Caregiving Policy Digest | Vol. 16, No. 5 | June 1, 2016

Vol. 16, No. 5

June 1, 2016

Americans Giving Care to Elders (AGE) Act of 2016 (H.R. 5196)

  • This bill amends the Internal Revenue Code to allow caregivers a tax credit for up to $6,000 of the eldercare expenses incurred for their parents. It also amends the Older Americans Act of 1965 to: (1) increase and extend through FY 2020 the authorization of appropriations for the National Family Caregiver Support Program, and (2) require the Department of Health and Human Services to award a grant to or enter into a cooperative agreement with a public or private nonprofit entity to establish a National Resource Center on Family Caregiving to provide information on and support for family caregiver support programs.

Compassionate Care Act (S. 2961)

  • This bill calls for the establishment of advance care planning guidelines for health care providers and a national consumer education campaign to inform the public of the importance of advance care planning and of a person’s right to direct and participate in health care decisions about end-of-life care.

Support Our Military Caregivers Act (H.R. 3989)

  • This bill permits a person to elect to have an independent contractor perform an external clinical review of matters including, but not limited to, a Department of Veterans Affairs (VA) denial of a person’s application to be a caregiver or family caregiver eligible for VA benefits; with respect to an approved application, a VA determination of the level or amount of personal care services that a veteran requires; or a revocation of benefits by the VA.

VA Construction and Lease Authorization, Health, and Benefits Enhancement Act (H.R. 5286)

  • This bill includes a provision that the Secretary of the Department of Veterans Affairs (VA) shall implement an information technology system that fully supports the VA Family Caregiver Program and its expansion through data assessment and comprehensive monitoring of the Program.

Veterans Choice Program Resolution Act (S. 2871)

  • This bill amends section 101 of the Veterans Access, Choice, and Accountability Act of 2014 to establish the position of Choice Program Ombudsman within the Office of Inspector General of the Department of Veterans Affairs (VA). The Ombudsman would be responsible for managing complaints from veterans and persons acting on behalf of veterans (including family members and caregivers) regarding the provision of hospital care and medical services under section 101 of the original Act.

How Paid Family Leave Could Become a Reality in the U.S.

  • This article from CNNMoney highlights the growing trend among states to provide guaranteed paid family leave insurance programs, in light of the needs of many working Americans who must take time off from work to care for a new baby or an ailing parent or spouse, but cannot afford to do so without pay. Four states--California, New Jersey, Rhode Island, and New York--have recently passed paid family leave measures, and at least 15 other states, as well as Washington, D.C., have ongoing efforts to pass paid family leave legislation. 

Caregiver Advise, Record and Enable (CARE) Act of 2015

  • Recently passed in Hawaii (H.B. 2252), Maryland (H.B. 1277), Minnesota (S.F. 107), and Washington, D.C. (B. 21-0230), this bill enables family caregivers to provide safe and effective home care to older adults. In particular, the bill supports family caregivers when their loved ones are admitted to the hospital, and helps them to learn how to safely provide care at home once their loved ones are discharged from a medical facility. The bill contains three central provisions: (1) the name of the family caregiver is recorded when a loved one is admitted into a hospital or rehabilitation facility; (2) the family caregiver is notified if the loved one is to be discharged to another facility or back home; and (3) the hospital or rehabilitation facility must provide an explanation and live instruction of the medical tasks—such as medication management, injections, wound care, and transfers—that the family caregiver will perform at home. Since mid-May 2016, the CARE Act, in some form, has been signed into law in 24 states, Puerto Rico, and the US Virgin Islands and is under consideration in others.

Aging-Abuse Records-Disclosure (H.B. 4552)

  • This bill amends the Adult Protective Services Act, adding State's Attorney's offices to the list of persons and agencies granted access, upon request, to records concerning reports of abuse, neglect, financial exploitation, or self-neglect. It also removes a provision making such records subject to disclosure as authorized by other applicable law.

