Care Partners Research Articles

Restructuring Healthcare Financing to Enable Effective Integrated Care and Population Health

Singapore faces an aging population and spiraling healthcare costs. To address these challenges, Healthier SG will launch in 2023 to shift towards a population health approach to care for Singaporeans, to keep them healthy, and prevent or slow down disease progression. Residents will be encouraged to enrol with a primary care physician and take on an upstream preventive approach to healthcare. Delivery systems must focus on integrated care. In addition, there is a need to bend the rate of growth of cost curve. NHG, as one of the three public healthcare clusters, will take on the role of a “Population Health Manager” responsible for the health outcomes of 1.5M population assigned.
 Who is it for? Policy makers, health sector decision makers, health managers, health authorities, health and social care professionals, researchers, academia, health experts, and the staff working on implementation of integrated care, healthcare finance professionals
 Who did you involve and engage with? Singapore Ministry of Health officials, Chief financial officers of hospitals, healthcare professionals, and clinicians (both specialist and primary care physicians) and community care partners.
 What did you do? NHG restructured itself organisationally to form an Accountable Care Organisation (ACO). The Health Ministry would be providing funding for subsidised care in the form of capitation funding per assigned resident per year (as opposed to the predominant fee for service funding currently) and additional funding for preventive care and health screening. NHG will aggregate the funds to design payment models that cut across different care setting to integrate care delivery. Incentive payments tied to performance outcomes and indicators will be established. Providers will also part-take in shared savings. NHG will also serve as a network of providers to join up care delivery, with focus on primary and preventive care.
 What results did you get? What impact did you have?We are in the stages of planning and design. The results we hope to achieve are for residents to enrol with a single primary care provider who will be partnering NHG to oversee the end to end care of the enrolled residents. Some of the indicators to be monitored measure resource allocation, resident enrolment rate, primary care physician enrolment rate with NHG, avoidable ED and hospitalisation rates and total subsidised healthcare cost per resident.
 What is the learning for the international audience? The learnings to share are the importance of engagement of leadership across the ecosystems, appropriate funding and resource allocation based on care needs of the population, setting up of enablers, including IT and data exchange, use of incentives to prompt behaviour changes, and the need for change management to get buy-in.
 What are the next steps? NHG will be rolling out key activities in the areas of primary care enrolment, designing the financing framework for payment and sharing of incentives with the providers, and is also in the midst of implementing key IT system enablers.

Integrated transmural care pathway for stroke patients after discharge from the hospital: the growth towards a total concept in cooperation with primary care partners in southwest-Flanders

Every year, nearly 27,000 Belgians suffer a stroke. After discharge from the hospital there is follow-up. In this best practice, we want to discuss the initiatives that AZ Groeninge has taken over the years to achieve an integrated transmural care pathway for stroke patients after discharge from the hospital in collaboration with primary care, regional GP-associations and home care organizations. 
 Transmural care pathway for stroke care: Prof. Dr. Peter Vanacker, neurologist AZ Groeninge, took the initiative in 2017 to roll out the transmural clinical care pathway for stroke in the south West-Flanders region together with GP-associations and neurologists from various hospitals. Other primary care partners were also involved such as the Pharmacists Association and home care organizations. 
 Through uniform cooperation of health care providers and coordinated follow-up to support stroke patients, they succeeded in offering better care to stroke patients after discharge.
 Guidelines were developed for GP's, home care nurses and pharmacists. To ensure continuity of care and enhance patient empowerment, a diary was also given to the patient to record key parameters and issues.
 In 2020, the care pathway was expanded with the Chronic Care Project "De Brug". 
 The following additional items were added:
 - commitment to communication between the care providers of the stroke team
 - commitment to the conversation ""good use of medicines"" after stroke
 - focus on clarifying questions
 - commitment to lifestyle through health vouchers that encouraged stroke patients to make lifestyle changes.
 Strokecoach: In AZ Groeninge, the transmural care pathway was supplemented with a specific coaching program for stroke patients.
 The strokecoach is responsible for a personal follow-up of stroke patients to promote therapy compliance, disease insight, reduction of their cardiovascular risk profile. The coaching process runs between 6 and 24 months depending on patient preference.
 Jobcontent of our strokecoach is to:
 - play an intermediary role between GP's, home care services and the hospital.
 - be point of contact for stroke care in the region.
 - do more intensive screening for early and late complications and compliance. Thus, complications are captured more quickly. Together with the primary care team, the strokecoach will motivate the patient to achieve health goals and prevent for stroke recurrence.
 Stroke2Gether: Electronic stroke recovery pathway.AZ Groeninge is also participating in the EFRO project "Stroke2Gether". This is a digital recovery pathway for stroke patients after discharge by a smartphoneapp. Medical en therapy follow-up and health prevention are built in, through monitoring, education and coaching, live and remote. In addition, there is also a rights recognition module so that patients are also guided more proactively in the administrative and financial aspects and care support in collaboration with the social services of the insurance companies.
 Decision: AZ Groeninge has already completed a long journey in cooperation with its primary care partners to arrive at an integrated care pathway for stroke patients.
 In the following years, the main focus will be on the evaluation and adjustment of the developed instruments and the cooperation to further optimize the aftercare for this patient group.

