Care Partners Research Articles

"What choice do we have?" Reactive and proactive decision-making for aging in place with dementia.

Promoting options for aging in place (AIP) has broad appeal to policymakers and professionals providing services to persons living with dementia (PWD). However, the benefits or burdens of AIP likely vary among individuals and families. We sought to describe factors influencing decision-making to age in place versus seek a higher level of residential care for PWD. A qualitative study was undertaken as part of a larger mixed-methods study utilizing semi-structured interviews with PWD, family care partners, and dementia clinicians. Interview transcripts were analyzed using qualitative content analysis with constant comparison. Sample size was determined by thematic saturation within subgroups. We conducted 74 interviews among 14 PWD, 36 care partners, and 24 clinicians. Preferences for AIP were driven by (1) desire to preserve independence, (2) a sense that the "best care" is delivered by loved ones and in a familiar environment, (3) distrust and fear of care facilities, and (4) caregiver guilt. PWD and care partners frequently considered moving from home as a "last resort" and wanted to avoid planning for future care needs. Many decisions to move were reactive and triggered by patient safety events, physical dependency, or the loss of caregiver. Proactive decision-making was facilitated by (1) prior experience witnessing the challenges of caring for a person with advanced dementia in the home; and (2) having substantial financial resources such that participants could seek major home adaptations or avoid "lower quality" institutions. Decisions regarding care setting for PWD frequently do not feel like a choice and are made under imperfect conditions. Programs using AIP as an outcome measure should recognize the various patient-centered and non-patient-centered factors that influence such choices, and interventions should be designed to promote more informed and equitable decision-making for care setting in dementia.

Telephone-based mindfulness intervention positively impacts family communication and stress within rural, African American dementia caregiving teams

Objectives The objective of this paper is to explore how telephone-delivered mindfulness training impacts family conflict and communication within the informal dementia caregiving team, including primary caregivers, their care partner, and the care recipient. Method Primary caregivers and their care partners participated in an eight-week telephone-delivered mindfulness-based intervention (MBI). This study used mixed methods and a pre-post design to evaluate the intervention’s effect on family satisfaction, perceived support, and family conflict. Results Both family satisfaction and perceived informational support increased significantly, and qualitative analysis revealed four key themes illustrating how the mindfulness intervention served to positively impact family conflict and communication among participating caregivers. Conclusion This study provides preliminary evidence for the beneficial effects of an MBI on family functioning among rural African American caregivers of people with Alzheimer’s disease and related dementias.

The Broader Effects of Delayed Progression to End-Stage Kidney Disease: Delaying the Inevitable or a Meaningful Change?

A global rise in the prevalence of patients with chronic kidney disease (CKD) with end-stage kidney disease (ESKD) has led to a considerable and increasing burden to health systems, patients, and society. Sodium-glucose cotransporter 2 (SGLT2) inhibitors are proven to reduce incidence of cardio-renal outcomes, including onset of ESKD. Recent post hoc analyses of SGLT2 inhibitor trials extrapolate substantial delays in the average time to ESKD over a patient's lifetime. In this article, we explore the possible real-world effects of such a delay by considering the available evidence reporting outcomes following onset of ESKD. From the patient perspective, a delay in reaching ESKD could substantially improve health-related quality of life and result in additional life years without the need for kidney replacement therapies, a target relevant to all CKD subpopulations. Furthermore, should a patient initiate dialysis at an older age as a result of CKD progression, the time spent in receipt of dialysis, and therefore associated healthcare costs, may also be reduced. A delay in progression may also lead to changes in the management of ESKD, such as increased election of conservative care in preference to dialysis, particularly in elderly populations. For younger patients with CKD, those who reach ESKD while employed face considerable work impairment and productivity loss, as may families and care partners of working age. Therefore, a delay to the onset of ESKD will reduce the proportion of their working lives affected by productivity losses or unemployment due to medical reasons. In conclusion, optimised treatment of CKD may lead to a shift in treatment options, but proper and timely implementation is essential for the realisation of improved outcomes.

Multidisciplinary oncology clinicians' experiences delivering spiritual care to patients with cancer and their care partners.

