Use of Telephone- and Internet-Based Support to Elicit and Address Financial Abuse and Mismanagement in Dementia: Experiences from the Care Ecosystem Study

Background: Financial mismanagement and abuse in dementia have serious consequences for patients and their families. Vulnerability to these outcomes reflects both patient and contextual factors. Objective: Our study aimed to assess how multidisciplinary care coordination programs assist families in addressing psychosocial vulnerabilities and accessing needed resources. Methods: Our study was embedded in a clinical trial of the Care Ecosystem, a telephone- and internet-based supportive care intervention for patients with dementia and caregivers. This program is built around the role of the Care Team Navigator (CTN), an unlicensed dementia care guide who serves as the patient and caregiver’s primary point of contact, screening for common problems and providing support. We conducted a qualitative analysis of case summaries from a subset of 19 patient/caregiver dyads identified as having increased risk for financial mismanagement and abuse, to examine how Care Ecosystem staff identified vulnerabilities and provided support to patients and families. Results: CTNs elicited patient and caregiver needs using templated conversations to address common financial and legal planning issues in dementia. Sources of financial vulnerability included changes in patients’ behavior, caregiver burden, intrafamily tension, and confusion about resources to facilitate end-of-life planning. The Care Ecosystem staff’s rapport with their dyads helped them address these issues by providing emotional support, information on how to access financial, medical, and legal resources, and improving intra-familial communication. Conclusion: The Care Ecosystem offers a scalable way to address vulnerabilities to financial mismanagement and abuse in patients and caregivers through coordinated care by unlicensed care guides supported by a multidisciplinary team.

Pigs in a Blanket: Evaluation of a Novel Device to Support Premature Neonatal Thermal Regulation

Background: 1.47 million preterm births worldwide tragically end in neonatal death (death within 28 days after birth). Contributing to this is the inability for preterm neonates to thermoregulate. In low-resource areas, access to incubators may be non-existent. Kangaroo Mother Care/Skin-to-Skin care (KMC/STS) is one method used in such situations and involves the caregiver strapping the infant to their chest in a kangaroo-like pouch. This method is effective but does not provide warming when the caregiver needs rest, nor does it allow the infants heart and respiratory rate to be monitored reliably. We created a device that aims to solve these issues in a safe, cost effective, and efficient way. Methods: Pilot studies were performed with 3 pigs to develop parameters that will validate the devices efficacy in a pre-clinical trial. Newborn pigs from 0-5 days old were used as the model for these initial trials. Test configurations were designed to demonstrate 1) the pigs could not regulate their core temperature without the device and 2) the heating elements of the device provided better support than a simple blanket. The pig’s core temperature was used as the standard measurement across all trials. Results: When exposed to an ambient temperature of 20oC, the pigs were not able to regulate their core temperature, which dropped 0.5oC per hour. After reaching hypothermic temperature (below 36.5oC), pigs placed in the warming device returned to a healthy core temperature (38.6oC) over the course of one hour. Pigs in the device with heating off only recovered partially. No pig had any abrasions or burns. Conclusion: These studies prove the devices feasibility and have established the parameters needed to design a larger trial. If the device continues to show similar efficacy in the future tests, it could be used to help lower premature infant mortality in low-resource settings.

The Long and Winding Road: A Caregiver’s Journey

In a discussion about innovative caregiving programs, it is important to hear the voice of the caregiver. In this section, using her personal experience, this healthcare professional will explore her interactions with the medical system as a caregiver for her partner. She will discuss her caregiver journey from the cancer diagnosis in 2014 through her partner’s final days in hospice, which occurred during the pandemic. She will discuss pertinent issues regarding in what ways the healthcare system response was helpful, which responses were problematic, and where it outright failed to address caregiver needs. Issues, such as caregiver perceived invisibility during the hospital stay, how ageism affected policy decisions and what effect those policies had on her as the caregiver, and other important issues will be explored, including the how the pandemic affected her as a caregiver.

