Caregiver Assessment Research Articles

Caregiving burnout of community-dwelling people with dementia in Hong Kong and New Zealand: a cross-sectional study

BackgroundInformal caregiving for people with dementia can negatively impact caregivers’ health. In Asia-Pacific regions, growing dementia incidence has made caregiver burnout a pressing public health issue. A cross-sectional study with a representative sample helps to understand how caregivers experience burnout throughout this region. We explored the prevalence and contributing factors of burnout of caregivers of community-dwelling older people with dementia in Hong Kong (HK), China, and New Zealand (NZ) in this study.MethodsAnalysis of interRAI Home Care Assessment data for care-recipients (aged ≥65 with Alzheimer’s disease/other dementia) who had applied for government-funded community services and their caregivers was conducted. The sample comprised 9976 predominately Chinese in HK and 16,725 predominantly European in NZ from 2013 to 2016. Caregiver burnout rates for HK and NZ were calculated. Logistic regression was used to determine the adjusted odds ratio (AOR) of the significant factors associated with caregiver burnout in both regions.ResultsCaregiver burnout was present in 15.5 and 13.9% of the sample in HK and NZ respectively. Cross-regional differences in contributing factors to burnout were found. Care-recipients’ ADL dependency, fall history, and cohabitation with primary caregiver were significant contributing factors in NZ, while primary caregiver being child was found to be significant in HK. Some common contributing factors were observed in both regions, including care-recipients having behavioural problem, primary caregiver being spouse, providing activities-of-daily-living (ADL) care, and delivering more than 21 h of care every week. In HK, allied-health services (physiotherapy, occupational therapy and speech therapy) protected caregiver from burnout. Interaction analysis showed that allied-health service attenuates the risk of burnout contributed by care-recipient’s older age (85+), cohabitation with child, ADL dependency, mood problem, and ADL care provision by caregivers.ConclusionsThis study highlights differences in service delivery models, family structures and cultural values that may explain the cross-regional differences in dementia caregiving experience in NZ and HK. Characteristics of caregiving dyads and their allied-health service utilization are important contributing factors to caregiver burnout. A standardized needs assessment for caregivers could help policymakers and healthcare practitioners to identify caregiving dyads who are at risk of burnout and provide early intervention.

QUANTITATIVE EVALUATION OF AN EMPOWERMENT PROGRAMME FOR COMMUNITY CAREGIVERS TO FACILITATE HIV AND AIDS PATIENTS’ ADHERENCE TO ANTIRETROVIRAL TREATMENT

This study is based on Intervention Research, where initially a literature study and a needs assessment of community caregivers regarding the content of an empowerment programme for caregivers to facilitate HIV and AIDS patients’ adherence to antiretroviral treatment, were undertaken. From these results an empowerment programme for caregivers was developed. In this article the evaluation of the programme will be reported on by means of quantitative measurement. An experimental design was utilised with both groups comprising of 12 caregivers with a pre-test, post-test and post-post-test. The results of the measurement indicated that the community caregivers were empowered and that such an empowerment programme is needed.

Assessment of children's and caregivers' preferences for treatments for escape-maintained problem behavior.

This study assessed children's and caregivers' preferences for various arrangements of negative reinforcement, including differential negative reinforcement of an alternative behavior (DNRA), noncontingent escape (NCE), and escape extinction. In the first treatment comparison, the DNRA and NCE treatments similarly decreased problem behavior, but all 3 children preferred DNRA. By contrast, 3 of 4 caregivers preferred escape extinction, likely due to increased compliance in this condition. In a second treatment comparision with 1 child, a multiple schedule and then a chained schedule were introduced to increase the practically of the initial DNRA treatment. The child continued to prefer the treatment with contingent reinforcement in both comparisons, and his caregivers preferred the chained schedule. Results further support the selection of treatments that include contingent reinforcement, and the evaluation serves as a model for progressing through treatment options until child and caregiver preferences align.

