New Designs to Improve Independence

Screen Shot 2014-04-11 at 2.42.21 PM     aging20

by Kathy Kelly, Executive Director, Family Caregiver Alliance

There is a growing interest in designing new products and services to improve the independence of adults with cognitive and physical disabilities and to make life easier for family caregivers. A recent “MindDesign” Student Design Challenge sponsored by the Stanford Center on Longevity in collaboration with Aging 2.0, saw submissions from 52 student teams across 15 countries. The winner of the competition was just announced, Sha Yao, a student at the Academy of Art University in San Francisco for her project “EatWell”, a redesign of table settings modified to make eating easier for adults with cognitive impairments.

The seven finalist teams represented a wide range of ideas from a spoon that electronically stimulates the taste buds for those with diminished taste sensation, to a gaming experience that teaches touch-screen techniques through care coordination programs for caregivers. [Read about the winning projects.]

As new products and services come to market, Family Caregiver Alliance is busy creating a section of our website dedicated to bringing these types of product innovations directly to family caregivers. As always, consumer information and education will be part of this effort as product designers launch cutting-edge products that make life easier for adults with disabilities and the families that care for them. Look for our new online product section, on, in May 2014!

Are We At The Tipping Point on Policies for Family Caregivers?

by Kathy Kelly, FCA Executive Director

You may notice that there are many states now considering policy actions that effect family caregivers. This is a markedly different environment that reflects the increased desire for remaining in one’s community, coupled with changed incentives within the Affordable Care Act (ACA), that move towards outcomes that increasingly depend on supportive care at home and capped by the demographic changes that will create the demand for long-term services and supports (LTSS), for decades to come. Family Caregiver Alliance tracks legislation across the states for its Caregiving Policy Digest newsletter and we are here to report that the list is growing, covering topics like caregiver involvement in hospital discharge planning, tax credits for caregivers, paid sick leave and state planning efforts for family caregivers.

Media coverage is growing and we will share some of the stories that set the agenda, provide background and are especially compelling to view. One of the first notable pieces covering this is the PBS NewsHour segment aired April 8, 2014, highlighting the issue of hospital discharges, and the need to educate family caregivers about medication/prescription conflicts (carrying potentially serious side effects), administering medications at home, and training them on the increasingly technical and complicated care tasks they’re left to carry out at home for their loved ones.


This dovetails with efforts in numerous states to enact the Caregiver Advise, Record and Enable (CARE) Act that ensures that hospitals identify and involve family and informal caregivers in discharge planning and receive instructions for care during the hospital stay process.

In the weeks to come, we hope to cover efforts across the states that concern family caregivers to give the big picture view on advocacy trends across the United States. If you are working on legislation in your state or even your local community, let us know. We all need to see the bigger picture view on advocacy across the country!


The 2013 Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiver Legacy Awardees

From Left to Right: Anna Fitch and Banker White (WeOwnTV), Gary Glazner (New Mexico Literary Arts), Richard Ziman (Rosalinde and Arthur Gilbert Foundation), Kathleen Kelly (Family Caregiver Alliance), Mark Cornett and Kathleen Herd (Alzheimer’s Community Care), and Liz Schwarte (Ad Lucem Consulting)

With support from The Rosalinde and Arthur Gilbert Foundation, Family Caregiver Alliance (FCA) recognized the recipients of the 2013 Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards during the Aging in America Conference in San Diego, in March 2014.  A reception was held to honor the three programs that were selected in 2013 for awards of $20,000 each. Representatives from the three nonprofit organizations made presentations about their extraordinary programs that address the needs of Alzheimer’s disease caregivers and received their award certificates. The winning programs qualified in the following categories:  Creative Expression and Diverse/Multicultural Communities. (Note: There was no awardee in the Policy and Advocacy category for 2013.)

