May 2015

Vol. 6, No. 5

www.caregiver.org

(800) 445-8106

Section Links

Special Announcements

Lead Articles for Caregivers

Caregiving Information

FCA Presentations & Workshops

Events in the Community

Research Opportunities for You

Donor Thank You

Quick Links

Family Care Navigator

FCA Fact Sheets

California Caregiver Resources Centers

Caregiver Tool: State-by-State Help

Select a Newsletter

Newsletter Credits

Editors
Calvin Hu
Michelle Venegas

Contributors
Kathleen Kelly
Calvin Hu

Lana Sheridan
Michelle Venegas
Leah Eskenazi

Graphics/Production
Andrea Orvik

Executive Director
Kathleen Kelly

Board of Directors

Directors
Ping Hao, President
Wanda Borges
Herman S. Brown
Katy Thomas Fike
Moira Fordyce
Jeff Kumataka
Jacquelyn Kung
Dan Lieberman
Michael Malewicz
Rajiv Mehta
Chris Park
Kathleen Raffel
F. Burns Vick
Deborah Wolter

May is amyotrophic lateral sclerosis (ALS) Awareness Month. Commonly known as Lou Gehrig's disease, more than 30,000 Americans are living with ALS, with an additional 6,000 new diagnoses each year. While the exact cause of the disease is currently not known, the debilitating symptoms and effects have been well documented. ALS attacks nerve cells causing muscle atrophy and may bring about total paralysis while in most cases preserving full cognitive function.

Caregivers of people with ALS should seek out information and support to aid them in their care giving tasks. Creating a good working relationship and communication with physicians and drawing upon the support of family, friends and social service professionals will provide the needed support and knowledge. Caregivers should also never lose sight of self-care, making sure they remain healthy emotionally and physically.

You can learn more about ALS in the Caregiving Information section of Connections where we have provided a link to our ALS fact sheet.

"Don't think I am depressed or pessimistic about my condition at present. I intend to hold on as long as possible and then if the inevitable comes, I will accept it philosophically and hope for the best. That's all we can do."

-Henry Louis "Lou" Gehrig

We would appreciate any feedback you have for us about our monthly newsletters. Please email us at edprograms@caregiver.org.

Sincerely,

Calvin Hu

Education Coordinator, Family Caregiver Alliance

SPECIAL ANNOUNCEMENTS

Save the Date: Latino Forum 2015

Family Caregiver Alliance's fourth annual all Spanish language Latino Forum will be on Saturday, October 3rd from 8:30 am to 12:30 pm in San Francisco. Mark your calendars.

Cornerstone Theater Company presents CALIFORNIA: THE TEMPEST

Cornerstone Theater Company is back in San Francisco presenting California: The Tempest! Cornerstone invites you to join them on their epic, year-long, nine-city, theatrical road-trip across the greatest state in the nation! Back in 2006 Cornerstone did a show with seniors and their caregivers in San Francisco. This new show features a multi-generational cast of over 20 local San Francisco seniors and teens alongside actors from across the state of California.

For the past two years Cornerstone has interviewed 100s of Californians in San Francisco and 9 other communities across the state - the result is California: The Tempest. This adaptation of Shakespeare's The Tempest is set on the Lost Coast and incorporates the challenges of California into a play that includes love, disaster, revenge, forgiveness, earthquakes, drought, and food equity. The play begins to imagine a healthy and inclusive future for California.

Showtimes:
Performs June 4, 5, 8PM and June 6 4PM at Z Space in the Mission District- 450 Florida Street, San Francisco

Seating is limited, call 1-866-811-4111 to purchase tickets. Tickets are Pay-What-You-Can (Suggested donation $20). Appropriate for all ages.

If you have questions please contact Ashley Sparks at 540-558-8744 or email asparks@cornerstonetheater.org.

For more information visit:
http://cornerstonetheater.org/california-the-tempest/communities/california-the-tempest-san-francisco/

LEAD ARTICLES FOR CAREGIVERS

Living, and Dying, at Home

The majority of seniors want to stay at home and avoid moving to a nursing home. The Atlantic discusses two possible options: "Villages" where seniors who can afford to stay at home work together, pool resources and help each other out, and for seniors who can no longer afford to stay at home, a residence like Sanborn Place, where seniors have complete independence, but also have access to the services of an assisting living facility.

In Race for Medicare Dollars, Nursing Home Care May Lag

Nursing homes are increasingly courting short term clients, like those needing care after surgery, injury or illness. However, despite the lucrative nature of these arrangements, many nursing homes are unable to provide the complicated care needed and the appropriate level of professional medical staff.

