used the baseline survey data from a cluster randomized controlled trial providing a community integrated intermediary care (CIIC) service for seniors in Chiang Mai, Thailand, TCTR20190412004. Study participants were 867 pairs of older adults and their primary family caregivers. Descriptive analysis explored the characteristics of the caregivers and binary logistic regression identified factors influencing the caregivers’ burden. Results: The mean age of family caregivers was 55.27 ± 13.7 years and 5.5% indicated the need for respite care with Caregiver Burden Inventory (CBI) scores ≥24. The highest burden was noted in the time-dependence burden domain (25.7%). The significant associated factors affecting CBI ≥24 were as follows: caregivers older than 60 years, being female, current smokers, having diabetes, and caring for seniors with probable depression and moderate to severe dependency. Conclusions: A quarter of caregivers can have their careers disturbed because of the time consumed with caregiving. Policies to assist families and interventions, such as respite service, care capacity building, official leave for caregiving, etc., may reduce the burden of families struggling with informal care chores. Furthermore, caregiver burden measurements can be applied as a screening tool to assess long-term care needs, complementing the dependency assessment. Finally, implementation research is required to determine the effectiveness of respite care services for older people in Thailand.