Vol. 8, No. 4
April 18, 2017
Dear Friends:

As the new administration approaches its 100 day milestone,  there has been much talk in the news of the different experiences, hopes, and perceptions held among Americans. While the United States may or may not be more divided than in past, one thing that unites all Americans is the universal experience of caregiving. Dementia and other serious health conditions cross party lines, zip codes, and generations, and so do the caregivers who do their best to look after their loved ones, while also trying to live their own lives.

Whether you pulled the lever for candidate A or candidate B, went to college or are working on earning your GED, live near the ocean or are hundreds of miles from it, FCA is here for you, the caregiver. We are here to advocate for you, and to provide the information, resources, and support you need. You can access FCA’s services, at no charge, via our online tool, FCA CareJourney, 24/7. 


Calvin Hu
Education Coordinator
We could never learn to be brave and patient if there were only joy in the world.” 

—  Helen Keller
Call it TrumpCare Now: Regulatory Changes Diminish the Affordable Care Act to the Detriment of Family Caregivers

By  Kathleen Kelly , Executive Director, Family Caregiver Alliance

While wholesale repeal of the Affordable Care Act (ACA) failed to get the required votes for passage out of the U.S. House of Representatives, the Trump Administration has issued new regulations that will increase the cost of insurance premiums and make it harder to enroll in coverage in 2018.

Why is this important for family caregivers? Caregiving families, like a fair percentage of Americans, rely on the private insurance market for coverage because they do not receive coverage at their jobs, or work several part-time jobs that lack coverage, or have stepped out of the employment market to provide care. Or, their relative who needs assistance is not eligible for Medicaid and needs health care coverage.

National Healthcare Decisions Day

National Healthcare Decision Day is this week, and aims to educate the public about the value of advance healthcare planning.  This simply means thinking ahead about the care you, and the person for whom you are caring, may receive in the future. Advance healthcare planning includes deciding what your preferences are, and taking the steps needed to assure these wishes are respected. 

An  advance health care directive  (AHCD) is the primary legally binding tool to communicate your health preferences. A completed AHCD also includes appointing a healthcare proxy, who will speak for you, should you be incapacitated.  All adults over the age of 18 should have a completed AHCD.

In addition to deciding about future care wishes, and completing an AHCD, advanced healthcare planning also means talking to family and close friends, to clearly explain the choices you’ve made and the values you hold. 

FCA has a number of fact sheets on advanced planning. These include Legal Planning for Incapacity (also in Spanish, Korean, and Chinese),  AHCD and POLST  (also in Spanish ). A  downloadable fillable form that lists the location of all your important papers, is also available and is useful to keep yourself organized and prepared.
Know Your Rights — Hospitals, Medicare, and Patient Status

Under a new Federal law, all hospitals are now required to clearly inform patients who stay overnight if they have been formally “admitted,” or if they are considered under “observation” only. While the treatment under both may appear identical, the difference is very important financially. Patients treated in hospitals, but who are never admitted, commonly face  higher costs and less coverage. And for Americans on Traditional Medicare, if they were never admitted during their hospital stay, Medicare will not reimburse any additional post-hospitalization rehabilitation costs at a skilled nursing facility.
Action Alert: California SB 177 — Family Caregiver Respite Support Moves to  Appropriations

Thank you for advocating for caregivers! Last month FCA and fellow California Caregiver Resource Centers asked for letters in support of SB 177. This month, we are excited to announce that California legislators have heard your voice and SB 117 has moved one small step closer to being signed into law. Faced with many difficult  hurdles, the bill will now be presented before Senate Appropriations.

SB 177  was introduced by California State  Senator Janet Nguyen. I f signed into law, the bill would a ppropriate $3.3 million to provide desperately needed respite care services for over 4.5 million California caregivers. 

FCA is collecting letters of support for this next stage. The letters will be hand delivered  to the Senate Appropriations Committee m embers  in Sacramento . Please email, fax, or mail your letters to me by Friday, April 28. My contact information is below.     

An updated sample letter can be viewed   here

Fax:  ( 415) 434-3508

Mail:  Family Caregiver Alliance
Attn: SB 177
235 Montgomery Street, Suite 950
San Francisco, CA 94104
FCA CareJourney, Online Service for Family Caregivers

For the first time, caregivers like you—who are caring for adult loved ones with  chronic, disabling health conditions—can get valuable information, resources,  and support tailored specifically to your unique caregiving situation. And it’s free,  completely private, and accessible by computer or mobile device 24/7.

Join FCA CareJourney today and get a jump start  on your caregiving journey. 
Home Alone Alliance Releases Training Video Series

The Home Alone Alliance, a partnership between AARP, the VA, and founding partners like FCA, has just released the first in a series of instructional videos for family caregivers. This series focuses on mobility concerns, and includes:  Getting from a Car to a Wheelchair What to Do When Someone Falls , and  Moving from a Walker to Shower or Bed Videos are available in English and Spanish. 

