Family Caregiver Alliance
Volume XV, Number 1, February 26th, 2015

Honoring FCA's Co-Founder, Suzanne Harris (1919-2015)       


It is with great sadness that we report the passing of our esteemed Co-Founder, Suzanne "Sue" Harris on February 21, 2015. Sue was a tireless advocate for family caregivers whether with policy makers, donors or researchers. We dedicate this issue to her memory. 


Sue became involved with the grassroots effort to establish FCA almost four decades ago. She was a volunteer with San Francisco's Mental Health Association when she joined forces with other family members and health professionals to solve some of the problems facing caregivers of adults with dementia, stroke, head injuries and other cognitive impairments. In addition to her work for FCA, Sue was instrumental in advocacy efforts to establish the California Network of Caregiver Resource Centers (CRC). Even throughout these past 20 years, Sue was still actively helping to guarantee FCA's future through continued fund-raising efforts. 


Sue would not let us get away with honoring her without including a request to our audience to get involved and contribute to the effort of bringing caregiving into the state and national governments' spotlights. Volunteer, advocate, donate, or simply share your caregiving story.  


FCA's venerable founder leaves these words of advice: "Never lose sight of the caregiver's perspective. And always bear in mind that our focus is on empowering family members to help themselves, rather than managing their problems for them."


Sue kept us honest to the caregiving mission and was a great friend. Sue will be remembered fondly and missed tremendously.  


Kathleen Kelly, Executive Director

Family Caregiver Alliance, National Center on Caregiving

(San Francisco, CA)

[Read full blog post: FCA Co-Founder, Suzanne Harris, Remembered 

State Legislation, Policy & Reports
Articles of interest on pending and proposed legislation as well as current policies and new reports surrounding caregiving and healthcare at the state level.

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Federal Legislation, Policy & Reports 

Articles of interest on pending and proposed legislation as well as current policies and new reports surrounding caregiving and healthcare across the United States.

International News

Articles on pending/proposed caregiving legislation, or current policies and reports on caregiving, healthcare around the world.   
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Research Reports & Journal Articles

Organizational reports and professional journal articles of interest surrounding caregiving and healthcare nationally and world-wide.

Conferences & Trainings

Upcoming trainings, educational conferences and speaker series on caregiving and related healthcare topics

1. Military Caregiver Webinar ( Spanish) -Thursday, March 5th (1pm Central, 2pm Eastern)

2. Speaker Announcement for the National Summit on Advanced Illness Care: Driving Change through Leadership, Evidence and Action
3. Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards Reception at the 2015 Aging in America, (Annual Conference of the American Society on Aging)
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Caregiving & Technology

Covering advancements in technology that serve caregivers through product design, downloadable apps, new tools or computerized services.

1. Tech4Care: Products for Caregivers - Family Caregiver Alliance has launched an online service to match new technologies with the families that can use them.  
Funding, Media & Miscellaneous 

Information and links related to funding, grants, media events and more...


[No articles in this section for this issue] 
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FCA Research Registry Listings


This is a current listing of professional and graduate level studies on caregiving topics seeking participants (All can be found in more detail on our Research Registry page, as well as information on how to submit a listing.) 


2. The Family Caregiver's Experience - Examining the Positive and Negative Aspects of Compassion Satisfaction and Compassion Fatigue
STATE . . .

Oklahoma creating an Advisory Council on the Effect of Alzheimer's Disease in the state  

This bill proposes to create an advisory council which will update the strategy to mobilize a state response to Alzheimer's disease. The council will evaluate state trends in the number of people with Alzheimer's disease, the states role in providing long term care and caregiver support as well as examining existing services, resources and capacity.  


New Jersey allocates $250,000 towards a "Naturally Occurring Retirement Community" pilot program. 

This bill would allocate $250,000 for a pilot program investigating the outcomes of investing in 'naturally occurring retirement communities' (NORC). NORCs address the needs of elderly residents by providing a wide array of social, health-care, mental health and other support services at a defined community center or location. 


New Jersey State requires Dept. of Human Services to use and update NJ Elder Index and related data to the extent possible

The New Jersey Elder Economic Security Standard Index (NJ Elder Index) is a tool that measures the income older adults require to make ends meet and to remain in their own homes. This bill proposes that the Department of Human Services should utilize the NJ Elder Index to improve the coordination and delivery of public benefits and services to older adults residing in the State and as a planning tool to allocate public resources more efficiently   


New Jersey Signs CARE Act into law

In November 2014 Gov. Christie Signed into law the Caregiver Advise, Record, Enable (CARE) Act which will come into effect in May 2015. This Act will serve to address some of the problems present in our current hospital discharge procedures.

