Volume 1, Number 1
Learning Together, and News for Providers have been condensed to one
Get updates about caregiving by clicking
the "Like" button.
|FCA E-Newsletters Help Keep You Up-to-Date|
Caregiving PolicyDigest-FCA's national briefing on current federal and state legislation, new programs and funding initiatives. Click to subscribe.
Production & Graphics
Kathleen A. Kelly
|Board of Directors|
Ping Hao, President
Kathy Murphy, Vice President
Helen Sloss Luey, Secretary
Herman S. Brown
F. Burns Vick
A Word from our Executive
Director, Kathleen Kelly
a difficult challenge to care for someone who is "here, but not here"--here physically, but gone mentally and psychologically. You feel alone, and in some
ways, you are. For many caregivers, it's as if there's a stranger in the house. Read
Coping with the Added Stress of Caregiving During the Holidays
For families nation wide caring for loved ones with chronic, disabling health
conditions the holiday season can add to an already heavy load of responsibilities and cause feelings of stress to soar. Read more...
Simple Ways to Prevent Alzheimer's
As people get older, concerns about staying healthy include keeping their minds sharp and avoiding brain diseases such as
Alzheimer's (AD). With no currently known cure, results of recent research are raising hopes. Read
A Caregiver's Pledge
It is vital for family caregivers to care for themselves if they are to be physically
and emotionally healthy. Prioritizing self care not only ensures better health but it makes you a more effective cargiver. Read more...
Dementia with Lewy Bodies Fact Sheet
Dementia with Lewy Bodies (DLB) is a progressive degenerative disease or syndrome of
the brain. It shares symptoms-and sometimes overlaps-with several diseases, especially Alzheimer's and Parkinson's. Read more...
|2010 Year of the Family Caregiver Starts on November 17th
November marks the 10th Anniversary of the National Family Caregiver Support Program (NFCSP), a program that has for 10
years supported seniors and individuals with disabilities to remain in their homes longer. Read more...
California Budget Passed After 100 Day Delay
California's Legislature passed a state budget on October 8th, 2010 after a 100 day delay. Unfortunately, Governor Schwarzenegger
vetoed funding for several programs that serve caregivers and care recipients. Read more...
Provides Strong Support for Caregivers
At the federal level, the Senate Appropriations Committee approved a spending bill in July
2010 with a number of provisions that are beneficial to caregivers. The full Senate has not yet voted on the bill, however, a vote is expected
after the November elections. Read more...
Title III Programs Finds Increased Demand for Service
Title III programs are authorized by the Older Americans Act and provide
services to seniors in every state, including home-delivered meals, transportation services, and support for caregivers. Read more...
|An FCA Staff
Ramani Cohelan, our receptionist, has been
working with FCA for the past 10 years. She is the first point of contact for numerous people seeking help who reach out to us by phone, email or by
walking through our doors. Recently a caller best described Ramani's commitment, professionalism and helpful nature by sharing her experience via
email. Read more...
Workshops, and Retreat|
Do you help to care for a family member or friend who is frail, disabled, has a chronic illness or cognitive impairment? If so, this is the
class for you! Check out the details of our popular Caregiver College workshop planned for February, 2011! Read more...
From the Heart|
Many thanks to our generous supporters who make the work
we do possible Read more...
|For more than
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.|
2010 Family Caregiver Alliance. All Rights Reserved. No portion of this newsletter may be reproduced without the express permission of Family Caregiver
A Word from our Executive Director, Kathleen Kelly
I am often asked for a quick and easy
answer to what Family Caregiver Alliance does—a brief explanation that can fit into an elevator ride. The simplest response is our mission: To
improve the quality of life for family caregivers through services, advocacy, research and education. This has been our charge for more than 30 years. But
how we fulfill our mission has changed during that time. Here is a brief summary of our current activities:
Caregivers First: FCA Plan of Action 2010-2011
Use Best Practice: FCA will continue to use best practice programs to improve caregiver well-being in every area of our direct support programs from
how we answer the phone to conducting a caregiver assessment to mediating family conflict to holding stress reduction workshops. We review trends and
research on caregiver interventions, risk factors, new program developments and demographics as well as our own service data to change priorities in
practice or focus for educational activities. We use feedback from families from our evaluation questionnaires. Yes, we read all those evaluation forms
and the comments too. We get many of our best ideas from family caregivers.
