Spring 2009
Volume 26, Number 2
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www.caregiver.org
(800) 445-8106
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FCA E-Newsletters Help Keep You Up-to-Date
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Caregiving PolicyDigest-FCA's national briefing on current federal and state legislation, new programs and funding initiatives. Click to subscribe.
Learning Together-For folks in the San Francisco Bay Area—a monthly rundown of FCA workshops, classes and programs especially designed to help you in your day-to-day care. Click to subscribe.
News for Bay Area Providers-Training opportunities, program news and information delivered monthly to health and service providers. Click to subscribe.
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Credits |
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Editor
Bonnie Lawrence
Production & Graphics
Melania Jusuf
Contributors
Evie Christou, Kris Coffey, Amy Friedrich-Karnik, Amanda Hartrey, Jennifer Hull, Melania Jusuf, Kathleen Kelly, Bonnie Lawrence, Rachel Moore, Donna Schempp, Sima Schoen, Lana Sheridan
Executive Director
Kathleen A. Kelly
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Board of Directors
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Officers
Jennifer Arthur, President
Kathryn Lee, Vice President
Gregory Haley, Treasurer
Helen Sloss Luey, Secretary
Directors
Herman Brown
Claude Everhart
Louise Felton
Ping Hao
William Lynch
Diane Mann
Jeffrey Moeller
Kathy Murphy
F. Burns Vick
Sue Wong
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Caregiver University
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Dementia: It's Not Just Memory Loss
Think about how your place of employment would function without a boss or president to weigh the issues and make decisions about what is best for the company, customers and employees. People with dementia are often living in just such a "leaderless" world. Read more...
Frequently Asked Questions: What Is Sundowning?
My mother was diagnosed with Alzheimer's disease two years ago.
Recently I've noticed that Mom gets very agitated in the early part of
the evening. She seems nervous, paces the floor anxiously, and has
become both more confused and more combative. I am having a hard time
coping. Read more...
Reader's Corner
Books we think you'll want to know about to help you in your day-to-day care! Read more...
An Easy Way to Donate to FCA, at No Cost to You!
Raise money to help caregivers every time you search the web or shop online. Read more...
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National Focus
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May Is Older Americans Month!
"We owe older Americans a debt of gratitude and must work to help them age with dignity," President Obama states in his Proclamation for Older Americans Month. "Through home- and community-based services, including health promotion and preventive care programs, many older Americans are able to live more independent and healthier lives." Read more...
Legislation to Watch
Catch up on important state and federal legislation affecting caregivers. Read more...
Event Honors Caregiving Legacy Awardees
Family Caregiver Alliance and The Rosalinde and Arthur Gilbert
Foundation honored the recipients of the 2008 Rosalinde Gilbert
Innovations in Alzheimer's Disease Caregiving Legacy Awards at a gala reception in Las Vegas.
Applications for the 2009 awards are now available on the FCA website. Read more...
Lynn Feinberg to Take Position in Washington, DC
After more than 20 years at FCA, Lynn Friss Feinberg, Deputy Director of FCA's National Center on Caregiving, is leaving the Bay Area to take a new position with the National Partnership for Women & Families in Washington, DC. Read more...
Clearinghouse
Wide-ranging national resources for caregivers and providers.
Read more...
Research Registry
Research studies and clinical trials for caregivers.
Read more...
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California and the Bay Area
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Save the Date! July 8, 2009
Help shape public policy and create a blueprint for care in San Francisco and California! The Alzheimer's/Dementia Summit takes place from 8:30 to 4:30 on Wednesday, July 8, 2009 at San Francisco City Hall. A range of workshops for families and caregivers is scheduled for the afternoon session. Free! Read more...
Framework Offers Principles for Public Policies That Support Family Caregivers
FCA's new issue brief, A Policy Framework to Support California's Family Caregivers, states that "Family caregiving must be viewed as a workable choice by both family caregivers and care receivers, not as an irrevocable duty." The framework offers a set of principles and values to guide policy development and implementation. Read more...
Bulletin Board
News you can use: great caregiving resources throughout the San Francisco Bay Area. Read more...
Learning Together
FCA's new line-up of workshops and classes for families and caregivers. Read more...
Support Groups
These Bay Area groups offer advice, empathy and support. Sign up today! Read more...
FCA's Weekend Camp for Caring
For lucky participants and their families, this weekend camp offers a welcome change from the routine, and 48 hours of respite! Read more...
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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.