To understand multidisciplinary healthcare clinicians' meaningful and challenging experiences providing spiritual care to patients with cancer and their care partners. Multidisciplinary clinicians who participated in a communication training program supported by the National Cancer Institute or a palliative care training for nurses (N = 257) responded to two, open-ended questions about meaningful and challenging experiences of providing spiritual care. A thematic analysis of responses using an iterative, inductive approach was conducted until saturation was reached. Participants from nursing (68%), social work (22%), and chaplaincy (10%) responded to open-ended survey questions. Three themes related to meaningful experiences of providing spiritual care emerged: building authentic interpersonal connection with patients and care partners; creating intentional space for patients and care partners to inform spiritual care; and actively supporting patients and care partners in their processes with spirituality. Three themes related to challenging experiences of providing spiritual care emerged: contextual factors and clinical circumstances complicate provision of spiritual care; facing barriers to providing high-quality, patient-centered care; and navigating ethical and logistical issues that affect spiritual and other care. Clinicians derive meaning from a range of experiences throughout their provision of spiritual care to patients with cancer. However, they also face many challenges in delivering person-centered spiritual care in cancer settings, with some challenges reflecting significant gaps in spiritual care knowledge and training. Findings can guide future training and educational endeavors for multidisciplinary clinicians in the domain of spiritual care.

CO-OP Approach With Children and Youth With Executive Function Deficits After Acquired Brain Injury: A Qualitative Study of Care Partners' Involvement.

Care partners' involvement is a key feature of the Cognitive Orientation to daily Occupational Performance (CO-OP) approach that can enhance rehabilitation outcomes and promote the generalization and transfer of strategies and skills to everyday life. Gaining insight into care partners' experience with their child's CO-OP intervention is critical to understanding how to enhance care partners' involvement. To gain insight into the experience of care partners whose child with acquired brain injury (ABI) participated in CO-OP intervention. A qualitative descriptive research design was used. Semistructured interviews were conducted at three time points (immediate postintervention and at 2 and 6 mo postintervention). Two rehabilitation centers. Thirteen care partners of 12 children or youth with severe ABI. Three themes emerged from the analysis of 33 interviews: (1) The child is an active agent in their therapy, (2) the care partner is the keystone who helps solidify the elements of CO-OP, and (3) CO-OP mastery requires time and practice, and its use evolves over time. These themes highlight the progressive nature of proficiency in CO-OP for both care partners and children. This was evident not only in the children's improvement in task performance, but also in their ability to problem solve. Care partners' role in supporting the CO-OP approach also unfolds over time as their confidence in their child's problem-solving abilities, and in their own ability to adequately provide guidance, increases. Engagement seems to be central in facilitating this progression for both children and their care partners. Plain-Language Summary: This is the first study to provide insights into the involvement of care partners in the Cognitive Orientation to daily Occupational Performance (CO-OP) approach for children and youth with executive function deficits after acquired brain injury. This is also the first study to explore the evolution of care partners' experiences over time. Involving care partners is a key feature of the CO-OP. Understanding care partners' experiences with their child's CO-OP intervention can improve a child's rehabilitation outcomes. The study found that care partners' role in supporting their child's CO-OP approach improved over time as their confidence in their child's problem-solving abilities increased. The care partners' own ability to adequately provide guidance to their child also increased over time. Engagement seems to be central in facilitating this progression for both children and their care partners. It is hoped that occupational therapists will consider the findings of this study to better support care partners in implementing the CO-OP approach with their child in their real-life context.

Centering the person in development of a model of care for people with Parkinson’s disease: a qualitative study

Purpose Obtain the perspectives of people with Parkinson’s disease (PwPD) and their care partners (CPs) about their lived experiences with Parkinson’s Disease (PD) to characterize a new model of care that meets their biopsychosocial and healthcare needs. Methods This phenomenological study included semi-structured focus groups exploring PD diagnosis/care experiences and conceptualizations of an ideal model of care among PwPD and CPs. Data were analyzed via thematic analysis. Results Twenty-five individuals (PwPD, n = 18; CPs, n = 7) participated across four focus groups. Researchers developed four themes to describe participants’ lived experience with, barriers to, and needs for PD care. These themes characterize key hopes for care as: 1) person-centered, 2) coordinated, 3) provides access to education and information, and 4) builds on the benefits of community. Conclusions Participants emphasized that, beyond clinical interactions and diagnosis-centered conversations, they wished for holistic healthcare that acknowledged the larger picture of their life with PD. An ideal model of care for PwPD should aim to be person centered, maximize collaboration and coordination across multiple disciplines, provide access to a wide range of information and resources, refer to community centers and support groups, and be designed with ease of navigation in mind.

