Unpaid Caregivers Research Articles

SUPPORT FOR FAMILY CAREGIVERS: WORK STRAIN AND THE IMPACTS OF FORMAL AND INFORMAL SUPPORT

Abstract In the US, caregiver burnout has significant mental and physical ramifications for an estimated 40 million unpaid caregivers. In addition to higher risks of depression, fatigue, and anxiety, caregivers are often squeezed in the already tenuous balance between work and life. This study seeks to assess whether and to what extent the mental health consequences of caregiver work strain is ameliorated by the presence of additional (informal) family caregivers and formal service use. This study utilizes data provided by the National Study of Caregiving (NSOC) data which is linked with care-recipient information from Health and Aging Trends Study (NHATS) data. We analyze mental health outcomes for caregivers who were present in years 2015 and 2017 (N = 281) using lagged linear regression techniques. We estimate associations of work-strain with mental health issues as well as the moderating effects of informal support (the number of additional caregivers) and utilization of formal support (such as paid service support, formal training, and Medicare funding). Preliminary analyses indicate that the additional informal support mitigates the effect of work strain on mental health. However, formal support corresponds with positive mental health outcomes in the absence of work strain and poorer mental health outcomes when the caregiver experiences work strain. One possible explanation is that formal support is more likely to be used when caregiver burden and isolation is higher, highlighting the importance of timing in service utilization as well as the importance of social and informal resources for employed caregivers.

AN AGENDA FOR THE FAMILY CARE GAP: ALIGNING SCIENCE, FAMILY EXPERIENCES, AND PUBLIC HEALTH

Abstract When considering the public health ramifications of family caregiving, a major concern is the future supply of family, friends, or other unpaid caregivers (hereafter referred to as family caregivers) of older persons with health needs. This presentation will summarize the state of the science on estimating the future “supply” of family caregivers for older persons, and whether there are structural or social determinants, in addition to long-standing socio demographic trends, which may contribute to the family care gap. In addition, the presentation will outline a potential research agenda on the family care gap that summarizes the potential implications of this phenomenon as well as how it aligns with efforts to elevate family caregiving for older people (particularly those living with dementia) as a matter of public health import.

WHO WORKS LONGER IN LATER LIFE? KEY VARIATIONS IN WORKING LIFE EXPECTANCY IN INTERNATIONAL PERSPECTIVE

Abstract In the context of population aging, policymakers are eager to encourage and enable longer working lives, assuming this will lead to increased tax revenue and reduced demand on social security and health care systems. Simultaneously, individuals who work longer will gain additional income and may experience the psychosocial benefits that come from workplace engagement. However, many factors drive early labor market exit, and blanket policy strategies to extend working lives often ignore the nuances that shape the length of real working lives. Such policies have emerged partly from increased life expectancies, although these measures fail to capture subgroup differences in the capacity to continue working. They also do not account for often discontinuous labor market trajectories, particularly around retirement. As such, scholars have turned to more refined methodologies and concepts like working life expectancy (WLE) to better inform policies that actively aim to increase retirement ages. This symposium highlights an ongoing program of work by the IDEAR network, which examines WLE using longitudinal studies of aging in Europe. The symposium features results from Sweden and England, estimating WLE using multi-state models. Unlike other approaches to estimate life expectancy employing the Sullivan method, this approach allows for reversible transitions between work and non-work, reflecting the dynamic and complex nature of modern labor market transitions and exits. The symposium further presents how WLE varies according to key determinants, including socioeconomic status, healthy lifestyles, and unpaid caregiving, highlighting the policy implications that emerge from recognizing inequalities and variations in WLE across vulnerable subgroups.