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| © 2009 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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Caregiver University
Dementia: It's Not Just Memory Loss
Mr. F was raised in the depression. Always very frugal, he would walk to the telephone and utility companies to pay his bills rather than "wasting money on a stamp." He didn't have any noticeable memory loss. However, one day, a homeless man knocked on the door and asked for money. Mr. F gave him $100. This was so out of the norm for him that his family was immediately concerned that something was amiss. They were right.
Poor judgment such as Mr. F's is often the first sign of dementia. You can see it in a loved one's inability to follow a logical argument—for example, why he needs to take a bath or go to the doctor, or whatever the situation might be. There also might be paranoia, and it becomes difficult to reassure your loved one that everything is okay and no one is stealing money or jewelry or clothes out of the closet.
This poor judgment is referred to as lack of "executive function," and one can liken it to having no CEO in one's brain. Think about how your place of employment would function without a boss or president or someone to weigh the issues and make decisions about what is best for the company, customers and employees. People with dementia are often living in just such a "leaderless" world.
Our response to this is often to become hyper-rational, that is, to explain quite reasonably and logically our argument for why something has to happen. There are two problems with this approach: first, a person with dementia might not be able to follow our explanation, either because he or she has forgotten the first part of the case we have made by the time we have gotten to the end, or second, because even if he/she can remember it, the "logic" doesn't make sense to him/her.
Mrs. E loved going to church activities during the week, but now is confused and not able to participate. Instead of telling her that she can't go because it isn't appropriate anymore, you might explain that the people at church are worried she will fall and you will find other times when you can go with her to make sure she is safe. Sometimes it's necessary to alter the truth to ensure our loved ones' safety.
Mrs. A has diabetes along with her dementia and needs to watch her diet. She eats what her family makes for her, but then she will "sneak" food when no one is watching. The family has told her repeatedly that she cannot eat these snack foods, as they will hurt her blood sugar levels. Mrs. A can tell you what she is and is not allowed to eat, but due to her poor judgment, she will follow her impulse to eat what she can and not think about the consequences.
The best response for a caregiver to someone's losing the ability to exercise good judgment is to make short, simple, declarative sentences about what is going to happen. If we ask a question, such as, "Is that ok?" we open the conversation for someone to say "no." When we get this response, we tend to escalate the argument as we become more insistent or more logical.
Rather than trying to convince a loved one that we are doing something in his/her best interest, it's best to say, "I love you and I have taken care of this." Rather than arguing, it's more effective to be reassuring and comforting—accompanied by a soft touch to the hand. This can do a lot to make caregiving easier. It does not mean we can take advantage of a loved one's incapacity. But as caregivers, often we must be the ones to make the right decision, given that we can comprehend the whole picture, while our loved one cannot.
© 2009 Family Caregiver Alliance
Frequently Asked Questions: What Is Sundowning?
Dear FCA:
My mother was diagnosed with Alzheimer's disease two years ago. Recently I've noticed that Mom gets very agitated in the early part of the evening. She seems nervous, paces the floor anxiously, and has become both more confused and more combative. I am having a hard time coping with these new behaviors. Is there anything I can do?
What you are describing is known as sundowning, a syndrome fairly common in persons with middle-stage Alzheimer's. There may be various reasons for this phenomenon, including the brain's inability to regulate the demented person's "biological clock;" also the reduced light around sunset may trigger some sensory deprivation. Inactivity during the day and medications may intensify the problem. Sundowning typically disappears in the more advanced stages of the disease.
To minimize the sundowning effect, here are some tips:
Try to make sure that your mother has plenty of exercise and activities during the day. Try to avoid daytime naps. An afternoon walk might help. You can also try closing the drapes or blinds around sunset and keeping the house well lit. Avoid caffeine and alcohol, especially after 5 p.m. Substitute herbal or decaffeinated tea or coffee for black tea or regular coffee. You may want to make sure that your mom is not hungry by offering her a healthy snack. Distraction is often a good strategy; try giving your mother something to do with her hands—a simple task, a soft cloth to fiddle with, or see if she will sit in a rocking chair. Minimize noise and confusion by not having too many people around the house and keeping the TV and music volume low. However, a favorite TV show or soft music could be soothing. Finally, ask the doctor to review your mother's medications. Some over-the-counter and prescription drugs may make the situation worse, so a doctor's advice is critical. Sleeping pills should be used only as a last resort, as their effectiveness is short-term and they can add to confusion when waking.
For more information on understanding dementia behaviors, click here.
