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Fall 07/Winter 08 Vol. 24, No. 3 Welcome to the premier issue of Update Online, a publication of Family Caregiver Alliance www.caregiver.org (800) 445-8106 In This Issue Caregiver University National Focus California and the Bay Area Regular Features Research Registry Research studies and clinical trials for caregivers... Clearinghouse Great resources for caregivers and providers... Bulletin Board Programs and services in the San Francisco Bay Area... Reader's Corner Selected reading for caregivers and professionals... Subscribe Email Us Quick Links Family Caregiver Alliance FCA Fact Sheets & Publications Caregiving PolicyDigest California Caregiver Resource Centers California Caregiver e-Newsletter Link2Care   Bay Area Support Groups   Donate Credits Editor Bonnie Lawrence Production & Graphics Megan Krause Melania Jusuf Contributors Michelle Alcedo, Kris Coffey, Carly Coppola, Amy Friedrich-Karnik, Kathleen Kelly, Beth Logan, Laura Hautala, Megan Krause, Bonnie Lawrence, Sima Schoen, Lana Sheridan, Walt Yost Executive Director Kathleen A. Kelly Board of Directors Kathy Murphy, President Jennifer Arthur, First Vice President Kathryn Lee, Second Vice President Greg Haley, Treasurer Helen Sloss Luey, Secretary Claude Everhart Ping Hao William J. Lynch Jeffrey Moeller Margaret Wallhagen Sue Wong Caregiver University First Steps for New Caregivers Ready or not, you need to take stock of the people, services and information that will help you care for your loved one. The earlier you find support, the better. Read more...   20 Practical Tips for Finding the Best Residential Care for Your Relative It's a tough and troubling decision: Should you move your relative to a care home? These tips will help you focus your attention and your thoughts as you make your way through the process. Read more... Caregivers at Risk: It's Time to Recognize This Public Health Issue "The needs of caregivers must be acknowledged by the country's public health officials and addressed in state and local caregiver-directed programs." Read more... Telecaregiving Workshops Now Available Online Expert caregiving advice is only a few clicks away! Our popular TeleCaregiving Workshops are now archived on the FCA website. Read more...   National Focus Legislation to Watch Key State and Federal legislation affecting caregivers. Read more... "Family Caregiving: State of the Art, Future Trends" Proceedings From FCA's National Conference National experts offer ideas and findings that will profoundly affect family caregivers and those for whom they care. Read more... FCA's Lynn Friss Feinberg Selected as Senate Fellow in Aging Lynn is now serving her fellowship in the Washington, D.C. office of U.S. Senator Barbara Boxer (D-CA). Read more... Clearinghouse Wide-ranging resources for caregivers and providers. Read more... California and the Bay Area A Caregiver's Story Making the Paid Family Leave Program Work for You Like thousands of Californians faced with painful decisions trying to balance work with family, Walt Yost is grateful for the state's Paid Family Leave program, which enabled him to take regularly-scheduled time off from his job to help care for his aging parents. Read more...   Bulletin Board News you can use: caregiving resources in the San Francisco Bay Area... Read more... Alzheimer's Disease Research Centers (ARCCs) Help California Families Ten Alzheimer's Disease Research Centers at university medical centers are dedicated to improving the quality of life of those affected with Alzheimer's disease and their families. Read more...   © 2007 Family Caregiver Alliance. All Rights Reserved. No portion of this newsletter may be reproduced without the express permission of Family Caregiver Alliance.

Presented below are 20 Practical Tips for finding the best residential care for your relative. These tips will help you focus your attention and your thoughts as you make your way through the process.

1. Know your options. To begin your search, educate yourself on the various levels and cost of care. In general, your options include Retirement Communities/ Independent Living, which may offer communal meals and activities for more independent residents; Residential Care Facilities (RCFEs); and Skilled Nursing Facilities (SNFs).

   Residential Care Facilities include small six-bed Board and Care Homes as well as larger Assisted Living Facilities. The RCFEs are licensed by Community Care Licensing through the State Department of Social Services, and provide, for the most part, nonmedical assistance. Nonmedical assistance includes help with activities of daily living (bathing, dressing, eating.); and "instrumental" activities of daily living (preparing meals, taking medications, etc.). Some care facilities include special units for people with dementia. Persons who qualify for Skilled Nursing Facilities typically require 24-hour nursing supervision and are confined to a bed for some portion of the day.

2. Make Use of Resources. FCA's Fact Sheet on Residential Care Options is a beginning guide to understanding care options, type of care provided and cost. For additional information on levels of care, cost, or how to evaluate a facility call California Advocates for Nursing Home Reform, (800) 474-1116 or visit their website (www.canhr.org). CANHR also has a comprehensive, up to date, online guide to over 7,000 facilities in California, including nursing homes and residential care facilities.
   
   
3. Consider what is most important to you and your relative. For many families, being nearby is a major criterion in the decision making, so you can visit your loved one frequently and easily.

   Understanding the general atmosphere of a facility and services that are important to your relative is essential. For example, it might be important for your parent to bring his/her pet to the care facility. This is not an unusual request, and some facilities will accommodate it. Some people require a wide selection of daily activities to choose from, while others might not have this need. Narrow your search based on what is most important to you and your family member.

4. Use your informal resource system. First-hand information on residential care facilities and nursing homes is invaluable. Don't hesitate to ask friends or support group members if anyone can recommend a care home. Day care providers, hospital discharge planners, or community care nurses are also excellent referral resources.
   