Up until now, family members have often been bombarded with a range of responsibilities upon their loved one's discharge. These expectations frequently include medical/nursing tasks such as managing medications, providing wound care, managing social diets and/or operating specialized medical equipment. This is often an overwhelming experience for untrained family members.

The CARE Act aims to improve this current practice with 3 important features

  • The name of the family caregiver is recorded when a loved one is admitted into a hospital or rehabilitation facility.
  • The family caregiver is notified if the loved one is to be discharged to another facility or back home.
  • 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
  • The goal of these modifications is to better equip caregivers with the skills to care for their loved one after discharge while simultaneously improving the health outcomes of the patient.

New Jersey is now the second state to enact the CARE Act, following the pioneering move made by Oklahoma in earlier 2014. Hawaii has created a task force to investigate the potential impact of this regulation, the findings of which are scheduled for release in January 2015.

AARP Iowa is also developing legislation to be proposed in early 2015 similar to the CARE Act recently passed in New Jersey

Alaska activates Silver Alert system

In October 2014 Alaska activated their long awaited Silver Alert system which serves to help locate missing adults with a focus on elderly individuals with Alzheimer's disease, Dementia or other mental/developmental disabilities.


Considering the states growing elderly population coupled with its harsh weather and landscape this system provides excellent assistance in the effort to improve outcomes for missing and vulnerable adults.


Connecticut proposes incentives for the establishment of affordable housing for senior citizens

This newly introduced bill aims to introduce incentives for the establishment of affordable housing for senior citizens.


New York Pilots 'Night Care' Program for Alzheimer's Residents

The New York State Department of Health has funded a nine month pilot to offer overnight respite care to older adults who live at home and who suffer from Alzheimer's disease and other forms of moderate-to-severe dementia.

The program will commence with sessions twice a week with two patients and growing to three times a week with 31, a staff of specially trained nurses, aides and recreation therapists. Activities involving music, art and even aroma therapy will be employed as these have been shown to "help stave off the restlessness, disorientation, depression, anxiety, and even verbal and physical aggression, collectively known as "sundowning," from which many dementia patients suffer at night." This will greatly assist working caregivers who are frequently missing out on a good night's sleep, allowing them to care for their loved one in the home for a longer period.    


Colorado hospitals hit by Medicare penalty for high readmission rates.

Colorado hospitals which receive Medicare Payments will be penalized this year for their relatively high rates of readmissions. The worst rated hospitals will be hit with penalties ranging from 1.29 to 0.56%. These repercussions come as a result of the Affordable Care Acts effort to reduce avoidable readmissions to hospital within 30 days of discharge. Research estimates that over $17 billion of that could be avoided with better care during and after hospitalization.


Older Americans Act Reauthorization Act of 2015 introduced  

We are pleased to announce that Senator Alexander and Senator Murray introduced The Older Americans Reauthorization Act 2015 on Tuesday January 20th. This bill would fund critical services that keep older adults healthy and independent----services like meals, job training, senior centers, caregiver support, transportation, health promotion, benefits enrollment, and more.


The bill includes provisions that aim to protect vulnerable elders by strengthening the Long-Term Care Ombudsman program and existing elder abuse screening and prevention efforts.


AARP's Advocacy Agenda: Caregivers, Consumers, Independent living and Health coverage

In January 2015 the AARP released their state Advocacy Agenda detailing the most prominent topics they aim to tackle in 2015 across each state


For caregivers, the AARP's primary goal is to increase the level of support provided by advocating for a variety of changes. These include: enactment of the CARE Act in every state, increased or implementation of caregiver employee leave, respite care and consistent power of attorney and adult guardianship laws which are honored from state to state.


Helping to keep older Americans in their home simultaneously meets the wishes of these individuals whilst saving the economy money. In an effort to minimize the retirement deficit which millions of Americans are facing, the AARP argues for increased retirement plans in the work setting and protection of pensions from cuts.


Other issues the AARP intends to address this year include; unfair utility bills and elder financial exploitation, access to affordable healthcare coverage and improving community livability for all ages.


Health outcomes improve in states where nurse practitioners independently provide care

Researchers from the University of Missouri evaluated health outcomes and hospitalization rates of Medicare and Medicaid patients by state and found that in areas where APRNs were fully independent in their practice, significant improvement in quality of care and health outcomes were evident.

