Vol. 15, No. 3
August 27, 2015
Alzheimer's Caregiver Support Act (H.R. 3090)
  • This bill amends the Public Health Service Act in authorizing The Secretary of Health and Human Services to make grants available to both public and nonprofit private health care providers for the purpose of expanding training and support services for families and caregivers of persons with Alzheimer's disease.
Community Based Independence for Seniors Act (S. 704)
  • This bill indicates that The Secretary of Health and Human Services is responsible for creating a Community-Based Institutional Special Needs Plan demonstration program intended to both prevent and delay the institutionalization, under the Medicaid program, of eligible low-income Medicare beneficiaries.
LGBT Elder Americans Act of 2015 (S. 1765)
  • This bill amends the Older Americans Act of 1965 to include lesbian, gay, bisexual, and transgender (LGBT) persons within its scope, particularly in identifying them among those with the greatest social need.
Social Security Caregiver Credit Act of 2015 (H.R. 3377)
  • This bill amends Title II of the Social Security Act to credit deemed wages to people serving as caregivers of dependent relatives for up to five years of such service.
28 States + 34 Bills Passed = More Support for 22 Million Family Caregivers
  • This AARP Blog entry highlights how 28 states have acted to support both family caregivers and those they care for, and list the following initiatives among the actions taken:
    • The Caregiver Advise, Record, Enable (CARE) Act that supports family caregivers when their care recipients enter and leave a hospital
    • Bills to assist family caregivers navigate financial challenges
    • Workplace flexibility bills to assist working caregivers balance responsibilities at home and work
Guardian or Conservator: Powers and Duties (A.B. 436)
  • This bill amends existing law by requiring a court upon granting or denying authority to a conservator to place a conservatee with dementia in a secured residential or nursing facility and authorize the administration of prescribed medications appropriate for the care and treatment of dementia, to either order the continuation or discharge of the conservatee's legal representation.
Illinois House Bill Family Leave Insurance Program (H.B. 166)
  • This bill requires the Department of Labor to establish and administer a Family Leave Insurance Program, which provides family leave insurance benefits to eligible employees who take unpaid family leave to care for a newborn child, a newly adopted or newly placed foster child, or a family member with a serious health condition.
New Jersey
Establishes "New Jersey Task Force on Abuse of Persons who are Elderly or Disabled." (S. 3128)
  • This bill establishes the "New Jersey Task Force on Abuse Against the Elderly and Disabled," which shall take the following actions:
    1. Evaluate current policies that are designed to protect both older adults and persons with disabilities from instances of abuse, neglect, and financial exploitation.
    2. Identify any existing circumstances that allow for the inadequate protection of older adults and persons with disabilities against instances of abuse, neglect, and financial exploitation.
    3. Develop recommendations for legislation, policies, and strategies that would provide a more effective and efficient means by which to protect both older adults and persons with disabilities from instances of abuse, neglect, and financial exploitation.
A Mobile Health Intervention Supporting Heart Failure Patients and Their Informal Caregivers: A Randomized Comparative Effectiveness Trial
  • This Journal of Medical Internet Research paper discusses the results of a randomized comparative effectiveness trial testing the impact of systematic feedback to heart failure (HF) patients' informal caregivers, compared to patients receiving standard mHealth monitoring and self-management education.
  • The following are some of the paper highlights:
    • Providing caregivers with both automated updates and guidance on self-care support may enhance the beneficial effects of mHealth for HF patients' health and self-management.
    • Due to increasing numbers of patients with chronic illness and the growing strains on clinical resources, health systems using mHealth approaches should consider creative ways to engage patients' social supporters to play a more active role.
    • Trials such as this one that include frequent mHealth monitoring may uncover intervention effects that are missed through more intermittent surveys and lengthy retrospective recall intervals.
Explosion in Senior Households by 2030 Demands Housing and Community Adaptations
  • Due to the significant growth of the older adult population, a call for innovation and action on the following three (3) fronts regarding the urgency of developing policies that permit older adults to remain in their homes as they age are emphasized in this Urban Institute Urban Wire commentary:
    • We must prepare to address a large increase in cost-burdened households.
    • We need to encourage and support home modifications that make homes safer, healthier, and more efficient for older adults.
    • We need to both encourage and support changes in the community.
California's Medicaid Personal Care Assistants: Characteristics and Turnover among Family and Non-Family Caregivers
  • This University of California San Francisco (UCSF) Health Workforce Research Center on Long-Term Care Research Report describes the personal care assistance role played by both family members and non-family in California, one of the nation's largest consumer-directed Medicaid personal care assistance programs.
  • The following conclusions are cited in the report:
    • The turnover rate of California's Medicaid program personal care assistants is relatively low, which may be partly due to high rates of family member participation.
    • For those with non-family personal care assistants, raising pay may be an important key to stabilizing the workforce and improving continuity of care.
    • Racial and ethnic minorities who do not have family members to provide personal care assistance may particularly need additional supportive policies to reduce worker turnover.
Medicare Says Doctors Should Get Paid To Discuss End-Of-Life Issues