The Big Scran: building community resilience through a volunteer movement in partnership with homelessness charity, Blue Triangle, and the Health and Social Care Partnership. 

Ben View Community Resource Centre has been a leading community anchor organisation within the Greater Glasgow and Clyde Health Board Area for two decades, diligently uniting the community by co-designing and building volunteering movements to meet community needs in West Dunbartonshire, Scotland.
 In partnership with homelessness charity, Blue Triangle, and the West Dunbartonshire Health and Social Care Partnership, a new volunteering movement, entitled ‘The Big Scran’, has been created to provide essential practical support, food, heat and social interaction. In tandem, the partnership has addressed wider needs, effecting generational change for individuals and families, such as maximising income or supporting delivery of health outcomes.
 Ben View’s expertise in anticipating local needs and galvanising community resources positions them as expert. Against the backdrop of the global financial crisis and complex public health challenges facing the community, such as gender-based violence, substance misuse, youth homelessness and other population health themes, the partnership, including Blue Triangle and West Dunbartonshire HSCP are a force for good. Their approach addresses immediate needs (hunger, heat and social interaction) and affects generational change, taking a person-centred and trauma informed approach, building individual relationships, leveraging the skills, talents and local knowledge of volunteers, supporting translation of needs assessment into meaningful interventions.
 Against all the Social Determinants of Health, West Dunbartonshire fairs poorly internationally. The burden of depression, anxiety, mental illness, substance misuse, alcohol dependency, smoking and interpersonal violence are key drivers contributing to our burden of disease, more so in West Dunbartonshire. The impact of social isolation and loneliness on individual’s physical and mental wellbeing has been well documented. It increases the risk of stress, anxiety and depression and doubles the risk of dementia. 
 The Health and Social Care Partnership understands that the status quo is no longer an option and that building a resilient and compassionate community of people, is essential to tackle the complex social justice challenges facing the population. The thought leadership from this initiative builds the compassionate community by creating and co-producing a new volunteering movement, in partnership with service delivery organisations and the Health and Social Care Partnership, which carries the statutory duty for health and social care.
 The relational approach to health improvement by creating a volunteering movement of local people, supported by known and respected local organisations, builds the community resilience required during the harsh global financial crisis. The success of this initiative has been such that other communities are now launching their own ‘Big Scran’.
 ‘The Big Scran’s’ processes and assets have been created to be transferable and scalable to all communities. Other communities across Scotland are using this model and their assets and to build similar partnerships and volunteer movements in their own areas. This fits with the policy landscape in Scotland and beyond and its desire to create and connect compassionate volunteering movements across Scotland and globe. The success and impact of the Big Scran movement is informed and sustained by people’s needs. All involved, recipients and volunteers positively gain from this replicable model.

System Wide Governance and Leadership: A New Governance Model to Rethink How Performance is Measured; How Integrated Services are Contracted, Funded and Co-ordinated and How Outcomes and Benefits are Assessed