Knowledge, Beliefs, and Experiences With Mental Health Services and Help-Seeking in People With Aphasia and Care Partners.

Supporting psychological well-being in persons with aphasia (PWA) can improve social and health outcomes; however, PWA and their care partners (CPs) are often not receiving mental health support. Previous research explores this from the perspective of health care professionals. The aim of this study was to examine knowledge, beliefs, and experiences related to mental health services directly from PWA and CPs. The study included 11 PWA and 11 CPs. Participants completed a guided survey (virtual) with opportunities for elaboration related to the knowledge, beliefs, and experiences of mental health. There was variability in personal preferences for referrals, types of coping strategies, and confidants for general thoughts and feelings and those specific to aphasia. PWA identified health care professionals as people to share thoughts and feelings, whereas CPs chose family and friends more often. Both CPs and PWA reported communication difficulty and finding a counselor as "sometimes" preventing access to services but cited fear and trust as "always" preventing access. Knowledge, beliefs, and experience with help-seeking and mental health services are personal and variable. Assessing barriers unique to living with aphasia, such as communication challenges and locating a suitable counselor, must also be considered within more complex and personal barriers of fear and trust that are consistently reported in the general public. Health professionals across the continuum of aphasia care need to understand the communication challenges of living with aphasia in tandem with understanding individual differences to personalize approaches to mental health services and help-seeking.

2330 Community frailty hotline service: an innovative hospital avoidance model for frailer older people in mid and South Essex health

Abstract Introduction Frailty Hotline Service (FHS) was set up initially in January 2021 to provide 24/7 advice and guidance to care home medical staff within the Mid & South Essex Health and Care Partnership footprint as a part of covid response. This was expanded to support GPs, Urgent Care Response Team (UCRT), community hospitals, hospices etc and later established as Community Frailty Hotline Service (FHS) with an aim for hospital avoidance and provide support to frailer older patients in their own places. Later, a Frailty Virtual Ward (FVW) was established to complement FHS within the MSE HCP. Methods FHS was led by 5 secondary care consultant geriatricians with direct access to telephone, 7 days service operating from 9 am till 10 pm weekdays and 9 am till 10 pm weekends in 1:5 rota. Unified online portal ‘Netcalls’ was used to directly call consultants. Documentation completed on dedicated Frailty Consultant Hotline Tab on SystmOne to be visible to all care providers. Data-collection automated via Netcall and SystmOne from March 2023 till January 2024. Results Average number of call was 487/month, 2098 advices given over 11 months. Referral mostly done by UCRT 1511 (72%) followed by GP 193 (9.19%). Hospital admission avoided in 7 days and 30 days where the advice given in 82.9% and 73.6% cases, respectively. Total bed days saved was 13,920 Cost saving was over six million. Frailty score completed in 2982 cases. FVW referral done in 853 cases (40.6%). Feedback from FVW and UCRT, 95% found FHS was useful. Conclusion Our innovative model of FHS with direct access to geriatrician showed a safe and efficient model to support frailer older patients in the community with appropriate signposting to FVW and other community services as an alternative to acute hospital emergency admission and treat the right patient in the right place.

Dementia Care Partner Preparedness and Desire to Seek Long-Term Care at Hospital Discharge: Mediating Roles of Care Receiver Clinical Factors

ABSTRACT Objectives The purpose of this study was to explore the mediating roles of care receiver clinical factors on the relationship between care partner preparedness and care partner desire to seek long-term care admission for persons living with dementia at hospital discharge. Methods This study analyzed data from the Family centered Function-focused Care (Fam-FFC), which included 424 care receiver and care partner dyads. A multiple mediation model examined the indirect effects of care partner preparedness on the desire to seek long-term care through care receiver clinical factors (behavioral and psychological symptoms of dementia [BPSD], comorbidities, delirium severity, physical function, and cognition). Results Delirium severity and physical function partially mediated the relationship between care partner preparedness and care partner desire to seek long-term care admission (B = -.011; 95% CI = -.019, −.003, and B = -.013; 95% CI = -.027, −.001, respectively). Conclusions Interventions should enhance care partner preparedness and address delirium severity and physical function in hospitalized persons with dementia to prevent unwanted nursing home placement at hospital discharge. Clinical Implications Integrating care partner preparedness and care receiver clinical factors (delirium severity and physical function) into discharge planning may minimize care partner desire to seek long-term care.