One Simple Question: Are You a Caregiver? We advocate for family caregivers to be recognized and assessed for their own needs within the health and
social service systems. We don't think service systems should wait for caregivers to "self-identify." Service systems should be proactive and ask the
question on health forms, on medical visits, during health and social assessments for services for your relative, partner or friend or when using a
community information and assistance service.
Be At The Table: Numerous federal initiatives such as health reform, workforce development programs and caregiver support services for Veterans have
included family caregivers as key partners or service recipients. Once the spotlight of public attention has waned after these intensive legislative
efforts, the hard work of writing the operational policies begins. As an agency experienced in developing care systems and a voice for family caregivers,
FCA is "at the table" representing the best interests of those who provide the majority of long term care in the country. As they say, the devil is in the
Create Caring Communities: As the Technical Assistance Center on Caregiver Programs for the U.S. Administration on Aging, FCA continues to seek out and
share experience-based and informed practices for the states and community program developers. Sharing expertise across the country, networking programs
and experts together help to build caring communities. We all know that isolated caregivers burn out faster. We need to build that "village" it takes to
support that caregiver—one family care system, one supportive service, one integrated community system at a time.
At FCA, we understand that family caregiving is a complex system crossing personal and public boundaries and systems.
Coping with the Added Stress of Caregiving During the Holidays
For many caregivers the holiday season gives rise to stress, frustration and anger, instead of peace and good will.
Caregivers may feel resentful towards other family members who they feel have not offered enough assistance. Managing care for someone who has a
cognitive impairment may leave caregivers feeling that they will not be able to participate as fully as they would like in family gatherings. Already
feeling overwhelmed with caregiving tasks, stressed-out caregivers may view traditional holiday preparations as more of a drain of precious energy than a
Following are some suggestions that may help make the holidays more enjoyable for you and your loved ones. Keep in mind that the holidays can, in fact,
provide unique opportunities to seek better communication, connection and support from family and friends.
An opportunity for communication
It’s hard to know how much to communicate about a loved one’s decline in cognitive functioning and personal care needs. Whom do you tell?
How much do you tell?
Although it is understandable to have reservations about discussing a loved one’s impairments, honest communication about the realities of the
caregiving situation offers others the opportunity to respond with assistance. Sharing the truths of your situation may help reduce some of the feelings
of isolation and lack of appreciation common in caregivers.
Holiday greetings and a brief note
Some caregivers have had success in writing a brief note describing the person’s condition and enclosing it in a holiday greeting card. This can
be a nonthreatening way to inform distant or uninvolved relatives about the realities of the caregiving situation. If written in a tone that’s not
accusatory or guilt-inducing, family members may be more forthcoming with assistance or, at least, have a better understanding of the effort you are
putting into providing care.
Let sleeping dogs lie?
It is common for caregivers to be disappointed with family members who they feel are not "pulling their weight" in caregiving responsibilities. If this
holds true for you, and your goal is to enjoy the holidays, you must decide how much and when to communicate this disappointment. Consider clearing the
air before the holidays or perhaps resolve within yourself to put those feelings on hold, with the intention to discuss the matter after the holiday
season passes. In the meantime, enjoy the holiday!
Be clear about your energy level
Let family members know that your caregiving duties are keeping you very busy and that you only have so much energy for holiday preparation and hosting
Accept the need to adapt
Caregivers often have to adapt their traditional role or experience of the holidays. This may mean allowing another family member to host more
time-intensive festivities. You may need to modify the amount of time away from home to match the comfort level of your impaired loved one. You may also
have to choose which events to attend based on which would be the simplest, least exhausting and most enjoyable for the person for whom you provide
care—and for you.
The visit room
Don’t expect the person with cognitive impairment to be able to adapt to all situations; you may need to adapt the environment to their needs.
See if you can arrange to have another room in the house designated as a quiet place for the care receiver. Many people with dementia find multiple
conversations and background noise disturbing. To avoid this anxiety, the person may benefit from time in a quieter room with less stimulus where family
members could take turns visiting with them.