Effectiveness of personalized music systems to influence neuropsychiatric symptoms associated with dementia: A quasi-experimental study

ContextStudies have shown that music can improve the neuropsychiatric symptoms in people with dementia. Personalized music has the greatest impact. However, people with dementia in residential care rarely listen to personalized music; in doing so, they themselves as well as their caregivers pass up the positive effects associated with it. As a result, customizable music systems have been developed that allow people with dementia to listen to their favorite music. AimTo determine the effectiveness of personalized music systems on the neuropsychiatric symptoms of people with dementia in residential care and the perceived distress of caregivers. Method14 residents heard personalized music during personal care for eight weeks. Outcomes were derived from pre-post-follow up assessments of residents' neuropsychiatric symptoms and caregivers' distress using the Neuropsychiatric Inventory Questionnaire (NPI-Q). The frequency of the music systems' usage was recorded in log files. A control group of 14 residents received standard care. ResultsCaregivers used the music systems among the residents with varying frequency. During the intervention, an increasing trend of the severity value of apathy was observed, while the severity values of delusions and nighttime disturbances tended to decrease. However, the trends did not reach statistical significance. Caregivers' perceived distress was not affected. ConclusionA practicable solution for providing personalized music to people with dementia in residential care was tested. Possible positive effects were observed for delusions and nighttime disturbances in people with dementia, but a larger study will be required to verify these observations.

Physical and Psychological Health Interdependence Among Dyads in Hematological Cancer.

Hematological cancer impacts both patients and their caregivers. Although only patients experience direct physical effects from cancer, both patients and caregivers experience psychological effects from cancer-related stressors. Theories suggest that patient-caregiver dyads, although experiencing individual effects from cancer, may also indirectly affect one another's health. This is called interdependence. This study investigated physical and psychological health interdependence among patient-caregiver dyads facing hematological cancer, and whether their relationship quality was a moderator of interdependence. Thirty patient-caregiver dyads were assessed for their self-reported physical function, anxiety, and depression using the Patient-Reported Outcomes Measurement Information System and relationship quality using the Mutuality Scale. Data were analyzed using the Actor Partner Interdependence Model, a dyadic data methodology for estimating interdependence. Individual physical and psychological health were related within both patients and caregivers. Patients and caregivers did not significantly differ in their reported depression, anxiety, or mutuality. Partner effects were detected among caregivers' anxiety and patients' physical function and depression. Mutuality did not moderate partner effects. Findings suggest that health interdependence is present among patients with hematological cancer and their caregivers. In addition, there is a strong link between physical and psychological health within individuals, regardless of role. Healthcare teams should consider dyadic assessment in their cancer care plans to identify risks for health decline in patients with hematological cancer and their caregivers. Assessment of caregivers, especially their anxiety levels and physical health, may yield integral information about the patients' physical and psychological health status.

Suicide Risk in the First Year Following Dementia Diagnosis: A National Study of U.S. Older Adults

