Partner Burden Research Articles

Promoting Physical Activity in Huntington's Disease: Co-Design of a Care Partner Resource.

Clinical guidelines recommend that people with Huntington's disease (HD) should exercise to maintain/improve fitness and motor function, yet physical activity levels remain low in this group. Promotion of physical activity is often via care partners with little evidence that they are supported in this role. The aim was to co-design a resource for care partners of people with HD to support promotion of physical activity. A four-step co-design approach was used to develop a care partner resource. Five care partners took part in an online workshop exploring experiences and the knowledge, support and skills needed by care partners to promote physical activity. A co-design team (n = 7) developed a prototype that was user tested by three people who had attended the workshop. Findings from user testing were used to develop the final resource. An easy to read, image-based prototype was developed that contained tips on planning activity, safety and activity examples. User testing identified the need for grouping of activities suitable for 10, 20, and 30 minutes of available time, information on maintaining and improving activity and re-organization of information to support engagement of activity. A resource for care partners that has been translated into seven languages was developed to promote physical activity. User testing indicated confidence in using the resource and appreciation of the autonomy provided to the person with HD to plan activities. Further work is needed to evaluate the impact of the resource in promotion of physical activity and the impact on care partner burden.

Living alongside military PTSD: A qualitative study of female partners’ experiences with UK Veterans

Introduction: An increased risk of emotional burden in partners of military Veterans with mental health difficulties has been observed. This study aimed to explore the experiences and needs of female partners of Veterans seeking help. Methods: Our sample of eight female partners was drawn from a population of help-seeking Veterans who had received treatment for PTSD. Qualitative data were collected using a semi-structured interview schedule. Results: Super-ordinate themes of challenges faced, desired type of support, and barriers to support were each described by a set of sub-themes. Challenges faced were described with the themes of inequality in relationship, loss of congruence with own identity, volatile environment, and emotional distress and isolation. Desired type of support was described by the themes of practical focus on improving, sharing with fellow experts, and support tailored to the partner. Barriers to support were described by the themes feeling restricted by practical barriers and ambivalence about the involvement of others. Discussion: Interventions to support partners of Veterans with mental health difficulties need to address their individual needs, focus on practical techniques, and consider practical limitations.

Mediating role of care partner burden among dementia care partners during post-hospital transition

Objectives This study examined the mediating role of care partner burden on the relationship between patient clinical factors (i.e. cognition, physical function, and behavioral and psychological symptoms of dementia [BPSD]) and care partner mental health (i.e. anxiety and depression) among dementia care partners at hospital discharge. Method The sample consisted of 431 patient and care partner dyads enrolled in the Family centered Function-focused Care (Fam-FFC) study; ClinicalTrials.gov identifier NCT03046121. Mediation analyses were conducted to test the role of care partner burden on the associations between patient clinical factors, and care partner anxiety and depression. Results Mediation models demonstrated that care partner burden partially mediated the relationship between patient physical function and care partner anxiety and depression, as well as patient BPSD and care partner anxiety and depression. Conclusion Findings highlight the need for clinicians and service providers to implement comprehensive strategies that address both patient clinical factors (i.e. physical function and BPSD) and care partner burden, to optimize care partner mental health outcomes during post-hospital transition.

Love beyond gluten: self-esteem, illness identity, and social support in romantic rejection concerns among adolescents with celiac disease.