   
5. Contact a Private Placement Service. A placement service can help you focus your search and recommend a few facilities that match your income and the needs of your relative. To locate placement services in your geographic area call Family Caregiver Alliance (800) 445-8106 or your CRC in California. Your local Area Agency on Aging or senior center may have information. There is no fee to you for a placement service, although they may collect a commission from the facility, and there is no obligation to move your loved one. Quality referral services are very familiar with the facilities that they list and are in contact with the families of the residents. This service provides you with another level of screening and facility accountability. Most placement services, however, only work with moderate to higher-cost facilities.
   
   
6. Visit a few care facilities before you are in a crisis situation. It's always best to be prepared. Knowing your care options before you are in a crisis situation is very helpful and might ease your fear about moving your loved one. You might also be pleasantly surprised at what you find!
   
   
7. Make an appointment with the administrator. Come prepared to your interview with lots of written questions. If you are interested in the facility, make a second, third and even fourth visit at different times of the day. You especially want to observe meal time, whether the food is appetizing and healthy, and how participants are accommodated. If you are not invited to visit at anytime, unannounced, you might want to rethink that particular facility. Most residences have an open-door policy for families and friends. For a comprehensive list of interview questions, call CANHR or visit their website. (See Tip 2 for contact information.)
   
   
8. Be prepared for a swell of emotions. Your first visit to a facility might bring up a strong emotional reaction. Be prepared to see residents with varying levels of impairment. You might want to bring a friend or another relative with you for support and/or to help you remember the questions you would like to ask.
   
   
9. Observe the general environment. Is there a cheerful, warm interaction between the staff and the residents? Does the administrator know the residents by name? Do you feel welcomed? How clean is the facility? Do the staff and administrator seem comfortable with each other?
   
   
10. Appearances aren't everything. Spend time speaking with the staff, other family members and residents. Ask what they like most about living or working at the facility and what they like least. Recognize that if your relative moves to this facility, these are the people with whom you will be developing important relationships.
    
    
11. Is the facility licensed? Every facility must have their license displayed. The license lets you know they are registered with the State Department of Social Services and meet state requirements. There should also be an Ombudsman Program poster displayed. Each licensed facility is assigned a person from the state?an ombudsman?to investigate and try to resolve complaints made by, or on behalf of, individual residents.
    
    
12. Does the facility have a dementia waiver or hospice waiver? Residential care facilities are not required by state law to have a dementia waiver. Facilities with a waiver, however, are required to train staff on care for individuals with dementia to safeguard against accidents and wandering. If your loved one has dementia, it might be very important to you to look for a facility that has a dementia waiver.
    
    More and more residential care facilities are now licensed to have hospice services come into the facility to care for a resident who is terminally ill. In this way, care is not disrupted and you and your relative do not have to adjust to a change in environment. This is a wonderful new development and benefits both the care receiver and the caregiver.
    
    
13. Cost. In addition to the average monthly cost for an RCFE (which can range from $1800 - $4,000+ a month), the family is responsible for incontinence and personal care products. There are also usually add-on costs, which might include help with bathing, dressing, eating or incontinence.

    You might want to ask how often the rates are increased; how much notice is given before an increase; and how it's determined when someone is to be advanced to the next level of care. Typically, there is a change in cost when the next level of care is needed. RCFEs are "private pay" only?which means they do not qualify for Medi-Cal coverage. Most SNFs, on the other hand, accept Medi-Cal for qualified individuals. Medicare only pays for a short-term nursing home stay for rehabilitation purposes. The average cost for a nursing home in California is approximately $4500 per month for a private room; some cost even more. Your family consultant can help with a referral to an elderlaw specialist to discuss planning Medi-Cal eligibility in case a nursing home is necessary in the future. (See FCA's Fact Sheet Legal Issues in Planning for Incapacity.)
    

14. Be up-front about your situation. If your mother sometimes refuses her medication or a shower, let the administrator know. This is also an opportunity for you to ask how the staff might handle these behaviors. Remember, your role is to try to make the transition for you and your family member as easy as possible. If the facility's philosophy of care does not agree with your philosophy, this is probably not the right facility for your family.
    
    
15. Staffing Patterns and Staff Retention. A good staff ratio during the day shift in an RCFE is one direct staff person to eight residents. This does not include the activity coordinator, program director or on-call nurse. Fewer staff are needed on evening and night shifts. In a small Board and Care Home, the required ratio is two staff to six residents. However, Board and Care Home staff are usually responsible for cooking and cleaning as well as resident care. To get a sense of the satisfaction level of the staff, you might want to ask how many employees have been with the facility for more than one year.
    
    
16. Is there a perfect situation? Personal care and attention to individual needs should be a major priority in choosing the care home for your relative. If you find something lacking at a facility (outside of personal care), it might be possible for you to supplement what is missing. For example, you could take your relative out to a beauty shop if there isn't one on-site, or volunteer to call bingo if you believe there are too few activities. Typically, more expensive facilities will have more amenities and special features.
    
    
17. Changing your care home. Sometimes caregivers discover that their first facility choice is not a good match for their relative. Now that the family knows what is most important to their relative, they can be more successful when choosing another site. Although we recommend you work with staff to help your relative adjust to their living situation, we also encourage you to trust your instincts. If you believe there is a better living situation for your loved one, make the move.
    