This workshop shares learning from the work of Midlothian Health and Social Care Partnership to develop a strategic governance and performance framework that supports person centred practice and assesses impact on outcomes for people.
 It is widely recognised that for person centred approaches to be sustained, they need to go beyond practice and be embedded within the culture, systems and processes of health and social care organisations. This poses a challenge for traditional approaches to performance management, which tend to hold services accountable for delivering on easily measurable service outputs, rather than working in the flexible and outcome focused ways required to be person centred. In this workshop we share learning from work carried out by Midlothian Health and Social Care Partnership to align strategic governance and performance systems with their commitment to person centred practice and provide space for workshop participants to explore how they could put learning into practice.
 Midlothian HSCP are responsible for delivering and commissioning integrated services and supports to a local population of about 93,000 people in Scotland. The partnership has been strongly committed to embedding person centred practice for many years and have established the ‘MidWay’ approach to having ‘Good Conversations’ and building relationships with people, where services facilitate change, rather than aim to fix it.
 The partnership recognised that their strategic governance and performance approach was not aligned with this focus on person centred practice and outcomes for people. In 2020 they commissioned Matter of Focus to work with them to develop an outcome focused performance framework underpinned by the Matter of Focus approach and software OutNav. Over the past 2.5 years the framework has been tested and refined by diverse services and teams and is now being rolled out across the partnership. 
 The Matter of Focus approach is informed by contribution analysis and evidence to action approaches and enables organisations delivering complex change that is people based to evidence contribution to desired outcomes, rather than attribution. The approach and software is being used by more than 150 organisations internationally.
 
 The workshop will be of interest to managers, leaders, researchers and policy makers looking to embed person centred practice at scale and to improve governance and performance management approaches.
 The interactive workshop will involve: 5 minutes welcome and introductions; 10 minutes table discussion; 10 minute presentation on the Matter of Focus approach; 15 minute presentation on the framework and lessons learnt from Midlothian HSCP; 10 minute table discussions; 10 minutes feedback from tables, summary of take home messages and close. 
 The audience will be engaged through focused discussion questions at the tables. Take home messages will be captured from each table by the presenters in the final feedback session.

Shaping the future of Heart Failure Care

Heart failure (HF) hospitalisations are commonly associated with increased mortality and morbidity. The multi-disciplinary HF workgroup was formed in 2016 comprising Cardiologists, HF Case Managers, Advanced Practice Nurses, Cardiac Pharmacists, Allied Health Professionals and Operations personnel. The group focuses on delivering an end-to-end HF care, that aims to improve clinical and functional outcomes, while keeping cost affordable to patients. Our early initiatives were targeted at the inpatient phase; with current shift towards patient-centred and value-driven care, it presents an opportunity to delve deeper into patients’ journey.
 Our HF workgroup aims to implement a series of initiatives targeting pre-admission (HF - Extended Diagnostic and Treatment Unit (EDTU)) and post-discharge phases (HF Shared Care (HFSC) and Medical Home (MH)) of the patient’s journey, supporting their health needs in the community, thus reducing avoidable hospital readmissions.
 Foremost, the team mapped out the patients’ journey and adopted a multi-pronged approach to i) manage mild HF patients presented to Emergency Department (ED) under HF-EDTU protocol and support ii) stable HF patients with co-morbidities (HFSC programme) and mild-to-moderately decompensated HF patients (MH programme) in the community. 
 Under HF-EDTU protocol (commenced Mar’ 22), brainstorming sessions were conducted with ED to determine the inclusion criteria to ensure safe discharge from ED. For HFSC programme (commenced Jul’ 22), we engaged Shared Care Partnership Office (SCPO) to partner General Practitioners (GPs) to co-manage stable HF patients with co-morbidities in the community. GP focus group discussions were held to gather inputs for effective implementation of HFSC programme. We also worked with Population Health and Community Transformation (PHCT) team to identify patients with haemodynamically stable medical conditions for MH programme (commenced Jun’ 22) to reduce unnecessary hospitalisation. Regular meetings were conducted to monitor and evaluate the progress of our initiatives.
 Collectively, these initiatives contributed to a decrease in 30D readmission rate from 8.4% to 6.8% (≈19% relative reduction) and a decrease in total bill size from $4,847 to $4,802, when comparing across the pre (Apr 2021 – Mar 2022) and post-implementation of initiatives (Apr 2022 onwards).
 To date, of the 11 HF-EDTU patients, 5 were discharged from EDTU, avoiding inpatient admission. This resulted in estimated cost savings of $7,595. Separately, 5 patients were enrolled into HFSC programme.
 
