August 2015

Vol. 6, No. 8


(800) 445-8106

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Calvin Hu

Michelle Venegas 


Kathleen Kelly
Calvin Hu
Lana Sheridan
Michelle Venegas
Leah Eskenazi

Executive Director
Kathleen Kelly

Board of Directors 


Jacquelyn Kung, President
Dan Lieberman, Vice-President
Jeff Kumataka, Treasurer
Athan Bezaitis
Wanda Borges
Herman S. Brown
Ping Hao
Catherine Lelong
Michael Malewicz
Rajiv Mehta
Chris Park
Kathleen Raffel
F. Burns Vick


New Donate Now Btn 2011
"My Fellow Americans, I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer's disease ... I will continue to share life's journey with my beloved Nancy and my family ... Unfortunately, as Alzheimer's disease progresses, the family often bears a heavy burden ... I now begin the journey that will lead me into the sunset of my life."

Twenty-one years ago to the month, the late President Reagan was diagnosed with Alzheimer's disease, and a former first lady of the United States took on a new role as a caregiver.

If Mrs. Reagan were still a caregiver today, we'd tell her the same thing we've been telling all of you. Spend a moment sitting outside to enjoy the August sun and the waining days of summer. Take care of your loved one, and take care of yourself. 

We appreciate your feedback. Please email your comments.


Calvin Hu
Education Coordinator, Family Caregiver Alliance


Building an Atlas of Caregiving Together: a New Research Project at Family Caregiver Alliance 

Thanks to all the family caregivers who are participating in the Atlas of Caregiving Pilot. We still have room for interested caregivers looking to participate.

Share your experience of day-to-day caregiving to help Family Caregiver Alliance advocate for new technologies, improved services, and better policies to make caregiving both easier and more effective. The goal of the Atlas of Caregiving is to understand, at a deeper level, the physical and emotional impact of providing care, in the hopes that we can use the data collected to impact change.

We are seeking family caregivers who actively provide day-to-day care (chores, companionship, medical activities, etc.) to a family member or friend with a chronic disabling, adult on-set health condition like MS, ALS, TBI, or various types of dementia. Participating caregivers will be compensated $200 for their participation.

To learn more and to find out how to participate, please visit our Research Studies section.

2015 Ardenwood Caregiver Respite Retreat

San Francisco Bay Area residents: you are invited to join us on a free one-day retreat designed especially for you, the family caregiver on August 31, 2015. Enjoy a visit to Ardenwood Historic Farm, a 19th century country estate, including a beautiful mansion and elaborate Victorian gardens, catered lunch, tips for preventing caregiver burnout, and a chance to build connections with other caregivers.

To register, please click here.

*Group size is limited and pre-registration is required for this retreat. We regret that we are unable to accommodate professional and/or paid caregivers at this event.  


New General Caregiver Support Group in Alameda County!

Join FCA for an ongoing monthly support group for family caregivers on the third Wednesday of each month in Emeryville.

Next Session: Wednesday, September 16, 6 to 7:30 p.m.

For more information: Please contact Amanda Hartrey, MA, LMFT, Family Caregiver Alliance at (415) 434-3388 ext. 334 or via email.

*If you are not a client of FCA, please call to register before attending this support group. 


Caring from Afar - Featuring Dr. Richard Caro

The FCA interactive tech workshop on home sensor systems will be held at the University of San Francisco campus on Saturday, September 12, from 10 a.m. to 12 noon.  
Get expert advice and concrete answers to your questions:
-What do these products and their monitoring services cost?
-Will they save me money?
-Are they easy to install?
-Are they right for me?
The workshop costs $25. For more information, please visit the FCA Presentations and Workshops section.

Support Family Caregiver Alliance at This Year's Walk to End Alzheimer's

The Alzheimer's Association Walk to End Alzheimer's is the world's largest event to raise awareness and funds for Alzheimer's care. Please support FCA and donate to our team, as we walk this year in San Francisco. Visit our team page and donate here.   

Latino Forum Update: New location

Please join us on Saturday, October 3 at the 30th Street Senior Center in San Francisco for the 4th Annual Latino Forum. The forum will be from 8:30 a.m. to 12:30 p.m.

Topics include:
-A Healthy Body for a Healthy Brain
-Long Term Care: What is it and Who Pays for it
-Therapeutic Dance

The event is free and held entirely in Spanish. For more information and to register, please click here.   


Exercise good for brain, even for those with Alzheimer's

New Studies show that regular exercise can not only help with memory, but can also raise the quality of life for people already diagnosed with Alzheimer's. The benefits are described as "modest," but real.

HIPAA's use as code of Silence Often Misinterprets the Law

HIPAA, or the Health Insurance Portability and Accountability Act is a privacy law designed to protect personal health information. Unfortunately, the law is being misused as "an all-purpose excuse for things people don't want to talk about." Read the NY Times article to learn more about what HIPAA does and does not allow.