© 2009 Family Caregiver Alliance
Readers Corner
Alzheimer's Care with Dignity, Frank Fuerst (2007) Headline Books, www.dementiacaregiving.com, $24.95 (paperback). For seventeen years the author cared at home for his wife, June, who had early onset Alzheimer's disease. This book chronicles his experience as a caregiver, as he explores what worked and what did not. It includes practical solutions to challenges faced by caregivers, and presents ways of solving problems in behavior, communication, prescription drugs, emotions, mobility, personal care and safety. Its tailored advice offers a wealth of information and includes advice for situations that can arise when dealing with finances, doctors, dentists, lawyers and home care attendants. Available here from Amazon.com.
Caresharing: A Reciprocal Approach to Caregiving and Care Receiving in the Complexities of Aging, Illness or Disability, Marty Richards (2009) Skylight Paths Publishing, Woodstock, VT, $24.99 (hardcover). A refreshing approach to caregiving, based on the concepts of wholeness, reciprocity, and spirituality, Caresharing provides families with a guide to caregiving as a meaningful and fulfilling experience. Broken into small chapters and written in a conversational and informal tone, the book addresses many of the major issues families struggle with by offering useful insights and down-to-earth approaches, usually in the form of bulleted lists. The book includes a section on suggested reading. Available here from Amazon.
Diabetes Sourcebook, Fourth Edition, Karen Bellenir (2008) Omnigraphics, $93.00 (hardcover). A comprehensive sourcebook for the general reader, Diabetes Sourcebook covers the spectrum of diabetes-associated issues, from causes, symptoms and diagnosis, to treatment and lifestyle adjustments recommended for those living with the condition. Medical intervention, possible complications and related health conditions are covered in detail. This edition includes diabetes research and information on complementary and alternative therapies. The final section of the book lists resources for financial assistance, offers a directory of diabetes organizations, and advises on finding quality care in a changing healthcare system. Available here from Amazon.com.
Forgetting: When to Worry, What to Do, Joan Carson Breitung, RN, MSN (2008) Prometheus Books, New York, $19.98 (paperback). Taking a fresh approach, the author tackles her topic from the perspective that dementia is never a part of normal aging. This well researched and easy-to-read book covers many common concerns and offers a solid definition of reversible and irreversible dementias, a detailed overview of Alzheimer's disease and an in-depth dialog on the causes and impact of depression. Equally valuable, but not often addressed, is a comprehensive chapter on MCI (mild cognitive impairment); a discussion entitled "Falls: Accidents that Will Happen;" and "Advice and Consent," a clear, sensitive discussion on patient self-determination, palliative and end-of-life care. From prevention to practical advice about daily care, this book offers it all. Available here from Amazon.com.
Strengthen Your Mind: Activities for People with Early Memory Loss, and Strengthen Your Mind, Volume Two: Activities for People Concerned About Early Memory Loss, Kristin Einberger & Janelle Sellick (2007 and 2008) Health Professions Press, $28.95 and $32.95 (paperback). Appropriate books for an individual or group of individuals that you know well. These volumes offer a range of question-and-answer activities. Some rely on trivia, some on long term memory and education, and other activities rely on sensory perception. Some portions are useful for certain groups only while not appropriate for others, so readers may choose which sections to use. Also, some questions are quite difficult, which could be enjoyably challenging for some but could have negative consequences for individuals who cannot answer. The original Strengthen Your Mind is available here. Volume Two is available here from Amazon.com.
An Easy Way to Donate to FCA, at No Cost to You!
What if Family Caregiver Alliance earned a penny every time you searched the Internet? Or what if a percentage of every purchase you made online went to support FCA? Now it can!
GoodSearch.com donates half its advertising revenue, about a penny per search, to the charities its users designate. You can use this Yahoo-powered search engine just as you would any other, and watch those pennies add up!
GoodShop.com is also an online shopping mall which donates up to 37 percent of each purchase to your favorite cause! Stores including Target, Amazon, Gap, Best Buy, ebay, Macy's and Barnes & Noble have teamed up with GoodShop and every time you place an order, you'll be supporting FCA. Just go to the www.goodsearch.com and www.GoodShop.com sites and enter Family Caregiver Alliance as the charity you want to support. And, tell your friends and family!
National Focus
Legislation to Watch
Despite the bleak economic outlook, federal and state lawmakers have not shied away from introducing legislation to support family caregivers. At the federal level, many bills that were introduced in the past were reintroduced in this session of Congress.