HOW CAREGIVERS DIVIDE RESPONSIBILITIES: A LATENT CLASS ANALYSIS OF US CAREGIVING ARRANGEMENTS

Abstract Family and other unpaid caregivers provide the bulk of caregiving for older adults, but we know little about how kin divide responsibilities amongst themselves, and how they share tasks with paid caregivers. This study identifies the common “care configurations” that emerge to support older adults with functional limitations. Studying older adults (age 65+) who received assistance from a caregiver in the National Health and Aging Trends Study Wave 5 (n = 4,182), I generate an extensive battery of caregiving arrangement indicators, including household, physical care, transportation, and administrative assistance provided by spouses, children, other unpaid kin, or paid caregivers. I use latent class analysis and adjust for survey design to identify common configurations. I find four primary care configurations. In the most common configuration (42%), partners provided all assistance and most often helped with household chores. Conversely, children often assisted with transportation while sharing other responsibilities with paid caregivers. Older adults with limited physical capacity, probable dementia, and Medicaid were most likely to belong to the only configuration featuring paid caregiving. By studying the full population of older adults who receive care assistance, this study provides a broad perspective on how older adults rely on unpaid kin caregivers and when they rely on paid caregiving. In particular, it identifies transportation assistance as an overlooked form of caregiving and demonstrates that children are most frequently dividing responsibilities with other kin or paid caregivers.

CARE JUSTICE FOR UNPAID AND UNDERPAID CARE WORKERS

Abstract Scholarship on older women, family caregiving, feminist gerontology, community-based services and policy change intersected throughout my career. As a social worker, care of older adults has always been a matter of social justice. My focus now is on care justice for those who perform the critical work of long-term services and supports: unpaid family caregivers and underpaid home care workers. This lecture will examine the interrelationships among both types of care laborers, who often face structural constraints on their decision to care and whose work is devalued, marginalized and invisible. Inequities for care workers by race, immigrant status, and sexual orientation are rooted in systemic racism, sexism, xenophobia, and homophobia. This lecture presents the components of a care justice framework, informed by feminism, intersectionality, and care theory, of fundamental structural changes to value collectively the essential work of care, ensure meaningful choice to care, and reduce inequities in care labor.

INFORMAL CAREGIVING EXPERIENCES: CHALLENGES AND OPPORTUNITIES FOR AN AGE-FRIENDLY UNIVERSITY

Abstract The growing Age-Friendly University (AFU) global network has been helping its members assess their institutions and identify action items for increasing age-friendliness. This research investigates one of the issues identified through previous assessment of an AFU as a weakness and area of opportunity, which is the lack of resources and information for campus community members who identify as informal or unpaid family caregivers. Data from N = 70 campus members (26% faculty, 18% staff, 56% students; 84% female, 16% male) were collected in early 2023 through a campus-wide online survey and analyzed by a team of researchers using quantitative analysis for responses to Likert-type items and thematic analysis for open-ended responses. Issues around physical demands, time demands, financial stress, and social and emotional health while caregiving were assessed. Results indicated that respondents are experiencing different types of stress and need additional support and resources as caregivers, particularly related to respite care, mental health services, financial support, and assistance with physical tasks such as housework and transportation. The findings from this research will be used to develop and share resources around caregiving broadly across the university campus, and to ensure that resources are culturally inclusive, particularly as nearly 25% of the enrollment of undergraduate full-time equivalent students is composed of students from a Hispanic/Latinx background. Findings will also be used to establish community partnerships to harness resources from outside the university, and ultimately to help support the campus community moving forward and to achieve a piece of the university’s AFU vision.

MOTIVATIONS AND ROLE CAPTIVITY AMONG INFORMAL CAREGIVERS TO COMMUNITY-DWELLING PERSONS WITH DEMENTIA

Abstract There are 11 million informal (unpaid) caregivers currently assisting a person with dementia in the United States. Motivations for taking on this challenging role vary, with many citing their responsibility to family or a shared interpersonal history. Many caregivers do not feel as if they have a choice in taking on care responsibilities for relational and/or financial reasons and are held “captive” in this role. Prior research indicates role captivity as a key mediating force in the development of depression among dementia caregivers, but limited work has directly linked quantitative measures of role captivity with qualitative data surrounding motivations for providing care. The current mixed-methods study uses quantitative and qualitative data to explore this connection in a sample of 46 participants providing care to a community-dwelling person with dementia. Study findings show that role captivity was significantly associated with greater costs of care, feelings of grief, and depressive symptoms, as well as lower levels of self-efficacy and mutuality. These relationships were assessed alongside thematic analyses of interview data centered on motivations for providing care, familial and cultural expectations, and financial necessity. This research paints a detailed picture of the way in which dementia caregivers understand and relate to their role and can inform the design of effective psychological supports for this population.

