BACKGROUND/OBJECTIVES
Few studies have rigorously examined the magnitude of changes in well‐being after a transition into sustained and substantial caregiving, especially in population‐based studies, ...compared with matched noncaregiving controls.
DESIGN
We identified individuals from a national epidemiological investigation who transitioned into caregiving over a 10‐ to 13‐year follow‐up and provided continuous in‐home care for at least 18 months and at least 5 hours per week. Individuals who did not become caregivers were individually matched with caregivers on age, sex, race, education, marital status, self‐rated health, and history of cardiovascular disease at baseline. Both groups were assessed at baseline and follow‐up.
SETTING
REasons for Geographic And Racial Differences in Stroke study.
PARTICIPANTS
A total of 251 incident caregivers and 251 matched controls.
MEASUREMENTS
Perceived Stress Scale (PSS), 10‐Item Center for Epidemiological Studies‐Depression (CES‐D), and 12‐item Short‐Form Health Survey quality‐of‐life mental (MCS) and physical (PCS) component scores.
RESULTS
Caregivers showed significantly greater worsening in PSS, CES‐D, and MCS, with standardized effect sizes ranging from 0.676 to 0.796 compared with changes in noncaregivers. A significant but smaller effect size was found for worsening PCS in caregivers (0.242). Taking on sustained caregiving was associated with almost a tripling of increased risk of transitioning to clinically significant depressive symptoms at follow‐up. Effects were not moderated by race, sex, or relationship to care recipient, but younger caregivers showed greater increases in CES‐D than older caregivers.
CONCLUSION
Persons who began substantial, sustained family caregiving had marked worsening of psychological well‐being, and relatively smaller worsening of self‐reported physical health, compared with carefully matched noncaregivers. Previous estimates of effect sizes on caregiver well‐being have had serious limitations due to use of convenience sampling and cross‐sectional comparisons. Researchers, public policy makers, and clinicians should note these strong effects, and caregiver assessment and service provision for psychological well‐being deserve increased priority.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
Telomere length (TL) is widely studied as a possible biomarker for stress-related cellular aging and decreased longevity. There have been conflicting findings about the relationship between family ...caregiving stress and TL. Several initial cross-sectional studies have found associations between longer duration of caregiving or perceived stressfulness of caregiving and shortened TL, suggesting that caregiving poses grave risks to health. Previous reviews have suggested the need for longitudinal methods to investigate this topic. This study examined the association between the transition to family caregiving and change in TL across ~9 years. Data was utilized from the Caregiving Transitions Study, an ancillary study to the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study. TL was assayed using qPCR and analyzed as the telomere-to-single copy gene ratio for each participant at baseline and follow-up. General linear models examined the association between caregiving status and the change in TL for 208 incident caregivers and 205 controls, as well as associations between perceived stress and TL among caregivers. No association was found between TL change and caregiving (p = 0.494), and fully adjusted models controlling for health and socioeconomic factors did not change the null relationship (p = 0.305). Among caregivers, no association was found between perceived caregiving stress and change in TL (p = 0.336). In contrast to earlier cross-sectional studies, this longitudinal, population-based study did not detect a significant relationship between the transition into a family caregiving role and changes in TL over time. Given the widespread citation of previous findings suggesting that caregiving shortens telomeres and places caregivers at risk of early mortality, these results demonstrate the potential need of a more balanced narrative about caregiving.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Background
Prevalence of dementia is highest in African Americans and Hispanics. Yet, many minorities experience missed or delayed dementia diagnoses and disparities in quality of dementia care. The ...objective of this study was to understand racial and ethnic minority experiences of dementia diagnosis and develop recommendations for clinicians and health systems to improve diagnosis and early care for diverse populations from the caregiver perspective.
Method
Minority dementia caregivers in the Baltimore, Maryland region were recruited from specialty clinics, prior studies, and the Alzheimer’s Association to participate in semi‐structured, in‐depth, qualitative interviews. Interviews topics included early dementia symptoms, diagnosis experiences, healthcare system interactions, and recommendations for clinicians. Interviews were coded and analyzed by three investigators using qualitative content analysis methods.