    
18. Helping your relative adjust. Although there is a brief social history of your relative taken during the intake process, you should supplement this information with your own "Personal Profile." Include information about the care receiver's occupation, place of birth etc., as well as information on the care receiver's parents and siblings. Don't forget to include what has made them unique in the family?their special attributes, hobbies and contributions. You might even choose to create a wall poster with pictures from your relative's past, with brief subtitles under each picture. Staff will then become familiar with your relative's history in a positive way. Knowing someone's past is the key to developing rapport and a trusting relationship with the staff. When trust is established, your parent is more likely to feel comfortable at his or her new home.

    Also provide staff with a written description of your relative's typical day. Write down your relative's daily schedule including sleep time, bathing schedule and preference for time of bath and meals. Also let staff know if your relative would prefer a male or female caregiver to provide personal care.
    

19. You are still the caregiver. Even after you move your loved one, you are still the caregiver. If the administrator and/or staff suggest you no longer need to be involved in care decisions, ask yourself if this is the environment you want. Remember, you might not be providing the hands-on care (although you should still have the option of doing this if it is important to you), but you will always be your relative's advocate and care manager. Your role shifts, but is still vital to the health and well being of your loved one.
    
    
20. Take Care of Yourself. Although everyone's experience is different, moving a relative to a care facility might be the most difficult decision you will have to make as a caregiver. When making the transition from home to a community setting, reach out to people who understand and will support you. Don't hesitate to call Family Caregiver Alliance to speak with your Family Consultant, join a support group, or contact a private counselor or clergy member. Try to rest, eat well, exercise.

Research suggests that the first months may be the most difficult, but once your relative is situated and you have developed a relationship with his or her caregivers, you will experience a long over-due sense of relief. Keep in mind that often the care receiver does very well with the move. After all, their social and physical needs are being accommodated 'round-the-clock. You have the opportunity now to enjoy spending time with your relative in a new way, free of the 24-7 demands of caregiving.

For additional information on moving your relative we recommend reading, Moving a Relative with Memory Loss: A Family Caregiver's Guide, 2nd edition, by Laurie White and Beth Spencer. To purchase this booklet contact Whisp Publications at (707) 525-9633, or order on-line at www.whisppub.com. The cost is $12.00.

© Family Caregiver Alliance

A Caregiver's Story
Making the Paid Family Leave Program
Work for You

by Walt Yost

Like thousands of Californians faced with painful decisions trying to balance work with family, I am grateful for the state's Paid Family Leave program. It has enabled me to take regularly-scheduled time from my job over the past two years to help care for my aging parents in the Bay Area. And it has reduced the stress and anxiety that I, and all working caregivers, grapple with.

That said, I'd like to offer some advice and my personal experience on how best to take advantage of a program that initially frustrated me with bureaucratic hurdles but eventually proved to be a godsend.

First, it's important to remember that Paid Family Leave is fully funded by working Californians. It's your dollars, deducted through SDI from your paycheck, that make this program possible. The bottom line: you are entitled to this benefit.

California was the first state in the nation to create a comprehensive Paid Family Leave law and since 2004 over 400,000 Californians have benefited from the program. The law provides workers with a maximum of six weeks of partial pay each year while taking time off from work to bond with a newborn baby, newly adopted or foster child, or to care for a seriously ill parent, child, spouse or registered domestic partner.

Since the program began, nearly 90 percent of Paid Family Leave claims have been for bonding with a new child?with the remainder for family caregiving. That's according to a February 2007 report by the state Senate Office of Research.

In my situation, several years ago I was doing a not-very-effective job of balancing work with caregiving. Shortly after my father was diagnosed with dementia, I began using vacation, holidays, weekends and personal time-off to travel from my home in Sacramento to my parents' residence in Menlo Park, CA. However, as their needs increased, the sporadic care I was providing just wasn't working out for them or me.

Initially I approached my company's human resources office for help. Like most people, I was aware of the federal Family and Medical Leave Act but had only a vague knowledge of California's Paid Family Leave program. The human resources representative I talked with went out of her way to help me. She, too, was caring for aging and ailing family members and was very sympathetic.

I then approached my direct supervisor at work with a plan I thought would be the least disruptive to my job. Instead of taking time off every week, I'd take two days of family leave every other week in conjunction with a weekend. That gave me a four-day window to visit my parents?enough time to be of real assistance to them.

My advice is to approach your boss with a carefully thought-out caregiving plan or schedule they'll appreciate not having to come up with a plan on their own.

My next step was contacting California's Employment Development Department, which oversees the Paid Family Leave Insurance Program. Phone numbers to contact program representatives are provided in seven languages as well as for the hearing-impaired. Although I had filled out the proper forms, my situation (taking intermittent paid leave) necessitated talking to a live person. The recorded message said that due to the popularity of the program it might be a wait before I could talk to someone. Be persistent and don't give up.

As a stressed-out caregiver (aren't we all?) I didn't have much patience with bureaucratic red tape. But eventually I hooked up with a very helpful employee who guided me through it all and have had no problems since.

Once it's determined that you are eligible for the program, you'll need to fill out forms for every week you receive benefits. You'll then receive benefit checks in the mail. The maximum weekly benefit, as of 2007, is $882.

Remember you can receive benefits during leave that is taken all at one time or on an intermittent basis: hourly, daily or weekly.