Fear of stigmatization, high perceived partner burden, or refraining from self-disclosure may manifest in romantic rejection concerns among adolescents with celiac disease (CD), potentially impacting their health-related quality of life (HRQOL). This study examined the prevalence, predictors, and consequences of romantic rejection concerns among adolescents and young adults with CD. A cross-sectional online survey was conducted among 165 German adolescents and young adults (aged 14-22) with self-reported CD. Participants completed measures of romantic rejection concerns, illness identity, self-esteem, peer support, and CD-specific HRQOL. Participants reported moderate levels of concerns about the impact of CD on their romantic relationships, with no significant gender differences. Participants involved in romantic relationships expressed lower concerns of rejection, but similar preference for a "gluten-free partner." Hierarchical regression analysis revealed that higher illness acceptance and peer support predicted lower rejection concerns. Significant interactions emerged between self-esteem and illness acceptance, and between self-esteem and peer support. Higher illness acceptance predicted fewer rejection worries only among those with high self-esteem, while peer support played a mitigating role only for those with low self-esteem. Romantic rejection concerns significantly predicted lower CD-specific HRQOL across all domains. Anxieties about CD's impact on romantic relationships are prevalent among adolescents and may hinder their HRQOL. The findings highlight the complex interplay between self-esteem, illness identity, and social support in shaping romantic concerns. Targeted interventions focusing on peer support and fostering positive illness identity are recommended to alleviate rejection fears and improve HRQOL among youth with CD.

Novel computerized measure of apathy associates with care partner burden and instrumental activities of daily living in Parkinson's disease

BackgroundImpairment in goal-directed behavior (GDB) contributes to apathy, a prevalent syndrome in Parkinson's disease (PD). The Philadelphia Apathy Computerized Task (PACT) is a performance-based measure of GDB that may be less confounded by reduced patient insight, cognitive impairment, and care partner burnout. ObjectiveTo examine how the PACT is related to patient function and care partner burden. MethodsPD patients with normal cognition (n = 19) or mild cognitive impairment (n = 14) and their care partners were recruited. Participants completed the PACT, a computerized paradigm consisting of subtasks specific to each component of GDB: initiation, motivation, and planning. Care partners completed the Zarit Burden Interview (ZBI) and the Penn Parkinson's Daily Activities Questionnaire (PDAQ-15). The associations between mean latency on each PACT subtask and ZBI and PDAQ-15 scores, respectively, were tested using Spearman's rank correlation coefficients. Significant associations were further delineated using multivariate regression with the following covariates: age, years of education, MoCA score, daily levodopa equivalency dose, UPDRS Part III score, and GDS-15 score. ResultsWorse performance on the planning subtask of the PACT related to higher ZBI scores and lower PDAQ-15 scores when adjusting for covariates. Decreased initiation was associated with higher ZBI and decreased motivation with lower PDAQ-15. ConclusionsSpecific components of the PACT are related to patient and care partner outcomes in PD. The main advantage of this measure is to minimize the confounds of poor insight and care partner distress. We propose future research directions to refine the PACT for potential use in research and clinical practice.

Determinants of care partner burden in atypical Parkinsonian syndromes: A retrospective, multi-center analysis

IntroductionProgressive supranuclear palsy (PSP), corticobasal syndrome (CBS), and multiple system atrophy (MSA) are rare neurodegenerative diseases associated with rapid decline and require complex symptom management. Caregiving responsibilities significantly increase with progression of these atypical Parkinsonian syndromes, yet care burden in these syndromes has not been researched extensively to date. MethodsThe Zarit Burden Interview (ZBI) was used to assess burden in care partners of patients clinically diagnosed with PSP, CBS, or MSA seen in specialty interdisciplinary clinics at two academic movement disorders centers. Univariable and multivariable regression analyses were performed to evaluate cross-sectional demographic and clinical determinants of care partner burden. ResultsA total of 139 care partners completed the ZBI (59.0% PSP, 28.1% MSA, 12.9% CBS). Cohorts at both medical centers were similar across all variables. Female gender of both patients and care partners was independently associated with higher ZBI scores. Additionally, MSA-Parkinsonian type was significantly associated with lower total care partner burden compared to PSP and CBS. ConclusionSeveral determinants of higher care partner burden in atypical Parkinsonian syndromes were identified, particularly female gender and diagnosis. Healthcare professionals can consider this information when assessing individualized needs of patients and care partners and referring to disease-specific resources. Additionally, this study’s methods and results highlight the potential to further explore interdisciplinary care as a means of comprehensive evaluation and support for those with atypical Parkinsonism.