<h3>Introduction</h3> Many aging adults fear developing Alzheimer's disease or a related dementia (ADRD). After being diagnosed with ADRD, feelings of loss, anger, and uncertainty are common. At a time when the U.S. suicide rate among older adults has accelerated and the prevalence of ADRD is increasing, research is needed to quantify suicide risk in persons with newly diagnosed dementia and to identify patient characteristics that are associated with short-term risk for suicide. Past research is mostly limited to small samples with cross-sectional or case series designs. Prior cohort studies primarily come from Denmark or Asia and are limited by narrowly selected samples and inconsistent accounting for time since dementia diagnosis. We present results from a U.S. national study of suicide risk in adults aged >65 years during the first year following newly diagnosed dementia. Competing risk regression was used to identify risk factors of suicide. Standardized mortality ratios (SMRs) were calculated to quantify suicide risk using the U.S. Compressed Mortality File. <h3>Methods</h3> We extracted a cohort of adults aged >65 years with newly diagnosed ADRD (2011-2016) from Medicare claims linked to the National Death Index. After identifying patients with an ADRD diagnosis on an outpatient or inpatient claim, we limited the cohort to those without any claim for an ADRD diagnosis in the prior 12 months. Dementia included Alzheimer's, vascular, Lewy bodies, frontotemporal, or unspecified. Suicide was defined as cause of death coded as intentional self-injury/suicide (ICD-10 codes X60-X84, Y87.0, U03). Recent mental health and substance use disorders were defined as >1 inpatient or >2 outpatient diagnoses within 180 days prior to index ADRD diagnosis date. Severity of medical comorbidity was evaluated with the Elixhauser Comorbidity Scale, excluding mental health, substance use, and neurological disorders. Chronic pain was classified using a previously developed research algorithm for administrative data. Crude suicide rates per 100,000 person-years were estimated for the first year after ADRD diagnosis. Time-to-event analysis for suicide mortality was conducted using Fine and Gray's competing risks analysis. <h3>Results</h3> Of the 2,667,987 older adults with ADRD, 62.2% were women, 82.5% were non-Hispanic White, and 46.5% aged 85+ years. The suicide rate was 26.42 per 100,000 person-years. After adjusting for demographic variables, rural residence, recent mental health and substance use disorders, and chronic pain conditions were associated with increased risk. Relative to the general population, the overall SMR for suicide was 1.54 (95%CI=1.42, 1.65) with the highest risk among ADRD adults aged 65-74 years (SMR=3.43, 95%CI=2.96, 3.89). Approximately half of all suicide deaths occurred within 90 days. <h3>Conclusions</h3> In this national U.S. study of over two million older adults, we found that the number of observed suicide deaths within the first year of dementia diagnosis was approximately 54% higher than expected when compared to the general geriatric population. The risk of suicide mortality was particularly elevated among adults aged 65-74 years and within the first 90 days of dementia diagnosis. Our study identified a number of specific factors associated with higher risk of suicide, which may assist health care providers in decisions regarding appropriate, potentially life-saving care during the critical period following initial diagnosis of dementia. Limitations include our inability to validate the accuracy of dementia diagnoses in Medicare claims data, which may not include all cases of dementia. Second, our analyses did not include Medicare Advantage enrollees or older adults who receive health care from the Veterans Health Administration. Third, information was not available concerning additional suicide risk factors, such as other proximal stressful life events, social disconnection (e.g., marital status, loneliness), and access to lethal means. Third, the data used to estimate SMRs were based on mortality patterns from January 1, 2011, to December 31, 2016, which was a period marked by increasing U.S. suicide rates for males and females aged 65-74 years, and may not generalize to other epochs. Finally, competing mortality risks may complicate detection of and contribute to underestimated counts of suicide deaths in older adults, particularly in the >75 years of age group. The clinical and policy implications of these results highlight the importance of suicide risk screening and support at the time of diagnosing incident dementia, particularly for patients who are younger (i.e., aged 65-74 years) and for those with a history of chronic pain or mental health or substance use disorders. These findings also support mental health care, thorough assessment of patient and caregiver needs, initiating referrals for services and supports, and lethal means restriction and safety counseling during the critical transitional period following diagnosis of dementia. <h3>Funding</h3> This research was supported by grants from NIMH (R01MH107452-02S1) and American Foundation for Suicide Prevention (YIG-0-148-19).

Receipt of Posthospitalization Care Training Among Medicare Beneficiaries’ Family Caregivers

Medicare conditions of participation require hospitals to provide training to family and unpaid caregivers when their support is necessary to enact the postdischarge care plan. However, caregivers often report feeling unprepared for this role. To describe the characteristics of caregivers who assist with posthospitalization care transitions and assess the prevalence of and factors associated with receipt of adequate transitional care training. This cross-sectional study analyzed data from the 2017 National Health and Aging Trends Study and its linked National Study of Caregiving, surveys of Medicare beneficiaries and their family and unpaid caregivers. The present study included family caregivers for community-living Medicare beneficiaries 65 years or older with disabilities. Data analysis was performed from June to September 2020. Characteristics of family caregivers by whether they assisted during a posthospitalization care transition in the year preceding the survey interview. Unweighted frequencies and weighted percentages, as well as the results of weighted Pearson and Wald tests for differences between groups, are reported. Receipt of the training needed to manage the older adult's posthospitalization care transition (hereafter referred to as adequate transitional care training) as a function of individual caregiver characteristics was modeled using multivariable, weighted logistic regression. Of 1905 family caregivers, 618 (58.9%) were 60 years or older, 1288 (63.8%) were female, and 796 (41.7%) assisted with a posthospitalization care transition. Those who assisted with a posthospitalization care transition were more likely to report experiencing financial (154 [18.3%] vs 123 [10.1%]; P < .001), emotional (344 [41.3%] vs 342 [31.1%]; P < .001), and physical (200 [22.2%] vs 170 [14.6%]; P = .001) difficulty associated with caregiving. Among caregivers who assisted during a posthospitalization care transition, 490 (59.1%) reported receiving adequate transitional care training. Caregivers were less likely to report receiving adequate training if they assisted an older adult who was female (316 [62.3%] vs 227 [73.2%]; P = .02), Black (163 [14.0%] vs 121 [19.8%]; P = .02), or enrolled in Medicaid (127 [21.2%] vs 90 [31.9%]; P = .01). After adjusting for older adult characteristics, caregivers were half as likely to report receiving adequate training if they were Black (adjusted odds ratio [aOR], 0.52; 95% CI, 0.31-0.89) or experienced financial difficulty (aOR, 0.50; 95% CI, 0.31-0.81). Caregivers were more than twice as likely to report receiving adequate training if they were female (aOR, 2.44; 95% CI, 1.65-3.61) or spoke with the older adult's clinician about his or her care in the past year sometimes or often vs never (aOR, 1.93; 95% CI, 1.19-3.12). In this cross-sectional study, caregivers were less likely to receive adequate transitional care training if they were Black; experienced financial difficulty; or cared for a Black, female, or Medicaid-enrolled older adult. These findings suggest that changes to the discharge process, such as using standardized caregiver assessments, may be necessary to ensure equitable support of family caregivers.