How to Care for the Caregiver

While very commonly overlooked or ignored, caregivers should not forget to manage their own self-care. Read some suggestions on physical, social, leisure and therapeutic activities to help recharge and invigorate you.

As CARE act takes effect, study shows caregivers want - and need - more information

To coincide with the implementation of the CARE act in New Jersey, Rutgers University has published a study on New Jersey caregivers, which revealed that they want more information on services, diagnoses and stress management. The CARE act requires among other things that hospitals "provide the caregiver with adequate instruction for the care of the patient following the patient's discharge from the hospital."

Quote of the Month.

Everything that happens to us leaves some trace behind; everything contributes imperceptibly to make us what we are.

-Johann Wolfgang Von Goethe.

CAREGIVING INFORMATION

ALS Awareness Month

May is ALS Awareness Month. Read and pass along FCA's fact sheet on ALS and caregiving.

Link2Care Support Group

Are you a caregiver in California, or are you caring for someone long-distance in California? Are you unable to attend an in-person support group? Our Link2Care online support group was designed for you. Click here more information and to join.

Tips for Choosing a Day Center for Your Parent

FCA's Leah Eskenazi and Next Avenue give tips on finding the right adult day center, including the questions you should be asking.

Tips for When a Friend or Relative Has Dementia

A list of ten helpful tips for friends and family of someone diagnosed with dementia.

Memory Loss and Denial: 5 Warning Signs Loved Ones Should Not Avoid

Family members and friends often consciously ignore the signs of memory loss and dementia, hoping that their loved one will get better on their own and that the condition is temporary. But if the signs are present, it is important to get out of denial so the person with memory loss or dementia can get the treatment and care they need.

FCA PRESENTATIONS & WORKSHOPS

May 27, 2015; 1:00pm-2:00pm PST Online

In's and Out's of Long Term Care (Webinar)

The purpose of this webinar will be to address and inform family caregivers and professionals about the realities of Long Term Care (LTC). What is LTC? What are the chances of anyone needing LTC? How long does LTC typically last? How are LTC expenses paid? These are some of the questions that often come up, so in this webinar a seasoned professional will provide insight into this complex system.

*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, & Licensed Professional Clinical Counselors). REGISTER ONLINE

June 24, 2015; 1:00pm-2:00pm PST Online

Seasons of Care Gap Practices: Lively Ways Caregivers Can Capture Moments of Selfcare (Webinar)

Seasons of Care™ is a care-for-the-caregiver program which integrates the mindful and spiritual dimensions of caregiving to promote wellness using the contemplative and expressive arts. SOC has developed a series of "gap practices, simple, uplifting activities caregivers can do throughout their day to practice selfcare, ensure a heartfelt connection to caregiving and cultivate resilience.

EVENTS IN THE COMMUNITY

May 30 and June 6, 2015; 9:00am-1:00pm in San Francisco, CA

CARING WITH RESPECT

A FREE two-day workshop taught in Spanish, for Latino family caregivers of older loved ones with memory loss.

-Learn about Alzheimer's disease and other forms of dementia
-Learn about the different stages of this complicated disease
-Learn ways to help your loved one and understand difficult behaviors
-Learn to take care of yourself as a caregiver and to share your experiences

When:

Saturdays: May 30 and June 6, 2015, 9:00am-1:00pm

Where:

ON LOK LIFEWAYS 30th STREET CENTER - 2nd Floor
225 30th Street, San Francisco, CA 94131

To Register:

For more information about this event, contact Daniel Frias-Vidal at 415-999-0671

SPACES ARE LIMITED - REGISTRATION IS REQUIRED

June 6, 2015; 8:30am-1:00pm in San Francisco, CA

Chinese Outreach Program with Memory and Aging Center

Join us for an exciting morning of mingling with the UCSF Memory and Aging faculty. This is an opportunity to talk to us about dementia prevention, treatment, genetics, resources and learn about our clinical trials.

There will be translation in both Cantonese and Mandarin. Coffee and breakfast will be served.

When:

Saturday: June 6, 2015, 8:30am-1:00pm

Where:

Byers Auditorium 600 16th Street, San Francisco, California 94158

Contact Info:

Christie Yeung, 415-476-1678

June 6 and 13, 2015; 10am-2pm in Burlingame, CA

Tools for Effective Caregiving

If you help care for an older adult, there is a FREE class available to make your path a little smoother. This educational series focuses both on the needs of caregivers and their loved ones. Classes provide hands-on opportunities to learn practical skills and help people cope with the challenges of elder care. It also connects caregivers with support groups and other community resources. (This course is NOT for professional caregivers.)