Exploring confidence in financial planning topics among care partners of persons living with dementia.

Care partners of persons living with dementia perform significant financial planning in partnership with the person for whom they care. However, research is scarce on care partners' confidence and experiences with financial planning. The purpose of this study was, first, to quantify care partners' confidence across different financial planning topics. We sought to understand whether income, education, relationship type, and years of experience are related to care partners' level of confidence in financial planning. Second, we sought to better understand the reasons for these confidence ratings by examining care partners' experiences of financial planning. We conducted an online survey that asked a combination of quantitative and qualitative questions to understand care partners' confidence and experiences with financial planning. Participants were nationally recruited care partners of persons living with dementia. Multivariate linear regression was used to understand different subgroups' levels of confidence in each financial planning topic. Inductive thematic analysis was used to understand qualitative data. The financial planning topics in which participants (N = 318) felt the least confident were: options when there is not enough money to provide care; tax deductions available to cut care costs; and sources of money from government programs for which the care recipient is eligible. Differences in confidence were observed among care partners with lower incomes, less experience, and caring for a parent. Qualitatively, participants described the challenges of care budgeting and protecting personal finances; confusion about long-term care insurance and accessing resources; and, among confident care partners, reasons for this sense of preparedness. These results underscore the need for tailored interventions and technologies that increase care partners' confidence in specific aspects of financial planning, including long-term care insurance, available financial support, and what to do when money runs out.

Designing a mobile application to promote physical activity in spousal care partners of persons living with dementia and their care-recipient.

Background: Care partners of persons living with dementia and their care-recipient have low levels of physical activity. Mobile applications have demonstrated effectiveness in promoting physical activity among older adults. The purpose of this study was to explore the perceptions of spousal care partners of persons with dementia and their care-recipient on the design and content of a mobile application intended to promote physical activity.Methods: Semi-structured interviews were conducted with 14 care partners and their care-recipient. After the interviews were transcribed verbatim, thematic analysis was performed.Results: Four themes emerged from the participants' responses related to the design and content of a mobile application to promote physical activity: 1) exercise preferences and habits, 2) barriers to exercise, 3) motivations for exercise, and 4) mobile application preferences and supportive features.Conclusion: Findings lay the foundation for designing an effective user-friendly mobile application to promote physical activity that caters to the diverse needs, preferences, and challenges among spousal care partners of persons with dementia and their care-recipient.

Supported decision-making with persons with dementia: a scoping review protocol in partnership with lived experts

IntroductionThe United Nations Convention on the Rights of Persons with Disabilities asserts that all persons with disabilities have the right to receive the support they require to participate in decisions...

Co-creating Humanistic AI AgeTech to Support Dynamic Care Ecosystems: A Preliminary Guiding Model.

As society rapidly digitizes, successful aging necessitates using technology for health and social care and social engagement. Technologies aimed to support older adults (e.g., smart homes, assistive robots, wheelchairs) are increasingly applying artificial intelligence (AI), and thereby creating ethical challenges to technology development and use. The international debate on AI ethics focuses on implications to society (e.g., bias, equity) and to individuals (e.g., privacy, consent). The relational nature of care, however, warrants a humanistic lens to examine how "AI AgeTech" will shape, and be shaped by, social networks or care ecosystems in terms of their care actors (i.e., older adults, care partners, service providers); inter-actor relations (e.g., care decision-making) and relationships (e.g., social, professional); and evolving care arrangements. For instance, if an older adult's reduced functioning leads actors to renegotiate their risk tolerances and care routines, smart homes or robots become more than tools that actors configure; they become semi-autonomous actors, in themselves, with the potential to influence functioning and interpersonal relationships. As an experientially-diverse, transdisciplinary working group of older adults, care partners, researchers, clinicians, and entrepreneurs, we co-constructed intersectional care experiences, to guide technology research, development, and use. Our synthesis contributes a preliminary guiding model for AI AgeTech innovation that delineates humanistic attributes, values, and design orientations, and captures the ethical, sociological, and technological nuances of dynamic care ecosystems. Our visual probes and recommended tools and techniques offer researchers, developers/innovators, and care actors concrete ways of using this model to promote successful aging in AI-enabled futures.