RURAL DISPARITIES IN THE USE OF FAMILY AND FORMAL CAREGIVING FOR OLDER ADULTS WITH DISABILITIES

Abstract As federal and state policies rebalance long-term care from institutional settings to home- and community-based settings, reliance on formal (paid) and family (unpaid) caregivers for support at home nationally has increased in recent years. Yet, it’s unknown if use of formal and family care varies by rurality as a disproportional share of the aging population reside in rural areas. Using the Health and Retirement Study, we describe patterns in receipt of combinations of formal and family home care by rurality among community-dwelling adults aged 65+ with functional limitations from 2004-2016. Compared to older adults in urban areas, older adults in rural areas are more likely to receive any family care than those in urban areas and less likely to receive any formal care (2.4 and -4.4 percentage points respectively, p<0.05). From 2004 to 2016, a growing proportion of older adults in rural areas receive care from family caregivers exclusively while a decreasing proportion receive care from formal caregivers exclusively. When examining older adults in urban areas, we find the opposite trend — a growing proportion of urban adults rely exclusively on formal care and a decreasing proportion rely exclusively on family care. We find that national estimates of sources of caregiving and their trends mask significant heterogeneity in uptake by rurality. Understanding how older adults in rural areas are, or are not, receiving home-based care compared to their urban peers and how these patterns are changing over time is the first step to informing supports for family and formal caregivers.

A NOVEL NATIONAL FAMILY CAREGIVER ADVOCACY TRAINING PROGRAM: LESSONS LEARNED

Abstract The 2022 National Strategy to Support Family Caregivers recommended 24 legislative or policy changes to improve the national caregiving landscape. With basic training, unpaid family caregivers (CG) can be powerful stakeholder advocates to drive policy change. In collaboration with national caregiver advocacy organizations, the University of Pittsburgh National Rehabilitation Research and Training Center on Family Support hosted a Family Caregiver Advocacy Program (FCAP) with the educational objectives of increasing CG motivation, self-efficacy for, and participation in policy advocacy. FCAP is a series of virtual workshops for family caregivers on caregiving-related policies, how laws are written and passed, how caregiver advocates can inform the policy-making process, how to contact and meet with legislators, and how to tell their story to advocate for change. Caregivers (n=68) enrolled in the inaugural FCAP workshops participated over a 3-month period to develop and implement group-selected advocacy products. FCAP participants ranged from 20-29 to 70+ years old, were primarily women (88%) caring for individuals who are aging (65%), have a physical disability (41%), have an intellectual / developmental disability (27%), and / or have a mental illness (27%). This presentation will report on the CG products and outcomes and plans for future iterations of FCAP based on lessons learned.

EXPLORING THE EVERYDAY EXPERIENCES OF FAMILY CAREGIVERS OF PEOPLE LIVING WITH DEMENTIA: A LONGITUDINAL DIARY STUDY

Abstract People living with dementia rely largely on the support of unpaid family caregivers to remain living at home in the community. The strain created by this dependence is evidenced by high rates of distress among caregivers of people living with dementia and underscores the importance of access to appropriate formal and informal supports for this group. Providing tailored and meaningful supports and services to families requires a good understanding of the multidimensional and dynamic nature of the caregiving experience. Our study employed longitudinal qualitative methodology to understand how caregivers of people living with dementia were experiencing progression of the disease and shifting support needs over a two year-period. Fourteen family caregivers in British Columbia, Canada, wrote monthly diaries reflecting on their experience of caregiving and navigating supports. Thematic analysis of 137 diary entries shed light on different facets of caregiving experience, including psychological and emotional challenges (e.g., feeling overwhelmed, lacking a sense of control, trouble maintaining sense of self) and difficulties navigating formal care and supports (e.g., lack of access to services and information, lack of flexibility in service delivery). However, accounts also reflected participants’ resilience, through a range of coping strategies adopted to resolve problems encountered in caregiving, drawing on emotional and practical support from family, friends, and community. The diaries offer critical perspectives on gaps and inadequacies in formal supports for family caregivers and opportunities to better support the health and wellness of caregivers and recipients through dementia care policy and practice.