Topics include:

Home safety
Fall prevention, body mechanics
Managing caregiving stress
Understanding and working with difficult emotions
Management of challenging behaviors
Basic hands-on personal care skills.

When:

Saturdays: June 6 and 13, 2015, 10am-2pm. (Participation in both parts is required)

Where:

Mills-Peninsula Medical Center
1501 Trousdale Drive, Burlingame
(Conference Room H, First Floor Conference Center)

To Register:

Call (650) 696-3660 to register or for more information.

Space limited. Registration required; Register by June 3, 2015

June 18, 2015; 8:30am-Noon in San Francisco, CA

Early Stage Alzheimer's Forum:
Our Journey, Our View

A half-day educational forum developed BY people with early stage Alzheimer's disease, FOR people with early stage Alzheimer's disease or a related disorder. Information presented will include research and treatment, an early stage individual sharing her journey, brain games, and participants will have an opportunity to brainstorm common challenges as a group.

Please note: This event is not open to professionals

When:

Thursday, June 18, 2015, 8:30am-Noon

Where:

San Francisco, CA (You will receive the exact address location when you register)

To Register:

Please contact Lan Trinh at 800.272.3900 or email ltrinh@alz.org

RESEARCH OPPORTUNITIES FOR YOU

PROFESSIONAL LISTINGS:

Paired Integrative Home Exercise for Seniors with Dementia and their Caregivers (Paired PLI� Study)

UCSF Osher Center for Integrative Medicine and Department of Psychiatry

Caregivers and their loved ones are invited to participate in a research study to test a new home exercise program designed to help people with memory loss maintain function and independence.

The program integrates exercises from Western and Eastern traditions and will take place at Alzheimer's Services of the East Bay (ASEB) in Berkeley. Classes will meet twice per week over 4 weeks, then once a month for 3 more months. The study will include a comprehensive assessment of physical and mental function.

Write to Dr. Mehling, Osher Center for Integrative Medicine, 1545 Divisadero St, 4th floor, San Francisco, CA 94115 or call 415-353-7342.

Caregiver Skill Building Intervention for Family Caregivers of Persons with Alzheimer's Disease Living at Home

A Rush College of Nursing study provides new information about caring for your relative with dementia and caring for yourself.

Eligibility:
-Age 21 +
-Caring for your relative with dementia at home
-Read /speak English
-High-speed internet
Activities:
-Participate in 30 minute online training modules weekly, for 6 weeks
-Complete 3 online surveys

Receive a $50 Target gift card.
Help us improve this training program so it can help others!

Contact: Janie Urbanic, rushcaregiver@rush.edu or call 1-312.942.2566

Funded by the National Institute on Aging (R42 AG032159), collaboratively conducted by Rush College of Nursing and Grand Marketing Solutions, a small business, in association with the Rush Community Caregiver Outcomes Alliance.

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: http://leafstudy.ucsf.edu, email us at: leaf@ucsf.edu, or call (415) 514-2935

Whole brain radiation therapy informational study

Adelphi Values is conducting a study to explore the ways that whole brain radiation therapy can affect individuals with brain metastases of non-small cell lung cancer. Adelphi Values would like to conduct some interviews with individuals who have received whole brain radiation therapy to discuss their experiences with the treatment. We would also like to conduct interviews with people who care for individuals who have received whole brain radiation therapy to discuss their perspective on the patient's experience after receiving the treatment. Each interview will last approximately 60 minutes. Each person who participates in an interview will receive $100.

Please contact Kas Severson at: kas.severson@adelphivalues.com.

GRADUATE LISTINGS:

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: https://www.surveymonkey.com/r/caretaker

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.

Relationships, Grief, and Life Satisfaction of Spousal Caregivers

My study aims to shed light on how grief over potential losses might affect the connection between caregivers' relationships and life satisfaction. Little is known about this area, and such information may help improve the types of support provided to this ever-growing population of individuals. This study is entirely anonymous, collects no identifying information, and should take 20 minutes or less to complete. At the end you have the chance to provide additional information that you believe is important for me to know. Thank you so much for your time and contribution to this important area of research!"

Study link:

https://unco.co1.qualtrics.com/SE/?SID=SV_bDaBn8xiWPVyeqx

Steven Pote, MA, LPC
Doctoral Candidate, Counseling Psychology
University of Northern Colorado

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.

If you are willing to speak with us (a short phone conversation), please contact Rory Costello at rory.costello@berkeley.edu

Thank you so much for your support.

OUR DONORS . . .
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. View a list of our most recent 2015 Donors

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 www.caregiver.org or call (800) 445-8106 for more information.

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