This article from Health Affairs highlights the limited support services available to older Americans who wish to take care of themselves in their home. Not only is the level of care insufficient but the way in which support is being offered is often not adequately matched to the type of need. The author found a "desperate need for investment pairing technology innovations with local care delivery options to create community-based "solutions" that affordably and effectively deliver what frail older adults need as they remain in a community, single family dwelling."





St Lucia puts elderly at forefront of care

The Home Care Program is a component of the National Initiative to Create Employment (NICE) and was created by the Saint Lucia government. This program provides care and a helping hand to numerous abandoned senior citizens in the country.


Ireland announces National Dementia strategy
Ireland's Taoiseach (President) Enda Kenny has unveiled a €27.5 million national dementia strategy that will focus on shattering the stigma of the disease and supporting community care. This pledge comes from the Irish Government's partnership with the Atlantic Philanthropies foundation, as both partners strive to better understand and treat the disease over the next four years. 


Improving Quality Measurement and e-Health in Medicaid Home and Community-Based Services: The TEFT Demonstration

More and more Americans receive personal care services in their own homes to help them with daily tasks such as bathing, dressing and meal preparation. But the quality of care provided in private homes often is not measured. The U.S. Centers for Medicare & Medicaid Services (CMS) is trying to change this trend through a new demonstration program called TEFT (Testing Experience and Functional Tools) to help better evaluate and measure these services, with the aim to improve the patient's ability to manage their own care.   


Fewer struggle with medical costs as Obamacare expands coverage

According to the Commonwealth Fund's biennial health insurance survey; the share of U.S. adults who did not get needed care because of cost dropped from 43 percent in 2012 to 36 percent last year, as the health care law's main coverage expansion went into full swing.


Obama tackles America's lack of sick and family leave

A topic of great importance to the FCA was addressed by President Obama recently; the lack of mandated paid sick leave, vacation leave or parental leave in the U.S. To address these challenges, Obama called on Congress to pass the Healthy Families Act, which would allow working Americans to earn up to seven days a year of paid sick time


Changing the Trajectory of Alzheimer's Disease: A Report by the Alzheimer's Association

The report reinforces the value of reaching the 2025 goal set by the National Plan to Address Alzheimer's Disease under the National Alzheimer's Project Act (NAPA) which is to create a treatment (by 2025) that delays the onset of Alzheimer's by five years. According to the report this would reduce the number of individuals affected by the disease by 5.7 million by 2050 and save all payers, including Medicare, Medicaid and families, more than $220 billion within the first five years of the treatment's initiation.


System facilitators and barriers to discussing older driver safety in primary care settings

Primary care physicians play a leading role in counseling older drivers, but discussions often do not occur until safety concerns arise. This study investigates the potential issues and challenges facing physicians as they broach the topic of driving with their elderly patients.


Military Caregiver Webinar ( Spanish) -Thursday, March 5th (1pm Central, 2pm Eastern)

Registration is now open for the latest Military Caregiver Webinar delivered in Spanish. The webinar is scheduled for Thursday, March 5 th (1pm Central, 2pm Eastern) with Easter Seals Dixon Center serving as the host and sponsored by Newman's Own Foundation. Speakers include: Alina Johnson, RN; Elizabeth Dole Foundation Caregiver Fellow - Izabelle Meda-Gibson (Arizona); with resource support from Vigmalia Perez-Calo, VA Caregiver Support Program.   


Speaker Announcement for the National Summit on Advanced Illness Care: Driving Change through Leadership, Evidence and Action

You are invited to join 400+ of the best and brightest to close the gaps in advanced illness care delivery:   

When: March 2nd - 3rd, 2015

Where: Institute of Medicine, National Academy of Sciences,  

2101 Constitution Avenue, NW, Washington, DC

The following speakers are joining the National Summit on Advanced Illness Care: Driving Change through Leadership, Evidence and Action.  


Members of Congress: 

  • Chairman John Isakson, R - Georgia
  • Senator Mark Warner , D - Virginia
  • Senator Sheldon Whitehouse , D - Rhode Island


