July 2015

Vol. 6, No. 7

 

(800) 445-8106

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Newsletter Credits

 

Editors
Calvin Hu

Michelle Venegas 
 

Contributors

Kathleen Kelly
Calvin Hu
Lana Sheridan
Michelle Venegas
Leah Eskenazi

Executive Director
Kathleen Kelly

Board of Directors 

 

Directors
Jacquelyn Kung, President
Dan Lieberman, Vice-President
Jeff Kumataka, Treasurer
Aiden 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
At Family Caregiver Alliance, we have a lot of exciting events happening this summer. To support our Camp for Caring program, FCA has launched an Indiegogo crowdfunding campaign. We are also launching a new research project called Atlas of Caring. A new caregiver support group in Emeryville, moderated by FCA's Amanda Hartrey has just started this month. And later this month, we will be accepting applications for the Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards. All these events and a couple more can be found just below in the Special Announcements section.

Family caregivers, we know you have lots of stress, lots of responsibilities, lots of physical chores, lots of financial commitments and not enough hours in the day. During this summer season, we'd like to ask that you make the time to take care of yourself. Don't hesitate to ask for help, or feel guilty when your body and emotions are telling you what you already know, caregiving is hard work. Caregiving is a journey, it's a marathon, and you need to make sure that you are healthy, and happy enough to be in it for the long term.

We would appreciate any feedback you have for us about our monthly newsletters. Please email us at [email protected].

Sincerely,

Calvin Hu
Education Coordinator, Family Caregiver Alliance

specialannouncementsfFIXSPECIAL ANNOUNCEMENTS

Indiegogo crowdfunding campaign: support Camp for Caring

Camp for Caring is a unique experience for those with advanced cognitive and physical impairments. Campers spend time in a beautiful retreat setting engrossed in highly structured activities that are meaningful, stimulating and fun (arts and crafts, singing and dancing, low impact exercises, group games and hand massages.) Camp is held at a serene setting that is peaceful, quiet and surrounded by lush gardens and spectacular views of nature.

Please help support our Camp for Caring program by donating today! Visit our Indigogo campaign page to learn more and to donate.




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

We are excited to be involved in the Atlas of Caregiving Pilot. Our goal is to understand, at a higher level, the physical and emotional impact of providing care, in the hopes that we can use the data collected to create new technologies, improve services and develop policies to make caregiving both easier and more effective.

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 lean more and to find out how to participate, please click here to visit our Research Opportunities for You section.


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, August 19 from 6 p.m. 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's, please call to register before attending this support group. 




Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards 

The 2015 Gilbert Awards online application will be available on Monday, July 27, 2015

With continuing support from The Rosalinde and Arthur Gilbert Foundation, Family Caregiver Alliance is pleased to oversee the annual Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards program.

A $20,000 prize for each of three categories with be awarded for: Creative Expression, Diverse/Multicultural Communities, Policy and Advocacy.

For more information, eligibility requirements and to submit and online application form, please visit our Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards page.

*Applications must be received by Friday, September 18, 2015, 5 p.m. PST  




Caring from Afar- featuring Dr. Richard Caro update

FCA's interactive tech workshop on home sensor systems will be held at the University of San Francisco campus on Saturday, September 12, 2015 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.


Latino Forum update

Please join us on Saturday, October 3 in the heart of the Mission district for the 4th Annual Latino Forum. The forum will be hosted at the Mission YMCA in San Francisco, 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.   



ARTICLESLEAD ARTICLES FOR CAREGIVERS

  

Does Music Affect Memory? Music Therapy Is One of the Best Activities for Dementia Patients      

 

Recent research is creating a consensus on the benefits of music therapy on dementia. Read some of the surprising ways that music can stimulate the brain and help in recollection. 