 By adopting a strong value-driven methodology, we were able to assess and identify gaps in existing processes to create more value for our patients. Despite the short period of implementation, the drop in 30D readmission rate is testament to better and safer quality of care received by our patients. By working closely with private primary care providers, patients are able to embark on a lifelong relationship with their GPs to manage different aspects of their health (including preventive care). This is crucial as we tackle the wave of an ageing population and the rising impact of multiple chronic diseases.
 With the current promising results, continuous Plan-Do-Study-Act cycles will refine and improve the uptake of our initiatives. Lastly, measurement of patient experience outcomes are underway to truly understand what matters to patients in their care journey.

The Experiences of Older Adults with Dementia of “Balance Wise”—An Individual or Group-Delivered Exercise Programme: A Qualitative Study

This study aimed to understand the experience of older adults with dementia towards, and the practicality of, the Balance Wise exercise programme. A qualitative study guided by the General Inductive Approach was employed. Ten people with dementia aged 71–87 years who completed the exercise programme and four care partners aged 69–76 years old (three of whom also participated in Balance Wise) were interviewed in dyads. The programme (individually or group delivered) was held once a week for 30 min for 10 weeks and included balance and strength exercises, cognitive training, and other enjoyable physical activities. Interviews were thematically analysed. Three overarching themes were identified (i) decision making, (ii) comprehension, and (iii) perceived benefits. Participants acknowledged their decision to participate was influenced by ‘awareness’ about their declining memory and their ‘health belief’ about the potential benefits of exercise. ‘Perceived benefits’ were influenced by the ‘support system’ and improvement in postural stability. ‘Comprehension’ was, however, an important cognitive ability to understand the purpose of the activities in the programme and facilitated motivation. This study highlighted an important message that such programmes should be developed from the end-user perspective, and this included that the programme be flexible and safely delivered, as well as be fun and pleasurable, thus promoting socialisation.

Evaluating the Dyadic Benefits of Early-Phase Behavioral Interventions: An Exemplar Using Data From Couples Living With Parkinson's Disease.

There are a growing number of early-phase (i.e., Stage I, NIH Stage Model) interventions targeted at family care dyads navigating chronic health conditions in older adults. Currently, the benefits of these interventions are often evaluated for older adults and their family care partners separately, even when controlling for interdependence. Without understanding the benefits (and potential harms) for dyads as a whole, understanding of program impact is incomplete. Moreover, few health behavior interventions involving dyads include relational measures to ensure no unintended consequences for the dyad or account for within-dyad pretest risk level. We used secondary data from a quasi-experimental trial involving 39 couples in which 1 member of the dyad was living with Parkinson's disease as an exemplar demonstration of 3 proposed approaches: an above-zero approach, a pretest risk status approach, and an expanded pattern analysis matrix approach. Approaches provided evidence for dyadic benefits of the intervention compared to the wait-list comparison condition, but carried different assumptions that did not always categorize dyads similarly. Implications of using each approach and selecting different benchmarks for defining success are discussed. The descriptive approaches proposed, provide a rationale for more intentional evaluation of small-sample, early-phase dyadic interventions.

Design of a Dyadic Digital Health Module for Chronic Disease Shared Care: Development Study.

The COVID-19 pandemic forced the spread of digital health tools to address limited clinical resources for chronic health management. It also illuminated a population of older patients requiring an informal caregiver (IC) to access this care due to accessibility, technological literacy, or English proficiency concerns. For patients with heart failure (HF), this rapid transition exacerbated the demand on ICs and pushed Canadians toward a dyadic care model where patients and ICs comanage care. Our previous work identified an opportunity to improve this dyadic HF experience through a shared model of dyadic digital health. We call this alternative model of care "Caretown for Medly," which empowers ICs to concurrently expand patients' self-care abilities while acknowledging ICs' eagerness to provide greater support. We present the systematic design and development of the Caretown for Medly dyadic management module. While HF is the outlined use case, we outline our design methodology and report on 6 core disease-invariant features applied to dyadic shared care for HF management. This work lays the foundation for future usability assessments of Caretown for Medly. We conducted a qualitative, human-centered design study based on 25 semistructured interviews with self-identified ICs of loved ones living with HF. Interviews underwent thematic content analysis by 2 coders independently for themes derived deductively (eg, based on the interview guide) and inductively refined. To build the Caretown for Medly model, we (1) leveraged the Knowledge to Action (KTA) framework to translate knowledge into action and (2) borrowed Google Sprint's ability to quickly "solve big problems and test new ideas," which has been effective in the medical and digital health spaces. Specifically, we blended these 2 concepts into a new framework called the "KTA Sprint." We identified 6 core disease-invariant features to support ICs in care dyads to provide more effective care while capitalizing on dyadic care's synergistic benefits. Features were designed for customizability to suit the patient's condition, informed by stakeholder analysis, corroborated with literature, and vetted through user needs assessments. These features include (1) live reports to enhance data sharing and facilitate appropriate IC support, (2) care cards to enhance guidance on the caregiving role, (3) direct messaging to dissolve the disconnect across the circle of care, (4) medication wallet to improve guidance on managing complex medication regimens, (5) medical events timeline to improve and consolidate management and organization, and (6) caregiver resources to provide disease-specific education and support their self-care. These disease-invariant features were designed to address ICs' needs in supporting their care partner. We anticipate that the implementation of these features will empower a shared model of care for chronic disease management through digital health and will improve outcomes for care dyads.