  • Randy Axelrod, MD, EVP, Clinical and Patient Services, Providence Health and Services
  • Samira Beckwith , President and CEO, Hope Healthcare Services
  • Kenyon C. Burke, President, Kenyon C. Burke Consulting
  • Patrick Conway , Deputy Administrator for Innovation & Quality and CMO, CMS
  • Dan Crippen , Executive Director, National Governors Association
  • Tom Daschle , Former U.S. Senator (D-SD); Founder and CEO, The Daschle Group
  • Chris Dawe , Managing Director, Evolent Health
  • Victor Dzau, MD, President, Institute of Medicine
  • Jeannine English , President, AARP
  • Lennon Flowers , Co-Founder, The Dinner Party
  • Ellen Goodman , Co-Founder and Director, The Conversation Project
  • Bud Hammes , Director of Medical Humanities, Gundersen Health System
  • Dan Johnson , MD, National Clinical Lead for Palliative Care, Care Management Institute, Kaiser Permanente
  • Rev. Rosemary Lloyd , Advisor to the Faith-Based Community, The Conversation Project
  • Cheryl Phillips , MD, Senior Vice President, Public Policy and Advocacy, LeadingAge
  • Leonard D. Schaeffer , Judge Robert Maclay Widney Chair and Professor, University of Southern California
  • Jeff Selberg , Executive Director, Peterson Center on Healthcare
  • Joe Selby, MD, Executive Director, PCORI
  • Rev. Diane C. Smalley , Institutional Review Board, University of Michigan Medical School (IRBMED)
  • Rev. Dr. J. Alfred Smith Jr., Senior Pastor, Allen Temple Baptist Church
  • Brad Stuart , MD, CEO, ACIStrategies
  • Richard Umbdenstock, President and CEO, American Hospital Association         

For more information and to register please click here or contact Jackie Buente at



Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards Reception

You are invited to attend the Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards Reception. The reception will be held at the 2015 Aging in America Conference on Wednesday, March 25th from 6:00pm to 8:00pm at: 


Hyatt Regency Chicago

151 East Wacker Drive

Chicago, Illinois, USA, 60601


This reception honors the recent winners of the Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards. These programs focus on improving the lives of adults with Alzheimer's disease and their family caregivers through creative expression programming, targeting diverse/multicultural communities, and organizing for advocacy and policy changes. The Rosalinde and Arthur Gilbert Foundation and Family Caregiver Alliance's National Center on Caregiving are pleased to host this reception and invite everyone to attend.

 Tech4Care: Products for Caregivers
Family Caregiver Alliance has launched an online service to match new technologies with the families that can use them. Tech4Care offers product developers the opportunity to connect with visitors to the FCA website. New tech products will also be featured in blogs on our website and FCA's two newsletters.


We are on the lookout for new products and apps hitting the market, but for now we've launched with four products to kick off the new service that launched in December of 2014:


GeriJoy-Virtual Care Companions - provides virtual senior care through teams of specially trained remote caregivers who interact with seniors through tablet-based avatars. 


Evermind - provides peace of mind to those who live alone, or who need extra support, and the people who care about them by detecting when electrical appliances are switched on and off. 


RightAssure - by EyeOn App, LLC-developed to help extend independent living and give peace of mind to both people living alone and their friends & families. 


The True Link Prepaid VisaŽ Card - protects a loved one's financial well being and independence with easy-to-set spending controls. 


According to Family Caregiver Alliance's Executive Director Kathleen Kelly, "We're excited to be able to provide families with education and access to emerging technologies--useful tools that offer real, practical value. And because we're located in the heart of innovation in San Francisco, we're ideally positioned to do that."


FCA has a long tradition of utilizing technology to benefit families and caregivers, and in fact has recently received new funding to expand and further develop services and educational offerings for families throughout the country. Interested product makers and marketers can visit our Tech4Care webpage for more information and contact FCA directly through our Advertising and Sponsorship Inquiry form.

Professional Studies:

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. [Read the full study description:]

Caregiver Health-eBrain Study: Research to Improve Brain Health
Are you one of the 15 million caregivers looking after a loved one with Alzheimer's or other dementia? Help scientists understand how the caregiving lifestyle impacts brain performance through an online study that assesses your cognition.
Graduate Studies:

Relationships, Grief, and Life Satisfaction of Spousal Caregivers

This study aims to shed light on how grief over potential losses might affect the connection between caregivers' relationships and life satisfaction.
[Read the full listing:


The Family Caregiver's Experience - Examining the Positive and Negative Aspects of Compassion Satisfaction and Compassion Fatigue 

Are you a family caregiver of someone with a chronic illness? We are conducting a short, 15 minute survey and ask that you to reflect on your experience as a family caregiver and provide insight regarding both the positive and negative aspects of your experience. 



Seeking Family Caregivers for UC Berkeley Study

Are you a family member of an older adult living alone or in a community/assisted living environment? We are graduate students conducting research at UC Berkeley into the challenges faced by the family members of older adults. Our aim for this study is to develop a service offering that can help address some of these issues. Contact Rory at:


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