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

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

Feasibility of cognitive assessments post‐emergency department (ED) discharge: A longitudinal pilot study of Medicare‐enrolled adults 65 +

AbstractBackground50% of US adults living with Alzheimer’s disease and related dementias (ADRD) never receive a formal diagnosis. This compromises the wellbeing of persons living with ADRD and their care partners, increases health services utilization, and the costs‐of‐care. Wider screening and assessment for ADRD may increase access to supportive care that prevents or delays disease progression, ameliorates care partner burden, and alleviates costs.MethodA sample of Medicare‐enrolled individuals 65+ (n = 149) presenting to the Oregon Health & Sciences University (OHSU) emergency department (ED) in Portland, Oregon between May 2022 and January 2023 were recruited and administered the Telephone Interview for Cognitive Status (TICS) up to one‐month post‐discharge. Study participants were queried about their physical health via the modified cumulative illness rating scale (M‐CIRS), while their cognitive health was assessed via the PROMIS Cognitive Measure Questions on Mental Clarity. Care utilization patterns were measured via review of subjects’ electronic health records (EHR) for three years prior to study enrollment date focusing on total hospitalizations, ED visits, and primary care (PC) visits. These reviews measured health care utilization across three groups comparing individuals with (A) un‐diagnosed cognitive impairment with (B) cognitively healthy individuals, and (C) individuals with a formal ADRD diagnosis.ResultStudy enrollment rate was 25.8% (n = 149) of individuals meeting eligibility requirements. Enrollment was limited to patients with an OHSU PC affiliated provider excluding the majority (ineligible n = 1681, 74%) of Medicare‐enrolled ED patients (total ED users available for recruitment was n = 2,258). Of those contacted, 10% declined participation due to lack of interest and 4% declined due to cognitive or health restraints. Time to administer instrument suite ranged between 26‐33 minutes.ConclusionMedicare‐enrolled adults 65+ recently discharged from the ED appear to be an acceptable population to administer cognitive assessments. Findings during the recruitment process show success at enrolling this population to the study and administration times did not appear burdensome in duration for those enrolled. This study provides preliminary evidence supporting a focus on older ED patients to administer cognitive assessments, linking outcomes to the EHR, and ultimately providing a platform for future research on the impact of under‐diagnosed ADRD on health outcomes and utilization.

Neuropsychiatric Symptoms and Microglial Activation in Patients with Alzheimer Disease

Neuropsychiatric symptoms are commonly encountered and are highly debilitating in patients with Alzheimer disease. Understanding their underpinnings has implications for identifying biomarkers and treatment for these symptoms. To evaluate whether glial markers are associated with neuropsychiatric symptoms in individuals across the Alzheimer disease continuum. This cross-sectional study was conducted from January to June 2023, leveraging data from the Translational Biomarkers in Aging and Dementia cohort at McGill University, Canada. Recruitment was based on referrals of individuals from the community or from outpatient clinics. Exclusion criteria included active substance abuse, major surgery, recent head trauma, safety contraindications for positron emission tomography (PET) or magnetic resonance imaging, being currently enrolled in other studies, and having inadequately treated systemic conditions. All individuals underwent assessment for neuropsychiatric symptoms (Neuropsychiatry Inventory Questionnaire [NPI-Q]), and imaging for microglial activation ([11C]PBR28 PET), amyloid-β ([18F]AZD4694 PET), and tau tangles ([18F]MK6240 PET). Of the 109 participants, 72 (66%) were women and 37 (34%) were men; the median age was 71.8 years (range, 38.0-86.5 years). Overall, 70 had no cognitive impairment and 39 had cognitive impairment (25 mild; 14 Alzheimer disease dementia). Amyloid-β PET positivity was present in 21 cognitively unimpaired individuals (30%) and in 31 cognitively impaired individuals (79%). The NPI-Q severity score was associated with microglial activation in the frontal, temporal, and parietal cortices (β = 7.37; 95% CI, 1.34-13.41; P = .01). A leave-one-out approach revealed that irritability was the NPI-Q domain most closely associated with the presence of brain microglial activation (β = 6.86; 95% CI, 1.77-11.95; P = .008). Furthermore, we found that microglia-associated irritability was associated with study partner burden measured by NPI-Q distress score (β = 5.72; 95% CI, 0.33-11.10; P = .03). In this cross-sectional study of 109 individuals across the AD continuum, microglial activation was associated with and a potential biomarker of neuropsychiatric symptoms in Alzheimer disease. Moreover, our findings suggest that the combination of amyloid-β- and microglia-targeted therapies could have an impact on relieving these symptoms.

