[Caregiving Listserve] from the National Alliance for Caregiving
Some quick updates on what's happening in the caregiving world this month:
"Hidden Heroes" - New Support for Military Caregivers
- New Coalition: Last week, the National Alliance for Caregiving was honored to be invited to the White House for the announcement of Hidden Heroes: The National Coalition for Military Caregivers. Organized through the Elizabeth Dole Foundation, the coalition intends to address gaps in caregiver support for those families caring for military veterans. Learn more at http://elizabethdolefoundation.org/hiddenheroescoalition.
- The Military and Veteran Caregiver Services Improvement Act was introduced by Senator Patty Murray (D-WA), a senior member of the Senate Veterans' Affairs Committee. The act would provide new supports to caregivers of military veterans. Read the one-pager for the act by clicking here. For press coverage, click here.
Senate bill would expand benefits for caregivers by Patricia Kime
Staff Writer
Responding to a Rand Corp. report issued last week on challenges facing those who care for ill or injured veterans, Sen. Patty Murray, D-Wash., on Thursday introduced a bill that would increase federal support for this largely invisible group.More than 5 million Americans provide care and support for veterans, with 1 million helping ill or injured Iraq and Afghanistan war-era veterans. According to the study, many often do so at great personal sacrifice, experiencing social isolation, income loss and poor health.
Roughly a third do not have health insurance, 62 percent face financial strain as a result of their circumstances, 28 percent left jobs to care for a veteran and nearly 40 percent meet the criteria for symptoms of depression — more than double that of civilian caregivers.
“Our caregivers work extremely hard without any recognition and rarely ask for anything for themselves, a lot like the service member and veterans themselves, who say they are just doing their jobs,” Murray said during a speech on the Senate floor.
The Military and Veteran Caregiver Services Improvement Act, which Murray dubbed the “Hidden Heroes Act” after the Rand report, would broaden the Veterans Affairs Department caregiver program, removing restrictions on who is considered a caregiver for benefit purposes and increasing support for those caring for people with mental health issues.
It would make tax-exempt the Defense Department benefit known as Special Compensation for Assistance with Activities of Daily Living and would expand eligibility for the program by increasing support of those caring for individuals with mental health conditions and/or traumatic brain injury.
It also would remove the time restrictions for veterans eligible for the Post-9/11 GI Bill to transfer their benefits.
“Injured veterans should not be penalized because their injury occurred early in their service,” Murray said.
Murray said she found inspiration for the proposed legislation in the Rand study as well as her parents’ own story. Murray’s father, a World War II veteran, was cared for by her mother after he developed multiple sclerosis. At the same time, mother Beverly Johns raised seven children and supported the family.
According to the study, post-9/11 military and veterans caregivers save taxpayers more than $3 billion a year by offsetting the cost of home health care and medical aides.
The Rand study, written by researchers Rajeev Ramchand, Terri Tanielian and David Adamson, was commissioned by the Elizabeth Dole Foundation, after its founder, former Transportation Secretary and Sen. Elizabeth Dole became a caregiver herself, helping husband and World War II veteran Sen. Robert Dole during an 11-month hospitalization and subsequent care.
When the Doles began hosting injured and ill troops and their caregivers for dinners in their Washington, D.C., home after Robert Dole’s hospitalization, Elizabeth Dole felt compelled to do more.
“Once these families are home, the challenges increase tremendously,” Dole said last week at an event to unveil the study.
The White House on Friday will announce more initiatives for military and veterans caregivers under the Joining Forces program. First lady Michelle Obama and Jill Biden, along with Dole and former first lady Rosalynn Carter, founder of the Rosalynn Carter Institute for Caregiving, have invited caregivers to the East Wing for the event.
April's Health Affairs Focuses on Alzheimer's and Caregiving
In case you missed it, you can read about the issue by clicking here. The Table of Contents is available here (some articles are subscription only).
