Benefits For Caregivers Research Articles

12418 Patient- And Caregiver-reported Experiences Of Hunger, Weight, And Energy In Acquired Hypothalamic Obesity Before And During Setmelanotide Treatment

Abstract Disclosure: C.L. Roth: Advisory Board Member; Self; Rhythm Pharmaceuticals, Inc. A.H. Shoemaker: Advisory Board Member; Self; Saniona, Rhythm Pharmaceuticals, Inc. Speaker; Self; Saniona, Rhythm Pharmaceuticals, Inc. C. Ervin: Other; Self; Rhythm Pharmaceuticals, Inc. L. Norcross: Other; Self; Rhythm Pharmaceuticals, Inc. S. Fehnel: Other; Self; Rhythm Pharmaceuticals, Inc. C. Huber: Employee; Self; Rhythm Pharmaceuticals, Inc.. Stock Owner; Self; Rhythm Pharmaceuticals, Inc. C. Scimia: Employee; Self; Rhythm Pharmaceuticals, Inc.. Stock Owner; Self; Rhythm Pharmaceuticals, Inc. M.J. Abuzzahab: Consulting Fee; Self; Rhythm Pharmaceuticals, Inc., Ascendis, Novo Nordisk, Lumos, Soleno, Pfizer, Inc.. Speaker; Self; Rhythm Pharmaceuticals, Inc., Ascendis, Novo Nordisk, Lumos, Soleno, Pfizer, Inc.. Background: Acquired hypothalamic obesity (HO) is a rapid-onset, severe obesity caused by hypothalamic injury that may impair melanocortin-4 receptor (MC4R) pathway signaling and lead to hyperphagia, decreased energy expenditure, and severe obesity, for which no approved therapies exist. We describe experiences or caregiver observations of hunger, weight, and energy in patients with HO before and after investigational treatment with the MC4R agonist setmelanotide. Methods: In-depth qualitative interviews were conducted via Zoom by 2 members of the study team with patients or caregivers of patients who completed a Phase 2 trial of setmelanotide (NCT04725240) and enrolled in the open-label long-term extension (NCT03651765). Eligible patients were aged ≥12 years and eligible caregivers were aged ≥18 years and full-time caregivers of patients aged <12 years or unable to self-report. Interview transcripts were analyzed using a thematic approach. Results: Five participants (3 patients, 2 caregivers) completed interviews. After hypothalamic damage (before setmelanotide), all participants described unrelenting hunger, drastically reduced energy or physical activity, and substantial weight gain negatively impacting self-esteem, emotions, and family dynamics. With setmelanotide, all participants reported reduced weight or body mass index, and 4 reported reduced hunger, which was accompanied by improved food-seeking behaviors, sleep (eg, not waking at night for food), self-confidence, and mood. Participants identified reduced hunger and weight and improved emotions or mood as the most important treatment benefits. Additional benefits were improved social engagement, physical activity, and school/work performance. All reported satisfaction and a desire to continue setmelanotide. Conclusions: Patients experienced negative consequences of hypothalamic damage on hunger, weight, and energy that were alleviated by setmelanotide, resulting in broad benefits for patients and caregivers. Presentation: 6/1/2024

Collaborative Dementia Care Has Long-Term Benefits for Patients and Caregivers.

According to this study.

Literacy Promotion: An Essential Component of Primary Care Pediatric Practice: Technical Report.

Early literacy promotion in pediatric primary care supports parents and caregivers reading with their children from birth, offering counseling in interactive, developmentally appropriate strategies and providing developmentally and culturally appropriate and appealing children's books. This technical report reviews the evidence that reading with young children supports language, cognitive, and social-emotional development. Promoting early literacy in pediatric primary care offers a strengths-based strategy to support families in creating positive childhood experiences, which strengthen early relational health. An increasing body of evidence, reviewed in this report, shows that clinic-based literacy promotion, provided with fidelity to an evidence-based model, has benefits for children, for parents and caregivers, and for pediatric physicians and advanced care providers as well. Reading with young children supports early brain development and the neural "reading network," and improves school readiness. High-quality literacy promotion is especially essential for children who face disparities and inequities because of social factors, systemic racism, and socioeconomic risk. All families benefit from high-quality and diverse books and from developmentally appropriate guidance supporting interactions around books and stories. Thus, literacy promotion can be a universal primary prevention strategy to strengthen families and support healthy development. Partnerships at community, local, and state levels offer opportunities for integration with other programs, services, and platforms. Literacy promotion in primary care pediatric practice, recognized by the AAP as an essential component since 2014, has become increasingly common. There are successful models for public funding at federal, state, county, and municipal levels, but sustainable funding, including payment to pediatric physicians and advanced care providers, remains a need so that the benefits of pediatric early literacy promotion and the joys of books and shared reading can truly be offered on a population level.