Opening Minds through Art: A preliminary study evaluating the effects of a creative-expression program on persons living with dementia and their primary care partners.

For people living with dementia and their care partners, a decline in the ability to effectively communicate can cause significant distress. However, in recent decades, the arts have emerged as an effective care modality in fostering communication and expression for those with declining verbal skills and memory loss. Opening Minds through Art (OMA) is a national initiative that empowers people living with dementia by facilitating creative expression and social engagement through art-making in partnership with trained college student volunteers. Research has demonstrated that participation in the program benefits quality of life for those living with dementia and also improves student attitudes toward dementia. To date, however, no research has involved primary care partners. We implemented an OMA program at three residential care homes in State College, Pennsylvania, with residents cocreating artwork alongside primary care partners (i.e., a family member or primary medical personnel) over the course of four art-making sessions. We evaluated the effects of participation on quality of life and care partner burnout through pre-post use of "emotional thermometers" (measuring levels of distress, anxiety, depression, anger, and perceived quality of life), the National Institute of Health NIH emotional support scale, and the NIH caregiver assessment (care partner burnout). For people living with dementia, participation significantly increased perceived quality of life while decreasing distress, anxiety, depression, and anger (p < .01; n = 12) after each class; however, the intervention did not significantly impact perceived emotional support. For care partners, participation significantly lowered post-intervention measures of burnout and self-rated stress (p < .01; n = 9). This preliminary study suggests that a structured art-based activity appears to positively impact acute mood for patients and, importantly, decrease care partner burnout. Future research can bring more robust methods to bear in determining how to use OMA and other arts interventions to optimize social support for people living with dementia and their care partners.

Smarthealth technology study protocol to improve relationships between older adults with dementia and family caregivers.

The aim of this study is to develop a Smarthealth system of monitoring, modelling, and interactive recommendation solutions (for caregivers) for in-home dementia patient care that focuses on caregiver-patient relationships. This descriptive study employs a single-group, non-randomized trial to examine functionality, effectiveness, feasibility, and acceptability of the novel Smarthealth system. Thirty persons with Alzheimer's Disease or related dementia and their family caregivers (N=30 dyads) will receive and install Smarthealth technology in their home. There will be a 1-month observation phase for collecting baseline mood states and a 2-month implementation phase when caregivers will receive stress management techniques for each detected, negative mood state. Caregivers will report technique implementation and usefulness, sent via Ecological Momentary Assessment system to the study-provided smartphone. Caregivers will provide daily, self-reported mood and health ratings. Instruments measuring caregiver assessment of disruptive behaviours and their effect on caregivers; caregiver depressive symptoms, anxiety and stress; caregiver strain; and family functioning will be completed at baseline and 3months. The study received funding in 2018 and ethics board approval in 2019. This study will develop and test novel in-home technology to improve family caregiving relationships. Results from this study will help develop and improve the Smarthealth recommendation system and determine its usefulness, feasibility, and acceptability for persons with dementia and their family caregiver. The Smarthealth technology discussed will provide in-home stress reduction resources at a time when older adults may be experiencing increasingly high rates of isolation and anxiety and caregiver dyads may be experiencing high levels of relationship strain. This study was registered with Clinical Trials.gov (Identifier NCT04536701).