 


Home Health Agencies Get Medicare's Star Treatment 

 

A new report by the government rates home health agencies on a scale from one to five. Home health agencies bring medical services into the patient's homes in the form of nurse, physical therapist and other home visits by medical professionals. While being relatively economical for Medicare and their patients, the home health agencies can be difficult for doctors and patients to evaluate. The rating system seeks to provide guidance and clarity for consumers.  

 


 


Dementia: GPs say patchy services fail patients 

 

The American Healthcare System is not the only one struggling to cope with providing for dementia patients. Read about the trouble our cousins across the pond are having with their own battle to provide care. Polled doctors reported concern about "patchy service" for those with dementia, and where there was a complete lack of services for dementia patients, up to twenty-five percent of respondents reported they would consider not referring their patient to a specialist for an early diagnosis. As in the United States, family caregivers are relied upon to make up significant gaps in care and service. 

 

 



 

Quote of the Month.
 

If you can't change your fate, change your attitude. 


Amy Tan

 


CareINFOCAREGIVING INFORMATION

 

Dementia and Driving 


When an individual is diagnosed with dementia, one of the first concerns that families and caregivers face is whether or not that person should drive. Download and share our fact sheet on this very delicate subject here.  


"Warrant scam" arrives in the Bay Area

The San Mateo County Sheriff's Office has just issued a bulletin on the "warrant scam," whereby a criminal calls claiming to be from the San Mateo County Sheriff's Office and demands payment for an "arrest warrant" or threatens prosecution. Get informed about this scam here. 


Family Caregiver Guide: Durable Medical Equipment

Next Step in Care has released a guide for durable medical equipment (wheelchairs, hospital beds, infusion pumps, etc.) that is covered by medicare. Click here to read or download the guide in English, Spanish, Chinese or Russian. 


Compare Long Term Care Costs Across the United States
 
Genworth provides a robust database to estimate the cost of long term care across the 50 states. Visit the website, or download the app. Calculate the cost of care annually, monthy, or daily by state or by county.   
 
 
  
FCAPresentationsFCA PRESENTATIONS & WORKSHOPS


July 29, 2015; 1 to 2 p.m. PST Online 


What Every Caregiver Should Know about Downsizing,Decluttering and Getting Organized! (Webinar)

 

The webinar will focus on key information for caregivers on downsizing, decluttering, and getting organized both for their own needs and also for their loved ones for whom they are providing care. Practical tips and strategies on each of these areas will be discussed.
 
*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   
 
August 18, 2015; 4:30 p.m. to 6 p.m. in Menlo Park, CA

  

Family Dynamics

 

Sometimes sharing and communicating with family members about caregiving for a loved one can be challenging. Learn how to foster agreement, encourage cooperation, and receive tips for more effective communication within families at this workshop.

-Learn about family dynamics

-Hear about communication skills that promote cooperation

-Learn new coping strategies and conflict resolution skills  

When:
Tuesday: August 18, 2015, 4:30 p.m. to 6 p.m.

Where:
Peninsula Volunteers
Rosener House Adult Day Services
500 Arbor Rd
Menlo Park, CA 94025

Speaker:
Christina Irving, LCSW, Family Consultant
Family Caregiver Alliance

To Register:
Contact Calvin Hu at 415-434-3388 ext. 313. Feel free to leave a message with your name, number, email and the name of this workshop.


September 12, 2015; 10 a.m. to 12 noon in San Francisco, CA

Caring from Afar
 
New in-home sensor systems claim they offer peace of mind and the ability to alert the family caregiver to activities or situations of a care reciever that are potentially dangerous. Are those claims true?

In this special new workshop for family caregivers, we'll 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 

When: 
Saturday: September 12, 2015, 10 a.m. to 12 noon

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

 

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

To register:
Call or email Calvin Hu at 415-434-3388 ext. 313

This program is co-sponsored by the University of San Francisco, School of Nursing and Health Professions.
  