Share your wish list
- Respite: Some caregivers ask for time off from caregiving duties as a gift for the holidays. This could mean another family
member gives you a break. Sometimes asking for a Saturday off "in the next three months" is more accepted, as family members can then schedule it into
their calendars. If this is not possible, perhaps they would consider paying for a home care worker or a stay at a respite facility. Your FCA Family
Consultant can help you locate these resources in your area.
- Home repairs: Do light bulbs need changing, or grab bars need installation? That maddening pile of junk in the garage needs
to go to the dump? Tasks such as these may be the perfect way for a family member to help out if providing personal care is too uncomfortable for them.
- Care for you! How about a gift certificate for a massage, facial or manicure? How about an opportunity to spend the day
fishing or a walk in the outdoors?
- Book your homecare worker early! Speak with your home care worker or home care agency early about your holiday plans!
Schedule one-on-one time
While caregiving, it is easy to get caught up in all the tasks of personal care and homemaking chores. Make a point of setting some time aside this
holiday season to enjoy the person you care for in a relaxed, one-on-one context. The best activities are those which take advantage of long-term
memory—usually less impaired in people with dementia. Try looking through family photo albums or unpacking holiday decorations, which may stimulate
Reflect on the rewards
Reflecting on the rewards of caregiving can help maintain your self-esteem. It may feel very rewarding to know that you are fulfilling a vow or promise
you have made to the person for whom you provide care. Your caregiving may be an expression of living up to your personal ideals or religious beliefs. You
may also be experiencing a great deal of growth as you learn new skills and meet challenges in ways you never imagined possible.
A little thank you goes a long way
After the holidays, write a thank you note to family members or friends who spent time with your loved one. Emphasize the positive impact their visit
or brief time spent with your loved one had on them. This may reinforce positive feelings from their visit and diminish any discomfort they experienced.
They may then be more encouraged to visit again or be more supportive of your efforts.
Simple Ways to Prevent Alzheimer's
As they get older, many people are concerned about staying healthy. Besides keeping their bodies healthy, they want to keep their minds sharp and
avoid brain diseases such as Alzheimer's (AD) which occurs more often in older people than in younger people. Currently, AD has no known cure, but
results of recent research are raising hopes that someday it might be possible to delay the onset of AD.
To download the publication from the National Institute on Aging, Can Alzheimer's Disease Be Prevented?, please visit NIA's website.
Article provided by the National Institute on Aging (NIA) which has primary responsibility for research on AD and age-related declines in mental
A Caregiver's Pledge
I will understand that I can’t care for anyone else if I also don’t care for myself. I will keep an image in my mind of putting the
oxygen mask on myself first.
I will remember that the only person I can change is myself. I cannot change my loved one who is ill, nor my family members.
I will find opportunities to laugh, daily. These might come in movies, jokes, television, or with friends who can see the humor in my situation and
remind me to do the same.
I will get away from my caregiving duties on a regular basis, even if it is just to walk around the block. But I will also find ways to have lunch
with a friend, go to a movie, window shop, breathe in fresh air, watch the sunset, or eat a hot fudge sundae.
I will visit a support group, either online (at www.caregiver.org
or Link2Care) or in person in my community,
so that I know that I am not alone. If a support group isn’t right for me, I will find a friend to talk to, call my family consultant, or attend a
I will learn as much as I can about my loved one’s illness so I can better care for him or her with understanding. I will learn techniques that
will make caregiving easier for both of us.
I will say “yes” when people offer to help. I will make a list of things they can do and post it on the refrigerator, so that when those
offers come, I’ll be ready. When there are not offers, I will ask for help, even though it might be hard to do so.
I will use community resources—such as Meals on Wheels, paratransit, day care programs, and volunteer respite programs—to help make my
caregiving duties easier.
I will find something I really like to do and make sure I find time to do it on a regular basis. Just because I am a caregiver doesn’t mean I
have to give up everything that is meaningful to me. I will read, knit, garden, scrapbook, do genealogy or woodworking for a designated period of time
I will remember that I am loved and appreciated, even when my loved one can’t tell me that. I will honor the nurturing, responsibility, caring
and support that I provide to my loved one as a gift I give.
Dementia with Lewy Bodies Fact Sheet
Dementia with Lewy Bodies (DLB) is a progressive degenerative disease or syndrome of the brain. It shares symptoms—and sometimes
overlaps—with several diseases, especially Alzheimer's and Parkinson's.