A Literature Review on the Burden of Alzheimer's Disease on Care Partners.

Many individuals with Alzheimer's disease (AD) are dependent on nonprofessional care partners. Providing informal care can result in emotional, physical, and financial burdens; however, there is a need for a better understanding of the impact of AD on care partners to support the clinical and economic assessment of potential new treatments. We conducted a literature review to evaluate the burden experienced by care partners of individuals with AD. Electronic screening and supplementary searches identified studies published from 2011 to 2022 describing the association between AD and the quality of life (QoL) and physical health of care partners, and the economic or financial burden of AD. Following electronic screening, 62, 25, and 39 studies were included on care partner burden, cost, and healthcare resource use in AD, respectively. Supplementary searches identified an additional 32 studies, resulting in 149 unique studies. These studies showed that care partners of individuals with AD report moderate to severe burden. Higher burden and lower QoL were observed in those caring for individuals with more severe AD. Care partners of individuals with AD experience higher burden, lower QoL, and higher levels of stress, depression, and anxiety than those without caring responsibilities. Informal care costs increased with AD severity and accounted for the greatest proportion of overall societal cost. Care partners of individuals with AD experience emotional and economic burden, which increases with AD severity. These impacts should be quantified comprehensively in future studies and captured in economic evaluations of AD interventions.

Lecanemab Clarity AD: Quality-of-Life Results from a Randomized, Double-Blind Phase 3 Trial in Early Alzheimer’s Disease

BackgroundLecanemab is a humanized IgG1 monoclonal antibody binding with high affinity to amyloid-beta protein protofibrils. In phase 3 development, lecanemab has been shown to reduce markers of amyloid in early Alzheimer’s disease and reduce decline on clinical endpoints of cognition and function at 18 months.ObjectivesTo describe the health-related quality-of-life (HRQoL) results from Clarity AD which were exploratory outcomes in this trial.DesignClarity AD was an 18-month, multi-center, doubleblind, phase 3 trial.SettingEarly Alzheimer’s disease.ParticipantsIndividuals 50–90 years of age with a diagnosis of mild cognitive impairment or mild dementia due to Alzheimer’s disease and positron emission tomography or cerebrospinal fluid evidence of cerebral amyloid accumulation.InterventionPlacebo or lecanemab 10-mg/kg IV biweekly.MeasurementsHRQoL was measured at baseline and every 6 months using the European Quality of Life–5 Dimensions (EQ-5D-5L; by subject) and Quality of Life in AD (QOL-AD; by subject and proxy). Study partner burden was measured using the Zarit Burden Interview (ZBI).ResultsA total of 1795 participants were enrolled (lecanemab:898; placebo:897). At month 18, adjusted mean change from baseline in EQ-5D-5L and QOL-AD by subject showed 49% and 56% less decline, respectively. QOL-AD rated by study partner as proxy resulted in 23% less decline. ZBI adjusted mean change from baseline at 18 months resulted in 38% less increase of care partner burden. Individual HRQoL test items and dimensions also showed lecanemab benefit.ConclusionsLecanemab was associated with a relative preservation of HRQoL and less increase in caregiver burden, with consistent benefits seen across different quality of life scales and within scale subdomains. These benefits provide valuable patient reported outcomes which, together with previously reported benefits of lecanemab across multiple measures of cognition, function, disease progression, and biomarkers, demonstrate that lecanemab treatment may offer meaningful benefits to patients, care partners, and society.