Patient and public involvement in international research: Perspectives of a team of researchers from six countries on collaborating with people with lived experiences of dementia and end-of-life.

Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long-term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end-of-life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Thirty-eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

The experiences of people living with dementia and their care partners participating in an online therapeutic songwriting program.

Despite the impact of dementia on close care relationships, accessible therapeutic services for people living with dementia and their care partners remain scarce. Further, there is an increasing demand for online services, highlighting the need for ongoing telehealth research. This study aimed to explore the experiences of people living with dementia and their informal and formal care partners following participation in a 10-week online therapeutic songwriting program. The songwriting program included four duo and six group sessions facilitated by a music therapist. Post-program semi-structured interviews were analysed using thematic analysis. Nine people with dementia and six care partners (nine duos) participated in the program. Five duos were in spousal relationships and four people with dementia participated with a formal care partner. Participants attended an average of four duo sessions and three group sessions. Six people with dementia and five care partners participated in post-program interviews. Four themes were developed: (1) No one else does this; (2) It's all about us as people; (3) After the sessions we'd come out buzzing; and (4) The journey was as important as the product. Participants highlighted songwriting as a unique opportunity to connect with music, experience welcomed challenges, and spend 'real time' together. The program drew on participants' lived experience and promoted connection with others, resulting in feelings of enjoyment, enhanced mood, and achievement. Participants valued both the songwriting process and song product, emphasising the importance of sensitive and skilful facilitation. Our findings suggest that these distinct benefits were not available through other support services. Further, online songwriting is a viable option for people living with dementia and their care partners where in-person sessions are not available or accessible.

Physical activity together for MS (PAT-MS): Secondary outcomes of a randomized controlled feasibility trial

BackgroundCare partners provide essential care to those with multiple sclerosis (MS). Dyadic interventions promoting health behaviours have wide-reaching benefits for individuals with MS and their care partners. However, behavioural interventions to promote physical activity in patient-caregiver dyads have yet to be explored in an MS-specific context. This study examined the secondary outcomes of the “Physical Activity Together for Multiple Sclerosis (PAT-MS)” intervention, including dyadic adjustment, caregiving tasks, caregiver quality of life, coping, and MS impact in MS dyads. MethodsA randomized controlled feasibility trial of the 12-week behavioural PAT-MS intervention. The Dyadic Adjustment Scale, Caregiving Tasks in MS Scale, Caregiver Quality of Life in MS Scale, Coping with MS Caregiving Inventory, and MS Impact Scale measured secondary outcomes of interest. Mixed-model ANOVAs were used to test changes in variables between groups (PAT-MS vs wait-list control) over time. Results20 participants, including 10 people with MS (51.4 ± 10.1 years old; median patient-determined disease steps (PDDS) score= 4, IQR= 1.25) and 10 care partners (48.5 ± 12.1 years old) were recruited and randomized. There was no statistically significant effect of the intervention on any of the secondary outcomes (p= 0.67–1.00). However, large effect sizes and condition-by-time interaction effects indicated improvement in dyadic adjustment (d= 1.03, ηp2= 0.45), the criticism-coercion coping subscale (d= -0.93, ηp2= 0.49), and caregiving tasks (d= 1.05, ηp2= 0.52), specifically within psycho-emotional (d= 1.47, ηp2= 0.38) and socio-practical (d= 1.10, ηp2 =0.37) sub-domains of caregiving tasks after the PAT-MS intervention compared to the wait-list condition. ConclusionWhile this pilot feasibility study was not powered based on the secondary outcomes herein, our findings indicate improvement in dyadic adjustment and emotional and social caregiving tasks, with reduced reliance on criticism-coercion coping in the PAT-MS group compared to controls following the intervention. Findings indicate that PAT-MS may improve dyadic psychosocial well-being of people with moderate-to-severe MS and their care partners, and this should be examined next in a fully-powered study.