The program, organization and representative in each of the categories were as follows:

Creative Expression

Alzheimer’s Poetry Project
New Mexico
Literary Arts – Santa Fe, NM
Gary Glazner, Director

Gary Glazner, Director, New Mexico Literary Arts

The goal of the Alzheimer’s Poetry Project (APP) is to improve the quality of life of people living with Alzheimer’s disease and related dementias by facilitating creative expression through poetry. The rationale for using poetry with people living with dementia stems from research that shows aerobic benefits and increased synaptic activity when reciting poems and significant emotional and psychological benefit from being able to access the creative part of one’s identity. Since 2003, APP has provided professional arts programming in 24 states and internationally serving over 15,000 people with early to late-stage dementia and their caregivers. It also provides training for professional caregivers and teaching artists. The result has been an innovative, highly replicable arts intervention to improve the quality of life of people living with dementia and their families.

Diverse/Multicultural Communities

Community-based Alzheimer’s Specific Services for Everglades Agricultural Area
Alzheimer’s Community Care – West Palm Beach, FL
Mark Cornett, Chief Executive Officer

Kathleen Herd, Grants Administrator and Mark Cornett from Alzheimer’s Community Care

Alzheimer’s Community Care launched the Family Nurse Consultant (FNC) program in the Everglades agricultural region of Palm Beach County, reaching the underserved communities of Belle Glade, Pahokee and South Bay. The program provides Alzheimer’s caregivers with education, support and access to community-based services to continue home-based care and experience quality of life for themselves and their loved ones.  The minority population of predominantly farm workers faces many challenges including poverty, low education levels, and high unemployment. Because minority populations have been at greater risk for Alzheimer’s disease, the need for access to dementia-specific interventions is critical. The Family Nurse Consultant (FNC) program serves as a lifeline for families living with Alzheimer’s disease. The program’s goal is to provide caregivers with support, tools and resources needed to continue providing home-based care for their loved ones with Alzheimer’s disease. The FNC provides interventions, home visits, needs assessments, and care plans designed to meet the needs of the family caregiver and care recipient throughout all stages of the disease. These interventions have reduced caregiver stress and reduced or eliminated the need for nursing home placement. The results have been improved quality of life and safety for caregivers and their loved ones.

Creative Expression

The Genius of Marian
WeOwnTV – San Francisco
, CA
Banker White, Director

Anna Fitch, Banker White and daughter

WeOwnTV is a nonprofit organization that produces educational documentary films that explore critical issues of our time by creating robust social campaigns and educational outreach activities around its productions.  The organization produced The Genius of Marian, a visually rich and emotionally complex, feature-length, documentary film, that explores the heartbreak of Alzheimer’s disease, the power of art and the meaning of family. The documentary follows Pam White and her family for three years following her Alzheimer’s diagnosis as her son, the filmmaker, documents the changes that occur in all of their lives. The Genius of Marian has been particularly resonant for family caregivers, caregiving professionals and those directly affected by Alzheimer’s disease and age-related disabilities because it prominently features family caregiving in action.  The objective of the film is to inspire new thinking about how we define health and wellness and to change the way we cope, as individuals and as a society, with Alzheimer’s disease, aging and loss.

Congratulations to these three programs!  Family Caregiver Alliance would like to know about other innovative and effective programs that are addressing the needs of Alzheimer’s disease caregivers across the nation.

To Apply for an Award: Applications for the 2014 awards will be available in May 2014. To learn more about the Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards, visit FCA’s website: To learn more about The Rosalinde and Arthur Gilbert Foundation, visit their website:




Reading the Trends Plus Persistence Equals Expanded Family Leave Law in California

Family Caregiver Alliance

Recognizing the diversity of relatives providing care to family members, Governor Brown signed SB770 that expanded the current family leave law to include other members of a family needing care—grandparents, grandchildren, siblings and in-laws.  With enactment, the state of California has the most expansive family leave law in the country.

This legislation mirrors the demographical changes in the state— as California has the second largest number of multigenerational families in the country. The operation of the current family leave policies remain in place with collection of funds through the state unemployment insurance fund that provides workers 55% of their wages to care for family members for up to six weeks.

Kudos to the Legal Aid Society-Employment Law Center in San Francisco and others who worked to pass the legislation.