The mediating roles of caregiver needs and caregiver readiness in the relation between family resilience and benefit finding in family caregivers of patients with stroke in China

ABSTRACT Objectives The purpose of this study was to assess the effects of family resilience, caregiver needs, and caregiver readiness on benefit finding for family caregivers of patients with stroke and to examine the mediating role of caregiver needs and caregiver readiness between family resilience and benefit finding. Methods In this cross-sectional study, convenience sampling was designed and used to recruit participants from three general hospitals in Jinan, Shandong Province, China, from February to September 2022, in which 340 participants completed the General Information Questionnaire, Chinese version of the Family Resilience Assessment Scale (C-FRAS), Caregiver Needs Assessment Scale (CNAS) Chinese version of the Caregiver Preparedness Scale (C-CPS), and Caregiver Benefit Finding Scale (CBFS). Model 6 in process version 4.0 was used to test the chain mediation model between family resilience and benefit finding for caregiver needs and caregiver readiness. Results Correlation analysis showed that benefit finding in family caregivers was positively associated with family resilience and caregiver readiness and negatively associated with caregiver needs; mediation model tests showed that the total indirect effect of family resilience on benefit finding was 0.163, with the specific mediating effects of caregiver needs and caregiver readiness accounting for 33.74% and 59.51%, and the chain mediating effect of both accounting for 6.75%. Conclusions Family resilience not only directly influences benefit finding for family caregivers but also indirectly affects benefit finding through caregiver needs and caregiver readiness. Caregiver needs and caregiver readiness have a mediating role between family resilience and benefit finding in family caregivers.

Operational Mechanisms of Peer Support Groups and Support for Caregivers of People Living with Serious Mental Illness.

The challenges faced by caregivers of people living with serious mental illness in Canada are well documented in the literature including emotional distress, financial strain, social isolation, and concerns about their physical health following the impact of caregiving. Peer support programs (including peer support groups) emerged as a promising method to attempt to address these challenges. While there is evidence on the positive impacts of peer support groups in providing support for caregivers, the mechanisms by which peer support groups operate and influence support for caregivers of people living with serious mental illness are less understood. This qualitative study took on a co-designed participatory research approach. Fifteen adult caregivers of people living with serious mental illness across Canada were engaged through key informant interviews that lasted for 45-60min each. A thematic analysis was carried out to help understand the operational mechanisms of peer support groups in influencing support for caregivers. The key informant interviews allowed for the identification and description of the following operational mechanisms that influenced the support caregivers received from peer support groups: (1) Group dynamics; (2) Messaging/content; (3) Equity and inclusion, (4) Group philosophy; and (5) Privacy concerns. Findings from this study showed that caregivers identified a number of operational mechanisms of peer support groups that explained how they felt supported when they participated in peer support groups. Among other operational mechanisms, group dynamics in terms of the gathering of caregivers of different age brackets and varying caregiving experience negatively influenced the peer support experience of caregivers. This pointed to the need for group dynamics that consider close age ranges and similar caregiving experience during group meetings to enhance support for caregivers. Caregivers also identified a gap in equity and inclusion in peer support groups that could have otherwise enriched their experience and enhanced the support they looked to receive from the group. Practical examples to enhance equity and inclusion include promoting active listening, using inclusive language, encouraging diverse representation and asking for feedback from peer support group members. While peer support groups in Canada exist independently of one another, it may help to consolidate evidence-based recommendations in the operational mechanisms of these groups, for the benefit of caregivers who turn to these groups for support, having been left on their own by an otherwise fractured mental health system.

Do Interventions Meet the Needs of Caregivers of Cardiac Patients?: A Scoping Review.