Medicare Says Doctors Should Get Paid to Discuss End-Of-Life Issues      
Medicare will only pay for end of life discussions with a doctor for new enrollees, and only if these take place in the first couple of appointments. New proposals put forth by the government, if enacted, will allow for funding of these discussions at any time.

Quote of the Month.
"To age is to live. To care is to be human." 

-David Hyde Pierce



Caregiving With Your Siblings Fact Sheet

Are you a caregiver with siblings? Read our Fact Sheet to learn about strategies on how to overcome caregiving stress related to siblings.  

Where to Find My Important Papers

As a caregiver, do you know where to find your care receiver's critical documents (power of attorney, advance health directive, birth certificate, etc.)? FCA has created a handy sheet for download so you can be sure to know where all their important papers are.

How to Challenge Hospital Discharge Decisions

When a hospital has decided to discharge a patient, that patient has certain rights and the hospital has certain responsibilities. California Advocates for Nursing Home Reform has provided an informative and easy to understand fact sheet on the subject.  

Fake checks: The Nanny or Caregiver Scam

"Federal Trade Commission staff has seen complaints about con artists cheating caregivers with a counterfeit check scheme that asks you to send payment to a third party." To learn more about this scam and how to protect yourself, please visit the FTC website.  

This Wednesday: The Importance of Writing Proper Nursing Notes for Caregivers (Webinar)
As a caregiver, accurate documentation is critical to ensuring the welfare of the client, and that care is being properly managed and optimized. The nursing documentation log (and associated reports) represent the eyes and ears of the caregiver - caregivers are legally-bound to present accurate and truthful accounts of client health status and key events. This webinar will cover the do's and don'ts of proper nursing documentation, and how you can improve your communication as a nursing professional.
*This webinar costs $15 (please purchase ticket at least 24 hours before this webinar). You have the option to register to view it live OR as a recording. CEU's are available through the Board of Behavioral Sciences (MFTs, LCSWs, Ed. Psychologists, and Licensed Professional Clinical Counselors). REGISTER ONLINE    
Caring From Afar 
Do in-home sensor systems really offer peace of mind? Can they alert the family caregiver to activities or situations of a care receiver that are potentially dangerous?

In this special new workshop, you will go beyond the marketing materials and explore real benefits of these products and services. You'll get unbiased, expert advice to help you:

-Sort through the confusion and choose a product that works best for YOUR situation
-Determine the real cost of products and monitoring services
-Learn how these tools might actually save you money
-Find out if they're easy to install - or if you have to be a tech genius to use them
-Create a framework for making decisions about these and other new safety products

When: Saturday; September 12, 10 a.m. to 12 noon

Where: Xavier Auditorium (Fromm Hall), University of San Francisco, 2497 Golden Gate Avenue, San Francisco, 94118

Speaker: Dr. Richard G. Caro, CEO of TangibleFuture, Inc.

To register: Visit our registration page here

This program is co-sponsored by MS in Behavioral Health- University of San Francisco, and Tech-enhanced Life.

It Takes Two! A Refreshing Approach to Understanding and Coping with Dementia Behavior
This four week class offers new skills and tools for family caregivers who care for a loved one with Alzheimer's disease, or related dementias. In It Takes Two, you will: learn more about your relative's ability to understand and communicate, learn new skills to handle troubling behavior, and feel more confident and positive about your caregiving role.

This four part class meets on four consecutive Thursdays starting October 29. You will need to be able to attend all four sessions. 

When: Four Thursdays starting October 29, 1 to 3 p.m.

Where: San Leandro Senior Community Center, 13909 East 14th Street, San Leandro, 94578

Speaker: Jo McCord, MA, Family Consultant, Family Caregiver Alliance

To Register: Call (415) 434-3388 ext. 313 to speak with Calvin Hu; Feel free to leave a message with your name, number and the name of this workshop.

Group size is limited and please let us know if you have a disability and require assistance. We regret to inform you that we are unable to accommodate professional and/or paid caregivers at this event.

Respite scholarships may be available.


Lesbian, Gay, Bisexual, Transgender Support Group: For Those Who Care for Someone with Dementia
We welcome diverse caregivers. You may care for your friend, family, partner or neighbor. Our resilience and need for support for ourselves tie us together. We invite you to join us.  

When: Monthly - Fourth Wednesday: August 26, 6 to 7:30 p.m.

Where: Openhouse, The SF LGBT Center, 1800 Market St. San Francisco, CA, Room 306

To Register: Call (415) 728-0193 or email Fairley Parson

Living with Alzheimer's: for Early Stage Care Partners
When someone is diagnosed with Alzheimer's, friends and family have many questions. What does the diagnosis mean? What kinds of plans need to be made? What resources are available to help? Learn what you need to know, what you need to plan, and what you can do at each point along the way.  

When: Mondays: September 14 to 28, 1:30 to 3:30 p.m. 