Senator Herb Kohl (D-WI), Chairman of the Senate Special Committee on Aging, reintroduced the Retooling the Healthcare Workforce for an Aging America Act (S. 245). The bill was also introduced in the House (H.R. 468) by Representative Jan Schakowsky (D-IL). The bill aims to expand education and training opportunities in geriatrics and long-term care for licensed health professionals, direct care workers and family caregivers in order to better prepare the workforce to meet the needs of the growing population of older adults. Specifically, the bill permits state Medicaid programs to do an assessment of a family caregiver's needs and to provide referral to appropriate services when he or she is caring for a Medicaid beneficiary who qualifies for home and community-based services and who relies on the family caregiver for much of their care. Representative Nita Lowey (D-NY) reintroduced the Social Security Caregiver Credit Act (H.R. 769) which would allow unpaid family caregivers to claim Social Security benefits as if they had worked for a wage during each month they were engaged for at least 80 hours in providing care to a dependent relative, for up to five years of such service. Rep. John Salazar (D-CO) reintroduced the Heroes at Home Act (H.R. 667) which would establish a program to provide training for family members and certify them as "personal care attendants" for veterans with traumatic brain injury (TBI). Caregivers with such certification would be eligible for compensation. The companion bill was introduced in the last session of Congress by then-Senator Hillary Clinton. Rep. Steve Israel (D-NY) introduced the Elder Caregiver Support and Information Enhancement Act (H.R. 519) which would authorize $250 million in funding for the National Family Caregiver Support Program (NFCSP) for each of the Fiscal Years (FY) 2010, 2011, and 2012. Rep. Pete Stark (D-CA) reintroduced the Family Leave Insurance Act (H.R. 1723) which would provide up to 12 weeks of paid leave for workers who need time off to care for a seriously ill family member, including a spouse, child, parent, domestic partner, grandparent, grandchild and sibling, to care for a new child, or to recover from their own serious illness. Participating employees would receive between 45% and 100% of their weekly income.
At the state level:
Three bills introduced in California would help family caregivers balance their work responsibilities and their caregiving commitments. Assemblywoman Fiona Ma reintroduced her bill (A.B. 1000) to allow all workers in the state to accrue up to nine paid sick days for personal illness, to care for a sick family member or to recover from domestic violence or assault. Another bill (A.B. 849) would expand the rights of workers under the California Family Rights Act by providing job protection to those who take leave to care for a seriously ill sibling, grandparent, grandchild, adult child or parent-in-law. A third bill (A.B. 1001) contains similar expansion provisions under the Family Rights Act and also adds "familial status" to the list of prohibited bases for employment discrimination under the California Fair Employment and Housing Act. A bill (S.B.710) in the Connecticut Senate that would permit employees to take up to 26 weeks of unpaid leave to care for an immediate family member or next of kin who is a member of the military and is undergoing medical treatment or suffered a serious injury or illness. A bill (H.P. 664) in Maine would amend the Maine Human Rights Act to prohibit employment discrimination against someone based on their family caregiver status. The bill defines "family caregiver" as a person who cares for his or her child, parent, spouse, domestic partner or sibling. A Minnesota bill (S.F. 1842) was introduced to provide funding for nonprofit organizations to establish lifespan respite care programs for caregivers who live with their care recipient. Eligible organizations must be capable of operating on a statewide basis and have expertise in respite care issues. A bill (S.B. 966) in Oregon would create a Family Leave Benefits Insurance Program to provide partial pay to employees taking leave to care for a new child, a child with special needs or a family member with a serious health condition. Workers would be eligible for up to six weeks of paid leave at $300 per week.
To read a review of the trends in federal and state caregiving legislation from 2007 and 2008, read FCA's recent paper here.
To learn more about caregiving legislation introduced at the state and federal levels, please visit FCA's online database of legislation from 2004 to the present. Click here.
To keep up-to-date on caregiving issues, subscribe to Caregiving PolicyDigest from FCA's National Center on Caregiving. For your free subscription, click here
© 2009 Family Caregiver Alliance
Event Honors National Caregiving Legacy Awardees
"This award enables us to extend our outreach and services to family caregivers
and Alzheimer's individuals living in what is a very private world.
The award breakfast was an excellent opportunity to share our program
with those outside our Taos community and feel their support.
It was an amazing experience filled with wonderful people! Muchas gracias!"
—Kathleen Burg
FCA's Kathleen Kelly and the Gilbert Foundation's Marty Blank with award winners Judy Holstein, Netsy Firestein and
Kathleen Burg (clockwise from left).