And don't forget, as I did the first year in the program, that the compensation you receive is subject to federal income tax; it's not taken out of the checks mailed to you.

Now that I'm a veteran of the process I encourage other caregivers to avail themselves of this unique benefit. It's important to get the word out. The Senate Office of Research report concludes a significant need to provide the public with more information about the program persists.

While I'm fortunate to be in a situation where I can afford to participate in the program, the report suggests that the partial-wage replacement benefit may not provide enough financial assistance to many low-wage workers who simply can't afford the pay cut.

In addition, the report notes that a large number of rejected care claims are filed by people who need to care for siblings and grandparents. To address that need, State Senator Sheila Kuehl (D-Santa Monica) expanded the list of eligible family members a worker can care for, but that bill was vetoed by the Governor.

For more information on California's Paid Family Leave Insurance Program visit their website or call (877) 238-4373.

© Family Caregiver Alliance

Caregivers at Risk: It's Time to Recognize This Public Health Issue

In a February of 2007 Journal of Public Health article titled, "Framing the Public Health of Caregiving," authors Ronda Talley and John E. Crews contend that "surprisingly little attention has been focused on framing caregiving from a public health standpoint. They argue?and we concur?that "Caregiving is an emerging public health concern that will personally affect virtually every individual. The needs of caregivers must be acknowledged by the country?s public health officials and addressed in state and local caregiver-directed programs."

We would add that in response to this public health concern, state and local policy makers must also establish caregiver support as a priority issue in legislative arenas. At the conclusion of this article, we offer a list of policy implications and recommendations for consideration.

The Burden of Caregiving
Although family members commonly undertake care for an ill or elderly loved one willingly and find it to be a great source of personal satisfaction, caregivers need support services. A large and growing body of evidence confirms that providing care for a chronically ill person can have harmful physical, mental and emotional consequences for the caregiver.

Recent medical advances, shorter hospital stays, limited discharge planning, a shortage of homecare workers, and the expansion of home care technology have increased the caregiving responsibilities of families. Family caregivers are being asked to shoulder greater burdens for longer periods of time.

In addition to more complex care, conflicting demands of jobs and family, increasing economic pressure, and the physical and emotional demands of long-term caregiving can result in major health impacts on caregivers.

National estimates show that 44 million Americans over the age of 18 provide support to older people and adults with disabilities who live in the community. California has the highest number of family and informal caregivers of any state in the nation: an estimated four million Californians provide care for adult family members and friends. Caregivers in California provide nearly four billion unpaid hours of care at an estimated value of $45 billion (AARP Public Policy Institute).

Most family caregivers are women, and half are employed. Most are over 50 years of age. They provide care for many years: among California Caregiver Resource Center clients, the average duration is 3.8 years, with the range from less than a year to more than 60 years.

The value of this unpaid care is stunning, but it exacts a high, often hidden, cost. The impacts on the health of family caregivers?even those initially in good health?can be enormous.

Key findings
Informal caregivers are at risk for many different physical and mental health challenges. They:

• Suffer from high levels of stress and frustration. Show higher levels of depression than the general population (nearly half of California Caregiver Resource Center clients show signs of depression).
• Sometimes exhibit harmful behaviors, from increased use of alcohol or other substances to higher than normal levels of hostility.
• Are in worse physical health than noncaregivers. They have more chronic conditions such as heart disease, high blood pressure, diabetes and arthritis than their noncaregiving peers. They may also suffer from poorer immune function and from exhaustion.
• Neglect their own care (have lower levels of self care and preventive health behaviors than others).
• Are more likely to lack health insurance coverage due to time out of the workforce.
• Have higher mortality rates than noncaregivers of the same age.

Policy implications

• Families, not institutions, currently provide nearly 80% of long-term care in this country.
• Personal health problems can take an informal caregiver out of the voluntary care workforce and lead to an escalation of costs: when a family member is unable to provide care, increased formal (paid) care is necessary, whether in the community or an institutional setting.
• Recognizing physical and psychological symptoms in caregivers should be a public health priority.
• Improving access to appropriate mental health services and medical care is essential for at-risk spouses, sons, daughters and others who provide care to a chronically ill loved one.

Policy recommendations
We must:

• Foster the development and delivery of caregiver assessment protocols across all care settings (i.e., for use in health care facilities, home care situations and community-based agencies) in order to develop effective support plans.
• Require assessment of caregiver needs as well as patient needs at the time of hospital discharge; provide appropriate caregiver training to ensure a safe transition from hospital to home.
• Encourage primary care interventions to address caregiver health.
• Advocate for continued health insurance benefits for caregivers forced to leave employment or during leaves of absence resulting from caregiving duties.Provide financial support to alleviate the economic stress of ongoing care.
• Provide education and support programs for caregivers.
• Increase funding for respite to reduce caregiver burden.
• Advocate for interagency coordination to provide less fragmented support for family caregivers in order to delay or avoid out-of-home placement.
• Support state initiatives to assist caregivers with tax relief and increased public awareness about existing policies and programs benefiting caregivers, such as Paid Family Leave.

Strengthening support for caregiving families is both cost-effective and compassionate public policy. We hope to spur the dialogue about this important health issue, and we encourage you to contact your legislators to take needed action on this public health crisis.