‘There’s no straight line…’ a consumer-informed intervention for FTD family care partners: the STELLA-FTD pilot study

Objectives Behavioral symptoms and communication challenges are particularly apparent in frontotemporal degenerative (FTD) dementias. There is a paucity of psychoeducation programming specifically tailored to the needs of families with FTD. We revised an existing intervention to meet the needs of these families. Methods We used a quasi-experimental approach. In Phase 1, we sought consumer input about an existing intervention. In Phase 2, we modified the intervention based on the qualitative findings from Phase 1 and tested the revised intervention (STELLA-FTD) for feasibility, acceptability and early-stage efficacy. Outcome for Phase 2 included feasibility data and care partner reactivity to upsetting behaviors. Secondary outcomes included data from unobtrusive sleep monitoring. An inductive analysis of transcripts from the Phase 2 STELLA-FTD focus group provides guidance for future revisions. Results Fifteen family care partners participated in the Phase 1 focus groups; sixteen care partners enrolled in Phase 2. Testing in Phase 2 revealed that the care partners found our consumer-informed revised intervention both feasible and acceptable. The post-intervention findings suggest STELLA-FTD has the potential to reduce care partner reactivity to upsetting behaviors and to decrease care partner burden. Sleep did not change over the 8-week intervention. Conclusions The revised STELLA-FTD intervention was found to be feasible and acceptable, and has potential to improve care partner burden for families living with FTD. Providing the intervention via telehealth maximized access and engaged rehabilitation specialists in providing disease management content. Future revisions will include examination of efficacy and mechanism of action (OHSU IRB # 00022721, ClinicalTrials.gov NCT05338710).

Subjective and objective burden and psychological distress in care partners of older adults with traumatic brain injury.

In care partners of older persons (65 years and older) having sustained traumatic brain injury (TBI), the objectives were (a) to describe subjective burden (emotional, social, financial, and physical burden), objective burden (new roles and responsibilities), and psychological distress at 4 months postinjury, and (b) to explore the predictors of subjective burden and psychological distress. This is an observational study of care partners of older adults with TBI (n = 46; Mage = 65.2 years, SD = 11.2, 87% female). Participants completed the Zarit Burden Interview, the Hospital Anxiety and Depression Scale, the Brain Injury Complaint Questionnaire (measuring difficulties of the injured older adult perceived by the care partner), and the modified Medical Outcomes Study Social Support Survey. A majority of care partners (88%) reported at least one form of objective burden (e.g., increased/decreased time spent in certain activities post-TBI), 29% perceived at least mild subjective burden, and 27% reported either significant anxiety or depressive symptoms. Linear regressions indicated that a higher number of difficulties reported regarding the injured person and poorer perceived social support predicted higher subjective burden and psychological distress. A younger age of the care partner also predicted a higher subjective burden. This study provides a better understanding of the potential impacts of TBI in older age for care partners. Future research should examine how to support adequately care partners in their psychological adaptation after TBI in an elderly person. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Healthcare resource utilization and device-aided therapy discussions with eligible patients across the Parkinson's disease continuum: Revelations from the MANAGE-PD validation cohort

IntroductionDevice-aided therapy may improve the quality of life (QoL) for people with advanced Parkinson's disease (PD) and poorly controlled symptoms with oral therapy. MANAGE-PD is a validated tool classifying patients based on symptom control and advanced treatment eligibility. This study focused on patient/caregiver reported outcomes and healthcare resource utilization among patients grouped by MANAGE-PD categories. MethodsDevice-aided therapy-naïve patients receiving oral treatments were identified from the Adelphi Parkinson's Disease Programme. Patients were categorized (category 1 to 3) using MANAGE-PD. PD-specific QoL (PDQ-39), care partner burden (ZBI), satisfaction with current treatment, healthcare resource utilization, associated healthcare costs, and future treatment discussion with providers were measured. Categories were compared using ANOVA, t-test, chi square and adjusted regression analyses. ResultsOf the analytical sample (n = 2709), 18.9% were inadequately controlled on current therapy and potentially eligible for device-aided therapies (category 3). As expected, they had worse patient/caregiver reported outcomes versus patients in categories 1 or 2. However, the degree of difference in healthcare resource utilization, including: greater number of hospitalizations, emergency room (ER) visits and consultations, higher likelihood of being recipients of respite care, and greater PD treatment burden, was unexpected. Importantly, of patients in category 3 and their care partners, >40% did not report discussions with providers about device-aided therapies. ConclusionMANAGE-PD category 3 patients had significantly higher burden on healthcare resources versus patients well-controlled with oral treatment or requiring only oral medication adjustments; yet almost half had no discussion on device-aided therapies with providers. Device-aided therapies may be considered in these patients.