Strengthening Military Medical Provider Readiness: A Comprehensive Examination of VHA-MHS Partnerships.

Military medical readiness, particularly in surgical specialties, remains a significant concern within the Military Health System (MHS). While initiatives like the U.S. Army Military-Civilian Trauma Team (AMCT3) Program have addressed some readiness gaps, they primarily focus on trauma care, leaving other crucial medical specialties underserved. Leveraging partnerships between the Department of Veterans Affairs (VA) and the Defense Health Agency (DHA) emerges as a strategic approach to address these challenges comprehensively. Further collaboration between the VA and MHS is an opportunity to enhance military medical provider readiness, covering expanded medical specialties and health care personnel. By utilizing resource-sharing agreements (RSAs) and the Joint Incentive Fund (JIF), opportunities for increased collaboration and interoperability between the VA and MHS are explored. Challenges such as maintaining partnerships, addressing billing issues, and navigating local-level politics are identified, with proposed solutions, including establishing a centralized interagency office to monitor and manage specialty care partnerships. A comprehensive approach to enhancing military medical provider readiness through VA-MHS partnerships is crucial. By addressing readiness gaps and optimizing resource utilization, such collaboration would likely improve the overall readiness of the medical force, benefiting both military and veteran patient populations.

Shared Access to Adults' Patient Portals: A Secret Shopper Exercise.

Millions of Americans manage their health care with the help of a trusted individual. Shared access to a patient's online patient portal is one tool that can assist their care partner(s) in gaining access to the patient's health information and allow for easy exchange with the patient's care team. Shared access provides care partners with a validated and secure method for accessing the patient's portal account using their own login credentials. Shared access provides extra privacy protection and control to the patient, who designates which individuals can view their record. It also reduces confusion for the care team when interacting with the care partner via the portal. Shared access is underutilized among adult patients' care partners. Investigate the process of granting or receiving shared access at multiple health care organizations in the United States to learn about barriers and facilitators experienced by patients and care partners. The Shared Access Learning Collaborative undertook a "Secret Shopper" exercise. Participants attempted to give or gain shared access to another adult's portal account. After each attempt they completed a 14-question survey with a mix of open- and closed-ended questions. Eighteen participants attempted to grant or receive shared access a total of 24 times. Fifteen attempts were successful. Barriers to success included requiring paper forms with signatures, lack of knowledgeable staff, lack of access to technical support, and difficult-to-navigate technology. Facilitators included easy-to-navigate online processes and accessible technical help. Participants who were successful in gaining shared access reported feeling more informed and able to engage in shared decision-making. The outcomes of our secret shopper exercise underscore the importance of collaboration aimed at learning from diverse encounters and disseminating the best practices. This is essential to address technical, informational, and organizational obstacles that may impede the widespread and accessible adoption of shared access.

A New Process Model for Relationship-Centred Shared Decision-Making in Physical Medicine and Rehabilitation Settings.

We present a relationship-centred shared-decision-making (RCSDM)process model to explicate factors that shape decision-making processes during physical medicine and rehabilitation (PMR) encounters among patients, their care partnersand practitioners. Existing shared decision-making (SDM) models fall short in addressing the everyday decisions routinely made regarding persons with chronic disabilities who require high levels of support, their care partnersand rehabilitation practitioners. In PMR, these everyday decisions are small scale, immediateand in service to a larger therapeutic goal. They can be thought of as micro-decisionsand involve multiple practitioners, care partnersand patients. How micro-decisions are made in this context is contingent on multiple roles and relationships among these relevant parties. Our model centres on micro-decisions among patients, their care partnersand practitioners based on our disorders of consciousness (DoC) research. To develop our model, we examined peer-reviewed literature in SDM in PMR, chronic disabilityand person-centeredness; formed collaborations and co-created our constructs with rehabilitation practitioners and with care partners who have lived experience of caring for persons with DoC; analysed emerging empirical dataand vetted early versions with expert scientific and clinical audiences. Our model builds from the core tenets of relational autonomy,and scholarship and activism of disability advocates. Our model conceptualizes four non-hierarchical levels of analysis to understand the process of micro-decision-making in chronic disability and medical rehabilitation: social forces (historical and sociological); roles and relationships (multiple and intersecting); relational dimensions (interactional and contextual)and micro-decision moments (initiation, responseand closure). Relationships among patients, their care partnersand practitioners are the intersubjective milieu within which decisions are made. Our conceptual model explicates the process of micro-decision-making in PMR. Care partners (or caregivers) and rehabilitation practitioners are active members of our team. We work together to develop research projects, collect, analyseand disseminate data. The conceptual model we present in this manuscript was co-created-input from care partners and practitioners on previously collected data became the impetus to develop the RCSDM process model and share co-authorship in this manuscript.