Code accommodation as a measure of inclusion for bilingual people living with dementia of the Alzheimer’s type

Abstract This case study explores the dynamics of code choices in interactions involving bilingual people living with dementia of the Alzheimer’s Type (DAT) and their primary care partners, focusing on two narrative interviews held in private settings. Drawing on a combination of Communication Accommodation Theory and Conversation Analysis, it takes account of the patterns, communicative functions and effects of code choices and code switching as practices of interactional adjustment. The qualitative analysis sheds light on inclusive and non-inclusive interactional adjustments expressed through code choices by individual speakers, especially focusing on code accommodation at turn boundaries. Results indicate a high language awareness in the two speakers living with DAT and positive communicational outcomes when code accommodation is performed by the conversational partner.

A SYSTEMATIC REVIEW OF CARE PARTNERS’ PERCEPTIONS OF FALL RISK AMONG OLDER PEOPLE WITH DEMENTIA

Abstract Community-dwelling older people with dementia (cd-OPWD) experience a high risk of falling. Care partners have varied levels of involvement in fall risk management for cd-OPWD. However, little is known about what factors may shape their involvement. Understanding care partners’ perceptions of fall risk, associated factors, and impacts will be critical for service providers to effectively engage care partners in fall risk management for cd-OPWD. Utilizing the Common Sense Model of Illness Perceptions, we conducted a literature search among 6 research databases and identified 23 articles using predefined inclusion/exclusion criteria. Our study found that care partners’ perceptions of cd-OPWD’s fall risk comprised beliefs about fall risk management behaviors/programs (i.e., mobility aides, exercise, home modification, fall detector system), their understanding of indicators, causes, consequences, timeline, and controllability of cd-OPWD’s fall risk, and emotional reactions. These perceptions were influenced by care partners’ previous experiences with falls, cd-OPWD’s declining health and functions, experienced care burden, relationships with cd-OPWD, and interactions with healthcare providers. Care partners’ beliefs about fall risk management behaviors/programs and their understanding of indicators, causes, consequences, and timeline of falls are often associated with their adoption of fall risk management behaviors. Their emotional responses to cd-OPWD’s fall risk are associated with increased care burden. These findings point to a need for solution-oriented fall prevention interventions to increase care partners’ perceived benefits of fall risk management behaviors/programs and their knowledge about cd-OPWD’s falls. Future interventions should also try to mitigate the negative impact of care partners’ emotional responses to cd-OPWD’s fall risk.

DEMENTIA CARE PARTNERS’ ANXIETY, DEPRESSION, AND BURDEN AT HOSPITAL DISCHARGE

Abstract At the time of hospital discharge, family care partners are typically planning to deal with the increased care dependency and medically complex needs of the person living with dementia. Consequently, they experience compounded stress to their psychological wellbeing. This study examined patient and care partner factors associated with family care partners’ anxiety, depression, and burden when caring for patients with dementia at hospital discharge. The sample consisted of 434 patient and care partner dyads enrolled in the Family centered Function-focused Care (Fam-FFC) study. Multiple regression analyses were conducted to examine factors associated with care partners’ anxiety (Hospital Anxiety and Depression subscale anxiety; HADS-A), depression (Hospital Anxiety and Depression subscale depression; HADS-D), and burden (Short Form Zarit Burden Interview; ZBI-12). Care partner anxiety was associated with higher levels of patient behavioral and psychological symptoms of dementia (BPSD; β=.13; p = <.001). Care partner depression was associated with cohabitation (β=1.30; p = <.001), and patient factors including increased BPSD (β=.17; p = <.001) and lower function (β=-.03; p = <.001). Care partner burden was associated with care partner relationship with patient (adult child; β=-.27; p = .02) and higher patient BPSD (β=.67; p = <.001). Findings suggest the need to incorporate the functional and behavioral status and needs of the patient when preparing the care partner for discharge, which may be especially critical if the patient is discharged to the care partner’s residence.