Interventions targeting the needs of caregivers of cardiac patients are few, and in most cases, no effect is found on caregivers' well-being. A closer look at the existing interventions will provide a solid foundation for future efforts to develop effective interventions targeted at caregivers of cardiac patients. The study's objective was to scrutinize and discuss interventions targeting caregivers of cardiac patients and contribute to reflections that will improve future interventions. Systematic scoping of the literature within the field was conducted through a literature search in PubMed, EMBASE, CINAHL, PsycINFO, and Cochrane Library from January 2011 to May 2022. The development of search terms and inclusion criteria was inspired by the Patient problem/population, Intervention, Comparison/Control, and Outcome approach, and the Medical Research Council framework for developing and evaluating complex interventions served as the underlying basis for the analysis. Eleven articles were included. The interventions reported in the articles were generally not systematically developed and did not include field-specific, methodological, and theoretical reflections. Furthermore, the development process behind the studies seemed not to be transparent. Lack of systematic methodology and methodological transparency in the reviewed studies hinders further testing of interventions and might explain lack of evidence for effective interventions within the field. More systematic, needs-based, and well-documented interventions targeting caregivers of various kinds of cardiac patients are needed to develop the field to the benefit of caregivers, patients, and society.

Benefits Perceived by Caregivers of Patients with Alzheimer's Disease on Physical and Emotional Health in an Interdisciplinary Program: A Qualitative Study.

Alzheimer's disease is the most common type of dementia, severely affecting the families and caregivers who live with those affected. The aim was to explore the physical, psychological, and behavioral benefits for caregivers of people with Alzheimer's disease. Fifteen semi-structured interviews were conducted with informal Alzheimer's caregivers upon completion of the program. Following a discussion on the topics, categories, and codes among the researchers, a consensus was reached to obtain the final themes and categories. Three main categories were obtained: (1) perceived benefits by the participants; (2) applicability of the knowledge; and (3) proposals for improvement. Participants expressed having perceived improvements in their ability to manage emotions and cope with the situation created by the disease, physical capacity, and in their relationships. In this sense, the application of the contents addressed during the intervention became a fundamental tool for the participants' daily lives. This study showed how an interdisciplinary intervention with psychological sessions, health education, and physical activities could be beneficial for improving both the physical and mental health of caregivers.

Personalized interactive multimedia systems to support meaningful activities in dementia care: A systematic review To be published in: Archives of Gerontology and Geriatrics

Background and ObjectivesInteractive multimedia systems are widely used to enhance participation in meaningful activities for older people living with dementia. This review aims to analyze and synthesize current evidence regarding personalization of these systems, by considering the type of content included, the selection process and the experience of people living with dementia when interacting with the content. Materials and MethodsIn accordance with PRISMA guidelines (PROSPERO registration number blinded for review), a systematic search was undertaken across 4 databases. Meta-aggregation pooled data for synthesis. ResultsA total of 520 articles were identified from searches in four databases, and 15 were included in this review. Two classes of content were identified: personal, often autobiographical; and curated, carefully chosen generic content appropriate for a wider group of people in the demographic. Variety of content can act as a trigger for autobiographical memories. Personalized music enhanced a desire to engage and prompted meaningful interactions among participants. Discussion and ImplicationsDespite some differences in the selected studies, the findings enabled us outline key points to consider when personalizing interactive multimedia systems for people living with dementia. Further research should focus on studying the social condition of the target users during the personalization process and on the benefits for caregivers.

The Farsi version of Caregiver Preparedness Scale in Iranian family caregivers of the older adults undergoing hemodialysis: a psychometric study

BackgroundEnhancing preparedness of family caregivers and support for caregiving is essential for the mutual benefit of both caregivers and the well-being of those under their care. This study aimed to translate and evaluate psychometric properties of the Caregiver Preparedness Scale among family caregivers of older adults undergoing hemodialysis.MethodsIn this methodological study, 400 family caregivers of older adult patients undergoing hemodialysis enrolled to the study via convenience sampling method. The study was conducted in two stages: translation and psychometric evaluation. At first, the translation of the scale was done using Beaton et al. method. In the psychometric evaluation stage, quantitative face validity, content validity, item analysis and construct validity of the scale were evaluated. The internal consistency of the scale was assessed through the calculation of Cronbach’s alpha, McDonald’s omega, and average inter-item correlation coefficients.ResultsAll items had an impact score greater than 1.5. The content validity ratio and the kappa coefficient for all items were above 0.75. In the item analysis, item 2, which had a correlation with the total score of less than 0.3, was removed. Following exploratory factor analysis, only one factor composed of all items (7 items) was extracted, explaining 75.7% of the total variance. This model had acceptable fit indices in confirmatory factor analysis. Cronbach’s alpha and omega of 0.95 and an average inter-item correlation of 0.75 were obtained.ConclusionsThe study results demonstrated that the Caregiver Preparedness Scale exhibits appropriate psychometric properties. Geriatric nurses can utilize this Scale for assessment of caregivers. This assessment can aid in decision-making regarding educational programs aimed at enhancing family caregiver preparedness.