Kathleen Kelly, MPH
Executive Director

Excerpted from FCA's California Issue Paper, Caregivers at Risk. If you'd like to receive future FCA Issue Papers by e-mail, please send us a message at info@caregiver.org.

© Family Caregiver Alliance

First Steps for New Caregivers

When you're starting out as a family caregiver, it's hard to know where to begin. Perhaps you've only recently realized that a loved one needs assistance, and is no longer as self-sufficient as he or she once was. Or perhaps there has been a sudden change in a loved one's health.

Now it's time to take action, and take stock of the people, services and information that will help you care for your loved one. The earlier you find support, the better.

Step 1
Start with a diagnosis. If your loved one is forgetful at times or has gone through a noticeable personality change, take him or her to a neurologist or diagnostic clinic. A thorough evaluation will rule out any reversible causes of dementia symptoms, such as depression, nutritional deficiencies, reactions to medication or infection. An early diagnosis of Alzheimer's disease, or another disease that causes cognitive impairment, has many benefits. First, treatment for Alzheimer's disease is most effective in the earlier stages and can buy more independence for your loved one. Second, knowing your loved one's diagnosis can help you plan ahead realistically. Learn as much as you can about your family member's condition. This information will confirm that you are not imagining things or exaggerating your loved one's behavior. Especially when you're dealing with dementia'learning about the diagnosis will help you keep in mind that it's the disease that is causing your loved one to gradually lose control over his or her behavior. Many books, videos and classes are available to inform you about what you can expect as your loved one's disease progresses.

Step 2
Talk with your loved one about his or her finances and health care wishes. If your relative is able to complete a Durable Power of Attorney for finances and health care, assist her or him in meeting with an elderlaw specialist to draw up these documents. This planning can help relieve your immediate anxiety and make you better prepared for the future. It can also start important discussions with your family members. If your loved one doesn't have the capacity to execute these documents, you will need further legal advice to learn about your options.

Step 3
At this stage, consider inviting family and close friends to come together and discuss your loved one's care. If possible, your loved one should be included in the meeting. List the tasks that are needed so they can be more easily divided up. Let everyone discuss their concerns, as well as how much and what kind of help each person can offer. As the primary caregiver, it's best for you to focus on accepting what assistance your friends and family are offering, even if it's not exactly what you had in mind. For more information see the FCA Fact Sheet called Holding a Family Meeting.

Step 4
Take advantage of community resources such as Meals on Wheels and adult day care programs. These resources are available so that you don't have to do everything yourself'and to give you a break. You can also see if there are caregiver classes and workshops offered in your community by calling FCA or your local Caregiver Resource Center or Area Agency on Aging. These education programs will help you feel more confident and make the time you spend caregiving easier for both you and your loved one.

Step 5
After all of this planning, don't forget what's most important: finding support for yourself. Caregivers often feel isolated as they take on more responsibility, and as their social lives move into the background. A support group is a good place to meet other family caregivers who have really "been there". You can attend support groups in your community, as well as through the Internet. Call FCA at (800) 445-8106 to learn about support groups, classes and other services for caregivers in your area, or visit www.caregiver.org.

© Family Caregiver Alliance

Alzheimer's Disease Research Centers (ARCCs) Help California Families

The state of California has established ten Alzheimer's Disease Research Centers at university medical centers. They are dedicated to improving the quality of life of those affected with Alzheimer's disease and their families. The Centers provide:

• comprehensive assessment of individuals with memory problems, typically including medical, neurological, psychological and psychosocial evaluations; in-home assessment of functional abilities and safety concerns;
• family conference and treatment planning following the evaluation;
• information and referrals to community health and social services;
• appropriate follow-up;
• support groups for caregivers;
• training and education for professionals and lay audiences;
• medical, pharmacological, social and behavioral research.

The services are provided by multi-disciplinary teams which may include neurologists, psychiatrists, physician assistants, psychologists, nurse specialists, neuropsychologists and social workers. Patients continue to see their private physician for primary care.

Any individual with symptoms of memory loss, disorientation and confusion may contact one of the Centers for an evaluation. Patients may be self-referred or referred by a family member, private physician or community agency.

Most of the costs of the services and diagnostic tests are covered by insurance. Medicare, Medi-Cal and supplemental or private insurance are accepted. Unless prior arrangements for financial assistance are made with the Center, patients or their families are responsible for fees not covered by insurance.

To learn more, go to the Alzheimer's Research Centers website or call your local Caregiver Resource Center.

© Family Caregiver Alliance

Caregivers Relax, Renew at Special Retreat

	Kitty McMahon and Margo Wecksler enjoy origami at FCA's Fall Retreat. The two-day event offers caregivers art projects, massages, exercise, camaraderie and a welcome chance to relax.
There's always space and time to get away from it all at the lovely retreat setting. Participants may choose to do as little or as much as they like.
Photos by Megan Krause

© Family Caregiver Alliance

Research Registry

Do you have a family member or friend with multiple sclerosis? Want to improve your ability to provide support and manage the challenges of this disease? A research study at the University of Illinois at Chicago is testing an educational program especially for you. For information call (312) 355-0252. 

The UCSF Memory and Aging Center is currently seeking individuals with Alzheimer?s disease to participate in observational studies and clinical trials, many of which investigate novel treatments. Participants must be willing to come to UCSF for study visits. Treatment and examinations are free. For more information, please call (415) 476-0671. 