Individualized Coordination and Empowerment for Care Partners of Persons with Dementia (ICECaP): Study rationale and protocol

The majority of care for >10 million older adults with dementia (PWD) in the United States depends on at least on 11 million unpaid care partners (CPs). CPs are at greater risk of adverse physical, psychological, and cognitive health outcomes relative to non-caregiving peers. The goal of this paper is to establish the rationale, design, and protocol for a pilot randomized control trial to test the efficacy of the CP-focused intervention, ICECaP: Individualized Coordination and Empowerment for Care Partners of Persons with Dementia. ICECaP involves the assignment of a trained dementia care coordinator to a CP. The care coordinator maintains at least monthly contact with the CP with hybrid delivery (in-person, phone, e-mail, and video calls) and provides individualized support with care coordination for the CP navigating the PWD's care in a complex healthcare system, as well as supportive counseling, psychoeducation, and skills training for the CP. This trial will compare outcomes from baseline to 12-months among CPs who receive ICECaP versus routine care (controls). Outcomes include CP depression, burden, anxiety, and quality of life; CPs' reactions to the behavioral symptoms of dementia; and use of support services for the PWD. This trial will also assess mechanisms of intervention efficacy including changes in CP dementia knowledge, caregiving preparedness, self-efficacy, and optimism. Publication of this intervention protocol will benefit other dementia care teams seeking to support CPs and PWDs.

A SCOPING REVIEW: EXPLORING COLLABORATIVE GOAL SETTING AMONG AGING ADULTS AND CARE PARTNERS

Abstract Evidence suggests that goal setting and care partner support help aging adults improve their health. Less is known about how aging adults and care partners collaboratively participate in goal setting. The purpose of the current review was to describe the scope of the literature on this topic. A search was conducted in PubMed, CINAHL, SocINDEX, and PscyINFO. Reviewers screened 1,231 articles for the following inclusion criteria: 1) Participants included aging adults (50+ years) and care partners, 2) Goal setting was conducted, and 3) Articles were in English. Of the twenty-nine articles that were included, most (n=21) assessed goal setting for care partners and aging adults separately. Goal setting was primarily directed toward patient care, with only a few studies prompting care partner specific goals (n=4). Common goals reported by aging adults were independence, improving or maintaining functioning, addressing symptoms, and remaining socially active. Care partners listed similar goals but also identified accessing services and supports as important. This review is the first to describe goal setting with aging adults and their care partners, revealing concordant and discordant prioritization of goals within dyads. These findings illustrate the importance and potential complexity of including care partners in the goal setting process. We also found that collaborative goal setting and care partner directed goals are scarce, indicating the need for additional work in this area. Collaborative goal setting aligns with patient and family-centered care approaches and can contribute to better care plans that meet the needs of aging adults and their care partners.

FEASIBILITY OF A COMMUNITY-BASED NAVIGATOR SUPPORT PROGRAM FOR CARE PARTNERS OF SERIOUSLY ILL VETERANS

Abstract We examined the feasibility and satisfaction of a short-term Veterans Health Administration (VHA)-based care partner support intervention delivered by trained navigators during COVID-19 through a single-arm interventional cohort feasibility study of a telephone-based care partner navigation intervention. Navigators (n=9) received the standard state curriculum online from a local community health worker training program plus an additional eight weeks of online role-specific training by the study team. Subsequently, navigators contacted care partners (n=30) of seriously ill veterans weekly via telephone over a 12-week period to assess social and practical needs, and connect care partners to appropriate community-based or VHA resources. All navigators (9 female; 1 male) and 17% of care partners were African-American (83% were Caucasian or other). Care partners were 90% female and 10% male; age range 41 to 80. In this telephone-based support program delivered to care partners by standard-trained navigators across 12 counties, care partners were overall very satisfied (x̄=4.69 out of 5, sd =.77) with their navigator’s responsiveness and social support throughout the 12-week course of the study. Navigators’ confidence increased over time (x̄=8.2 out of 10 (sd=1.14) to x̄=8.78 (sd=.97)), while their self-assessed effectiveness ratings lowered over time as they encountered real-life scenarios (x̄=8.5 (sd=1.43) to x̄=7.89 (sd=.93)). Navigators documented successful connections to services in the VHA and in care partners’ communities. Using remote navigators with minimal but standard training is a feasible and acceptable model of care partner support.