For the past several years, the Obama budget plan has called for a small amount of funding—usually around $10 million—to provide states with the funds to create collection and disbursement programs for administering paid family leave programs in each state. Unfortunately funding from the federal government has not been available due to budget reductions. At this time, California and New Jersey remain the only states in the country with operational paid family leave.

While paid family leave is a small cost to individual workers, it pays off in big benefits should a worker need to take paid time off to care for an ailing family member or a new or adopted child . . . and those are life situations that just about all of us will experience in our lives.

- Kathy Kelly, FCA Executive Director

Family Caregivers Feature Prominently in the Report from the Commission on Long-Term Care Released Today

Family Caregiver Alliance

Today the Commission on Long-Term Care released the full report on their activities over the past six months.  Created by Congress and signed into law January 2013, the 15-member Commission had a very short time frame for gathering information and issuing a report.

The Report has four main areas for review: Service Delivery; Workforce; Finance; and Advancing a National Advisory Committee on Long-Term Services and Supports (LTSS), with 28 Recommendations for specific policy changes.

Family caregivers figure prominently as key stakeholders as part of a “person and family centered care” system and are featured under the section on Workforce. Taken directly from the Report are the recommendations for family caregivers:

Vision: An LTSS system that is able to support family caregivers and attract and retain a competent, adequately-sized workforce capable of providing high quality, person-and family-centered services and support to individuals across all LTSS settings.

Family Caregiving
Recommendation 1: Maintain and strengthen a person- and family-centered LTSS system with both the person with cognitive or functional limitations and the family caregiver (spouse or partner, child or grandchild, parent, sibling or other unpaid assistant), as a focus for services and supports. Include family caregiver and their needs in assessment and care planning processes.

Recommendation 2: Include family caregivers in patients’ records and as a member of the care team.

Recommendation 3: Ensure family caregivers have access to relevant information through technology.

Recommendation 4: Encourage caregiver interventions, including respite options, and integration with volunteer efforts.

We applaud the efforts and report from the Commission on Long-Term Care, especially given the short time frame for completion.  We hope that this report and the specific policy action related to family caregivers—and the other important topics covered—will result in policy actions that address the needs of families across the country.

For more information, to get a copy of the report, or watch the hearing held today to announce the report, go to:


- Kathy Kelly, FCA Executive Director

Drumming Up Local Dollars for Senior Services

Family Caregiver Alliance

In spite of budget cuts and gridlock in Washington, many states, counties and local communities are finding ways to raise revenue to support services for older and disabled adults. One example: In California’s Santa Clara County (the home of Silicon Valley), Measure A passed in November of last year, which raised the local sales tax by 1/8 of a cent over a 10-year period to provide revenues designated for the county hospital, public health and welfare programs.

In Family Caregiver Alliance’s August 20th issue of Caregiving Policy Digest (free to subscribe to), our lead article focuses on local government efforts to lower the percentage approval required for passage of local special taxes in California from 66% to 55%. Currently there are six bills moving through the California Legislature that, if successful, will amend the California Constitution allowing for the return to enactment by simple majority required before Proposition 13 (property tax limitation) passed in 1978.

In addition, you will find a report from Miami University on national survey findings detailing special funding measures passed across the states, and highlighting Ohio for raising more money annually for senior services than any other state. In addition we have included a report from Miami University on national survey findings on special funding measures passed across the states. It is worth noting this trend in funding services and for those advocates for family caregivers to be at the table when these efforts take shape in local communities and priorities are set for use of additional revenues.


Rhode Island Rocks!

Rhode Island image montage

Kathy Kelly, Executive DirectorFamily Caregiver Alliance

There were three exciting developments for family caregivers in Rhode Island this month:

First, Rhode Island became the third state in the country (joining California and New Jersey), to pass legislation on paid family leave.  The bill, now law, entitled Temporary Caregiver Insurance, ensures that workers can take up to four weeks of leave at two-thirds of their regular wages to care for a sick family member or bond with a new child.  It also sets a new standard of job protections by guaranteeing all workers job security if the need arises to take leave in order to care for family members. Funding is self-funded through employee contributions.