Impact of Atopic Dermatitis on Patients and their Partners.

Atopic dermatitis is a chronic, relapsing and inflammatory skin disease. The impact of atopic dermatitis on the partners living with patients has been poorly investigated. The objective of this study was to evaluate the impact of atopic dermatitis in the daily lives of adult patients and to assess the burden of the disease on their partners. A population-based study was conducted on a representative sample of the general population of French adults aged 18 years of age using stratified, proportional sampling with a replacement design. Data were collected on 1,266 atopic dermatitis patient-partner dyads (mean age of patients 41.6 years, 723 (57.1%) women). The mean age of partners was 41.8 years. Patient burden, measured by the Atopic Dermatitis Burden Scale for Adults (ABS-A) score, was closely related to the objective atopic dermatitis severity: the mean score in the mild group (29.5) was significantly lower than in the moderate (43.9) and severe groups (48.6) (p < 0.0001). Partner burden, measured by the EczemaPartner score, was highly related to atopic dermatitis severity (p < 0.0001). Daytime sleepiness, measured by the Epworth Sleepiness Scale, showed a mean score of 9.24 in patients and 9.01 in their partners, indicating impaired sleep. Atopic dermatitis was found to decrease sexual desire in 39% and 26% of partners and patients respectively.

Comparison Between Burden of Care Partners of Individuals with Alzheimer's Disease Versus Individuals with Other Chronic Diseases.

Caregiving in Alzheimer's disease (AD) is often provided by informal care partners, who spend more hours per week on average than care partners of individuals with conditions other than AD. However, the burden of care in partners of individuals with AD has not been systematically compared to that of other chronic diseases. The current study therefore aims to compare the care partner burden of AD to that of other chronic diseases through a systematic literature review. Data was collected from journal articles published in the last 10years, using two unique search strings in PubMed and analysed using pre-defined patient-reported outcome measures (PROMs) including the EQ-5D-5L, GAD-7, GHQ-12, PHQ-9, WPAI and the ZBI. The data was grouped according to the included PROMs and the diseases studied. The number of participants in the studies reporting burden of caregiving in AD was adjusted to reflect the number of participants in studies reporting care partner burden in other chronic diseases. All results in this study are reported as a mean value and standard deviation (SD). The ZBI measurement was the most frequently used PROM to collect care partner burden (15 studies) and showed a moderate burden (mean 36.80, SD 18.35) on care partners of individuals with AD, higher than most of the other included diseases except for those characterized by psychiatric symptoms (mean scores 55.92 and 59.11). Other PROMs such as PHQ-9 (six studies) and GHQ-12 (four studies) showed a greater burden on care partners of individuals with other chronic diseases such as heart failure, haematopoietic cell transplantations, cancer and depression compared to AD. Likewise, GAD-7 and EQ-5D-5L measurements showed a lesser burden on care partners of individuals with AD compared to care partners of individuals with anxiety, cancer, asthma and chronic obstructive pulmonary disease. The current study suggests that care partners of individuals with AD experience a moderate burden, but with some variations depending on the PROMs used. The results of this study were mixed with some PROMs indicating a greater burden for care partners of individuals with AD versus other chronic diseases, and other PROMs showing a greater burden for care partners of individuals with other chronic diseases. Psychiatric disorders imposed a greater burden on care partners compared to AD, while somatic diseases in the musculoskeletal system resulted in a significantly smaller burden on care partners compared to AD.