Computational Modeling of Caregiver Stress

  • In this recent study, slated for publication in the Journal on Policy and Complex Systems, researchers applied computational modeling methods to better understand the impacts of policy alternatives intended to help reduce stress among caregivers providing support to family members with Alzheimer’s disease. Potential options to reduce caregiver stress include increased respite care, tax incentives, flexible workplace policies, and adult day services. Researchers found that policy options providing programs, services, and support for caregivers can reduce their stress by providing a minimum of 16 hours per week of respite care.

The Dual Pressures of Family Caregiving and Employment

  • New research from AARP’s Public Policy Institute explores the strain on the growing number of working caregivers of an adult relative with a serious illness or disability. The data show that stress occurs when persons have to manage the responsibilities of both caregiving and work simultaneously, with roughly 37% of employed caregivers saying their caregiving situation is highly stressful. Findings also indicate that family caregiving responsibilities can interfere with paid employment: nearly one in six caregivers left their jobs because they could not afford to hire paid help for their family member or friend. These findings suggest a mounting need for flexible work options, paid family leave and sick days, and more comprehensive workplace anti-discrimination policies to protect working family caregivers.

Role of Psychosocial Work Factors in the Relation between Becoming a Caregiver and Changes in Health Behavior: Results from the Whitehall II Cohort Study

  • This research study, published in the Journal of Epidemiology and Community Health, tested the effects of becoming a caregiver combined with adverse working conditions on changes in health behaviors, using questionnaires to assess psychosocial work factors and health behaviors, including smoking, alcohol consumption, and exercise. Researchers found that those who became caregivers were more likely to increase frequency of alcohol consumption, but only if they also reported less flexibility and control in decision-making at work, or belonged to a lower socioeconomic class. By contrast, caregivers were more likely to quit smoking if job demands were low, or if social support at work was high. These findings underscore the importance of a well-balanced work environment as a resource for people exposed to increased family demands.

Are Women as Caregivers Getting a Raw Deal?

  • This article from Forbes explores how the limitations of the Family Medical Leave Act (FMLA) and the benefits it guarantees--in particular, that its protections do not apply to those who wish to take time off from work to provide care to aging family members unless they have a specific, serious medical condition--has disparate impacts on males and females. Most caregivers for aging loved ones are daughters and daughters-in-law, many of whom must quit their jobs to meet an aging parent’s needs because state and federal statutes do not have sufficiently robust benefits for family caregivers of older adults.

Doctors are Slowly Opening up their Notes to Patients—and to Caregivers

  • This article from Forbes highlights the national OpenNotes movement, which encourages physicians to share medical records and the observations they record after patient visits. The movement is gaining traction across the country as medical culture moves toward full patient participation in care, and as computers make secure information sharing easier. OpenNotes are a way of involving patients more actively in their own care, and a means for family caregivers to remain engaged in decision-making about care even from a distance, with positive impacts on patient health outcomes and caregiver stress levels.

Perhaps it’s Time to Celebrate a Day in Honor of Caregivers

  • This editorial from NPR uses commentary on the challenges and criticisms of motherhood to make a broader point about the value of caregiving, the mounting state of crisis in American eldercare, and the need for problem solving above judgment. As our country ages, the author suggests, “we are all about to become mom.” The author argues that nearly everyone will have to grapple with the complications of caring for aging Americans within a fragmented caregiving infrastructure in the coming years, and that perhaps this is the point at which the country might finally address its caregiving crisis—the point at which judgments about self-sufficiency and accountability may cease, and problem-solving may actually begin.