  • This National Public Radio (NPR) Health News release describes how the government is currently proposing that Medicare reimburse doctors in their practice for initiating advanced care planning (e.g., nondirective counseling that commonly leads to discussions about end-of-life treatment options and legal documents) with their patients, whenever they occur.
AgeSafe's Radar Technology Offers New Way to Keep Elders Safe at Home
  • This New America Media News Feature article details how AgeSafe, through low-power radar, both detects and monitors care recipients' activities automatically, which caregivers can observe on the terminal screen or mobile devices anywhere at all times.
  • Upon detecting immobility or an unusual posture, AgeSafe sends an alert to the caregiver and triggers the emergency response system.
Now Yelp Can Help Patients Pick a Hospital or Doctor
  • This Multi Briefs Exclusive article details how Yelp, the online review service that displays consistently favorable consumer opinions about Family Caregiver Alliance (FCA), will provide a new feature that will include actual data about hospitals, nursing homes, and dialysis clinics.
  • The following data will be included:
    • Emergency room wait times
    • Quietness
    • Fines a facility may have paid
    • Any serious deficiencies that may have been reported
The 10 Best Cities for Technology-Assisted Living
  • This Redfin Blog Real Estate News & Analysis post displays information about the best cities for technology-assisted living for older adults, which were determined by analyzing Redfin housing data and identifying those that are served by Uber, Rover, Porch, Instacart, and CareLinx.
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 to the provision of exceptional home care to families affected by this disease, and to give these families support and rest.
2016 Class of Dole Caregiver Fellows
  • The Elizabeth Dole Foundation is now accepting applications for its 2016 class of Dole Caregiver Fellows.
  • This fellowship provides those caring for wounded, ill, and injured services members and veterans the opportunity to advise national leaders through the Foundation's network of public, private, and nonprofit organizations.
  • Dole Caregiver Fellows also serve as spokespeople for their peers, elevating the nation's awareness of the contributions and struggles of the 5.5 million Americans caring for someone who has served.
New Resources for CBOs: The SCAN Foundation Linkage Lab Initiative
  • The SCAN Foundation, through its Linkage Lab Initiative, is now offering a suite of resources for CBOs seeking partnerships with the health care sector. Resources include the following:
    • Case studies from the first cohort of Linkage Lab grantees, which include information about their key objectives and strategies, successes, challenges, and lessons learned.
    • Free online learning modules for CBOs to build leadership and management capacity.
    • Perspectives from Dr. Bruce Chernof on the importance of forming effective health care/CBO partnerships.
*All FCA/NCC Caregiving Policy Digest Research Registry listings are displayed in the manner they were received by FCA/NCC.
Professional Studies
EPOCH study: mild to moderate Alzheimer's disease
(This information has been provided by Merck)
EPOCH is a clinical research study that evaluates the safety and effectiveness of an investigational medication to see if it may help slow the progression of mild to moderate Alzheimer's disease. Participants must be between 55 and 85 years of age, have had memory problems for at least one year, and have someone in their life who can attend study visits with them and help them follow study requirements.  For more information about the EPOCH study and possible risks and benefits of participation, call 1.844.675.7575 or visit  The EPOCH study is sponsored by Merck.
Life Enhancing Activities for Family Caregivers (LEAF)
Researchers at the University of California San Francisco are testing a program for family caregivers of people with dementia. Six positive emotion based skill-building sessions are delivered one-on-one via videoconferencing on study-supplied tablet computers, so caregivers can take part from anywhere in the USA. Study consists of six weekly hour-long sessions, nightly home practice, and online surveys. To be eligible, you must be the primary caregiver of someone with any type of degenerative dementia, and you must have consistent access to a reliable wifi connection for your weekly sessions. For more information, please access our website:, email us at:, or call (415) 514-2935
Graduate Studies
Cognitive Processes and Growth among Caregivers of Persons Diagnosed with HIV/AIDS
Researcher Erin Norton at The Chicago School of Professional Psychology, L.A. Campus is leading a study about cognitive adaptation and posttraumatic growth among caregivers of persons diagnosed with HIV/AIDS, and is seeking current caregivers of persons diagnosed with HIV/AIDS to provide data by participating in an online survey.
Leisure Participation and Quality of Life of Informal Caregivers
Do you take care of a loved one with dementia? Would you like to share your experience? We are conducting a research study on caregivers' quality of life and satisfaction with leisure activities. The survey takes 15-20 minutes and will remain anonymous. If you choose to participate you will have the choice to enter a raffle for a $30 Amazon gift card.

Participants must be over the age of 18 and currently act as an unpaid caregiver to an individual who has Alzheimer's disease or other dementia.  Thank you!

Zoë Pontius-Courtney, BSN
John Ryan, BS
Zoë Walp, BA
Research supervisor: Yan-hua Huang, Ph.D., OTR/L

Department of Occupational Therapy, California State University, Dominguez Hills, (310) 243-3626
The Experience of Caring for a Parent
You are invited to participate in an anonymous online study on caregivers of parents and related emotions.

If you are a caregiver for your parent, please consider participating in this survey. The study, conducted by Ashley Mezzasalma at the Wright Institute, takes approximately 30 minutes to complete. The survey involves filling out questions about your own experiences & emotions as a caregiver.

Participation is voluntary and you can stop at any time.

If you are interested go to:

This research is being conducted by Ashley Mezzasalma, through the Emotion, Personality & Altruism Research Group (EPARG),  Wright  Institute, Berkeley, & is supervised by Lynn O'Connor, PhD. The study meets the requirements for the doctoral dissertation.