Improving evidence-based grouping of transitional care strategies in hospital implementation using statistical tools and expert review

BackgroundAs health systems transition to value-based care, improving transitional care (TC) remains a priority. Hospitals implementing evidence-based TC models often adapt them to local contexts. However, limited research has evaluated which groups of TC strategies, or transitional care activities, commonly implemented by hospitals correspond with improved patient outcomes. In order to identify TC strategy groups for evaluation, we applied a data-driven approach informed by literature review and expert opinion.MethodsBased on a review of evidence-based TC models and the literature, focus groups with patients and family caregivers identifying what matters most to them during care transitions, and expert review, the Project ACHIEVE team identified 22 TC strategies to evaluate. Patient exposure to TC strategies was measured through a hospital survey (N = 42) and prospective survey of patients discharged from those hospitals (N = 8080). To define groups of TC strategies for evaluation, we performed a multistep process including: using ACHIEVE’S prior retrospective analysis; performing exploratory factor analysis, latent class analysis, and finite mixture model analysis on hospital and patient survey data; and confirming results through expert review. Machine learning (e.g., random forest) was performed using patient claims data to explore the predictive influence of individual strategies, strategy groups, and key covariates on 30-day hospital readmissions.ResultsThe methodological approach identified five groups of TC strategies that were commonly delivered as a bundle by hospitals: 1) Patient Communication and Care Management, 2) Hospital-Based Trust, Plain Language, and Coordination, 3) Home-Based Trust, Plain language, and Coordination, 4) Patient/Family Caregiver Assessment and Information Exchange Among Providers, and 5) Assessment and Teach Back. Each TC strategy group comprises three to six, non-mutually exclusive TC strategies (i.e., some strategies are in multiple TC strategy groups). Results from random forest analyses revealed that TC strategies patients reported receiving were more important in predicting readmissions than TC strategies that hospitals reported delivering, and that other key co-variates, such as patient comorbidities, were the most important variables.ConclusionSophisticated statistical tools can help identify underlying patterns of hospitals’ TC efforts. Using such tools, this study identified five groups of TC strategies that have potential to improve patient outcomes.

Family Caregiver Assessment in Primary Care: How to Strengthen the HealthCare Triad?

This editorial comments on the article by Riffin et al. in this issue.

Assessment of Caregiver’s Needs and Burden among Family Caregivers of the Terminally Ill Cancer Patients – A Cross-Sectional Study in a Tertiary Care Hospital of Eastern India

Assessment of Caregiver’s Needs and Burden among Family Caregivers of the Terminally Ill Cancer Patients – A Cross-Sectional Study in a Tertiary Care Hospital of Eastern India

Surgical oncology's overlooked population: a prospective, multi-institutional assessment of family and unpaid caregivers' burden when caring for patients with pancreatic cancer

Surgical oncology's overlooked population: a prospective, multi-institutional assessment of family and unpaid caregivers' burden when caring for patients with pancreatic cancer

Caregiver Burden among Informal Caregivers in the Kerala Palliative Care Program: Development and Validation of the Achutha Menon Centre-Caregiver Burden Inventory.

Background: Family caregivers of bedridden or homebound patients are at risk of adverse physical and psychological outcomes. There is a need for a culturally adapted and valid instrument for measuring caregiver burden in palliative care programs. Objective: To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. Design/Setting: "Caregiver burden" was conceptualized based on literature review and in-depth interviews. Content validity assessment, cognitive interviews, and a cross-sectional survey were used to develop and validate the instrument. The study was set within the primary palliative care program in Kerala, India. Subjects: Ten palliative care professionals and 10 caregivers were engaged for the content validity assessment and cognitive interviews, respectively. The cross-sectional survey was conducted among 221 (males = 21) family caregivers in Kollam district, Kerala. The Institutional Ethics Committee of the Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum reviewed and cleared the study. Measurements: Underlying factors were identified by using principal axis factoring. The corresponding sub-scales and a composite scale were tested for internal consistency, construct validity, reproducibility, floor and ceiling effects, and interpretability. Results: Two factors that explained 29.5% of the variance were extracted. Two sub-scales-consequences of caregiving and lack of financial security-were derived. The final nine-item Likert-type Achutha Menon Centre-Caregiver Burden Inventory (AMC-CBI) had a content validity index of 0.77, Cronbach's alpha of 0.82, and high test-retest reliability (ρ = 0.87, p < 0.001). Conclusion: The AMC-CBI is a valid and reliable instrument for burden assessment of caregivers of patients served by the home-based palliative care program in Kerala, India.