Next, The Family Caregiver Support Act of 2013 was signed into law and requires a caregiver assessment if the plan of care for a Medicaid recipient involves a family caregiver.  A plan of care is to be developed which takes into account the needs of the caregiver and the recipient.

And the third bill, the Parent Deinstitutionalization Subsidy Aid Program, expands who is eligible to provide care to include siblings and other appropriate relatives―a relief to aging parents who may have health or financial difficulties and are unable to continue as primary caregivers.

As noted in a blog recap of the Rhode Island legislation, also signed into law were measures promoting “aging in place,” and the Palliative Care and Quality of Life Act. Beginning in 2015, every health care facility must establish a system for identifying patients or residents who would benefit from palliative care and provide information and assistance to access such care.

Family Caregiver Alliance applauds the efforts of the Rhode Island senators and representatives who sponsored these bills, as well as Governor Lincoln Chafee, the Rhode Island General Assembly and all the organizations and advocates who so elegantly represented the needs of family caregivers. Congratulations Rhode Island! – KK

FCA Applauds the SCOTUS Ruling Regarding DOMA

Here the State’s decision to give this class of persons the right to marry conferred upon them a dignity and status of immense import.

Justice Kennedy, on the granting of rights to married couples.

Family Caregiver Alliance  - Kathleen Kelly, Executive Director

Family Caregiver Alliance applauds the U.S. Supreme Court decision that ruled a key provision of the DOMA unconstitutional.  FCA has always supported families of choice and celebrates today both the recognition of same-sex marriages and the extension of federal benefits to those families.

Now same-sex couples have equal access to social security, Medicare and other federal benefits that can provide a base of security for family caregivers. Recognized, legal marriages clarify particular challenges faced by same-sex couples around hospital visitation rights, estate planning and other health treatment and end-of-life issues.

In the end, it is about equality of relationships, of families, of all people.  And that is something that improves the life of all caregiving—and care exchanging—families.

The Rosalinde and Arthur Gilbert Foundation Awards Ceremony and 5th Year Celebration

By Edrena Harrison, ACSW, Information Programs Specialist at Family Caregiver Alliance

From Left to Right: Kathleen Sullivan (Seniors Services, L.A. Gay & Lesbian Center), Martin H. Blank, Jr. (The Rosalinde and Arthur Gilbert Foundation), Kirsten Johnson, (“What is A Caregiver?” campaign, Amherst H. Wilder Foundation) and Anne Basting (TimeSlips, University of Wisconsin-Milwaukee)

In June 2007, The Rosalinde and Arthur Gilbert Foundation published an expert panel discussion report, Strengthening Caregiving for Alzheimer’s Disease, which outlined promising practices, research recommendations and key principles for caregiver support. As a result, The Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiver Legacy Awards Program was initiated. The program promotes those principles and stimulates innovation in the field of Alzheimer’s disease caregiving by recognizing and rewarding those efforts, which lead the way in addressing the needs of Alzheimer’s caregivers.

With support from The Foundation, Family Caregiver Alliance (FCA) recognized the recipients of the 2012 Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards during the Aging in America Conference in Chicago, IL on March 14, 2013. A 5th year celebration reception was held to honor the three selected programs for awards of $20,000 each and to acknowledge past awardees. The current awardees received their award certificates and made presentations about their programs.

Near the end of the program, a Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards digital scrapbook, highlighting all 17 awarded programs from 2008 to 2012 was presented. In addition to staff from The Rosalinde and Arthur Gilbert Foundation, Family Caregiver Alliance, Ad Lucem Consulting and current and past representatives’ organizations, attendees included local government administrators, university educators, community program directors and staff, other helping professionals, researchers, graduate and undergraduate students, family caregivers, and others.

The program and representative in each of the categories were as follows:

2012 Winner, Creative Expression
Program:  TimeSlips, University of Wisconsin-Milwaukee, Center on Age & Community (Milwaukee, WI).