Sleep quality differences among caregivers for persons living with and without dementia

Objectives This study examined the relationship between caring for a person with/without dementia and caregiver sleep quality, and analyzed the extent to which perceived benefits of caregiving and assessments of caregiver-recipient relationship quality explain the relationship between care recipient dementia status and caregiver sleep quality. Method Data were analyzed from caregivers for persons with no or probable dementia who participated in the 2017 National Study of Caregiving (NSOC) and National Health and Aging Trends Study. Caregiver sleep quality was measured using NSOC time diary interview. Perceptions of caregiving and relationship quality were assessed using 4-item surveys. We used multivariable logistic regressions to examine the association between care recipient dementia status and caregiver sleep quality controlling for covariates. Results The sample consisted of 1,374 caregivers (mean age = 62.3, SD = 14, 68.3% women, 69.4% non-Hispanic White). In multivariable models adjusting for caregiver and care recipient characteristics, being a caregiver for someone with dementia was associated with 23% lower odds of reporting “excellent/very good” sleep quality (OR: 0.77, 95%CI: 0.61-0.98, p = 0.032). Greater perception of caregiving benefits was associated with 8% greater odds of “excellent/very good” sleep quality (AOR: 1.08, 95%CI: 1.02-1.15, p = 0.013), but did not explain the relationship between dementia and caregiver sleep quality. Positive ratings of relationship quality explained the relationship between care recipient dementia status and caregiver sleep quality (AOR: 0.82, 95%CI: 0.65-1.05, p = 0.12). Conclusion Improving assessments of relationship quality and amplifying perceptions of caregiving benefits may reduce disparities in sleep quality between caregivers of persons living with or without dementia.

Medical Costs and Caregiver Burden of Delivering Disease-Modifying Alzheimer’s Treatments with Different Duration and Route of Administration

BackgroundMultiple disease modifying treatment for Alzheimer’s disease are currently in clinical development or have been recently approved for use. They have vastly different treatment properties but so far, little work has been done to quantify the impact of treatment properties on the treatment’s value in terms of medical and social care costs and caregiver burden.ObjectivesThis study aims to analyze how the mode of treatment administration, treatment frequency and duration, and monitoring requirements affect the value of disease modifying treatments. In order to isolate these effects, we compare five hypothetical disease modifying treatments with equal efficacy and safety: (1) chronic bi-weekly intravenous infusion, (2) chronic four-weekly intravenous infusion, (3) 52 weeks fixed duration four-weekly intravenous infusion, (4) chronic subcutaneous injections, and (5) chronic oral prescription on their direct medical costs, caregiver burden, and preservation of treatment value.DesignSurvey of Alzheimer’s disease treatment clinics and retrospective data analysis.SettingUnited States.MeasurementsDirect medical cost and caregiver burden of treatment administration and monitoring compared to gross treatment benefit.ResultsChronic bi-weekly infusion treatment had the highest direct medical cost ($45,208) and caregiver burden ($6,095), reducing the treatment value by 44%, while oral treatment with the lowest direct medical cost ($1,983) and caregiver burden ($457) reduced the treatment value by only 2%. Substantial caregiver burden was reported from the survey, with a reported average of 2.3 hours for an office visit and infusion, 44 minutes of round-trip travel time, and 78% of patients being accompanied by a caregiver for treatment.ConclusionBurden of chronic intravenous treatments exceed the gross medical and social care cost savings and value of caregiver benefit. The results suggest the need for less complex treatments that require fewer clinic visits to preserve the economic value of disease modifying treatments.