FAMILY CAREGIVING DURING THE COVID-19 PANDEMIC FOR OLDER ADULTS WITH DEMENTIA

Abstract Family caregiving plays a crucial role in meeting the care needs of older adults, especially those living with Alzheimer’s disease and related dementias (ADRD). The COVID-19 disrupted an already fragile care landscape by reducing the desirability of nursing home care and the availability of paid caregivers in the home and by destabilizing family caregiving arrangements. Older adult living with ADRD may be at higher risk for destabilized care and more vulnerable to adverse effects from the COVID-19 pandemic’s disruption to the long-term care landscape. This symposium draws on five papers providing qualitative and quantitative evidence of how care arrangements shifted during the COVID-19 pandemic among older adults with ADRD. Patterson and colleagues set the stage for understanding the impacts of the pandemic on family caregiving for older adults with dementia by providing estimates of how many families and households include someone with dementia. Choi and colleagues use a mixed-methods approach to show that family members provided more care during than before the pandemic, especially coresident family members. Lin and colleagues use quantitative evidence to examine how pandemic-specific needs and help from nonresident adult children varied by older adults’ cognitive functioning. Leggett and Tsuker examine the consequences of the pandemic for caregiver stress across different ADRD caregiver relationship types. Finally, Wiemers and colleagues extend the focus on unpaid family caregivers to include paid care and show how tradeoffs between paid and unpaid care for older adults with ADRD were affected by pandemic severity.

CONDUCTING A COUNTYWIDE ALZHEIMER’S DISEASE AND RELATED DEMENTIAS CAREGIVER LANDSCAPE ANALYSIS

Abstract In Los Angeles County (LAC), approximately 1 in 5 caregivers provide care to older adults with dementia and cognitive impairment. By 2040, a projected 1.5 million Californians will be living with Alzheimer’s disease and related dementias, foreshadowing an unprecedented need for family caregivers across the state. In 2021, the LAC Department of Public Health launched the Centers for Disease Control and Prevention-funded LA BOLD initiative with the intent of developing a strategic plan to address dementia awareness and care in LAC, including improving local infrastructure for supporting unpaid family caregivers. To support this effort, LA BOLD commissioned the University of Southern California Family Caregiver Support Center to conduct a landscape analysis of the caregiver population in LAC. The analysis used a multi-method approach that included: primary analysis of community-based organization surveys, stakeholder interviews, focus groups with family caregivers, and secondary analyses of California Health Interview Survey and California Caregiver Resource Center System CareNav™ data and an environmental scan of best-practice caregiving models in use in other states. Results informed the development of three functional recommendations specific to LAC caregivers: 1) Leverage existing infrastructure to strengthen and build family caregiver services and supports; 2) Promote health care payer, provider, and system recognition of and support for family caregivers; and 3) Increase respite services for caregivers. This presentation highlights the methods and the findings from the landscape analysis, providing insights into the barriers and opportunities that a growing caregiver population of persons with dementia may pose to LAC.

ESTIMATING THE ECONOMIC VALUE OF FAMILY CAREGIVING AT A NATIONAL AND STATE LEVEL

Abstract The 2023 update to the Valuing the Invaluable series estimates the economic value of unpaid, family caregiving in America at $600 billion in 2021. This is the latest estimate in almost 20 years of work tracking the economic value of family caregiving in the U.S. The Valuing the Invaluable series of reports uses a meta-analysis approach drawing on various surveys of family caregivers to produce estimates at the state and national levels of the numbers of caregivers, the hours of care they provided, the average economic value of that care per hour, and the total economic value of all caregiving provided in that year. This presentation will detail the methodology for this meta-analysis, the 2021 national estimate of the economic value of caregiving, and variation in state-level estimates of the economic value of caregiving. While this estimated economic value of caregiving seeks to be comprehensive, it does not account for opportunity costs tied to forgoing work or scaling back work because of caregiving, out-of-pocket costs of caregivers, or foregone retirement savings of caregivers. These limitations will be discussed and the direction they offer for future work understanding the full value of unpaid caregiving contributions to the LTSS system and the state and federal budgets.