Met and Unmet Needs of Cognitively Impaired Older Adults and Burden and Benefits of Their Caregivers

Previous studies typically assess caregiver needs when trying to interpret caregiver burden. We propose that both met and unmet needs of care recipients translate into different caregiving experiences with varying levels of benefits and burden combined. We use data on 263 caregivers of community-dwelling Singaporean older adults with cognitive impairment who participated in a community-based dementia care study conducted in 2018-2020. Our analysis produces three major findings. First, latent class analysis identifies three distinct types of caregiving experience based on caregiver-reported burden and benefits of caregiving: intensive (high burden and high benefits, 11% of caregivers), satisfied (low burden and high benefits; 54%), and dissatisfied (low burden and low benefits; 35%). Second, multinomial logistic regression shows that both met and unmet needs of care recipients are positively associated with the intensive caregiving experience, while only met needs are positively associated with the satisfied caregiving experience, in comparison to dissatisfied caregiving experience. Third, met needs in the areas of daytime activities, memory assistance, and mobility are positively related to the satisfied caregiving experience, compared to the dissatisfied caregiving experience. In other words, caregivers are more likely to be satisfied in their caregiving experiences (i.e., low burden and high benefits) if their care recipients’ problems with memory, mobility, and finding suitable and adequate daytime activities are properly managed. Our findings thus call for interventions to fulfill care recipients’ needs in a more tailored manner in order to increase satisfaction among caregivers.

Beyond the Lockdown Binary: Family Caregiver Needs for Creative Solutions During a Global Pandemic

As COVID-19 lockdowns began in Canada last spring, family caregivers (FCGs) of people living with dementia (PLWD) found themselves facing a catch-22: they and their family members were often most at risk of severe outcomes should they contract the virus, yet the public health measures put in place also detrimentally affected their ability to continue providing care. To understand the nuances of caregiver experiences during the pandemic, we conducted 9 focus groups with 19 FCGs of PLWD in the Calgary region in summer 2020. Caregivers reported negative outcomes resulting from decreased services for both themselves and the PLWD, including increased isolation, poor mental health, and accelerated dementia progression. Caregivers also emphasized the importance thinking beyond the binary of either locking down or opening up; rather, we must find creative solutions to safely continue providing supports to caregivers. This presentation explores FCG suggestions for balancing COVID-19 risk against caregiver needs.

Breaking New Ground: Incentivizing Innovative Caregiving Programs

Caring for someone with chronic illness is a demanding job, and as a result 46% of caregivers caring for adults with chronic illnesses report a significant level of burden (AARP and National Alliance of Caregiving, 2015). Recent reviews note a prevalence rate of 31.2% for depression (Collins & Kishita, 2019) and 32.1% for anxiety (Kaddour & Kishita, 2020). In addition, most caregivers also report high levels of negative emotions including frustration, guilt, and a sense of hopelessness regarding the future (Schulz & Eden, 2016). This symposium will focus on innovative programming to address caregiver needs and concerns. The first presenter will set the foundation as she explores her caregiver journey and the issues she experienced as a caregiver. Using her personal experience, this healthcare professional will explore her interactions with the medical system as a caregiver, including the unique issues experienced during the pandemic. The second presenter will examine why are caregiver program needed, what benefits can be expected, and what is considered best practices when addressing the unmet needs of family caregivers in caregiver programs. The third and fourth presenters will discuss two exemplar caregiving programs - Caregiver Clinic at the Memorial Sloan Kettering Cancer Center and the Caregiver Initiative from the Rush University Medical Center. They will describe the program, the process of creation, funding, barriers experienced, and working solutions. Pertinent data regarding the integration of the programs within the medical systems, the programs scope, and the effects of the pandemic on the programs will be shared.