The pattern of hospital-community-home (HCH) nursing in tracheostomy patients with severe traumatic brain injury: Is it feasible?

Tracheostomy is very common in patients with severe traumatic brain injury (TBI), long-term nursing care are needed for those patients. We aimed to evaluate the effects of hospital-community-home (HCH) nursing in those patients. This study was a before-after study design. Patients were divided into control groups (traditional nursing care) and HCH group(HCH nursing care). Tracheostomy patients with severe TBI needing long-term care were included. All patients underwent a two-month long follow-up. Glasgow coma score (GCS), Karnofsky, Self-Anxiety Scale (SAS) from caregiver and Barthel assessment at the discharge and two months after discharge were evaluated. The tracheostomy-related complications were recorded and compared. A total of 60 patients were included. There were no significant differences between the two groups in the GCS, Karnofsky, SAS from caregiver and Barthel index at discharge((all P>.05); the GCS, Karnofsky and Barthel index were all significantly increased after two-month follow-up for the two groups (all P<.05), and the GCS, Karnofsky and Barthel index at two-month follow-up in HCH group were significantly higher than that of the control group(all P<.05), but the SAS from caregiver at two-month follow-up in HCH group was significantly less than that of the control group(P=.009). The incidence of block of artificial tracheal cannula and readmission in HCH group were significant less than that of control group (all P<.05). HCH nursing care is feasible in tracheostomy patients with severe TBI, future studies are needed to further evaluate the role of HCH nursing care.

Family Caregiver Assessment in Primary Care: A Nationwide Survey

Family caregivers play an important role in the healthcare of older adults, but their circumstances, needs, and risks are often unknown to medical professionals. Standardizing how caregivers’ needs are assessed in healthcare delivery can help clinicians design care plans that take caregivers’ capabilities into account and provide targeted recommendations for caregiver support. Despite the potential of caregiver assessment, little is known about its use in primary care practice. The present study surveyed a national random sample of 1,000 U.S. primary care clinicians (physicians, nurses, social workers) to characterize current practices, barriers, and facilitators of caregiver assessment. A total of 231 completed responses were received. A minority of respondents (11%) reported that their practice or clinic had a standardized procedure for caregiver assessment; one in ten (10%) reported that they had personally conducted a caregiver assessment using a standardized instrument in the past year. The most common barriers to caregiver assessment were lack of time (65%), inability to have private discussions with caregivers (36%), lack of access to referral options (30%), inadequate reimbursement (30%), and reluctance of caregivers to discuss their needs (30%). The most frequently endorsed facilitators to aid future implementation included better availability of referral options (77%), easier referral mechanisms (67%), co-location of mental health specialists, care managers, or social workers (65%), and training in how to address caregiver issues (61%). Findings are discussed within the context of emerging healthcare policies and practice initiatives designed to promote caregiver assessment in health care settings.

Initial Translation of a Dementia Caregiver Intervention Into a Mobile Health Application

Caring for a person with dementia is associated with negative outcomes. Few caregiver interventions have been implemented in community settings. Mobile technology is one method for reaching many caregivers. This project translated two empirically-supported interventions for dementia caregivers into a mobile health application. A team of clinical researchers and computer engineers developed an App called CARE-Well (Caregiver Assessment, Resources, and Education) over 6 months. The group worked closely to do the following: 1). translate interventional content to be compatible with a mobile platform; 2). create new materials; 3). determine App components that captured key intervention areas; 4). troubleshoot formatting, technology, and data security; and 5). educate each other about respective areas of expertise. We developed a beta version of the App that included: 1). assessment of caregiver stress and care recipient behavioral problems; 2). psychoeducation; 3). goal diary; 4). managing behavior problems; 5). online message forum; and 6). video library. Several challenges arose during the App development process, such as how to create navigation paths and goal lists based off users’ assessment responses, data storage and usage tracking, enlarging text, and how to ensure privacy and confidentiality in the online message forum. Our experience developing the CARE-Well App showed that translating behavioral interventions into mobile health applications is feasible and dependent upon regular communication among multidisciplinary team members. Next steps for the App include beta testing with dementia caregivers and conducting a pilot randomized trial to determine feasibility for a future trial and its effects on caregiver stress.