The Impact of Alzheimer’s Disease on Care Partners (P14-6.010)

<h3>Objective:</h3> To provide an overview of the care partner burden of Alzheimer’s disease (AD) and explore how burden increases with disease progression using a systematic literature review. <h3>Background:</h3> The burden of informal caregiving of people with AD is often overlooked. <h3>Design/Methods:</h3> A protocol was developed before searches in PubMed, Embase, PsycINFO, and Cochrane Library were run in October 2021 via the Silvi.ai-platform. Eligible studies were published in English and provided data from 2010 or later. Two reviewers screened titles and abstracts independently. A single reviewer conducted full-text analysis and data extraction, and a PRISMA overview was generated. Studies were quality-ranked using the Oxford quality grading scale. <h3>Results:</h3> Of 911 hits, 61 studies were relevant for data extraction. Most care partners were female. The majority of studies reported moderate-to-severe impact on care partners’ life (Zarit Burden Interview [ZBI] and the Maslach Burnout Inventory) and overall quality of life (QoL; WHO QoL Questionnaire); care partners exhibited higher levels of stress, depression, and anxiety versus controls. Females had a significantly higher care partner burden versus males (Caregiver Burden Inventory [CBI]). The higher the number, frequency, and severity of symptoms affecting patients, the more intense care partner distress (Neuropsychiatric Inventory Distress Scale). Care partners of people with severe dementia due to AD reported the greatest care partner burden (short version ZBI and CBI). There was a clear correlation between hours of care giving and Activities of Daily Living Questionnaire score. The higher the score, the more hours of caregiving. <h3>Conclusions:</h3> Caregiving to a person with AD is associated with emotional stress, depression, anxiety, low overall QoL, and impacted physical health. Female care partners are disproportionately affected versus males. The more severe the AD, the larger the burden. More research is required to illuminate the true health consequences for care partners of people with AD. <b>Disclosure:</b> Mrs. Hviid Hahn-Pedersen has stock in Novo Nordisk. Mr. Solís-Tarazona has received personal compensation for serving as an employee of Novo Nordisk A/S. The institution of Prof. Holm-Larsen has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Novo Nordisk.

The Clinical and Economic Impact of Employees Who Are Care Partners of Patients with Multiple Sclerosis by Disease Severity

Background: Research on employee care partners of patients with multiple sclerosis (MS) is limited. Objectives: The clinical and economic impact on employee care partners was evaluated by MS disease severity. Methods: Employees with spouses/domestic partners with MS from the Workpartners database (Jan. 1, 2010–Dec. 31, 2019) were eligible if: spouse/partner had at least 3 MS-related (ICD-9-CM/ICD-10-CM:340.xx/G35) inpatient/outpatient/disease-modifying therapy claims within 1 year (latest claim = index date); 6-month pre-index/1-year post-index enrollment; and age 18 to 64 years. Employee care partners’ demographic/clinical characteristics and direct/indirect costs were compared across predetermined MS severity categories. Logistic and generalized linear regression modeled the costs. Results: Among 1041 employee care partners of patients with MS, 358 (34.4%) patients had mild MS, 491 (47.2%) moderate, and 192 (18.4%) severe. Mean (standard error [SE]) employee care partner age was 49.0 (0.5) for patients with mild disease, 50.5 (0.4) for moderate, 51.7 (0.6) for severe; percent female care partners was 24.6% [2.3%] mild, 19.8% [1.8%] moderate, 27.6% [3.2%] severe; and mean care partner Charlson Comorbidity Index scores 0.28 (0.05) mild, 0.30 (0.04) moderate, 0.27 (0.06) severe. More care partners of patients with moderate/severe vs mild MS had hyperlipidemia (32.6%/31.8% vs 21.2%), hypertension (29.5%/29.7% vs 19.3%), gastrointestinal disease (20.8%/22.9% vs 13.1%), depression (9.2%/10.9% vs 3.9%), and anxiety 10.6%/8.9% vs 4.2%). Adjusted mean medical costs were greater for employee care partners of patients with moderate vs mild/severe disease (P&lt;.001). Pharmacy costs (SE) were lower for employee care partners of mild vs severe/moderate patients (P&lt;.005). Sick leave costs (SE) were greater for employee care partners of mild/severe vs moderate patients (P&lt;.05). Discussion: Employee care partners of patients with moderate/severe vs mild MS had more comorbidities (ie, hypertension, gastrointestinal disease, depression, and anxiety) and higher pharmacy costs. Employee care partners of patients with moderate vs mild/severe MS had higher medical and lower sick leave costs. Treatment strategies that improve patient outcomes may reduce employee care partner burden and lower costs for employers in some instances. Conclusions: Comorbidities and direct/indirect costs of employees whose spouses/partners have MS were considerable and varied with MS severity.

