Most older adults with Alzheimer's disease and related dementias (ADRD) do not receive a timely formal diagnosis, although formal diagnosis is linked to improved outcomes. Little is known about how a ...recognized formal diagnosis impacts family caregivers, who provide crucial support for older adults experiencing ADRD.
We analyzed 2017 National Health and Aging Trends Study and linked National Study of Caregiving data for a nationally representative sample of 724 (weighted n = 5,431,551) caregivers who assisted an older adult with probable dementia. Probable dementia was determined via previously validated composite measure. We modeled caregiver experiences as a function of recognized formal ADRD diagnosis using weighted, logistic regression and adjusting for the relevant older adult and caregiver characteristics.
Among caregivers who assisted an older adult with probable dementia, those assisting an individual with recognized formal ADRD diagnosis were significantly more likely to report emotional difficulty (aOR: 1.77; p = 0.03) and family disagreement over the older adult's care (aOR: 5.53; p = 0.03). They were also more likely to assist with communication during doctors' visits (aOR: 9.71; p < 0.001) and to receive caregiving-related training (aOR: 2.59; p = 0.01).
While a timely ADRD diagnosis may help ensure access to needed supports for older adult and caregiver alike, diagnosis must be linked to support as they navigate resultant complex emotions. Formal diagnosis is linked to caregiver integration with, and support from, the older adult's team of health care providers; therefore, reducing existing disparities in timely diagnosis is necessary to ensure all caregivers have equal access to support.
Abstract
Background and Objectives
Identifying and meeting the needs of family and unpaid caregivers (hereafter, “caregivers”) during home health (HH) can improve outcomes for patients with ...Alzheimer’s Disease and Related Dementias (ADRD). However, little is known regarding ADRD caregivers’ perspectives on communication and support from the HH care team. The study objectives were to identify ADRD caregivers’ common support needs during HH and preferences for addressing these needs, to inform future development of an assessment and support intervention.
Research Design and Methods
We conducted semistructured key informant interviews with caregivers who had recently assisted a HH patient with ADRD (n = 27). Interview transcripts were analyzed using directed content analysis.
Results
Caregivers identified four major support needs: assistance navigating insurance and service coverage, training on nursing tasks, referral to respite care, and information regarding ADRD disease progression. Caregivers described major barriers to communicating these needs, including never being directly asked about their needs and information discontinuity within the HH care team. Incorporating caregiver recommendations, we propose a new model of assessment and support in which the HH care team (a) proactively asks about caregiver needs, (b) presents available supportive resources, (c) solicits information regarding the patient’s needs and routine, and (d) stores and shares this information within the medical record.
Discussion and Implications
Findings reveal critical gaps in current patterns of support for ADRD caregivers during HH and suggest directions for an assessment and support intervention that explicitly queries caregivers on their capacity and needs, with content tailored to the HH setting.
Millions of older adults co-manage or delegate health responsibilities to one or more family caregivers. Patient portals facilitate health care management tasks, but little is known about portal use ...arrangements (i.e., individual or joint use) among older adults and their caregivers.
We sought to characterize individual and joint use of the patient portal and to identify how using arrangements varies by individual-, interpersonal-, and community-level factors. We used linked 2017 National Health and Aging Trends Study, National Study on Caregiving, and American Community Survey data for a nationally representative sample of older adults (n = 1417; weighted n = 7.4 million) and their caregivers (n = 2232; weighted n = 20.6 million). Patient portals used by older adults and caregiver(s) were assessed via self-reports. We described portal use arrangements and tested for between-group differences using weighted Wald tests. Caregiver's likelihood of accessing the portal was modeled using weighted, multivariable logistic regression.
One in ten (10%) community-living older adults were sole portal users, 3% were joint users with one or more caregivers, 14% solely relied on one or more caregivers as portal users, and 74% reported no portal use. Older adults whose portal was only used by caregiver(s) were more likely to be Medicaid-enrolled (20% vs. 1%; p < 0.001), have dementia (43% vs. 5%; p < 0.001), and be homebound (65% vs. 27%; p < 0.001). Caregivers were more likely to use the portal if they were college-educated adjusted odds ratio (aOR): 1.68; p < 0.01) and reported caregiving-related emotional difficulty (aOR: 1.92; p < 0.001) and doing more than their "fair share" (aOR: 1.48; p = 0.03), and were less likely if Black (versus White) (aOR: 0.61; p = 0.01).
Patient portals could be a valuable platform for identifying and supporting caregivers of high-need older adults, but existing disparities in portal access must be closed to ensure equitable support.
This study aimed to explore how the COVID-19 pandemic shaped the experiences of family caregivers of older adults who were hospitalized with COVID-19 and discharged to post-acute, skilled home health ...care (HHC) services.
Thirty semi-structured interviews with family caregivers of older adults who received services from a large, not-for-profit HHC agency following hospitalization with COVID-19 infection were conducted between March-July 2021 and analyzed using thematic analysis.