New Health Affairs: Implications Of Alzheimer’s And The State Of Research by Chris Fleming
Health Affairs’ April issue addresses the litany of public and personal ramifications of Alzheimer’s disease—the most expensive condition in the United States both in terms of real costs and the immeasurable toll on loved ones. Articles examine best practices and models of care; a global view of the disease; the effects on caregivers; and what may lie ahead for a disproportionately underfunded research community.Unnecessary hospital and emergency department (ED) visits are particularly difficult on people with Alzheimer’s—and costly to the health care system—but they experience them more often than their counterparts without dementia. Zhanlian Feng of RTI International and colleagues examined Medicare claims data linked to the Health and Retirement Study to determine hospital and ED use among older people with and without dementia across community and institutional settings. They found that in the community older people with dementia were more likely to have a hospitalization or ED visit than those without dementia, and that both groups had a marked increase in health care usage near the end of life.
Specifically, they found significant differences in hospitalizations and ED visits among community-dwelling residents, with 26.7 percent of dementia patients versus 18.7 percent of non-dementia residents experiencing hospitalization, and 34.5 percent versus 25.4 percent experiencing an ED visit. Differences were less pronounced among nursing home residents and tended to even out among all groups in the last year of life. The researchers suggest that policy makers consider promoting the use of alternative end-of-life options such as hospice care and providing supportive services and advance care planning to Medicare beneficiaries that can help reduce avoidable hospital-based care.
A New York City caregiver support model translates into big potential savings in Minnesota. Kirsten Hall Long of K. Long Consulting and coauthors modeled the effects of adopting the New York University Caregiver Intervention (NYUCI) program across Minnesota from 2010 to 2025 and predicted a potential direct care cost savings of $996 million to the state over the period. They also found that 19.3 percent fewer people with dementia would die in institutions during this time frame and approximately 5.0 percent more people living with dementia would remain in their homes each year after three years of program implementation.
The NYUCI program provides enhanced caregiver support services consisting of six sessions of in-person counseling, encouragement to participate in a weekly support group, and ad hoc telephone counseling. The authors suggest that with widespread adoption, substantial caregiver participation, and reasonable program costs, programs like this may provide an immediate path to moderate the alarming and growing dementia-related expenditures.
Who your doctor is has always mattered. If you are a dementia patient in the hospital, what specific kind of doctor you have can also make a difference. Joan Teno of Brown University and coauthors studied rates of feeding tube insertion for hospitalized elderly people with dementia and determined that differences and changes in the types of attending physicians had a dramatic effect on the likelihood of feeding tube insertion. They found that feeding tube insertions were more common when subspecialists (11.0 percent) or a mix of doctors (15.6 percent) were overseeing care versus a hospitalist (1.6 percent) or nonhospitalist generalist (2.2 percent).
Eating problems are common in an estimated 86 percent of people with advanced dementia. Yet the practice of using a feeding tube can conflict with family wishes for comfort care, is not necessarily associated with improved survival, and carries adverse effects. With trends continuing toward treatment by a mixture of physicians in hospitals, the authors recommend reexamining the role of the attending physician and implementing practices to ensure better coordination of care, especially for this most frail of patient populations.
Alzheimer’s in African Americans is more prevalent and manifests itself differently—determining why will remain a persistent challenge without more data. Lisa Barnes and David Bennett of Rush University Medical Center provide a review of the evidence behind biologic, cultural, health systems–based factors that may be contributing to African Americans’ two- to three-times higher lifetime risk of developing Alzheimer’s disease when compared to non-Hispanic whites.
The authors maintain that cognitive tests done over time actually indicate small or no differences in performance among these populations and that studies on risk factors have produced useful, yet insufficient, explanations of the disparities—largely due to the lack of African American participation in research studies.
They offer four recommendations to advance the understanding of Alzheimer’s in African Americans: 1) include African Americans without dementia in studies of Alzheimer’s; 2) research institutions and academics need to be more visible and actively involved in the communities they serve; 3) study a range of risk factors and their effects on cognition over time; and 4) go beyond traditional cognitive function tests, including imaging, biomarkers, and autopsy studies, to aid in accurate diagnoses.
In addition, Health Affairs Senior Editor Jonathan Bor’s Report from the Field provides a detailed analysis of the state of Alzheimer’s research and areas of promise and challenge for the National Institutes of Health and other major research institutions.
Support for the issue comes from Eli Lilly and Company; the Alzheimer’s Association; Janssen Research & Development, LLC; and Accelerate Cure/Treatments for Alzheimer’s Disease (ACT-AD).
# Have something to share with the Caregiving Listserve? Email Grace at gracewhiting@caregiving.org with your submission.
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