Result
Eighteen family caregivers (11 African American, 4 Asian and 3 Hispanic), mostly adult children (n=15) of the person with dementia, participated. Four themes emerged around recommendations for clinicians and health systems throughout the diagnosis process. 1) Involve family: Recommendations pertaining to family involvement included listening to family concerns, sharing patient information including diagnosis, recommending family counseling or meetings, and understanding family and culture specific care plans. 2) Knowledge is power: Information was felt to be essential. Caregivers desired clear or written diagnosis, guidance on what to expect (roadmap), and concrete resources. 3) Provide proactive care: Caregivers likened the need for cognitive screening to cancer screening. They felt clinicians should proactively detect early signs of dementia, educate caregivers on potential challenges (safety, finances), and offer support to both patient and caregivers. 4) Mind your (bedside) manners: Caregivers shared both positive and off‐putting interactions. They appreciated clinicians who were straightforward, demonstrated compassion rather than nihilism or negativity, and were readily available for questions.
Conclusion
Minority dementia caregivers shared recommendations for clinicians related to four themes, which included involving family, offering knowledge and information, providing proactive care, and being mindful of bedside manner and language in dementia detection, diagnosis, and early care processes. Caregiver perspectives and recommendations should be incorporated into clinical practice and dementia care interventions for diverse aging populations.
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FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
Abstract
Background
informal caregiving for family and friends is becoming increasingly common due to the rising prevalence of chronic conditions and a shortage of affordable care options. While the ...impact of caregiving on caregivers’ health is well-documented, nuances in caregivers’ experiences may not be captured in quantitative studies. We aimed to better understand caregivers’ perception of their experiences through qualitative analysis.
Methods
participants were from the Caregiving Transitions Study (CTS), which is ancillary to the REasons for Geographic and Racial Differences in Stroke Study. We analysed responses from 150 caregivers to an open-ended question at the end of the CTS telephone interview concerning additional information about their caregiving experiences. We identified main themes and examined differences by sex, condition and relationship to the care recipient.
Results
four major themes were identified: cultural/family expectations; growth opportunities; and reciprocity; stressors and challenges and recommendations. Male caregivers more often indicated that their motivation for taking on this role was their sense of duty towards family, while female caregivers focused on the challenges and burden of caregiving that they experienced. Overall, caregivers highlighted the importance of patience and the positive impact of caregiving, such as opportunities for personal growth, acquiring new skills, and finding fulfillment and gratitude.
Conclusions
family caregivers shared both positive and challenging experiences as well as the impact that these experiences had on their lives. Understanding the full spectrum of the caregiving experience will help inform how the community and the health care system can best support caregivers in their roles.
Background
Disparities in diagnosis persist among persons living with dementia (PLWD); most research on delayed diagnosis relies on medical records or administrative claims. This study aimed to ...identify factors that delay or facilitate dementia diagnoses in racial or ethnic minoritized PLWD and elicit care partner perspectives on timing and effects of diagnosis.
Methods
Maryland‐based participants cared for a PLWD age 60 or older, self‐identified as Black/African/African‐American, Asian, or Hispanic/Latino, and spoke English. Nineteen care partner in‐depth, semi‐structured interviews were conducted and analyzed using conventional qualitative content analysis methods.
Results
Biological, sociocultural, and environmental factors delayed dementia diagnosis. Memory loss was the most common early symptom, but the onset was often subtle or perceived as normal aging. Stigma and secrecy surrounding dementia influenced recognition and discussion of dementia among families and communities. Diagnoses were family‐initiated and started in primary care. Care partners were divided in their perceptions of diagnosis timeliness and whether earlier diagnosis would have changed outcomes. Family reactions to dementia diagnoses varied; most participants expressed a strong sentiment of service and duty to care for older family members. Participants overwhelmingly felt the benefits of obtaining a dementia diagnosis outweighed harms.
Conclusions
Numerous factors affect dementia diagnosis in racial and ethnic minoritized PLWD. Normalization of brain health discussions and systematic, proactive discussion and detection of dementia in primary care may address multilevel barriers and facilitators to diagnosis. Systems‐level and community‐led public health interventions may also help address disparities in brain health education and dementia diagnosis.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
Background and aim
Providing care to an older adult with a disability has been associated with increased risk to the caregiver’s health, but most previous studies of caregiving and health compare ...persons who are already caregivers with poorly matched non-caregiving controls and are often based on convenience samples. In this report, we describe the enrollment of persons who transitioned into a family caregiving role while participating in a national epidemiological study.