VISUALIZING VETERANS’ CARE: UNDERSTANDING THE BREADTH OF OLDER VETERANS’ PAID AND FAMILY SUPPORT NETWORKS

Abstract Many older veterans rely on a complex network of paid and unpaid caregivers to age safely at home. Medical records often only capture a primary family caregiver, giving medical teams a limited picture of veterans’ supports at home as well as plans for contingency care. We tested a novel visual tool, care mapping, to better understand the scope of veterans’ formal and informal support. We created collaborative care maps with 10 dyads/triads of veterans age 65+ eligible for VA-paid home care and their primary paid and family caregivers. We compared the maps to veterans’ electronic medical records (EMRs) to explore care network structure, function and adequacy. Care maps identified substantially more care partners than EMRs, including functional, medical, socioemotional and spiritual supports such as family, paid aides, neighbors, Veterans’ groups, faith communities, local businesses (pharmacies, food delivery), and social media. Veterans, family and paid caregivers described working together closely, with aides serving as a “third arm” to fill care gaps. Care was often mutual, as veterans described financial and emotional support they provided to family members, aides and their families, and friends. Participants also described these networks as dynamic and fluid, changing based on care needs and care partners’ availability and skills. Identifying the range of support Veterans receive from family, paid aides, and their community may better help medical teams understand often overlooked community supports and relationships, identify care gaps and tailor home and community-based services where they are most effective and needed.

DETERMINANTS OF INFORMAL CARE TRAJECTORIES IN ENGLAND

Abstract In the context of an ageing population, combined with long-standing challenges in the delivery of formal social care for older people, unpaid caregivers play a key role in promoting the quality of life of older people and their extended families and ensuring that needs for care and support are met. Although many studies have provided snapshots of informal care provision, few so far have examined longitudinal patterns of informal care provision among older people. This paper aims to describe caregiving trajectories in later life and to examine how socioeconomic, demographic, and health characteristics of older adults relate to these patterns (including needs and enabling factors). Using six waves of the English Longitudinal Study of Ageing, we conduct latent trajectory analysis to cluster people’s diverse trajectories into a finite number of groups. The intensity of informal care provision is also considered when identifying longitudinal trajectories. Preliminary results show five distinct trajectories of informal care provision (including those who never provide informal care, those who provide sporadic informal care, those with increasing and decreasing commitment to care provision, and those who care throughout). Gender, age, health, income, living arrangements, and family compositions all relate to long-term trajectories of informal care, with younger married women in good health more likely to provide informal care throughout. Support should be provided to this group of caregivers, given that engagement in long-term caregiving might be detrimental to mental health.

UNPAID CAREGIVERS’ PROCESS OF COLLABORATING DURING OLDER ADULT HOSPITAL TO HOME TRANSITIONS

Abstract Unpaid/family caregivers often provide support critical to older adult hospital to home transitions, but commonly lack time and preparation for their role. There is limited evidence regarding important collaboration and resources for caregivers during the transition. The objective of this grounded theory study was to examine caregivers’ process of collaborating with others during older adult hospital to home transitions. Interviews were conducted with unpaid caregivers of adults aged 60 and older and recently discharged from a medical/surgical unit at a large Midwestern teaching hospital, were audio-recorded, and transcribed verbatim. Data were analyzed using open, axial, and selective coding. Caregiver participants (N = 16) included spouses (n = 8), friends (n = 4), children (n = 3), and siblings (n = 1) of an older adult transitioning from hospital to home, were mostly female (n=14), and all were white, non-Hispanic. A conceptual model was developed which illustrates participants’ process of collaborating with a caregiving team, providers, networks, and other resources to support themselves and their older person. The process began with the participants taking on and identifying their role, and ultimately led to either supporting their older person’s progress towards independence or providing long-term caregiver support. Conditions, including finances, caregiver health, expectations, proximity, and availability, impacted the collaborative process. Consequences varied based on participants’ approach to caregiving, such a team versus individual approach. Implications include opportunities to promote active engagement of caregivers in the transition process and facilitation of a team-based approach to supporting the older person and caregivers.