A future summer video release will focus on wound care, with continuing releases following later in the year.  For additional information about this new Home Alone Alliance series, please click here
SHARE — Chronic Conditions

FCA is seeking family caregivers to enroll in the SHARE program. Over the course of five face-to-face sessions, SHARE will help you get the most out of today while planning for tomorrow.  The goals of SHARE include learning effective communication skills, reducing stress, promoting health, and receiving education on long term care  management. The SHARE program is offered at no charge.

SHARE is specifically for caregivers of adults (close family or partner/spouse), with a confirmed diagnosis of a chronic health condition, 60 or older, living at home, and with intact cognitive abilities.  Eligible conditions for SHARE include but are not limited to: heart disease, diabetes, COPD, arthritis, kidney disease, stroke, or HIV-AIDS. Care receivers with a neurocognitive disorder, a mental health condition, traumatic brain injury, or are in the terminal phrase of their condition are unfortunately not eligible.

Please contact Michelle Venegas at (415) 434-3388, for more information.
FCA Collaborates on Pilot Website for Professionals Working With Dementia Caregivers 

FCA has partnered with the Benjamin Rose Institute on Aging to create a new online website for medical professionals and social workers to better serve the needs of family caregivers. The website will compare different programs to help medical care and social service organizations choose the most appropriate plan for the caregivers they serve.  Funding was provided by the The John A. Hartford Foundation .  To learn more, Terry Fulmer, president of Hartford Foundation has written an explanatory article in the Huntington post.
FCA’s Policy Digest Focuses on ACA Repeal

Policy Digest is for professionals or caregivers interested in the ever changing local, national, and international policy around caregiving. The April issue focuses in depth on the ongoing efforts to repeal the Affordable Care Act. Each issue of Policy Digest also includes a summary of all state level legislation relating to caregiving.

To subscribe to Policy Digest, please click here
Hospital Discharge Planning: A Guide for Families and Caregivers

Hospital visits are commonly very stressful for caregivers. While many caregivers focus exclusively on the treatment administered, deliberate planning, thought, and advocacy must also happen when someone i s about to be discharged from the hospital,  to ensure a successful transition.  

This FCA Fact Sheet will explain some of the important steps and provide a checklist in planning and advocating for a successful transition from hospital to home, rehab facility, or nursing home. Successful discharge planning means being an advocate for the person you are caring for, and being an advocate for yourself.
FCA Webinar Archive: How to Prevent Falls in Aging Adults
Falls are the number one cause of both injury and death among older adults according to the CDC . This FCA webinar, presented by  Dr. Leslie Kernisan, will explain everyday steps and approaches that caregivers can take to help reduce the likelihood of a serious fall of the older adult to whom they are providing care.  Viewers will learn about the three main factors, common medical conditions, and everyday medications that can increase the risk of falling.

Additional FCA caregiving and professional webinars can be viewed at the FCA webinar page .
To Help Ward Off Alzheimer’s, Think Before You Eat

Scientists have long been studying the effects of food choices on health, leading to both dietary guidelines, and the creation of specialized diets. Judith Graham, writing in Kaiser Health News, shares the recent findings of two preliminary studies that link d iets rich in vegetables, whole grains, legumes, nuts, fish, and vegetable oils to a decrease in the risk of developing Alzheimer’s disease by between 36 and 53 percent. These diets work by reducing inflammation and oxidation in brain cells. 
Informed Patient? Don’t Bet On It

Cleveland Clinic doctors Mikkael Sekeres and Timothy Gilligan argue  in the New York Times that patients lacking in medical training and expertise cannot give consent that is truly “informed.” The doctors offer a number of suggestions to help patients and caregivers better understand the procedures and treatments for which they are being asked to give their consent. These suggestions include: summarizing back to the doctor what they have shared; getting a best, worst and most probable outcome; and having the doctor use only common, everyday terms.
Difficult Conversations About Difficult Decisions
A workshop on t alking with a loved one about end-of-life care

When you’re caring for a loved one with a chronic illness, you and your family will eventually face some difficult decisions. Anticipating the situations that may arise can help you honor your loved one’s healthcare wishes and avoid having to make tough decisions during a crisis. 

At this one day workshop, you will l earn  h ow to start a conversation with family members.  You’ll also learn about end-of-life care options and about holding on and letting go of a loved one. 

Pre-registration is required. Unfortunately we are unable to accommodate professionals caregivers at this event.