Methods
Participants in the REasons for Geographic And Racial Differences in Stroke (REGARDS) study were asked on two occasions 9–14 years apart if they were providing care on an ongoing basis to a family member with a chronic illness or disability. Those who answered “no” and “yes”, respectively, to this caregiving question and reported sufficient caregiving responsibilities after their transitions were enrolled in the present study as incident caregivers (
N
= 251). Participants matched on multiple demographic and health history variables and who reported no history of caregiving were enrolled as non-caregiving controls (
N
= 251).
Results
Among eligible participants, 84% agreed to participate, and 47% of caregivers reported caring for a person with dementia. Descriptive analyses confirmed the success of the matching procedures for balancing the groups on multiple demographic and pre-caregiving health variables. Depressive symptoms and perceived stress increased significantly after the transition to caregiving.
Conclusion
Comparable, population-based samples of incident caregivers and matched non-caregivers have been enrolled. Future analyses will examine within-person changes in health and circulating biomarkers as a function of the transition to caregiving.
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EMUNI, FZAB, GEOZS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NUK, OBVAL, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
Older adults are encouraged to use Medical Visit Companions (MVCs) for routine medical encounters; however, many vulnerable older adults attend alone or fail to attend. In the absence of available ...family or friends, community volunteers could potentially fill this gap. We aimed to understand the role and acceptability of volunteer MVCs accompanying older adults to medical visits and explore potential barriers and facilitators of increasing MVC availability and expanding roles beyond transportation.
Two moderators conducted 4 focus groups with 29 volunteers grouped by whether they provided (n = 15) or received (n = 14) rides to medical visits. All were members of Partners In Care (PIC), a community organization in Maryland, United States which offers a range of programs and services that support the independence of older adults including the provision of volunteer MVCs. Participants were asked to discuss why they were involved with PIC, and to describe their experiences with providing or receiving companionship during medical visits. Inductive thematic analysis was used to explore the views and experiences of participants, particularly around the roles played by MVCs and the feasibility of expanding these roles.
All participants reported benefits from their role whether that was giving or receiving rides. Many accompanied participants reported missing medical appointments prior to joining PIC and being able to avail of the services of a MVC. Volunteer roles varied and ranged from transportation only, help with care coordination and in some cases accompanying the person into their medical visit. A subgroup of volunteers expressed a willingness to take on additional roles during the physician visit following additional training and isolated older adults welcomed the prospect of their assistance.
Our qualitative data indicate that non-family, volunteer MVCs are willing and able to assist older people going to a medical visit. With appropriate training and support, volunteer companions could do much to improve the healthcare experience for those who otherwise would attend alone or would not attend medical visits.
Background
People living with dementia (PLWD) have complex medication regimens, exposing them to increased risk of harm. Pragmatic deprescribing strategies that align with patient‐care partner goals ...are needed.
Methods
A pilot study of a pharmacist‐led intervention to optimize medications with patient‐care partner priorities, ran May 2021–2022 at two health systems. PLWD with ≥7 medications in primary care and a care partner were enrolled. After an introductory mailing, dyads were randomized to a pharmacist telehealth intervention immediately (intervention) or delayed by 3 months (control). Feasibility outcomes were enrollment, intervention completion, pharmacist time, and primary care provider (PCP) acceptance of recommendations. To refine pragmatic data collection protocols, we assessed the Medication Regimen Complexity Index (MRCI; primary efficacy outcome) and the Family Caregiver Medication Administration Hassles Scale (FCMAHS).