Where: San Jose (location provided upon registration)

To Register: Call (800) 272-3900 or email Lan Trinh

Domestic employer workshop for seniors and people with disabilities
This is a workshop for those who have or would like to have a home care provider. You will learn how to create a positive working relationship, and about your rights and responsibilities as an employer.

Si usted ha contratado (o quiere contratar) a alguien que le da cuidado en su casa, este taller es para usted! Vamos a hablar de como crear una relación de trabajo positiva, de manera que usted y su proveedor tengan lo que necesitan. Vamos a enseñar acerca de los derechos y responsabilidades como empleadores, incluyendo com ousted puede ser afectado con el acta de derechos de los trabajadores domésticos y otras leyes. Todos están invitados a compartir sus experiencias!

When: Wednesday: August 26, 2 to 4 p.m.

Where: Todco, 1008 Mission Street (at 6th Street), San Francisco, 94103

To Register: Call (415) 546-1333 and ask for Jessica Lehman or Ligia Montano

This workshop is being presented by Senior and Disability Action in partnership with Family Caregiver Alliance.



Building an Atlas of Caregiving Together: A New Research Project At Family Caregiver Alliance

We know that family caregiving can be rewarding. But we also know that it is hard work. It can be physically and emotionally exhausting. It can have financial, social and health consequences for people who do it. It can be 24/7. Now caregivers can contribute to building a rich experience database by participating in this new research project here in the San Francisco Bay Area.

We're building an Atlas of Caregiving to understand the actual, lived experience of daily caregiving. Family Caregiver Alliance is undertaking this novel research project, led by Rajiv Mehta of Bhageera, Inc. and Hugh Dubberly of Dubberly Design Office, to look deeply into a family's day and map the life of a caregiver. Using both traditional caregiver interviews alongside new wearable technologies that can track activities and physiological signals such as heart rate and movement in real time, we will collect data from a diverse group of families in the San Francisco Bay Area.

We will analyze that data and seek to answer: Who is involved in family caregiving? What do they do? What are the impacts of these activities? This information will be gathered into an Atlas of Caregiving: a collection of stories, diagrams, data and models that exposes the day-to-day realities of caregiving and provides rich insights into the challenges caregivers face.

We are seeking people actively involved (more than 2 hours per day) in the day-to-day care of a family member or friend. Participants may also be taking care of their own health needs. By "care" we mean anything you do to help the other person due to their illness, disability or aging - medical activities, household chores, keeping company, etc.

We are seeking a diverse group of families, with a variety of health conditions, social backgrounds, and family situations. Families should be in the San Francisco/ Silicon Valley area (generally the counties of Alameda, Contra Costa, San Francisco, San Mateo, and Santa Clara). People do not need to be "tech-savvy" to participate. However, they need to be able to communicate clearly, in-person and via email. And, they need to be able to wear and take on/off a watch-like device.

What will I be asked to do? Your participation will include a survey, two interviews (at your home), and tracking your care activities for a day using a log and wearable technologies. Each caregiver participating in the study will receive $200. For more information visit the project website And for more information and to be a part of this project please contact Rajiv Mehta, the Project Director for the Atlas of Caregiving Pilot at (650) 823-3274.
EPOCH study: mild to moderate Alzheimer's disease

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 (844) 675-7575 or visit our Epoch Memory Study website.

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 or call (415) 514-2935.


Cognitive Adaptation and Posttraumatic Growth among HIV Caregivers

Are you a caregiver? My name is Erin Norton, I am a Clinical-Psychology doctoral student at The Chicago School of Professional Psychology, LA campus. I am investigating cognitive processes and growth among caregivers.

To participate you must be 18-years or older, a current caregiver of an individual with HIV or AIDS, able to read and understand English, provide ongoing activities of daily living or instrumental activities of daily living, do not care for more than one recipient, and not solely a nurse, social worker, case manager, etc.

Please access the following link or e-mail Erin Norton.
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!

Please click here for survey link.

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 and emotions as a caregiver.

Participation is voluntary and you can stop at any time.

If you are interested go to our survey link.

This research is being conducted by Ashley Mezzasalma, through the Emotion, Personality and Altruism Research Group (EPARG), Wright Institute, Berkeley, and is supervised by Lynn O'Connor, PhD. The study meets the requirements for the doctoral dissertation.
donorsOUR DONORS . . .
heart-shaped money-box with ribbon

A quarterly thank you to our donors and supporters . . .

We would like to take a moment 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.

For over 30 years, Family Caregiver Alliance has offered programs to support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions. FCA offers programs at national, state and local levels. The National Center on Caregiving was established at FCA in 2001 to advance the development of high-quality, cost-effective services and policies nationwide. A wealth of caregiving advice, resource listings, newsletters, fact sheets, research reports, policy updates and discussion groups are available free on the FCA website. Visit or call (800) 445-8106 for more information.


© 2015 Family Caregiver Alliance. All Rights Reserved. No portion of this newsletter may be reproduced without the express permission of Family Caregiver Alliance.


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