Supporting Children Who Serve as Caregivers

  • This story from The New York Times highlights the fact that about 1.4 million children in the United States, some as young as 8, are partly or fully responsible for the wellbeing of adults or siblings they live with. According to the American Psychological Association, these children care for persons with a disability or illness and come from low-income, often single-parent homes. Also, resources such as the Caregiving Youth Project in Florida are featured as available supports for young caregivers.

mHealth’s Missing Link: Technology That Helps the Caregiver

  • This article from mHealth Intelligence discusses findings from the recent HITLAB study on what caregivers want and need from technology. A major finding indicates that 70 percent of family and friends that provide care to a loved one at home are interested in using mHealth technology to help them in carrying out their caregiving tasks. Also, although 60 percent would use whatever is currently available, only 7 percent are actually using it.

This Video Game Could Help Doctors Diagnose Dementia

  • This CNN article reviews a new mobile game called Sea Hero Quest, which tracks spatial awareness among its users as they progress through the game. Scientists can use the generated data to gain insight into someone’s spatial navigation abilities, one of the first skills lost at the onset of dementia. Researchers hope to use the game to crowdsource data to help identify the normal range of navigation skills and spatial awareness, and subsequently develop guidelines to spot dementia early.

Using Big Data to Help Understand the Lives of Family Caregivers

  • This Forbes story describes the FCA-sponsored Atlas of Caregiving project, which tracked the lives of 14 families in the San Francisco area in order to learn if a similar study involving many more families could render big data that would allow for better understanding of the the daily experiences of family caregivers. The data collection methods used (i.e., participant logs) show promise in supplementing and improving traditional caregiver survey methods.

Alzheimer’s and Dementia Care Relief Grant Program

  • Hilarity for Charity and the Home Instead Senior Care network are collaborating to award home care grants to those providing care to their loved ones living with Alzheimer's disease or other dementias. The grants will be awarded across the United States and Canada, and are meant to contribute to the provision of exceptional home care to families affected by this disease, and to give these families support and rest.

Seed Grants Available for the Start-up of Dementia Day Programs

  • The Brookdale Foundation Group has issued a Request For Proposals (RFP) for the start-up of new social model Group Respite or Early Memory Loss (EML) programs for people with Alzheimer's disease and related dementias. In October 2016, The Foundation will be awarding up to 15 seed grants for the development of dementia-specific Group Respite programs or specialized programs for people with EML. The grants are $10,000 for the first year with an opportunity for a second tier grant of $5,000. Any 501(c)(3) or equivalent not-for-profit service agency wishing to develop a social model day program for Alzheimer’s families is invited to apply. Proposals are due at The Brookdale Foundation Group office in New Jersey on Thursday, July 7, 2016. More information can be obtained by visiting

FCA Call for Caregiver Stories for the News Media

  • FCA often receives requests from the news media seeking family caregivers served by FCA willing to be interviewed about their caregiving experience and how FCA has helped them. If you would like to share your caregiving stories and how FCA has helped you, please complete the online form to be added to the list of FCA's caregiver media ambassadors.

FCA Releases Updated Caregiver Statistics Fact Sheets

Put Your Family Caregiving on the Map (from the Atlas of Caregiving Pilot)

  • The Atlas of Caregiving Pilot offers information on how caregivers can create their own care map, a helpful way to visually represent all the people and services involved in a family caregiving situation. Once completed, the map will show all the persons who are providing care and the relationships between them.

Resources for CBOs: The SCAN Foundation Linkage Lab Initiative

  • The SCAN Foundation, through its Linkage Lab Initiative, offers a suite of resources for CBOs seeking partnerships with the health care sector. Resources include case studies from the first cohort of Linkage Lab grantees (includes information about their key objectives and strategies, successes, challenges, and lessons learned), free online learning modules for CBOs to build leadership and management capacity, and perspectives from Dr. Bruce Chernof on the importance of forming effective health care/CBO partnerships.

The Community Research Center for Senior Health (CRC-SH) Offers a New Resource in the Arena of Evidence Based Programs (EBPs)

  • CRC-SH has developed a free web-based toolkit to guide CBOs through the selection, implementation, and evaluation of EBPs to better promote older adult health and well-being.
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