EVENTinCOMMUNITYEVENTS IN THE COMMUNITY

July 30, 2015; 11 a.m. PST, online

  

A Caregiver's Guide to Unique Therapy Techniques for Women Veterans (webinar)

 

Are you caring for a Woman Veteran? Join us July 30th from 1PM-2PM CT (2PM-3PM EST) to hear Alicia Rossiter, DNP, ARNP, PNP-BC, FNP, FAANP speak on the unique aspects of this caregiving experience. Dr. Rossiter will provide a brief overview of Posttraumatic Stress Disorder (PTSD) and Military Sexual Trauma (MST) as they relate to Women Veterans and will discuss emerging new therapy options. In addition to learning about new therapy options, the webinar will also provide valuable resources for Caregivers of Women Veterans. 

When:
Thursday: July 30, 2015, 11 a.m. PST

Where:
Online

Speaker:
Alicia Rossiter

To Register:
Sign up via the registration link.


August 5, 2015; 2 p.m. to 4 p.m. in San Francisco, CA

  

Creating a Positive Home Environment

 

Living at home with Alzheimer's disease or dementia can be challenging. Learn how to conduct a home assessment to identify possible safety risks and hazards. Gain tips and tricks on how to adapt the home environment to support independence, well being, and safety.

When:
Wednesday: August 5, 2015, 2 p.m. to 4 p.m.

Where:
CPMC Davies Campus - 45 Castro Street (@Duboce)
Davies Auditorium- Level A, North Tower
San Francisco

To Register:
All programs are FREE and designed for family members and caregivers, unless specified otherwise. Registration is requested; please call 408.372.9971 or email to reserve.



August 6, 13, 20 and 27, 2015; 1 p.m. to 4 p.m. in San Francisco, CA

  

Disability Survival School

 

Over the course of four weeks we will cover information about employment rights, housing, transportation, healthcare, and many other important issues and community resources especially for people with disabilities. 

When:
Four Thursdays starting August 6, 2015, 1 p.m. to 4 p.m.

Where:
Independent Living Resource Center SF
825 Howard St.
San Francisco

To Register:
Classes are free of cost, and healthy snacks will be served. The site is wheelchair accessible. To request accommodations such as assistive listening devices, translation into another language or materials in large print please contact Sarah Jarmon or Fiona Hinze at least 72 hours before the class to help to ensure availability.

To register, please contact Sarah Jarmon at 415. 546.1333 x 307 or Fiona at 415.543.6222

Please refrain from wearing scented products when visiting ILRC.



August 9, 2015; 1:30 p.m. to 4:30 p.m. in Cupertino, CA

  

9th Annual Chinese Forum

 

The 9 th Annual Chinese Alzheimer's Forum invites experts in the field to share their expertise on Alzheimer's and related dementia, including risk factors, disease diagnosis and management, and how to reduce the risk of developing Alzheimer's disease; the advancement of research; and caregiver's journey. 

Topics include:
-Understand Alzheimer's disease and related dementia- advice for caregivers and our loved ones
-Research advancement in Alzheimer's disease
-Family caregiver's journey

When:
Sunday: August 9, 2015, 1:30 p.m. to 4:30 p.m.

Where:
Quinlan Community Center
10185 N Stelling Rd
Cupertino, CA 95014 

Speakers:
Dr. Richard Tsai, MD, Yadong Huang, M.D., Ph.D. and Christine Ye 

To Register:
Visit the registration link.

For more information contact Peining Chang 408-372-9943



August 22 and 29, 2015; 10 a.m. to 2 p.m. 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:
Two Saturdays in August 22 and 29, 10 a.m. to 2 p.m. (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 August 19, 2015


ResearchRESEARCH OPPORTUNITIES FOR YOU

PROFESSIONAL LISTINGS:

 

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 a $200. For more information visit the project website atlasofcaregiving.com. 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.
 
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, 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 video-conferencing 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, or call (415) 514-2935.


GRADUATE LISTINGS:

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.

Investigators:
Zo� Pontius-Courtney, BSN
John Ryan, BS
Zo� 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.


 


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

 

� 2013 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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