Left: Anne Basting, Director of Center on Age & Community. Right: TimeSlips website

TimeSlips opens creative storytelling to people with dementia by replacing the pressure to remember with the freedom to imagine.  It inspires others to see beyond loss to recognize their strengths; and improves the quality of life of people with dementia and their caregivers. The program offers training, certification, and consulting for individuals and organizations, and acts as a resource for those dedicated to transforming dementia care through creative engagement. Gathered stories can be celebrated and shared with other family members and friends. The project also includes a free interactive website where caregivers can facilitate storytelling wherever they are—at home or in congregate settings.  Program staff estimated training over 3,000 caregivers in in-person and online workshops over the past 14 years.  Website:


2012 Winner, Diverse/Multicultural Communities 
Program:  Seniors Services, L.A. Gay & Lesbian Center (Los Angeles, CA)


Right: Kathleen Sullivan, Director of Senior Services

The Los Angeles Gay & Lesbian Center operates the only fully integrated Seniors Services program for lesbian, gay, bisexual or transsexual (LGBT) seniors in the Greater Los Angeles area. Alzheimer’s disease impacts LGBT seniors at the same rate as their heterosexual peers. As a result, the Center’s Seniors Services program developed monthly Alzheimer’s (Disease) Caregiver and Bereavement support groups. These support groups are specifically for LGBT caregivers and partners living with Alzheimer’s disease. Those who participate in the Caregiver support groups also have access to a system of comprehensive wrap-around care with legal, medical, and mental health services. Website:


2012 Winner, Policy and Advocacy
Program: “What Is a Caregiver?” Public Awareness Campaign, Amherst H. Wilder Foundation (St. Paul, MN)


Left: Kirsten M. Johnson, Community Initiatives Manager. Right: Ad Web Page (

About 19% of caregivers self-identify as a “caregiver.” Most caregivers do not know they are playing this new role, and as a result do not access supports that could help them. This creates a domino effect of negative health and economic consequences. Wilder’s response to this problem was to develop and launch an innovative approach to identifying and engaging caregivers before the crisis. This public awareness campaign was the first of its kind – and had tremendous impact on creating community awareness of caregivers. The year-long campaign had a total of 160,755,000 media impressions. Approximately 45,000 caregivers of those with dementia were impacted by the campaign. Website:

Staff and Award Program Representatives (2008, 2010, 2011 and 2012)

Left to Right:  Bobbi Cordano (Amherst H. Wilder Foundation), Martin H. Blank, Jr. (The Rosalinde and Arthur Gilbert Foundation), Alejandra Ceja-Aguilar (Southern Caregiver Resource Center-2011 Awardee), Kathleen Sullivan (L.A. Gay & Lesbian Center), Maureen Kenney (Amherst H. Wilder Foundation), Maria Genne (Kairos Alive! – 2011 Awardee), Liz Schwarte (Ad Lucem Consulting), Judith-Kate Friedman (Songwriting Works- 2010 Awardee), Kirsten Johnson (Amherst H. Wilder Foundation), Kathleen Kelly (Family Caregiver Alliance), Laura Prohov (CJE Senior Life-2008 Awardee), Anne Basting (University of Wisconsin-Milwaukee), Edrena Harrison (Family Caregiver Alliance) and Roberto Velasquez (Southern Caregiver Resource Center-2011 Awardee)

A recent government-funded report confirms what advocacy groups have been warning for years: The number of people in the U.S.A. with Alzheimer’s disease will almost triple by 2050, straining the health care system and taxing the health of caregivers. (See the USA Today article.)   Family Caregiver Alliance would like to know about more innovative and effective programs that are addressing the needs of Alzheimer’s disease caregivers across the nation.

To Apply for an Award:

Applications for the 2013 awards will be available in May 2013. To learn more about the Rosalinde Gilbert Innovations in Alzheimer’s Disease Caregiving Legacy Awards, visit the FCA website: To learn more about The Rosalinde and Arthur Gilbert Foundation, visit their website.