The Clinical and Economic Impact of Employees Who Are Care Partners of Patients with Multiple Sclerosis by Disease Severity.

Background: Research on employee care partners of patients with multiple sclerosis (MS) is limited. Objectives: The clinical and economic impact on employee care partners was evaluated by MS disease severity. Methods: Employees with spouses/domestic partners with MS from the Workpartners database (Jan.1, 2010-Dec.31, 2019) were eligible if: spouse/partner had at least 3 MS-related (ICD-9-CM/ICD-10-CM:340.xx/G35) inpatient/outpatient/disease-modifying therapy claims within 1 year (latest claim = index date); 6-month pre-index/1-year post-index enrollment; and age 18 to 64 years. Employee care partners' demographic/clinical characteristics and direct/indirect costs were compared across predetermined MS severity categories. Logistic and generalized linear regression modeled the costs. Results: Among 1041 employee care partners of patients with MS, 358 (34.4%) patients had mild MS, 491 (47.2%) moderate, and 192 (18.4%) severe. Mean (standard error [SE]) employee care partner age was 49.0 (0.5) for patients with mild disease, 50.5 (0.4) for moderate, 51.7 (0.6) for severe; percent female care partners was 24.6% [2.3%] mild, 19.8% [1.8%] moderate, 27.6% [3.2%] severe; and mean care partner Charlson Comorbidity Index scores 0.28 (0.05) mild, 0.30 (0.04) moderate, 0.27 (0.06) severe. More care partners of patients with moderate/severe vs mild MS had hyperlipidemia (32.6%/31.8% vs 21.2%), hypertension (29.5%/29.7% vs 19.3%), gastrointestinal disease (20.8%/22.9% vs 13.1%), depression (9.2%/10.9% vs 3.9%), and anxiety 10.6%/8.9% vs 4.2%). Adjusted mean medical costs were greater for employee care partners of patients with moderate vs mild/severe disease (P<.001). Pharmacy costs (SE) were lower for employee care partners of mild vs severe/moderate patients (P<.005). Sick leave costs (SE) were greater for employee care partners of mild/severe vs moderate patients (P<.05). Discussion: Employee care partners of patients with moderate/severe vs mild MS had more comorbidities (ie, hypertension, gastrointestinal disease, depression, and anxiety) and higher pharmacy costs. Employee care partners of patients with moderate vs mild/severe MS had higher medical and lower sick leave costs. Treatment strategies that improve patient outcomes may reduce employee care partner burden and lower costs for employers in some instances. Conclusions: Comorbidities and direct/indirect costs of employees whose spouses/partners have MS were considerable and varied with MS severity.

Determinants of informal care time, distress, depression, and quality of life in care partners along the trajectory of Alzheimer's disease.

We evaluated determinants associated with care partner outcomes along the Alzheimer's disease (AD) stages. We included n = 270 care partners of amyloid-positive patients in the pre-dementia and dementia stages of AD. Using linear regression analysis, we examined determinants of four care partner outcomes: informal care time, caregiver distress, depression, and quality of life (QoL). More behavioral symptoms and functional impairment in patients were associated with more informal care time and depressive symptoms in care partners. More behavioral symptoms were related with more caregiver distress. Spouse care partners spent more time on informal care and QoL was lower in female care partners. Behavioral problems and subtle functional impairment of the patient predisposed for worse care partner outcomes already in the pre-dementia stages. Both patient and care partner determinants contribute to the care partner outcomes, already in early disease stages. This study provides red flags for high care partner burden.