Development of a Community-Based Communication Intervention among Latin Caregivers of Patients Coping with Cancer.

Background: Cancer affects the emotional well-being of patients and caregivers, highlighting the need for effective communication strategies. This study explores a community-based communication intervention for Latino caregiver-patient dyads coping with cancer. The acceptability of the intervention, along with its associated facilitators and barriers, are crucial considerations. Methods: Three focus group interviews involved healthcare providers, community partners, patients, and caregivers to discuss the communication needs of this population and the components of a communication intervention while identifying facilitators and barriers to the intervention. Qualitative thematic content analysis was conducted using Nvivo v12, ensuring reliability through independent analysis and consensus building. Results: Participants (89% female, average age of 53) included patients (30%), caregivers (30%), community partners (25%), and healthcare providers (15%), and they discussed the overall acceptability of adapting a communication intervention, where they emphasized benefits for caregivers and patients, primarily through support groups. Communication strategies accepted by participants include psychological support, cancer education, assertive communication skills, and methods for improved interactions with healthcare providers and extended family. Conclusions: Participants' responses align with the current literature, emphasizing problem-solving, mutual support, and communication strategies and underscoring the role of community partners. The study underlines the necessity for culturally tailored communication interventions for Latino families facing cancer.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Family Caregivers.

Family and friend caregivers play critical roles in ensuring that persons with serious illness receive high-quality care, and their responsibilities often increase as patients transition from receiving solely curative-focused care to primarily palliative-focused care. Integrating family caregivers into the health care team and supporting them in their role has significant benefits for family caregivers, patients, health care systems, communities, and society. Palliative care clinicians across all disciplines are uniquely suited to provide necessary training and support to family caregivers as they navigate the demands of their role. Here, we contend that providing comprehensive palliative care includes addressing the needs of family caregivers and provide ten tips and practical guidance to assist palliative care clinicians to support family caregivers. Engaging family caregivers as partners in care will ultimately allow palliative care clinicians to deliver the highest quality patient care and ensure the best possible outcomes for families facing serious illnesses.

Integrated care for people and families living with Parkinson's, Huntington's and Multiple Sclerosis: A systematic review

People living with long term neurological conditions have complex needs that demand coordination of care across different health and social care sectors, however there is uncertainty in how to deliver integrated care and its impact on people.
 Our research is focused on patients and caregivers living with long term neurological conditions, specifically with Parkinson’s disease (PD), Multiple Sclerosis (MS) and Huntington’s Disease (HD).
 We developed the review questions and interpreted the results of the review with a patient and public involvement group composed of people with lived experience of long term conditions. The group identified three important problems with their care: fragmentation (services are not joined-up missing important needs), duplication (repetition of assessments) and lack of continuity (changes in staff and difficulty in knowing who to contact). These areas prompted us to identify the key characteristics of successful integrated care programmes in the literature and which benefits were brought to people.
 We undertook a systematic review of the literature searching CINAHL, Cochrane, Embase, PsycINFO, Medline, Web of Science and Google Scholar of all published studies (from Jan 1, 2000 to Sep 30, 2021) testing multisectoral integrated care interventions in people living with PD, MS and HD. Articles published in English, Portuguese, Spanish and German were considered. We supplemented this with snowballing technique, hand and grey literature searches. Evidence was graded for strength (or certainty) for each outcome measure.
 Our review identified 15 papers across 5 countries and a total of 2095 patients and caregivers were included. Analysis indicated that multisectoral integrated care programmes can improve people’s access to resources and patients’ mood (by reducing depression). UK studies indicated improvements in patients’ quality of life, although the international literature was inconclusive. To date, few programmes considered benefits for caregivers; studies that did, reported no differences or even a decline on caregivers’ outcomes. Evidence identified was inconsistent or limited regarding all other outcomes reported. Overall, the literature has a limited consideration of effects on people living with PD and MS, namely, needs being met and continuity of care; to date, no empirical research has focussed on people living with HD. Successful programmes for people with PD and MS were characterised by four facilitating factors:
 • Expert knowledge
 • Multi-sectoral care coordination
 • Care continuity
 • Person-centred approach
 Hindering factors were related to logistics for care delivery, such as issues with data access and care transition between different providers.
 To date, limited evidence exists to support the benefits of multisectoral integrate care programmes from the perspective of patients and caregivers. By focusing on metrics that do not reflect people’s experiences and how well people’s needs are being met, the true impact of these programmes is lost, and with it, the opportunity to advise policies for best service delivery in practice.
 Future studies should investigate integrated care from the perspective of patients and caregivers, to measure impact at user-level. This is relevant across all conditions. Furthermore, more research is needed in vulnerable groups and people living with rare complex conditions such as HD.