During the pandemic, family caregivers encountered societal and institutional barriers to assisting older adults across post-acute care transitions. These barriers included hospital visitation restrictions as well as difficulties accessing community-based resources and medical equipment. Despite limitations and delays in HHC services, many family caregivers identified post-acute HHC, delivered in-person or via telehealth, as important to addressing care gaps for older adults, as well as their own needs for training and support during the pandemic.
Policies intended to reduce the spread of COVID-19 introduced new challenges for caregivers during HHC. However, HHC agencies and their staff adapted within this context to provide a needed bridge of support.
•Caregivers experienced barriers to assisting with post-acute care during COVID.•Hospital discharge and transfer policies reduced information/communication sharing.•Post-acute home health care was important to addressing care gaps for older adults.•Caregivers expressed the value of support from social workers and aides.
Background
In Medicare‐funded home health care (HHC), one in three patients has cognitive impairment (CI), but little is known about the care intensity they receive in this setting. Recent HHC ...reimbursement changes fail to adjust for patient CI, potentially creating a financial disincentive to caring for these individuals.
Methods
This cohort study included a nationally representative sample of 1214 Medicare HHC patients between 2011 and 2016. Multivariable logistic and negative binomial regressions modelled the relationship between patient CI and care intensity—measured as the number and type of visits received during HHC and likelihood of receiving multiple successive HHC episodes.
Results
Patients with CI had 45% (P < .05) greater odds of receiving multiple successive HHC episodes and received an additional 2.82 total (P < .001), 1.39 nursing (P = .003), 0.72 physical therapy (P = .03), and 0.60 occupational therapy visits (P = .01) during the index HHC episode.
Discussion
Recent HHC reimbursement changes do not reflect the more intensive care needs of patients with CI.
Background/Objectives
Medicare‐certified home health agencies are required to offer family caregiver training, but little is known regarding the potential impact of this training on outcomes during ...home health care. We estimate the proportion of family caregivers assisting Medicare home health patients who have unmet training needs and examine whether these unmet training needs are associated with older adults' risk of acute care utilization during home health care.
Design
Observational, nationally representative cohort study.
Setting
Linked National Health and Aging Trends Study, Outcome and Assessment Information Set (OASIS), Medicare Provider of Services file, and Medicare claims data from 2011 to 2016.
Participants
Thousand two hundred seventeen (weighted n = 5,870,905) community‐living Medicare beneficiaries who received home health care between 2011 and 2016.
Measurements
Family caregivers' unmet training needs measured from OASIS and Medicare claims; home health patients' acute care utilization (including emergency department use and hospitalization) measured from OASIS.
Results
Rates of unmet need for training varied by activity, from 8.2% of family caregivers assisting with household chores to 16.0% assisting with self‐care tasks. After controlling for older adult and home health provider characteristics, older adults whose family caregivers had an unmet need for training with any caregiving activity were twice as likely to incur acute care utilization during their home health episode (adjusted odds ratio aOR: 2.01, 95% confidence interval CI: 1.20–3.38). This relationship held across specific caregiving activities including household chores (aOR: 1.98; 95% CI: 1.13–3.46), medication management (aOR: 2.50; 95% CI: 1.46–4.26), patient supervision (aOR: 2.92; 95% CI: 1.36–6.24), and self‐care tasks (aOR: 3.11; 95% CI: 1.62–6.00).
Conclusions and Relevance
Unmet training needs among family caregivers are associated with greater likelihood of acute care utilization among Medicare beneficiaries receiving home health care. Identifying and addressing family caregivers' training needs may reduce older adults' risk of acute care utilization during home health care.
Objective
To assess whether home health agencies incur significantly higher care delivery costs for patients with cognitive impairment across three timeframes relevant to home health payment policy.
...Data Sources
Linked Medicare home health claims and patient assessments, National Health and Aging Trends Study (NHATS), and home health agency cost reports for a nationally representative sample of Medicare beneficiaries receiving home health between 2011 and 2016.
Study Design
We modeled care delivery costs incurred by the home health agency as a function of patient cognitive impairment using multivariable, propensity score‐adjusted, generalized linear models.
Data Collection/Extraction Methods
We identified NHATS participants who experienced an index home health episode between 2011 and 2016 (n = 1214; weighted n = 5,856,333) and linked their NHATS survey data to standardized patient assessment and claims data for the episode, as well as cost report data for the home health agency that provided care.
Principal Findings
Across the first 30, 60, and 120 days of caring for a patient with cognitive impairment, we estimate additional costs of care to the home health agency of $186.19 (p = 0.02), $282.46 (p = 0.01), and $740.91 (p = 0.04), respectively.
