Updates and action briefs from FCA's National Center on Caregiving

Vol. 15, No. 2toppage
July 30, 2015

A message from Executive Director Kathleen Kelly

Dear Readers,

Welcome to our latest newsletter. After a brief hiatus, we are delighted to release this issue that incorporates both a new format and design, which streamlines the presentation of the most significant recent happenings related to caregiving.

Accordingly, FCA applauds the efforts to pass the Caregiver Advise, Record, Enable (CARE) Act--a key advocacy campaign of the American Association of Retired Persons (AARP)--now introduced in over a dozen states and signed into law in 15. There is an increasing recognition of the role of family caregivers across health and social services, and the CARE Act is just one example to integrate unpaid caregivers into systems of care.

Also noted is the newsworthy Senate passage of the Older Americans Act (OAA) that reaffirms the need for supporting the ever-growing number of older adults and their caregivers across the nation. The OAA enables older adults to remain in the community by endorsing the provision of vital services and support to their families, neighbors, and friends who form part of their community network of care.

Once more, FCA is grateful for its supporters and for those who acted/continue to act on behalf of the effort to increase funding for supporting family caregivers in California. As a result, Governor Brown signed the California State Budget (2015-2016) last month, which allocates a $2 million increase to the California Caregiver Resource Centers (CRCs).

In moving onward, we are determined to continue keeping you informed about the latest in caregiving news.

Kathleen Kelly
Executive Director
Family Caregiver Alliance
National Center on Caregiving
785 Market Street, Suite 750
San Francisco, CA 94103
legislationandpolicyLEGISLATION AND POLICY
Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act (S. 1719, H.R. 3099)
  • This recently introduced bill details the development, maintenance, and updating of an integrated national strategy to recognize and support family caregivers as responsibilities of the Department of Health and Human Services (HHS).
  • HHS would be in charge of assembling a Family Caregiving Advisory Council, consisting of relevant federal agencies and others from the private and public sectors (i.e., family caregivers, older adults and people with disabilities, healthcare and LTSS providers, employers, relevant industries, state and local officials, among others) to advise it on recognizing and supporting family caregivers.
  • The strategy would allow for the development of specific actions that government, communities, providers, employers, and others can take to recognize and support family caregivers.
National Care Corps Act (H.R. 2668)
  • This bill details the creation of the National Care Corps within the HHS, with the sole purpose of helping to address caregiving needs through giving volunteers the experience of working with older adults and individuals with disabilities across the nation.
  • Corps members would receive benefits (e.g., health insurance) essential to sustain them during their volunteer period and would be eligible for tuition assistance upon ending their assignment.

The Affordable Care Act and Caregivers

  • This HHS research brief addresses the following topics: Health Challenges of Informal Caregivers and Informal Caregivers and the Affordable Care Act (ACA).
  • The assistance provided by caregivers can put their mental and/or physical health at risk, which subsequently affects their caring for others.
  • Due to the ACA, quality health insurance is currently more accessible and affordable for millions of American informal caregivers, consequently eliminating their having to choose between caring for themselves and caring for someone else due to personal financial constraints.

Senate Makes History with 60% Increase to Alzheimer's Research Funding

  • This Alzheimer's Association  news release details the Senate Appropriations Committee's approval of a historic 60% increase (approximately $350 million) for Alzheimer's disease research.
  • If passed into law, this would be the most significant increase ever in Alzheimer's funding.

How Managed Long-Term Services and Supports is Providing Coordination

  • According to this American Association of Retired Persons (AARP) report, care coordination for older adults is rapidly changing with almost half of the states transitioning to Medicaid-managed care for its populations requiring long-term services and supports (LTSS).
  • As a result, states need care coordination and care coordinators have been identified as critical points of contact for consumers and their family caregivers.

CARE Act: Help for Family Caregivers is Here

  • In this AARP blog entry, the Caregiver Advise, Record, Enable (CARE) Act, as a solution that supports family caregivers when their loved ones enter and leave the hospital, is described and accompanied by updated information regarding its status across the states.

Elder Abuse (S.B. 352)

  • This bill amends an existing law which stipulates penalties for a person who violates any provision of law proscribing theft, embezzlement, forgery, fraud, or specified identify theft provisions of law when the victim is an elder or dependent adult.

In-Home Support Services: Authorized Representatives (A.B. 1436)

  • This bill authorizes an applicant for, or recipient of, in-home supportive services to designate an individual to act as his or her authorized representative for purposes of the In-Home Supportive Services program.
New York 

The Establishment of a Caregiver Support Program for Grandparents and Other Older Adult Relative Caregivers (S. 358)