CLINICIAN PERSPECTIVES ON PRE-VISIT AGENDA-SETTING FOR PERSONS WITH DEMENTIA AND THEIR CARE PARTNERS

Abstract Family care partners often assist persons with dementia in managing their health care, including through healthcare system patient portals. Thus, gaps in communication with family care partners can lead to unmet care needs. OurNotes is an agenda setting intervention included within pre-visit questionnaires that is sent through the patient portal. The intervention aims to encourage patients to share concerns before the visit to enhance communication between patients and clinicians. The objective of this study was to understand clinician perspectives on use of OurNotes in dementia care, including engaging care partners and suggestions for improving the intervention. Semi-structured interviews were conducted with 20 clinicians from two health systems with experience using OurNotes and caring for patients with dementia. Using rapid assessment methods, a codebook was developed and used in a team-based, thematic analysis. Participants were majority White, female, between 30-39 years, worked in primary care, and physicians. Clinicians identified: 1) Benefits of pre-visit preparation that enhanced clinician knowledge of the patient and/or care partner agenda; 2) Improved delivery of family-centered dementia care through greater care partner involvement; 3) Challenges of balancing patient and care partner concerns during clinical visits; and 4) Suggestions for focused efforts on improving care partners’ accessibility and use of OurNotes (and the patient portal). We conclude that optimizing use of OurNotes by care partners may support effective agenda setting by patients, care partners, and clinicians, and ultimately improve dementia care.

PERSONS LIVING WITH DEMENTIA AND MULTIPLE CHRONIC CONDITIONS IDENTIFYING HEALTH PRIORITIES WITH CARE PARTNERS

Abstract Many older persons living with dementia (PLWD) also live with multiple chronic conditions (MCCs). Care partners of PLWD will increasingly need to make care decisions for PLWD, but the health care priorities of PLWD with MCCs may vary. The Patient Priorities Care Health Priorities Identification Process is an evidenced-based tool to support older adults with MCCs to identify and communicate their health priorities. In this pilot study, we adapted this tool to engage care partners of PLWD as active listeners while the PLWD discussed their healthcare goals and priorities. We recruited dyads consisting of a care partner and a care recipient in the early stages of dementia. We assessed feasibility and acceptability of going through the process together through open-ended questions. Two coders used thematic analysis to examine their responses. Five dyads (N=10) participated in the pilot study. The PLWD ranged in age from 70-83 years and had a range of three to eight chronic conditions. Care partners ranged from 39-78 years of age. The PLWD had no issues completing the process with their care partners present and enjoyed having their care partner present. Care partners valued engaging as active listeners and had a better understanding of the PLWD’s health care priorities. Engagement in this process also helped them recognize that the PLWD is proactive in their own health goals. Involving care partners in a healthcare priorities identification process is a valuable, feasible, and acceptable way to prepare care partners to be care proxies.

EXAMINING A RANDOMLY ASSIGNED MUSIC PROGRAM ON STRESS AND WELLNESS: CARE PARTNERS OF OLDER ADULTS LIVING WITH DEMENTIA

Abstract OBJECTIVE The Mason CARES study examined the effects of a randomly assigned personalized music intervention (Phase II) for care partners of older adults living with dementia after implementation of a 9-week virtual stress management program (Phase I) to reduce stress and increase well-being. METHODS A total of 99 care partners completed the 20-week study across three cohorts in 2022. Baseline data on care partner stress levels and well-being were collected before beginning a 9-week stress management program (Phase I). Care partners were randomly assigned to a 4-week music intervention treatment or control group before the next stage of the intervention (Phase II). Researchers assisted care partners with identifying their family member’s favorite music during early adulthood years. MP3 players loaded with the favorite music were mailed to treatment group members. Focus groups were conducted to explore the utilization of personalized music. RESULTS: Nearly half (49%) were spousal care partners, ranging from 35-85 years old with 80% having at least a 4-year college degree, and 62% having an income greater than $70,000. Using ANOVAs to analyze mean stress levels and well-being, no significant differences in stress and well-being were found between the treatment and control groups. CONCLUSION: Despite the lack of statistically significant findings, preliminary analysis of focus group interviews revealed that many care partners benefited from the personalized music intervention. Effectiveness may depend on other factors, such as familiarity with using the technology, past experiences with music, care partner’s baseline level of stress, and the older adult’s stage of dementia.