Neuropalliative care for the neurosurgeon: a primer

Many neurosurgical conditions are incurable, leading to disability or severe symptoms, poor quality of life, and distress for patients and families. The field of neuropalliative care (NPC) addresses the palliative care (PC) needs of individuals living with neurological conditions. Neurosurgeons play an important role within multidisciplinary NPC teams because of their understanding of the natural history of and treatment strategies for neurosurgical conditions, longitudinal patient-physician relationships, and responsibility for neurosurgical emergencies. Moreover, patients with neurosurgical conditions have unique PC needs given the trajectories of neurosurgical diseases, the realities of prognostication, psychosocial factors, communication strategies, and human behavior. PC improves outcomes among neurosurgical patients. Despite the importance of NPC, neurosurgeons often lack formal training in PC skills, which include identifying patients who require PC, assessing a patient’s understanding and preferences regarding illness, educating patients, building trust, managing symptoms, addressing family and caregiver needs, discussing end-of-life care, and recognizing when to refer patients to specialists. The future of NPC involves increasing awareness of the approach’s importance, delineating priorities for neurosurgeons with regard to NPC, increasing emphasis on PC skills during training and practice, expanding research efforts, and adjusting reimbursement structures to incentivize the provision of NPC by neurosurgeons.

NCOG-49. UNMET NEEDS AND WISH FOR SUPPORT OF FAMILY CAREGIVERS OF PRIMARY BRAIN TUMOUR PATIENTS

BACKGROUND Most primary brain tumour patients rely on informal caregivers (i.e. family members or friends) for practical and emotional support. While caregiving can be rewarding, it may lead to significant burden. To develop support it is therefore vital to distinguish between unmet needs, and an actual wish for support. Study aims: 1) identify the presence and magnitude of caregivers’ unmet needs; 2) examine associations between unmet needs and wish for support; 3) evaluate perceived usefulness of caregiver needs screening in clinical practice. METHODS Family caregivers of primary brain tumour patients were recruited and asked to complete an adapted version of the Caregiver Needs Screen (CNS) which consisted of 33 common issues in neuro-oncology caregiving (scale 0-10), and the wish for support (yes/no). Participants ranked (0-7) their experience of using the CNS with a study-specific evaluation questionnaire. Descriptive and correlational analyses were applied. RESULTS Caregivers (N=79) reported between 1-33 unmet needs (M=17.20, sd=7.98) but did not always wish for support (range 0-28, M=4.71, sd=6.63). Most distressing items were changes in patient’s memory or concentration (M=5.75, SD=3.29), followed closely by patient’s fatigue (M=5.58, SD= 3.43), and recognising signs of disease progression (M=5.23, SD= 3.15). A weak correlation was found between the total number of unmet needs and wish for support (r=0.296, p=0.014). Caregivers most often wished for support with recognising disease progression (N=24, 34.78%), and least often with managing spiritual issues (N=0, 0%). Caregivers evaluated the CNS tool positively (mean item scores ranging 4.19-6.21 out of 7). CONCLUSIONS Family caregivers experience distress resulting from many neuro-oncology specific needs, but this is not directly related to a wish for support. Caregiver needs screening could be useful to tailor support to suit caregivers’ preferences in clinical practice.

Theoretically Based Factors Affecting Stroke Family Caregiver Health: An Integrative Review

Stroke family caregivers often neglect their own health while providing care. Rigorous reviews have focused on stroke caregiver needs and outcomes; however, a comprehensive review of stroke caregiver health is lacking. The purpose of this integrative review was to determine factors associated with stroke family caregiver health. Using a PRISMA flow diagram and Rayyan software, 41 studies were identified published from January 2000 to December 2020. Databases included Cochrane Reviews, Cochrane Trials, PsycINFO, Ovid MEDLINE, PubMed, EBSCOhost MEDLINE, Embase, and CINAHL. Rigorous guidelines were used to critique the 41 articles. Health measures were global in nature, lacking details regarding health promotion activities important to stroke family caregiver health. Common factors associated with caregiver health were depressive symptoms and burden. Further research is needed to design more situation-specific instruments to measure stroke family caregiver health, as well as interventions to reduce depressive symptoms and burden while promoting caregiver health.