  • This bill delineates the creation of a caregiver support program for grandparents and other older adult relative caregivers who are providing primary care for children aged 18 and under to provide technical assistance, counseling, and other resources.
research RESEARCH
Valuing the Invaluable 2015 Update: Undeniable Progress, but Big Gaps Remain
  • This AARP report indicates that approximately $470 billion of care, represented by 37 billion hours of care, is provided by family caregivers across the country.
  • Along with updated national and state estimates of the economic value of family caregiving, the many challenges that family caregivers currently experience, key policy developments for family caregivers since the last Valuing the Invaluable 2011, and recommendations to better support caregiving families are detailed.
Caregiving in the U.S. 2015
  • This joint report between the National Alliance for Caregiving and AARP demonstrates that the profile of family caregivers in America is changing as the population grows older, and addresses the following topics:
    • Higher-hour caregivers (21 hours or more of care per week)
    • Caregivers ages 75 and older
    • Multicultural caregivers
    • Challenges caregivers face in the workplace
The Impact of Informal Caregiving on Older Adults' Labor Supply and Economic Resources
  • The effect of informal caregiving on older adults' labor supply and economic resources is analyzed in this The Urban Institute-sponsored study.
  • Although caregiving does not affect the wages or hours of workers, it reduces the likelihood of working.
  • Men who provide personal care to parents or intensive care to spouses are less likely to work, as are women who provide intensive care to parents.
  • As a result, over time, caregivers have a significantly higher probability of falling into poverty and also experience a smaller percentage growth in assets-particularly those who care for their spouses.
Informal Caregiving and Its Impact on Health: A Reappraisal from Population-Based Studies
  • Existing evidence on the health effects of caregiving, particularly a claim that family caregiving is associated with an increased risk for mortality, is re-examined in this Forum article.
  • The following methodological concerns are addressed:
    • The definition of caregiving
    • The composition of different caregiving subgroups
    • The sampling of caregivers
    • The sampling and recruitment of appropriate noncaregiving comparison groups
  • Contributing to a more updated and balanced portrayal of the health effects of caregiving in the research literature, lay media, and public policy realm are outlined as an essential goal.
A Review of Ethnicity, Culture, and Acculturation Among Asian Caregivers of Older Adults (2000-2012)
  • Domains of care experiences among studies of Chinese, Filipino, Japanese, Korean, and Vietnamese caregivers in the United States and Canada between 2000 and 2012 are identified in this review.
  • Three primary domains exist across subgroups (caregivers' experiences, cultural values, and acculturation).
  • Studies of older adults and their caregivers that are sensitive to specific racial/ethnic and cultural subgroup differences are needed to inform policy and practice.
More Caregivers Are No Spring Chickens Themselves
  • The health implications of the old taking care of the old, as both a growing and newsworthy phenomenon, are examined in this The New York Times article.
technology Technology
Can Technology Ease The Burden Of Caring For People With Dementia?
  • The $10 million collaboration study between the University of California, San Francisco (UCSF), and the University of Nebraska Medical Center that involves developing a dementia "ecosystem" is described in this National Public Radio (NPR) story.
Mobility for Older Adults
  • Uber promotes its launch of a pilot program for community-based senior outreach, specifically addressing the transportation issue experienced by many aging Americans. Accordingly, Meghan Joyce, Regional Manager for Uber East Coast, announced at the 2015 White House Conference on Aging that Uber will offer both no-cost technology tutorials and rides at select retirement communities in cities across the nation. However, Lift Hero, which offers a phone interface for older adults to call in and book rides, may prove to adapt best to satisfying their transportation needs.
Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards
  • Family Caregiver Alliance (FCA), with resounding support from the Rosalinde and Arthur Gilbert Foundation, is pleased to oversee the 8th annual Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards Program that is now accepting applications.
  • The program promotes strengthening caregiving for people with Alzheimer's disease, and stimulating innovation in this field by both recognizing and rewarding the efforts of those who lead the way in addressing the needs of Alzheimer's disease caregivers.
  • One $20,000 award will be given in each of the following categories:
    • Creative Expression
    • Diverse/Multicultural Communities
    • Policy and Advocacy
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 in the provision of exceptional home care to families affected by this disease, and to give these families support and rest.
professionalstudiesProfessional Studies
Building an Atlas of Caregiving Together: A New Research Project at FCA
  • Researchers at FCA, Bhageera, Inc., and Dubberly Design Office are collaborating to conduct a novel study to understand the actual lived experience of everyday caregiving, and are seeking participants in the San Francisco/Silicon Valley area actively involved in the day-to-day care of a family member or friend (more than 2 hours per day) to provide data through traditional caregiver interviews alongside new wearable technologies.
Caregiver Skill Building Intervention for Family Caregivers of Persons with Alzheimer's Disease Living at Home
  • Researchers at Rush University are seeking participants to partake in a study that aims to provide new information to caregiver relatives of people with dementia. Specifically, through online training modules, the study has been designed to inform these caregivers on how to care for their relatives while taking care of themselves.
Life Enhancing Activities for Family Caregivers (LEAF)
  • Researchers at the University of California, San Francisco (UCSF) are testing a program for family caregivers designed to increase levels of positive emotion, which in turn can help lower stress and support ways of coping with the stresses of caregiving, and are seeking caregiving adults nationwide to participate in the LEAF Study.
graduatestudies Graduate Studies
Leisure Participation and Quality of Life of Informal Caregivers
  • Researchers at California State University (Cal State or CSU) are conducting a study on caregivers' quality of life and satisfaction with leisure activities, and are seeking current unpaid caregivers to individuals who have Alzheimer's disease or dementia to share their experiences through an online survey.  
The Experience of Caring for a Parent
  • Researcher Ashley Mezzasalma at the Wright Institute is leading a study about caregivers of parents and related emotions, and is seeking caregivers of parents to share their experiences by participating in an online survey. 
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