The San Francisco Clinical Research Center is seeking volunteers for studies of new treatments for all stages of Alzheimer?s. We also conduct studies for Parkinson?s disease, diabetic neuropathy, insomnia, and migraine headache treatments. Participants will be compensated for time and travel expenses. For more information, please call (415) 673-4600. 

An educator at SUNY-Buffalo is seeking participants for a national study of caregiver stress and the way personal strengths affect wellness in persons caring for someone with a chronic illness. Caregivers can help with the research by taking an online survey. It will take approximately 1.5 hours to complete. E-mail glee4@buffalo.edu or visit the survey website.  

Reflect-1 research program at Stanford University is using an investigational drug that may help people with Alzheimer?s disease retain memory and quality of life longer. Participants must be 50-90 years of age and diagnosed with mild to moderate Alzheimer?s, and currently not taking medication for Alzheimer?s disease. For more information please call Bevin Powers at (650) 723-7845. 

The University of Kansas School of Nursing is currently studying how caregivers take care of their own health. Studies are open to caregivers living with and caring for their spouse/partner after a first stoke or those diagnosed with Alzheimer?s disease or dementia. For more information, please call toll free: (866) 662-2111. 

The UCLA Geriatric Psychiatry Program is conducting a 3-month clinical research study for the treatment of stressed and depressed caregivers of dementia patients. Participants will have a 50% chance of being given the study drug escitalopram (Lexapro) or placebo (an inactive substance). A complete psychiatric evaluation will be provided. Subjects will be paid for participation. Call (310) 794-4619 for more information or to see if you qualify.

For information and fees for listing your research study in Update and on the FCA website, contact Bonnie Lawrence at (800) 445-8106 or info@caregiver.org. 

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. 

Reader's Corner

Alzheimer's from the Inside Out, Richard Taylor (2007) Health Professions Press, Inc., Baltimore, MD, www.healthpropress.com. $18.95. Richard Taylor was a university professor when he was diagnosed with early-onset Alzheimer's disease at age 58. This is an engrossing collection of essays written during the five years after his diagnosis. The often philosophical, whimsical, humorous and sometimes angry words reflect the struggles, fear and frustration as the author tries to understand the changes in his brain and in his relationships. Taylor clearly articulates his thoughts and concerns surrounding his identity, the erosion of his abilities, self-esteem and dignity, and the increasing disconnect between his own reality and the reality of others. His essays advocate for dignified treatment of Alzheimer's patients as persons and as adults. Buy from Amazon.com

The Caregiver Companion: A User-Friendly Guide to Providing At-Home Care, Janet Morris and Kim Williams (2007) Bet Tzedek Legal Services, Los Angeles, CA. www.bettzedek.org. $10.00. In a clear and easy-to-use format, this book focuses particularly on how to find and pay for home care services, organizing and improving the quality of home care, end-of-life decision-making, and legal and financial issues. Elder abuse and neglect, resolving family disputes or issues with home care providers, and laws and policies that can help caregivers are also covered. Key issues are illustrated by case studies. Download (.pdf)

Lessons Learned: Stroke Recovery From a Caregiver's Perspective, Berenice Kleiman (2007) Cleveland Clinic Press, www.clevelandclinicpress.org. $9.95. Caught unprepared when her husband suffered a massive stroke, Kleiman shares a great deal of practical advice and insight in this book. The author is a strong advocate for preparedness and for maximizing the outcome of stroke for victims of this life-changing event, so although her experience was very difficult, her ultimate message is positive and hopeful. Included: advice on ensuring the best care, navigating the medical and financial maze, direct care issues like diet, toileting and travel, and emotional issues. A glossary, list of internet resources, suggested readings and index are included. Buy from Amazon.com

Lessons on Aging from Three Nations, Volume II: The Art of Caring for Older Adults, Carmel, S; Morse, C; and Torres-Gil, F.M. (Editors) (2007) Baywood Publishing Company, Inc., www.baywood.com. $52.00. This book examines three countries?Israel, Australia, and the United States?and focuses on three central topics in regard to the aging population: caregiving, family care and the end of life. Despite differences in many areas (geography, political systems, history, culture) all are now dealing with issues and questions such as: What is the interface between family responsibility and state responsibility in caring for the elderly? What are the new demands on education and training for the care of older adults? What are the options for consumer-directed services in the home and the community? By dissecting the diverse responses of these three countries, the authors and editors of this book provide the reader with great insight on global aging and related services and policies. Buy from Amazon.com

Moving Mom & Dad! Donna Quinn Robbins and Sarah Morse (2003) Barklay Ross Books, Washington, DC, $16.95. Donna Quinn Robbins is founder and owner of a company serving seniors in transition. The authors have researched the many housing options available to seniors, from manufactured mobile homes to the wide variety of adult and retirement communities. They have visited hundreds of retirement communities, and the book focuses in part on what they found, the pros and cons, questions to ask, and potential pitfalls to avoid in selecting the right option for yourself or your loved one. Case studies and anecdotes illustrate points made. The book also focuses on alleviating the stress and anxiety that many seniors and their families experience when dealing with such a major life change. Buy from Amazon.com