Qualitative exploration of patients’ experiences with Intrabeam TARGeted Intraoperative radioTherapy (TARGIT-IORT) and External-Beam RadioTherapy Treatment (EBRT) for breast cancer

ObjectiveTo gather a deep qualitative understanding of the perceived benefits and impacts of External-Beam RadioTherapy (EBRT) and TARGeted Intraoperative radioTherapy (TARGIT-IORT) using Intrabeam to assess how the treatments affected patient/care...

An Exploration of the Peri-Diagnostic Experiences of Lesbian, Gay and Bisexual People With Dementia Using the Candidacy Framework.

How dementia affects lesbian, gay, bisexual, trans, queer people or those with other minoritised sexual/gender identities (LGBTQ+) is not well understood. Furthermore, existing research often excludes the voices of LGBTQ+ people living with dementia and focuses instead on their care partners. This study addresses this evidence gap by drawing on the ESRC/NIHR funded DETERMIND cohort, consisting of 940 newly diagnosed people with dementia, to explore the peri-diagnostic experiences of people living with dementia who identify as LGBTQ+. We recruited five people (who identified as lesbian, gay or bisexual [LGB]) and completed semi-structured interviews with them and their partner caregivers (n=3) discussing their experiences of (1) engaging with dementia health care services, (2) receiving a dementia diagnosis, and (3) the support they were offered after diagnosis. Interviews were shaped by the Candidacy Framework, a theoretical model for understanding accessibility of health services, and an inductive thematic analysis was employed to develop common themes. Participants did not routinely disclose their LGBTQ+ identities to health service professionals, despite feeling this was an essential aspect of who they are. They relied on their resilience of overcoming previous experiences of lifetime discrimination to navigate complicated dementia care systems. The importance of 'chosen families' as informal support networks for LGBTQ+ people living with dementia was highlighted, particularly given the lack of formal care services they felt comfortable accessing. All participants were concerned about their future care needs and whether they would receive home-based or community-based support that respected their LGBTQ+ identities. This study adds to the limited evidence base that can be used to inform future research, policy and practice seeking to address inequalities across the dementia care pathway. We only interviewed people who identified as LGB so generalizability to the whole LGBTQ+ population is limited, however our data suggest dementia health care professionals should encourage and support disclosures of LGBTQ+ identities so that inclusive care and support planning can be provided to LGBTQ+ people at every stage of dementia.

Adverse events and perceived abandonment: learning from patients’ accounts of medical mishaps

BackgroundAdverse medical events affect 10% of American households annually, inducing a variety of harms and attitudinal changes. The impact of adverse events on perceived abandonment by patients and their care...

Dr. Audrey Holland's Crazy Patchwork Quilt: A Thematic Analysis.

Dr. Audrey Holland was a friend to people with aphasia and related disorders, care partners, community advocates, students, clinicians, educators, researchers, and more. Her profound impact extended across these diverse communities within aphasiology and speech-language pathology. Through her words and deeds, Audrey established a rich legacy that continues to guide and inspire countless individuals. A careful examination of her contributions reveals a roadmap for those seeking to embark on a similar journey of compassion and influence. To pay tribute to our mentor and friend, we conducted a thematic analysis of her solo works to identify enduring themes, laugh-out-loud anecdotes, and poignant insights to share with her friends, colleagues, mentees, and even strangers who, after reading this article, will be touched and changed by her wisdom.