People who develop DLB have behavioral and memory symptoms of dementia like those of Alzheimer's Disease and, to varying extents, the physical, motor
system symptoms seen in Parkinson's Disease. However, the mental symptoms of a person with DLB might fluctuate frequently, motor symptoms are milder than
for Parkinson's, and DLB patients usually have vivid visual hallucinations.
Click here to read the rest of the fact sheet on Dementia with Lewy Bodies.
2010 Year of the Family Caregiver Started on November 17th
November marks the 10th Anniversary of the National Family Caregiver Support Program (NFCSP), a program that has for 10 years supported seniors and
individuals with disabilities to remain in their homes longer. In recognition of the vital role caregivers provide, the Administration on Aging (AOA) has
created a new website to recognize caregivers, and offer downloadable tools and resources, view upcoming events and that also accepts submittal of written
and video testimonials. According to the NFCSP more than 65 million people, 20% of the U.S. population spend an average of 20 hours per week providing
care for chronically ill, disabled, or aged family members and friends. In addition, a 10th Anniversary celebration took place on November 17th in
Washington, DC and AOA encourages its caregiving partners to add their related events to a calendar on www.celebratefamilycaregivers.org. In a recent national survey, 81% of caregivers interviewed said that NFCSP allowed them to care for
their loved ones longer and avoid more costly and restrictive placement in an institution.
California Budget Passed After 100 Day Delay
California's Legislature passed a state budget on October 8th, 2010 after a 100 day delay. Unfortunately, Governor Schwarzenegger vetoed funding for
several programs that serve caregivers and care recipients. The Governor cut $6.4 million for Community Based Services programs that generally serve
low-income seniors and include the Alzheimer's Day Resource Centers, Brown Bag program, Respite, and Senior Companion. The Governor also ordered a 3.6%
across-the-board reduction to the hours assessed for In-Home Supportive Services (IHHS), meaning caregivers will likely have their hours reduced.
Federal Bill Provides Strong Support for Caregivers
At the federal level, the Senate Appropriations Committee approved a spending bill—Departments of Labor, Health and Human Services, and
Education, and Related Agencies Appropriation Bill, 2011 (S. 3686) in July 2010 with a number of provisions that are beneficial to caregivers. To date the
full Senate has not yet voted on the bill. The Senate bill is similar to the President's proposed budget which provides an additional $104.5 million in
funding (as compared to FY 2010) for President Obama's "Caregiver Initiative" which emerged from Vice President Biden's Middle Class Task Force.
The additional funds are expected to provide one million more hours of adult day care and 1.3 million more hours of personal care assistance for
seniors who need it, relieving pressure on family caregivers. In addition, $50 million is allocated for the National Family Caregiver Support Program to
help states serve an additional 200,000 caregivers with information about services, caregiver counseling and training, and three million more hours of
respite care. The Senate bill provides an additional $7 million for the Lifespan Respite Care Program to provide grants to states to expand respite care
and improve coordination, access, and quality.
Caregivers would also benefit from a proposed $10 million State Paid Leave Initiative in the Department of Labor which would provide competitive grants
to states to assist them in establishing and implementing paid leave programs. Paid leave allows employees to take time off (typically 6 weeks) to care
for a seriously ill child, spouse, or parent, or to bond with a new child. Paid leave would be especially helpful for family caregivers who are often
forced to choose between keeping a job or caring for a loved one.
Family Caregiver Alliance strongly encourages caregivers to speak with their elected officials about their own caregiving experiences in relation to
the proposed budget.
Report on Title III Programs Finds Increased Demand for Service
Title III programs are authorized by the Older Americans Act and provide services to seniors in every state, including home-delivered meals,
transportation services, and support for caregivers. The agencies are funded through several sources, and of the 64 agencies that responded to a recent
GAO survey, 69% reported that their state funding was reduced for fiscal year 2010.
The authors of the report also found that state agencies administering these programs are facing increased demand for services and are unable to meet
all requests for services. In addition, nearly one in five respondents (19%) reported that they were generally or very unable to serve all seniors who
requested home-delivered meals.