Caregiving from the Heart: Tales of Inspiration, Ricki Intner and Roberta Cole (2006) Elders Academy Press, San Francisco, CA, www.eldersacademypress.org. $19.95. This lovely book is a collection of over 90 brief anecdotes drawn from the real lives of caregivers and care recipients. These true stories are not informational, but offer brief and resonant glimpses into lives of real people trying to cope. Diverse as the people who have lived them, the authors view these stories as models that show there is no one right way to give care, and that our strength is in our bonds with others. The stories are divided into 5 groups defined by role: role reversal, friends and family members, couples, long distance caregiving, and care recipients. The book ends, and each section begins, with a brief and thoughtful commentary by the authors. This volume will be sure to provide comfort and reassurance for caregivers, for whom guilt and uncertainty go with the territory. Buy from Amazon.com

Legislation to Watch

Congress spent much of recent months working on appropriations legislation, or determining funding for all federal programs, including the Lifespan Respite Care Act?this bill became law in December 2006. While the new law included $40 million for Fiscal Year (FY) 2008 to create new Lifespan Respite programs at the state and local levels for family caregivers, the FY 2008 funding bills which emerged from the Senate and House Appropriations Committees failed to honor that obligation and contained no money for this respite program.

Fortunately, Representatives Michael Ferguson (R-NJ) and Jim Langevin (D-RI)?original sponsors of the Lifespan Respite Care Act won approval from the full House for an amendment to provide $10 million for Lifespan Respite in FY 2008. At press time, it was unknown whether the Senate would accept the House amendment.

A number of bills have been introduced to support wounded soldiers?and the family members who care for them?returning from Iraq and Afghanistan. Senator Christopher Dodd introduced the Support for Injured Servicemembers Act (S. 1894) to extend the Family and Medical Leave Act (FMLA) to allow workers to take up to 26 weeks of unpaid, job-protected leave compared to the current allowance of 12 weeks to care for their family members who have been seriously injured in combat.

Congress is also considering bills such as Senator Hillary Rodham Clinton's Heroes at Home Act (S. 1065) and the Dignified Treatment of Wounded Warriors Act (S. 1606/ H.R. 1538), introduced by Senator Carl Levin (D-MI) and Representative Ike Skelton (D-MO), both of which would provide training, education and outreach to those caring for family members in the Armed Forces with traumatic brain injury (TBI) or post-traumatic stress disorder (PTSD).

Finally, Senators Amy Klobuchar (D-MN) and Barbara Mikulski (D-MD) have introduced a bill (S. 2267) which would establish a National Resource Center on Family Caregiving; increase funding for the National Family Caregiver Support Program; and provide a tax credit to taxpayers who incur caregiving expenses for their parents or grandparents.

California Legislative Action
Three caregiving bills in California passed the Legislature but were vetoed by the Governor. One bill, (S.B. 727), would have made Paid Family Leave accessible to more caregivers by including workers who care for a seriously ill grandparent, grandchild, parent-in-law, or sibling. Another bill (A.B. 537) would have provided job protection to workers who take time off to care for an ill sibling, adult child, grandparent, grandchild, or parent-in-law.

The third bill (S.B. 836) would have protected employees with family care responsibilities outside of work, including parenting duties or caring for an elderly parent, from discrimination by adding "familial status" to the list of prohibited bases for employment discrimination. In his veto messages, the Governor stated that these bills would expand and complicate California's employment laws, which are already confusing enough and give the perception that the state is "not friendly to business."

To learn more about legislation introduced at the state and federal levels, see FCA's online database of current legislation, and bills related to family caregiving introduced between 2004 and 2006. Archived bills can be searched by state or by the policy strategy used to support family caregivers, such as tax incentives, Medicaid policies, or respite assistance. .

To keep up-to-date on caregiving issues, subscribe to Caregiving PolicyDigest from FCA's National Center on Caregiving.

© Family Caregiver Alliance

Clearinghouse 

AARP Reports on Economic Value of Caregiving - The AARP Public Policy Institute released two reports with new state-by-state data on caregiving prevalence and its economic value. The papers, called "Valuing the Invaluable" by Mary Jo Gibson and Ari Houser, report that there are between 30 and 38 million family or other informal caregivers in the U.S., based on a compilation of different studies, and that this care was valued at about $350 billion in 2006. That economic value is more than the total expenditure for Medicare in 2005 ($342 billion) or the total spending for Medicaid, including federal and state contributions, in 2005 ($300 billion). At the state level, the economic value of caregiving ranges from 1.4 to 10 times Medicaid spending for long-term care (LTC).

National Center on Senior Transportation Consumer Website - The National Center on Senior Transportation (NCST) launched a new website that offers extensive transportation options and resources for older adults living in the community. The website provides the aging and human service community, transit providers, older adults and family caregivers with information and resources, including announcements, facts and tips, publications, special events and technical assistance. 

EPA Fact Sheets for Older Adults and their Caregivers - The Environmental Protection Agency (EPA) has a series of fact sheets for older adults and their caregivers which address environmental health hazards they should be aware of. The newest in the series, "Age Healthier Breathe Easier," discusses environmental hazards that can trigger chronic obstructive pulmonary disease (COPD), which includes chronic bronchitis and emphysema. The other fact sheets discuss the risks of excessive heat events, waterborne contaminants and environmental hazards that can contribute to heart disease and stroke.

AoA Gateway - The U.S. Administration on Aging (AoA) has created an online AoA Gateway that includes information about new provisions of the Older Americans Act (OAA), created by amendments to the Act in 2006. The Gateway includes a summary of new provisions in the Act, the statutory text for each new provision, frequently asked questions, and links to technical assistance resources.