OUTCOMES OF THE ADULT DAY SERVICE PLUS (ADS PLUS) PROGRAM: A HYBRID TYPE I MULTISITE TRIAL DESIGN

Abstract This paper presents the main outcomes of a cluster randomized hybrid trial (type I) involving 34 adult day services (ADS) in the US. Eighteen sites were randomized to control (ADS as usual); 16 sites provided ADS and caregiver support (ADS Plus). Trained staff met with caregivers onsite to provide dementia education, support/validation, referrals/linkages, and strategies for care challenges and self-care over 12-months. Main outcomes included depressive symptoms (CES-D) and well-being at 6-and 12-months, and attendance of clients (people living with dementia) over 12-months. Of 203 caregivers (Intervention=102; Control=101), 5.9% at 3-months, 12.8% at 6-months, and 22.7% at 12-months were lost-to-follow-up. Caregivers were predominantly female (80.3%), with 76.4% identifying as white/Caucasian, 14.8% Black/African American, and 12.3% Hispanic/Latino. Most (88.2%) had >college education and were 65.0 years old (SD=13.46). For those with 6-month data, 40.4% control and 40.2% ADS Plus caregivers had depressed symptoms (>16 CES-D) at baseline. By 6-months, 43.6% control versus 34.2% ADS Plus caregivers had >16 scores (odds ratio=0.38, p=0.072). By 12-months, after covariate adjustments, ADS Plus caregivers reported reduced total depression scores versus controls (p=0.013) and lower depressed affect scores (p=0.015). Of 18 sites providing 12-month client attendance data, nine intervention sites reported 126.05 days attended versus 78.49 days for nine control sites (p=0.079). Compared to ADS alone, by 12-months ADS Plus improved caregiver mood and increased ADS utilization by 60.6%. Results support ADS staff delivering evidence-based caregiver support to enhance benefits for clients, caregivers and ADS.

INDIVIDUAL AND COUNTY-LEVEL FACTORS OF SERVICE USE BY DEMENTIA FAMILY CAREGIVERS IN RURAL APPALACHIA

Abstract Formal services have been shown to provide health benefits for care recipients and family caregivers. Despite prior efforts, it is still unclear which factors play a role in the decisions to use formal services by family caregivers living in under-resourced rural regions. Drawing upon the Andersen model of health service use, this study examined individual and county-level factors’ associations with the utilization of support services (e.g., homemaker, respite) and personal services (e.g., home health nurse, personal care aide) by dementia family caregivers residing in rural Appalachia (N = 163). Results of multilevel models revealed that caregivers with higher income and care recipients with more limitations in activities of daily living tended to use more support and personal services. Greater informal support from family or friends was associated with less utilization of support services, but not personal services. Caregivers residing in counties with higher poverty and lower public spending on support services for older adults were more likely to use support services. Conversely, caregivers living in counties with more home health agencies were more likely to utilize personal services. These findings suggest that caregivers living in rural regions may depend more on informal support for meeting basic care needs of their relative living with dementia. However, if the care recipient requires more specialized care, living in resource-rich counties increases their chances of receiving appropriate care. Discussion will focus on strategies to allocate funds and resources to expand care coverage to vulnerable individuals such as people living with dementia in rural regions.