Photos by Evie Christou
Family Caregiver Alliance and The Rosalinde and Arthur Gilbert Foundation honored the recipients of the 2008 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards at a reception held at the annual joint conference of the American Society on Aging and the National Council on Aging in March in Las Vegas.
The event marked the conclusion of the first year of the awards, which recognize excellence in Alzheimer's caregiver support in three categories: Creative Expression; Diverse/Multicultural Communities; and Policy & Advocacy. The awards program was introduced in the Spring of 2008 and attracted applications from organizations and programs throughout the US.
Three outstanding programs rose to the top of a highly competitive pool of applicants and were determined the first year's winners by a distinguished panel of judges with expertise in aging, family caregiving, public policy, and Alzheimer's disease. The award recipients are:
Culture Bus Inside and Out
CJE SeniorLife, Chicago
Program Representative: Judy Holstein, Director of Adult Day Services
Category: Creative Expression Apoyos Para Los Cuidadores
Chesed Project at Taos Jewish Center, Taos, NM
Program Representative: Kathleen Burg, Chesed Project Director
Category: Diverse/Multicultural Communities California Work and Family Coalition
Labor Project for Working Families, Berkeley, CA
Program Representative: Netsy Firestein, Executive Director
Category: Policy & Advocacy
The capacity crowd heard FCA Executive Director Kathy Kelly and Marty H. Blank Jr., COO and Co-Director of The Gilbert Foundation, speak about their organizations, give a brief history of the awards program and present the recipients with their certificates. Each organization was awarded $20,000 earlier in the year.
Application materials for the 2009 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiver Legacy Awards are available online only on the Family Caregiver Alliance website.
© 2009 Family Caregiver Alliance
Director's Corner
Lynn Feinberg to Take Position in DC
Lynn Feinberg (at left) with FCA Operations Manager Kris Coffey. Board member Burns Vick is at back.
Photo by Melania Jusuf
After remarkable tenure of more than 20 years with FCA, I'm sad to say Lynn Friss Feinberg, Deputy Director of FCA's National Center on Caregiving (NCC) is leaving the Bay Area to take a position with the National Partnership for Women & Families in Washington, DC. She will be the campaign director for a multi-year initiative to achieve high quality, coordinated care for older adults with chronic disease.
Lynn joined Family Caregiver Alliance when we were charged with designing and implementing California's statewide system of Caregiver Resource Centers in 1984. Writing the Operations Manual, training staff, designing data and reporting systems, and infusing the system with best practices, Lynn lead the way under the Statewide Resource Consulting contract with the Department of Mental Health. As this issue became more recognized at the national level, Lynn moved to make caregiving a viable policy charge with our 50-state survey, a Consensus Conference on Caregiver Assessment and invitational policy conferences for state legislators under the NCC. Lynn recently was chosen as a Heinz fellow and served a year on California Senator Barbara Boxer's staff in Washington. Of course, this brief description does not do justice to Lynn's accomplishments—FCA's success is intricately woven with Lynn's achievements and contributions over these many years.
Lynn will be greatly missed by the staff and Board here at FCA. We all wish her the best in her next position and we look forward to working with her in future to ensure that those facing chronic disabilities and their families are able to access the care and support they need.
Here's to continued success in your future venture, Lynn!
Kathleen Kelly
FCA Executive Director
Clearinghouse
Report on Employment Discrimination Against Family Caregivers
In December 2008, the Center for WorkLife Law and the Sloan Work and Family Research Network released a research brief called "Addressing Family Responsibilities Discrimination." The brief describes state policy efforts to address family responsibilities discrimination (FRD)—employment discrimination in which workers are fired, demoted, not promoted, denied employment benefits or harassed because of their caregiving responsibilities for a child, partner or older relative. The brief details proposed FRD legislation in California, Florida, Iowa, Michigan, New Jersey, New York and Pennsylvania. The brief also explores the growing problem of FRD, why this is a policy matter and how FRD negatively impacts both employees and their employers. To read the report, visit: http://www.worklifelaw.org/pubs/policybrieffrd.pdf.
Report on Impact of the Economic Crisis on Aging Services
The National Association of State Units on Aging (NASUA) released a report in December 2008 called "The Economic Crisis and Its Impact on State Aging Programs." The report reveals that in 2009 70% of states anticipate cuts in programs for older adults and adults with disabilities. At the same time, demand for services is rising. NASUA's research shows that nearly 85% of states are experiencing more requests for transportation and home-delivered meals, and 62% are experiencing more requests for home-heating assistance. To read the report, visit: http://www.nasua.org/documents/EconomicSurveyReport.pdf.