Respite programs, funded by Title III E, were the most requested services in FY 2009. However, 27% of responding agencies that provide respite
reported that they were generally or very unable to meet all requests for respite care. The Older Americans Act is set to be re-authorized in 2011 and
the Administration on Aging has a website for input on the reauthorization (go to: www.aoa.gov and click on "Older Americans Act"). Family Caregiver
Alliance strongly encourages anybody who uses or administers Title III programs to provide feedback to the Administration on Aging through this website.
To read the GAO Report (Report # GAO-10-1024T), go to: http://www.gao.gov/new.items/d101024t.pdf.
An FCA Staff Member Highlighted
Ramani, our receptionist, has
been working with FCA for the past 10 years. She is the first point of contact for numerous people seeking help who reach
out to us by phone, email or by walking through our doors. Recently a caller best described Ramani's commitment, professionalism and helpful nature by
sharing her experience via email.
"I wanted to thank you for your very professional responses to my questions about your organization yesterday. As I mentioned, I was calling on behalf
of someone I felt could use services such as those offered by your organization and you confirmed that there is a good match between client need and the
services offered. I was impressed with the knowledge you have and your responses to my questions gave me the confidence to pass the information about your
organization on to the person who may become a client.
It is so refreshing to be able to discuss issues with a knowledgeable person who is clearly interested in the organization that they work for. I truly
appreciated being able to ask and have my questions answered so thoroughly in a single call.
Please pass these accolades on to your administration. You are truly an asset!"
Reprinted with permission, J.E. Iverson
Classes, Workshops, and Retreats
Family Caregiver Alliance and Palo Alto Medical Foundation Community Health Care Endowment Fund are teaming up to bring you Caregiver College in
February, 2011. This workshop is a free class for learning and sharing with one another. Experts will speak on the following topics:
- Incontinence care/toileting
- Dental care
- Transfer skills
- Caregiver self-care
- Dealing with behavioral issues
Watch for details on our website under Classes, Workshops and Retreats in early December!
Gifts From the Heart
W. R. Abbott
Araceli M. Alberti
Bernadine D. Ali
Edwina V. Anderson
James J. Anderson
Bernice St. Augustine
Dorothy D. Badal
Richard C. Baerresen
Hannah L. Basuino
Gerry B. Belling
Carolyn K. Bellis
Marion M. Blau
Laurel A. Botelho
Susan L. Castellanos
Gloria C. Cohen
Carolyn C. Fong
Grace P. Fretter
J. Patrick Gallagher
Irwin J. Gibbs
Philip Di Giovanni
Ruth A. Hafter
Steve L. Haley
Margie H. Jeangerard
Karen M. Kent
Patricia E. Klahn
Jinny S. Lam
Sonia S. Leistenschneider
Harold A. McElroy
Karen S. McVey
Dennis M. Monticelli
Margaret F. Neal
Francina L. Nur
Barry R. Phegan
Joseph T. Rabban
Richard A. Rieger
San Francisco Federal Credit Union
Debra J. Webb
Donations Made In Honor:
By Peggy Gill
By Faye Bostick
By Denise McEvoy
By Alison Hunt
By Allison Frasier
By Diana Hernandez
By Judy Metzger
Jose Luis Martinez
By Marielos A. Martinez
By Phyllis Posey
By Iris B. Berman, Margaret A. Corrigan, Gary Gibbs, Susan Sugarman
By Alice Webber
Donations Made In Memory:
By Jenna Spain
By Amy Blasenheim
By Betty Thibeaux
Deborah G. Clark
By Paige McAdoo
By Steven Higaki
By Winifred Emery
By Diana M. Franco
By David Gramenz
By Zenaida Camplis
Clarence W. Koop
By Frances R. Koop
By Ruth Narayan
By Jacqueline Johnson
By Marielos A. Martinez
By Georgia Minklein
Jack Sanders By Princess Cornwell, Lorene Pounds, Mary L. Wilson
Thomas Spear Walther
By Anthony Moy
Edith Hill Webber
By Alice Webber
Special Thanks to
Mr. Richard Essey for funding the Spring Caregiver Retreat
© 2010 Family Caregiver
Alliance. All Rights
Reserved. No portion of this newsletter may be reproduced without the express permission of
E-mail to a Friend