EMBEDDING EVIDENCE-BASED CAREGIVER SUPPORT IN COMMUNITY-BASED PROGRAMS: THE ADS PLUS PROGRAM

Abstract Adult Day Services (ADS) are a community-based option in long-term care, providing a safe, interactive, and managed environment for people with dementia (PWD). ADS also serve racially/ethnically diverse communities, provide respite for family caregivers and help people age-in-place. Nevertheless, research reveals inconsistent benefits of ADS for caregivers of clients and ADS do not typically offer evidence-based caregiver programs as part of routine care. This symposium reports on the results of a novel NIA funded multi-site Hybrid Type I trial with pragmatic elements which evaluated the effectiveness of embedding a caregiver support program, ADS Plus, in ADS and delivered by staff. ADS Plus, provides caregivers with dementia education, stress reduction techniques, validation/support, referrals and linkages, and strategies to address caregiver-identified challenges over 12-months. Reported are the quantitative and cost outcomes, implementation processes, and challenges and lessons learned. Dr. Gitlin will present the main quantitative study outcomes of this multi-site trial involving 34 sites nationally and 234 caregivers, which demonstrated benefits for caregivers and ADS. Next, Dr. Marx will examine implementation findings including session completion and content. Dr. Gaugler will present findings from the qualitative arm examining perceived benefits of ADS Plus by staff and participants. Ms. Prioli will then examine cost savings associated with ADS Plus whereas Dr. Parker will address barriers when partnering with home and community-based services including developing and maintaining partnerships, institutional review board hurdles and staff readiness. To conclude, our discussant, Dr. Kenneth Hepburn, will offer perspectives on moving evidence-based programs into community-based settings such as ADS. This is a Behavioral Interventions for Older Adults Interest Group Sponsored Symposium.

Homebound Older Adult, Caregiver, and Provider Perspectives on the Benefits of Home-Based Primary Care: A Narrative Review.

Home-based primary care (HBPC) is a clinical practice that is being increasingly utilized for the homebound older adult population. As the age demographics in the United States shift over time, these programs will need to be expanded to accommodate the growing aging population. This narrative review aims to compile studies on the benefits of HBPC from the perspective of homebound older adult patients, caregivers, and the health care providers who practice HBPC. Studies were identified through PubMed, Web of Science, and Google Scholar, and a total of 10 papers were included in this review. Identified benefits of HBPC for homebound older adult patients included improved relationships, peace of mind, goal attainment, improved access to care, and avoidance of hospitalization. Benefits for caregivers included providing emotional support, informational support, and easing logistical challenges. Benefits for providers included improved patient care by addressing social determinants of health, improved rapport with patients, and improved provider wellness and attitude. The main limitation of this review is the lack of adequate research on this topic, specifically from the perspective of providers other than resident physicians and nurse practitioners such as nurses and community health workers. As the U.S. population of older adults continues to grow over the coming decades, the need for more home-based medicine should not be seen as a burden but rather as an opportunity to transform and humanize the way medicine is practiced.

State Supplemental Benefits for Informal Kinship Caregivers: A Comparative Policy Analysis

Kinship caregivers raise relative children who are unable to be cared for by their parents. Most kinship caregiving takes place outside the child welfare system (“informal” care), meaning that caregivers do not have access to foster care payments to offset the costs of child rearing. The main source of financial support for informal kinship caregivers is Child-Only TANF, which is inadequate to meet the full range of caregiver needs. To address this funding gap, the authors present a comparative policy analysis of seven programs in six states that have implemented supplemental state funds for informal kinship caregivers. The authors analyze key features of each program and compare the socioeconomic and political characteristics of states that offer supplemental caregiver benefits to those of states that do not. Recommendations for policy and practice are discussed.

Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience

BackgroundSickle cell disease (SCD) is an inherited chronic life-threatening disorder with increasing prevalence in Europe. People living with SCD in Europe mainly belong to vulnerable minorities, have a lower level of health education and suffer from isolation compared to those living with other chronic conditions. As a result, SCD patients are much less likely to partner in the design of research related to their condition and are limited in their ability to influence the research agenda. Aiming to increase the influence of patient voice in the development of SCD-related research, we set out to develop patient centered actions in the frame of International Scientific Conferences in collaboration with the ERN-EuroBloodNet, Oxford Blood Group, Annual Sickle Cell Disease and Thalassaemia Conference (ASCAT), the European Hematology Association and the British Society of Hematology.ResultsTwo events were organized: a one-day research prioritization workshop and a series of education sessions based on topics chosen by SCD patients and their families. Methodology and outcomes were analyzed in terms of influence on scientific, medical and patient communities.ConclusionThe ERN-EuroBloodNet workshops with patients at annual ASCAT conferences have provided an opportunity to enhance patient experience and empowerment in SCD in Europe, producing benefits for patients, caregivers, patient associations and health professionals. Future work should focus on delivering the research questions identified at this workshop and the opportunities to share information for patient education.