Family Caregiver Assessments: What Have We Learned From Assessments Across Populations and Health Conditions?

This symposium will bring together research on assessments of family caregivers for older individuals with different health conditions and discuss the components of effective assessments. Comprehensive characterizations of caregivers are essential due to an increase in the demand on caregivers, and how intense care contexts contribute to the caregiver’s decline in health and diminished capacity to provide quality care. According to Caregiving in the U.S. 2020 (n=1,400), only 13% of caregivers were asked by healthcare professionals what they needed to take care of themselves. Peer-reviewed studies have reported that caregivers are often reluctant to self-identify and to ask for the help that they need for themselves and those in their care. Since supports to caregivers have historically relied on this self-identification, the first presentation (Grace Whiting) will focus on the work NAC has done to build pathways between caregivers and supportive services to increase availability, accessibility, and patient-centeredness. The second presentation (Esther Friedman) will identify and discuss the barriers to fully incorporating family caregivers into the health care team, as well as the solutions for removing barriers. The next two presentations, respectively, will focus on characterizing the prevalence, burden, and unmet needs of caregivers of cancer patients (Erin Kent), and the unmet needs of families of adults with intellectual and development disabilities (Tamar Heller). The final presentation will explore caregiver readiness in dementia care using the Tailored Activity Program (TAP) and how TAP interventionists can use readiness scores to determine caregiver’s capacity (Katherine Marx).

The Influence of Dementia Caregiving Styles on Caregiver Distress and the Person With Dementia’s Quality of Life

Building vertically upon the Stress Process Model, dementia caregivers’ cognitive-behavioral management styles are an understudied area with implications for dyadic care outcomes and tailoring of care interventions. We consider whether membership in five previously classified caregiving styles (Externalizers, Individualists, Learners, Adapters, Nurturers- which vary in their adaptability, dementia understanding, and behavioral management practices) impacts caregivers’ experiences of care-related stress and the quality of life of the person with dementia (PWD). Participants included 100 primary family caregivers for PWDs who were 74% female, 18% non-White, and on average 64 years old. Utilizing linear regressions, each caregiving style was considered as a key predictor (reference: Externalizers- poor understanding, non-adaptable approach, and punitive behavioral strategies) of the Caregiver Assessment of Function and Upset (CAFU) upset score, Neuropsychiatric Inventory (NPI-C) distress scale, Zarit Burden Interview (ZBI), and PWD quality of life (QOL-AD) scale controlling for demographics, care duration, co-residency, and dementia severity. Relative to Externalizers, Nurturers (understanding, adaptability, positive engagements) had less CAFU upset (β=-0.4, p<.01), less NPI-C distress (β=-0.3, p<.05), and greater QOL-AD for the PWD (β=0.4, p<.01). Learners (recognize need to change care approach, attempting adaptability, trial-and-error behavioral care) also showed significantly lower NPI-C distress than Externalizers (β=-0.5, p<.01). Thus caregiving styles with more dementia understanding, adaptability and positive behavioral strategies showed less distress and better PWD QOL. Corresponding with recent dementia care summits calling for identification of caregivers at greatest risk for poor outcomes, targeting and tailoring interventions based on caregiving styles may lead to great public health impact.

Title II: Improving Grants for States and Community Programs on Aging

There are several noteworthy changes to the Improving Grants for States and Community Programs on Aging’s portion of the OAA. The reauthorization adds language requiring data collection on the needs of older adults and specifying additional populations on whom to focus outreach efforts, such as survivors of the Holocaust. The reauthorization also expands what States may fund with Supportive Services grants, adding screening for social isolation and traumatic brain injuries. The Act goes on extend Stated the option of funding programs to address both of these issues. The Act also requires the Assistant Secretary to study the supply and demand of home delivered and congregant meals and make recommendations to address the gap. Finally, there is expansion of the section on Caregiving, including a definition of caregiver assessment and the removal of a limit on funds States can use on support services to family caregivers.