Differences in Dementia Caregiver Distress Based on Caregiver Gender and Care Recipient Neuropsychiatric Symptoms

AbstractBackgroundOur healthcare system relies on unpaid family caregivers (e.g., spouses) for care of individuals with Alzheimer’s disease and related dementias (ADRD). Several caregiver and care recipient characteristics are known to be associated with caregiver burden and psychological outcomes in dementia caregivers. Research suggests that caregiver emotional distress is higher among women versus men, and that it increases with elevated care recipient neuropsychiatric symptoms (NPS). However, it is unclear whether gender differences in caregiver distress are independent of care recipient characteristics.MethodCaregivers completed the Neuropsychiatric Inventory‐ Questionnaire (NPI‐Q). Presence of NPS in care recipients was summed across 12 NPI‐Q domains. Using one‐way analyses of covariance (ANCOVAs), we assessed how caregiver gender (woman/man) and care recipient NPS are associated with caregiver burden (Zarit Burden Interview), anxiety (Geriatric Anxiety Index), quality of life (WHO‐5 Well‐Being Index), preparedness for caregiving (Preparedness for Caregiving Scale), and self‐efficacy (General Self‐Efficacy Scale) in a sample of 112 unpaid family caregivers. Covariates included caregiver age and co‐living status. Bonferroni corrections were used to adjust for multiple comparisons. The sample was comprised of 73.2% women with a mean age of 64.6 ± 12.2 years. Caregivers were primarily spouses (68.5%) and daughters (20.7%) of care recipients.ResultRelative to men caregivers, women caregivers reported higher levels of burden (F(1,103) = 24.4, p<.005) and anxiety (F(1,103) = 8.60, p<.005) and lower quality of life (F(1,103) = 9.85, p <.005). Caregivers who rated their care recipients as having more NPS also reported greater burden (F(1,103) = 27.2, p<.005), higher anxiety (F(1,103) = 26.0, p<.005), and lower quality of life (F(1,103) = 34.9, p <.005). There were no significant interactions between gender and NPS. Gender and presence of NPS were not associated with caregivers’ preparedness for caregiving or general self‐efficacy.ConclusionWhile women and men caregivers in this sample reported similar levels of preparedness and self‐efficacy, women endorsed greater levels of emotional distress in the form of caregiver burden, anxiety, and decreased quality of life. Across caregiver gender, age, and co‐living status, NPS in care recipients predicted poor psychosocial outcomes in our sample. Our data suggest the need for interventions to support women caregivers, and mitigate the burden associated with neuropsychiatric disturbances.