Report Shows Investment in HCBS Is Cost-Effective
A new report from the AARP Public Policy Institute reveals evidence indicating that expanding home and community-based services (HCBS) can be cost-effective in the long run when combined with efforts that reduce reliance on nursing home care. In addition, shifting spending away from institutional services and toward HCBS can allow states to serve more beneficiaries with available dollars. This report is especially relevant as states work hard to find ways to save money without cutting services and benefits. To read "Taking the Long View: Investing in Medicaid Home and Community-Based Services is Cost Effective," visit: http://www.aarp.org/research/assistance/medicaid/i26_hcbs.html.
National Alzheimer's Strategic Plan
On March 25, 2009, the Alzheimer's Study Group released its final report, "The National Alzheimer's Strategic Plan." Established by Congress in 2007, the Alzheimer's Study Group was tasked with creating a plan to address the growing crisis of Alzheimer's disease in the U.S. The Strategic Plan recommends supporting developmental science and basic research to develop a way to delay and prevent Alzheimer's disease, providing coverage of coordinated care for people with Alzheimer's disease, and establishing an Alzheimer's Solutions Project Office within the federal government. To learn more about the Study Group or to read the Strategic Plan, visit: http://www.alzstudygroup.org/.
Alzheimer's Disease Facts and Figures for 2009
At the same time that "The National Alzheimer's Strategic Plan" was released, the Alzheimer's Association published "Alzheimer's Disease Facts and Figures for 2009." This illuminating report provides U.S. data on Alzheimer's disease and other dementias, including prevalence, mortality, lifetime risk, caregiving information, and use and costs of care and services. The report reveals that, in 2008, 9.9. million informal caregivers provided 805 billion hours of care valued at $94 billion, to people with Alzheimer's disease and other dementias. To read the report, visit: http://www.alz.org/national/documents/report_alzfactsfigures2009.pdf.
AARP Launches Online Content for Caregivers
Gail Sheehy, author of the best-selling book Passages, has joined with AARP to launch an online community for caregivers. Sheehy has traveled around the country to record stories of families in different phases of the caregiving journey. Experts, including staff from Family Caregiver Alliance, advise on the best resources for caregivers. Sheehy is a major contributor to the new caregiving portal on AARP's website, which features interactive web casts, personal blogs and online chats. For more information, visit: http://www.aarp.org/family/caregiving/.
Conferences and Trainings
The National Association of Area Agencies on Aging (n4a) will host its annual Conference and Tradeshow July 19 – 22, 2009 in Minneapolis. Themed "Highlighting Innovations in Aging," sessions will showcase and facilitate the replication of the most innovative policies, programs and services that assist older adults to lead independent and productive lives. For more information or to register, visit: http://www.aarp.org/family/caregiving/.
© 2009 Family Caregiver Alliance
Research Registry
Loyola University Chicago is conducting a study describing the stress response of female family caregivers of stroke survivors within the first three to 12 months post-stroke. The study is being done via the mail and a gratuity of $25 is provided. Please call Dr. Karen Saban at (708) 216-1244 for more information.
For information and fees for listing your research study in Update and on the FCA website, contact Bonnie Lawrence at (800) 445-8106 or
[email protected] We encourage you to discuss participation in clinical trials and research studies with your personal physician. Endorsement of studies by Family Caregiver Alliance is neither expressed nor implied.
California and the Bay Area
Save the Date!
Alzheimer's/Dementia Summit in San Francisco
As San Francisco's population ages, how will we care for the dramatic increase in the number of people with Alzheimer's and other dementias?
Help shape public policy and create a blueprint for care in San Francisco and California!
Plan on attending the Alzheimer's/Dementia Summit at City Hall. Special workshops for family caregivers in the afternoon will cover a range of issues.
Wednesday, July 8, 2009
8:30 a.m. to 4:15 p.m.
San Francisco City Hall
Attend morning session only, afternoon only, or the entire day.
Welcome by Mayor Gavin Newsom.
Morning session: New Alzheimer's/Dementia Task Force report released; panel discussion.
Afternoon sessin: Workshops for family caregivers.
Simultaneous translation available in both morning and afternoon sessions in Cantonese and Spanish.