Results
69 dyads enrolled; 27 of 34 (79%) randomized to intervention and 28 of 35 (80%) randomized to control completed the intervention. Most visits (93%) took more than 20 min and required multiple follow‐up interactions (62%). PCPs responded to 82% of the pharmacists' first messages and agreed with 98% of recommendations. At 3 months, 22 (81%) patients in the intervention and 14 (50%) in the control had ≥1 medication discontinued; 21 (78%) and 12 (43%), respectively, had ≥1 new medication added. The mean number of medications decreased by 0.6 (3.4) in the intervention and 0.2 (1.7) in the control, reflecting a non‐clinically meaningful 1.0 (±12.4) point reduction in the MRCI among intervention patients and a 1.2 (±12.9) point increase among control. FCMAHS scores decreased by 3.3 (±18.8) points in the intervention and 2.5 (±14.4) points in the control.
Conclusion
Though complex, pharmacist‐led telehealth deprescribing is feasible and may reduce medication burden in PLWD. To align with patient‐care partner goals, pharmacists recommended deprescribing and prescribing. If scalable, such interventions may optimize goal‐concordant care for PLWD.
See related Editorial by Pickering and Anderson.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SBCE, SBMB, UL, UM, UPUK
Life's Simple 7 (LS7) is a metric for cardiovascular health based on the 7 domains of smoking, diet, physical activity, body mass index, blood pressure, total cholesterol, and fasting glucose. ...Because they may be targeted for secondary prevention purposes, we hypothesized that stroke survivors would experience improvement in LS7 score over time compared with people who did not experience a stroke. We addressed this hypothesis in the REGARDS study (Reasons for Geographic and Racial Differences in Stroke) cohort of Black and White adults enrolled between 2003 and 2007.
Participants who had LS7 data at baseline, were stroke-free at baseline, had a 10-year follow-up visit, and either did not have a stroke or had an ischemic stroke >1 year before follow-up were included (N=7569). Among these participants, 149 (2.0%) had an adjudicated ischemic stroke between the LS7 assessments. LS7 scores were classified as 0 to 2 points for each domain for a maximum score of 14, with higher scores representing better health. Multivariable linear regression was used to test the association of ischemic stroke with change in LS7 score. Covariates included baseline LS7 score, age, race, sex, education, and geographic region.
The 149 stroke survivors had an average of 4.9 years (SD=2.5) of follow-up from the stroke event to the second LS7 assessment. After adjusting for covariates, participants who experienced an ischemic stroke showed 0.28 points more decline in total LS7 score (
=0.03) than those who did not experience a stroke.
Stroke survivors did not experience improvements in cardiovascular health due to secondary prevention after ischemic stroke. On the contrary, they experienced significantly greater decline, indicating the need for greater efforts in secondary prevention after a stroke.
Abstract
Background
We aimed to study whether physical frailty and cognitive impairment (CI) increase the risk of recurrent hospitalizations in older adults, independent of comorbidity, and ...disability.
Methods
Two thousand five hundred forty-nine community-dwelling participants from the National Health and Aging Trends Study (NHATS) with 3 + years of continuous Medicare coverage from linked claims data were included. We used the marginal means/rates recurrent events model to investigate the association of baseline CI (mild CI or dementia) and physical frailty, separately and synergistically, with the number of all-source vs. Emergency Department (ED)-admission vs. direct admission hospitalizations over 2 years.
Results
17.8% of participants had at least one ED-admission hospitalization; 12.7% had at least one direct admission hospitalization. Frailty and CI, modeled separately, were both significantly associated with risk of recurrent all-source (Rate Ratio (RR) = 1.24 for frailty, 1.21 for CI;
p
< .05) and ED-admission (RR = 1.49 for frailty, 1.41 for CI;
p
< .05) hospitalizations but not direct admission, adjusting for socio-demographics, obesity, comorbidity and disability. When CI and frailty were examined together, 64.3% had neither (Unimpaired); 28.1% CI only; 3.5% Frailty only; 4.1% CI + Frailty. Compared to those Unimpaired, CI alone and CI + Frailty were predictive of all-source (RR = 1.20, 1.48,
p
< .05) and ED-admission (RR = 1.36, 2.14,
p
< .05) hospitalizations, but not direct admission, in our adjusted model.
Conclusions
Older adults with both CI and frailty experienced the highest risk for recurrent ED-admission hospitalizations. Timely recognition of older adults with CI and frailty is needed, paying special attention to managing cognitive impairment to mitigate preventable causes of ED admissions and potentiate alternatives to hospitalization.
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