Creating National Dementia Caregiver Profiles: A Pilot Study

AbstractBackgroundThere will be an estimated 1 million people living with dementia (PLWD) in Canada in 2031, with a further 613,500 Canadians thrust into the role of caregiver to support them. These unpaid caregivers, who tend to be spouses or adult children, shoulder significant physical, mental, emotional, and financial burdens while caring for their loved ones. Yet there is almost no information available nationally on caregivers of people living with dementia and their needsMethodThe First Link® program by the Alzheimer Society offers tailored support and connection to caregivers reaching ∼200,000 clients nationally. Consistent quantitative data will be collected from 30,000 individuals across 5 pilot provinces. The pilot recruitment ensures representation and inclusivity of all communities served by the Society. A framework and data set were agreed to through a collaborative community of practice approach engaging provincial Societies, subject matter experts and PLWD. Data sharing agreements were established for automated, secure, de‐identified data transfers into a centralized data repository.ResultThe framework includes a common dataset with demographic (race, ethnicity, gender identity, sexual identity), health status, level of stress/caregiver burden, confidence/preparedness to deliver care, quality of life and connections to local supports. Through an individualized tailored approach, each pilot site receives training in consistent data collection processes as well as equity, diversity, inclusion and belonging sensitivity training. This approach allowed staggered onboarding while ensuring all front‐line staff are trained for longitudinal data collection with 100% uptake. The next step will be engagement to develop caregiver profiles that highlight demographic characteristics, insights into current supports, and priorities for future programming for this population, and allow for subgroup analysis that provides further information on the different sizes of each provincial site, as well as styles of First Link® delivery, healthcare connectedness, and geography.ConclusionOver time, this comprehensive dataset will provide insight into the effectiveness of caregiver resources that are currently being provided (e.g., public education, community support groups, crisis support), including ease of access for caregivers, and establish a Canada‐wide surveillance system for caregivers of PLWD

P137: Cost Considerations of Untreated Agitation: Direct, Indirect, and Intangible

OBJECTIVE:In the past decade, researchers and advocates have taken important steps toward understanding the full costs of Alzheimer’s disease and related dementias. However, our current approach to framing these costs does not fully consider the behavioral symptoms of dementia, notably agitation. Agitation in Alzheimer’s disease contributes to negative social and financial outcomes for people with the condition, their care partners, and health systems. When left untreated, the negative impact of these outcomes is exacerbated, yet the full scale of this impact is unknown. “Cost Considerations of Untreated Agitation” seeks to propose a framework to help in evaluating the variables that impact these costs.METHODS:We created a model that investigates each stage of Alzheimer’s disease with agitation. This model assesses direct, indirect, and intangible costs of the disease. Direct costs include professional caregiving, non-pharmacological intervention, nursing home costs, healthcare professional consultations, and hospitalizations. Indirect costs included loss of income and value of unpaid caregiving. Intangible costs include the mental health impact of agitation on individuals living with Alzheimer’s and their care partners. Additionally, we used quality-adjusted life years to measure disease burden and health outcomes. Finally, we leveraged qualitative research to overlay the experience of care partners and individuals with lived experience to bring their voice to this work.RESULTS:Results are a tentative framework and describe what additional research and input is necessary in order to create a version with which one can assess the comprehensive costs of untreated agitation in Alzheimer’s. This framework will include perspectives and feedback from individuals with lived experience, care partners, and key opinion leaders in Alzheimer’s research from across the world.CONCLUSION:Agitation has severe consequences on individuals, families, and health systems. Oftentimes one of the first symptoms of Alzheimer’s or dementia, agitation can increase the caregiving responsibilities, trigger placement into nursing homes, and cause severe emotional and physical toll on care partners. We cannot understand the full costs of dementia or AD until we account for untreated agitation vis-à-vis a multi-symptom assessment, therefore an accepted framework is necessary in order to fully consider the costs of untreated agitation.

Impact of tardive dyskinesia on patients and caregivers: a survey of caregivers in the United States

BackgroundTardive dyskinesia (TD) has a multidimensional impact on patients with TD and, as importantly, their caregivers. An online survey was developed and administered to assess patient and caregiver burden of TD. Survey participants were unpaid caregivers for patients with diagnoses of TD and schizophrenia, bipolar disorder, and/or major depressive disorder. Overall, 162 caregivers rated the 7-day impact of TD on the physical, psychological, and social functioning of patients and the impact of TD on these domains in their own lives and in their professional lives.ResultsAcross physical, psychological, and social domains, most caregivers (82.7%) reported that TD had severe impact on the cared-for patients, and 23.5% reported severe impact of TD in their own lives. Caregivers experienced 46.4% activity impairment, and caregivers who were employed (n = 136) experienced 49.5% overall work impairment because of TD-related caregiving.ConclusionsThese results suggest that TD imposes substantial burden for both caregivers and patients.