Click here to register or call (415) 434-3388 ext. 411
© 2009 Family Caregiver Alliance
Framework Offers Principles for Public Policies That Support
Family Caregivers
FCA's new issue brief, A Policy Framework to Support California's Family Caregivers, states that "Family caregiving must be viewed as a workable choice by both family caregivers and care receivers, not as an irrevocable duty." The authors, FCA Executive Director Kathleen Kelly and policy consultant Brenda Klutz, suggest that caregivers do not have unlimited physical, emotional and financial resources and it can't be assumed that families are able to provide care in every instance. The framework offers a set of principles and values to guide policy development and implementation.
California's Family Caregivers and Public Policy
Families have long assumed obligations to care for each other in times of illness and frailty and will always play a predominant role in providing care. Society places great value on supportive family relationships as a foundation upon which to build stable communities. This framework is intended to highlight the essential role played by family caregivers and to advocate for consideration of this role when crafting public policy.
Nearly eighty percent of all care to Californians 18 years of age or older is provided by family caregivers. Thirty-one percent of caregivers are also still responsible for raising children under the age of 18. Seventy-five percent of family caregivers are women. Caregivers average 51 years of age, usually at the peak of one's earning potential. Fully one-half of family caregivers are employed outside the home, often needing to make adjustments in the hours they work, find different jobs that will accommodate their caregiver responsibilities, or make other difficult workplace or career compromises. The economic value of informal caregiving in the state is estimated at 45 billion dollars.
Public policies that support family caregiving must acknowledge and respect the significant societal and economic value provided by family caregivers, and enable families to continue to provide care. Offering support to family caregivers can enable caregivers to continue to provide care, work as long as possible outside the home to maintain the family's financial security, postpone or avoid unnecessary institutionalization of the care receiver, and prevent caregivers themselves from becoming recipients of care.
However, public policy cannot automatically assume that family caregiving can or should be continued in every instance. Care receivers may choose not to receive care from family members or families may not always be available, in a position to or should not provide care. Families who provide care do not have unlimited physical, emotional or financial resources.
Most people prefer to receive care in home and community settings and be as independent as is possible. Support for family caregivers will help to ensure that the care provided is safe for both the person receiving care and the family caregiver.
Family caregiving must be viewed as a workable choice by both family caregivers and care receivers, not as an irrevocable duty. Policymakers must continually examine the extent to which policies support family caregiving and understand the impact of policies on family caregivers. Care must be taken so that policies do not inadvertently treat family caregivers as unconditional and limitless "resources," to the potential detriment of family caregiver or care receiver's well-being.
Principles for a Public Policy Framework to Support California Caregivers
Basic principles necessary for public policy to support California Family Caregivers are:
Principle 1: Public policy must formally acknowledge, value, and respect family caregivers as essential components of the community-based care system.
Principle 2: Public policy must recognize that many family caregivers need support.
Principle 3: Public policy must provide family caregivers with a voice and a choice in decisions that affect both them and the care receiver.
Principle 4: Public policy must ensure that supportive services are adequate, available, affordable, equitable, effective and accountable.
Click here to view the entire issue brief, A Policy Framework to Support California's Family Caregivers.
© 2009 Family Caregiver Alliance
Bay Area Bulletin Board
Veterans and their beneficiaries can learn about benefits and other programs they may be eligible for through the Department of Veterans Affairs Inquiry Routing and Information System. When you call this toll-free number, you can access general information about benefits through the automated system or you can connect to a benefits counselor to discuss your situation. For more information, visit their website or call (800) 827-1000.
Having trouble paying your PG&E bill? You may be able to get financial assistance. PG&E offers several different programs to help low– to middle–income households and people with disabilities pay their bills. To find out if you qualify or to learn about their different programs, visit the PG&E website or call (800) 743-5000.
If you are looking for a physician in Marin County, contact the Marin County Medical Society. This professional organization of physicians makes referrals to physicians based on specialty. They are also able to provide information about physicians or nurse practitioners who will make home visits to seniors. For more information, call (415) 924-3891 or email [email protected]
The Senior Peer Counseling Program in San Francisco provides emotional support to seniors either in their home or in a support group setting. Trained volunteers aged 55 and older help seniors who are having difficulty coping with life's challenges, which might include depression, caregiving, illness and loss. Services are voluntary and free of charge. For more information, please contact Judy Gustin, at (415) 386-6600. The Senior Peer Counseling Program is offered through the Family Service Agency of San Francisco.
For individuals who are 60 and older living in San Mateo County, the Senior Advocate Program provides free legal counseling. Areas of law include public benefits, long-term planning, and landlord/tenant rights. The Senior Advocate Program does not provide services for living trusts or real estate law. Interpreters are available in many languages. For more information, cal (650) 558-0915 or visit the website.