Conclusions
Home health agencies incur significantly higher costs when caring for a patient with cognitive impairment. As patient cognitive function is not considered in the most recent Medicare home health reimbursement model, agencies may be disincentivized from providing care to those with cognitive impairment. Policy makers and researchers should carefully monitor home health access among Medicare beneficiaries with cognitive impairment and further investigate the inclusion of patient cognitive function in future risk adjustment models.
The COVID-19 pandemic has amplified the role of telehealth in health care delivery. Regional variation in internet access and telehealth use are well-documented, but the effect of neighborhood ...factors, including the pervasiveness of broadband internet, on older adults' telehealth usage in the context of internet access is not known.
This study aimed to investigate how individual and neighborhood characteristics, including the pervasiveness of neighborhood broadband internet subscription, are associated with engagement in telehealth among older adults with internet access.
In this cross-sectional study, we included 5117 community-living older adults aged ≥65 years, who participated in the 2017 National Health and Aging Trends Study with census tract-level data for participants' places of residence from the American Community Survey.
Of an estimated 35.3 million community-living older adults, 21.1 million (59.7%) were internet users, and of this group, more than one-third (35.8%) engaged in telehealth. In a multivariable regression model adjusted for individual- and neighborhood-level factors, age, education, income, and the pervasiveness of neighborhood broadband internet subscription were associated with engagement in telehealth, while race, health, county metropolitan status, and neighborhood social deprivation were not. Among internet users, living in a neighborhood at the lowest (versus highest) tertile of broadband internet subscription was associated with being 40% less likely to engage in telehealth (adjusted odds ratio 0.61, 95% CI 0.42-0.87), all else equal.
Neighborhood broadband internet stands out as a mutable characteristic that is consequential to engagement in telehealth.
Community-living older Medicare and Medicaid enrollees ("dual-enrollees") have high care needs and commonly receive paid and unpaid long-term services and supports (LTSS) to help with routine ...activities. Little is known about whether receiving paid help or individuals' state and neighborhood environmental context ("LTSS environment") relates to dual-enrollees' care experiences.
We examine a sample of n = 979 community-dwelling dual-enrollees with disabilities from 2011 to 2015 National Health and Aging Trends Study, linked to measures of neighborhood disadvantage and state Medicaid home and community-based services (HCBS) generosity. Logistic regression models stratified by dementia status assess associations between paid help and: (a) adverse consequences due to unmet care needs, and (b) participation restrictions in valued activities, among dual-enrollees with and without dementia, adjusting for individual and LTSS environmental characteristics.
Use of paid help was greater for those with (versus without) dementia (46.9% vs. 37.8%). Neighborhood disadvantage was associated with greater use of paid help among dual-enrollees living with dementia. High state Medicaid HCBS generosity was associated with the use of paid help, regardless of dementia status. Dual-enrollees with dementia receiving paid help had higher odds of experiencing adverse consequences due to unmet need (adjusted odds ratio = 2.05; 95% confidence interval 1.16-3.61; p = .02)-no significant associations were observed for participation restrictions. Use of paid help and LTSS environment were not significantly associated with care experiences for dual-enrollees without dementia.
Findings highlight the complexities of caring for dual-enrollees, particularly those with dementia, and emphasize the need to strengthen the delivery of paid care with considerations for the LTSS environment.
During Medicare home health care (HHC), family caregiver assistance is often integral to implementing the care plan and avoiding readmission. Family caregiver training delivered by HHC clinicians ...(nurses and physical therapists PTs) helps ensure caregivers' ability to safely assist when HHC staff are not present. Yet, family caregiver training needs often go unmet during HHC, increasing the risk of adverse patient outcomes. There is a critical knowledge gap regarding challenges HHC clinicians face in providing necessary family caregiver training.
Multisite qualitative study using semi-structured, in-depth key informant interviews with Registered Nurses (n = 11) and PTs (n = 8) employed by four HHC agencies. Participating agencies were diverse in rurality, scale, ownership, and geographic region. Key informant interviews were audio-recorded, transcribed, and analyzed using directed content analysis to identify existing facilitators and barriers to family caregiver training during HHC.
Clinicians had an average of 9.3 years (range = 1.5-23 years) experience in HHC, an average age of 45.1 years (range = 28-63 years), and 95% were female. Clinicians identified facilitators and barriers to providing family caregiver training at the individual, interpersonal, and structural levels. The most salient factors included clinician-caregiver communication and rapport, accuracy of hospital discharge information, and access to resources such as additional visits and social work consultation. Clinicians noted the COVID-19 pandemic introduced additional challenges to providing family caregiver training, including caregivers' reduced access to hospital staff prior to discharge.
HHC clinicians identified a range of barriers and facilitators to delivering family caregiver training during HHC; particularly highlighting the role of clinician-caregiver communication. To support caregiver training in this setting, there is a need for updated reimbursement structures supporting greater visit flexibility, improved discharge communication between hospital and HHC, and structured communication aids to facilitate caregiver engagement and assessment.
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