When: Wednesday, April 19, 10:30 a.m. to 12:30 p.m.
Where: Little House
800 Middle Avenue, Menlo Park 94025
Cost: No Charge
Registration: Call Little House: (650) 326-2025
There Must be a Better Way Than This!
A Special One Day Class for Dementia Caregivers

At this FCA class, you’ll learn tips and strategies for understanding and communicating with someone affected by dementia. You’ll also learn how to handle difficult behaviors, how dementia affects a person’s ability to understand and communicate, and how to feel more confident in your caregiving role.

Pre-registration is required. Group size is limited. Please let us know if you have a disability and require specific accommodations. Unfortunately we are unable to accommodate professional caregivers at this event.   

Marin County

When:  Friday, April 28, 10 a.m. to 1 p.m.
4340 Redwood Highway, Suite F-138, San Rafael 94903
Cost: No Charge
Registration: Amanda Hartrey, (415) 434-3388 ext. 334

Contra Costa County

When:  Tuesday, May 23, 10 a.m. to 1 p.m.
2450 Road 20, San Pablo 94806   
Cost:  No Charge
Registration:  Amanda Hartrey, (415) 434-3388 ext. 334
Caregiver Educational and Respite Retreat in Richmond

You are invited to join FCA for a free, one-day retreat designed especially for you, the family caregiver. Learn about caregiver self-care and stress management, and participate in therapeutic group activities like arts and crafts, yoga, dance, and tai chi. Network and share your experiences with fellow caregivers, and enjoy a catered brunch.

Pre-registration is required. Please let us know if you have a disability and require specific accommodations. Unfortunately we are unable to accommodate professional caregivers at this event.  

Respite scholarships are available. For more information, please  contact:  Calvin Hu, (415) 434-3388 ext. 313, or  chu@caregiver.org

When: Saturday, May 13, 10 a.m. to 4 p.m.
Where:  Richmond Country Club
1 Markovich Lane, Richmond, CA 94806
Cost: No Charge
Registration: Click here
9th Annual African American Caregiving and Wellness Forum

The African American Caregiving and Wellness Forum is an annual Alzheimer’s Association event that provides caregivers the chance to learn more about how Alzheimer’s disease impacts the African African community, and how to care for someone with the disease.The forum links caregivers to  information, organizations, and support that will help manage the challenges of caregiving.

When: Saturday, April 29, 8:30 a.m. to 3 p.m.
Where:  Ed Roberts Campus
3075 Adeline Street, Berkeley 94703

Cost: No charge
Registration:  Click here
 7 th Annual Caregivers Count Conference

The Aging Services Collaborative of Santa Clara County invites family caregivers to the 7th Annual Caregivers Count Conference. Attendees will have the opportunity to hear from expert speakers as well as visit resource tables to learn about supportive services available in Santa Clara County.  Topics covered will include: s elf care, communication, m edication, and l egal needs. 

Limited on-site care will be provided by the Alzheimer’s Activity Center.

When: Saturday, May 6, 8:30 a.m. to 2:30 p.m.
Orchard City Banquet Hall
1 West Campbell Avenue, Campbell 95008
Cost: $15
Registration:  Click here
19th Annual Updates on Dementia Conference

Join the Alzheimer’s Association, and partners including FCA, for the largest dementia specific ​educational conference  on the West Coast. R esearchers and clinicians will present the latest research on the biological, social, psychological, and cultural aspects of aging and dementia, with emphasis on practical applications. 

When: Thursday, May 11, 8 a.m. to 4:15 p.m.
255 South Airport Boulevard, South San Francisco 94080
Cost: $95 general admission, $50 seniors (age 65+) and students (with ID)
Registration:  Click here
We would like to extend a warm thank you to the many generous supporters who make the work we do possible through thoughtful donations to Family Caregiver Alliance.

FCA has led the way in supporting family caregivers for over 35 years.
Your donation makes all the difference!
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235 Montgomery Street | Suite 950 | San Francisco, CA 94104
Phone: (800) 445-8106 | Email: info@caregiver.org
Visit Family Caregiver Alliance’s NEW online solution for secure information, support, and resources for family caregivers of adults with chronic physical or cognitive conditions.  FCA CareJourney provides a personalized dashboard loaded with information that matches your unique caregiving needs.
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Connections Credits
Calvin Hu
Michelle Venegas  

Kathleen Kelly
Calvin Hu
Lana Sheridan
Michelle Venegas
Leah Eskenazi

Communications and Layout
Francesca Pera

Executive Director
Kathleen Kelly
FCA Board of Directors

Jacquelyn Kung

Dan Lieberman

Jeff Kumataka

Athan Bezaitis
Tricia Dell
Catherine Lelong
Rajiv Mehta
Chris Park
Scott Peifer
Kathleen Raffel
Wyatt Ritchie
Celine Takatsuno
F. Burns Vick