Kara provides emotional support for adults, teens, and children living in Santa Clara County and who are coping with serious illness or death. Services include counseling, seminars, support groups, crisis intervention and referral to other services. There is no charge for Kara's services, however, donations are accepted. For more information about the services Kara provides, please call (650) 321-5272. You can also visit their website.
© 2009 Family Caregiver Alliance
FCA's Weekend Camp for Caring
For lucky participants and their families, FCA's weekend camp offers a welcome change from the routine, and 48 hours of respite. The camp is open to those with Alzheimer's and other health conditions, and provides social activities, all meals and a safe place to stay while their caregivers enjoy some time off. Contact FCA at (800) 445-8106 for more information.
Camp participants and staff enjoy their time together as a camera crew from PBS catches the action for a special
broadcast later this year.
Photos by Melania Jusuf
© 2009 Family Caregiver Alliance
Support Groups
Grupo de Apoyo/Spanish-Speaking Caregiver Support Group
Sponsor: Family Caregiver Alliance
Location: San Francisco
Time: Segundo lunes de cada mes/Second Monday of the month 2:00 - 4:00 p.m.
Content: Grupo de apoyo en español para los que cuidan a un familiar mayor. Support group for Spanish-speaking caregivers who are caring for an elderly loved one.
Contact: Lois Escobar, (415) 434-3388
Online Caregiver Groups
Sponsor: Family Caregiver Alliance
Location: Your computer
Time: Available 24 hours a day
Content: Four free online support groups
- The Caregiver Online Group is for families, partners and other caregivers of adults with disorders such as Alzheimer's, stroke, brain injury and others.
- The LGBT Caring Community Online Support Group is for lesbian, gay, bisexual and transgender caregivers of adults with cognitive impairments and/or other chronic health problems.
- Link2Care Group is part of a secure website dedicated to clients of California's Caregiver Resource Centers (CRCs). For information about participating in this moderated listserv, call your local CRC or (800) 445-8106.
- The Huntington's Disease and Movement Disorders Online Group is for anyone—diagnosed individuals, families, friends and professionals—living with the day-to-day challenges of HD, Parkinson's or another movement disorder. The group is facilitated by a registered nurse with extensive personal and professional HD experience.
All of these groups offer participants supportive environments in which to ask questions and share their experiences, resources and ideas.
Contact: To register for any of the groups, visit www.caregiver.org and click on "groups." To join the Link2Care group, you must contact your local CRC to preregister.
RELAX and RENEW Caregiver Support Group
Sponsor: San Francisco Adult Day Services
Location: San Francisco
Time: Second Wednesday of the month, 4:30 - 6:00 p.m.
Content: A combination workout/support group for caregivers. The group begins with stretches and gentle exercises, and then takes some time for group members to share about their caregiving experiences. An ideal way to get support, improve your health and reduce stress.
Contact: Patty Clement, (415) 452-3500
LGBT Alzheimer's Caregiver Support Group
Sponsor: Alzheimer's Association, New Leaf Outreach to Elders
Location: San Francisco
Time: Third Saturday of each month, 10:00 - 11:30 a.m.
Content: Support group for people taking care of a partner, spouse, other family member or friend with Alzheimer's disease, other type of dementia. A safe place to discuss caregiver stress and issues, meet others who are in similar situations and learn and share information.
Contact: Karen Smillie, New Leaf Outreach to Elders, (415) 626-7000 ext. 458
Huntington's Disease Support Groups
Support groups in Bay Area locations for people with Huntington's disease, their families, partners, friends and other loved ones. Sponsored by the Huntington's Disease Society of America, Northern California Chapter.
Marin: Tiburon
Time: Third Thursday of the month, 7:30 - 9:00 p.m.
Contact: Andrea Zanko, (415) 476-9320
South Bay: Palo Alto
Time: Second Tuesday of the month, 7:00 - 8:30 p.m.
Contact: Lucille Towner, (650) 967-0679 or Andrea Kwan, [email protected]
Early Stage Alzheimer's Group
Sponsor: Alzheimer's Association of Northern California/Northern Nevada
Location: Mountain View
Time: Eight-week sessions held throughout the year
Content: Support group for people with early-stage Alzheimer's disease (or a related disorder) offers education and support to help people understand and cope with their illness. Separate, concurrent sessions for loved ones will address questions and concerns specific to early dementia. Pre-enrollment interview is required. Fee per session; scholarships are available.
Contact: Angel Duncan or Helen Done, (800) 272-3900.
© 2009 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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