Study on Link Between Caregiver Stress and Nursing Home Entry - A study for the U.S. Department of Health and Human Services, "Does High Caregiver Stress Lead to Nursing Home Entry?" by Brenda Spillman and Sharon Long of the Urban Institute, examined "how informal care, paid formal care, and stress or burden experienced by caregivers relates to nursing home placement." The study found that the more stress a family caregiver experienced, often caused by caregiving-related physical strain, financial hardship and recipient behavior problems, the more likely it was that a care recipient would end up going to a nursing home. Accordingly, the analysis provides support for initiatives to reduce caregiver stress as a strategy to avoid or defer nursing home entry and to underpin current efforts to return nursing home residents to community-based care.

"A Comparison of Working Versus Nonworking Family Caregivers of Stroke Survivors" - An article published in the August 2007 issue of the Journal of Neuroscience Nursing (Volume 39, Number 4) compared characteristics of working and nonworking caregivers, including physical health, depression, fatigue, family functioning and family conflict, and examined how caregiving affects employment. The article, "A Comparison of Working Versus Nonworking Family Caregivers of Stroke Survivors" by Jean Ko, Dawn Aycock and Patricia Clark, revealed that more than one in three (36%) caregivers reduced their work hours, resigned or retired from their jobs to care for a family member who had suffered from a stroke three to nine months prior. White caregivers were less likely than minority caregivers to be employed, while caregivers who were employed full-time tended to be younger and in better physical health, but at higher risk for depressive symptoms, than nonworking caregivers.

Audio Podcasts about Care Coordination and Transitions - As part of its Healthcare 411 series, the Agency for Healthcare Research and Quality (AHRQ) at the U.S. Department of Health and Human Services produced two audio podcasts, one for consumers and one for providers, on quality issues during health care transitions. Both podcasts are interviews with AHRQ Director Carolyn M. Clancy, M.D., discussing patient transitions in care from one setting or clinician to another. The "Consumer Insider" podcast is 10 minutes and provides tips for patients and their families, and the "Provider Insider" podcast is 14 minutes and gives providers some ways to improve the problems with handoffs, including sending care reports to the patient's primary care provider and using non-medical terms with patients.

Conferences and Trainings

International Conference on Aging, Disability and Independence (ICADI)
February 20 - 23, 2008
St. Petersburg, Florida

National Council on Aging (NCOA) and American Society on Aging (ASA) Aging in America Conference
March 27 - 30, 2008
Washington, DC

Bulletin Board

Legal Assistance for Seniors (LAS) serves Alameda County Senior Citizens who are 60 years of age or older. LAS provides free legal advice and representation on cases regarding SSI, Social Security, General Assistance, CAPI, Medi-Cal and Medicare, housing, elder abuse, guardianship, advance health care directives, citizenship, pensions, veteran?s issues and consumer issues. Seven attorneys and five legal advocates are on site at LAS to speak with individuals over the phone, at the office, or during a home visit for frail seniors. LAS is able to serve seniors in multiple languages. Call (510) 832-3040 or drop by the office at 464 Seventh Street in Oakland.

The Institute on Aging (IOA), located in San Francisco (and also serving Marin and the Peninsula) has a free information and advice line for anyone seeking senior services in the Bay Area. Information specialists assist callers with questions regarding health care, housing, social services, financial aid, Alzheimer's services, crisis assistance and more. The IOA offers advice on where to turn for help, what services are available, costs and alternatives. The IOA also offers several fee-for-service programs to help seniors live independently at home. Programs include a geriatric assessment service, adult day care and home care. Call (415) 750-4111 or (877) 750-4111 (toll free).

Seniors residing in the coastal communities of San Mateo County can join several free programs and services at Senior Coastsiders. The center offers free short-term case management with an on-site social worker, counseling, Meals-on-Wheels, daily lunches, friendly visitors and minor home repairs. Transportation to the center is available. Donations from program participants are welcome. Seniors can contact the center at (650) 726-9056.

Sunnyvale Community Services provides emergency assistance for temporary financial crises. Low-income families and seniors over the age of 60 who live in Sunnyvale qualify for this service. A low-income senior will have an annual income of $18,889 or less for a one-person household. Financial assistance can be provided for rent and utilities to prevent eviction or shut off. Emergency food can also be provided once a month. Call (408)738-4321 to learn more. You will be asked to provide proof that you reside in Sunnyvale and are low-income. Assistance cannot be provided on an ongoing basis.

Residents of Marin County who are homebound and cannot access a library can use the Library Beyond Walls. Patrons receive monthly in-home visits and select from an assortment of library materials?large-print books, tapes and CDs?which can be checked out for up to six weeks. To request this service contact Victoria Gonzalez at (415)499-7451 or download the card application . This service is for all of Marin County, except library patrons living within incorporated areas such as Mill Valley and San Rafael (these cities have libraries that provide a similar service). If you would like to volunteer, contact Ms. Gonzalez. Volunteers must have reliable transportation and be available to make monthly visits for a year.

People with disabilities living in Contra Costa County can receive free services from the Hawkins Center of Law and Services for the Disabled. Information regarding Social Security Disability (SSDI), Supplemental Security Income (SSI) and other benefits is available to people with life-long or acquired physical and mental disabilities. Information is also available for people receiving SSI or SSDI who would like to return to work or have concerns about overpayments. The center also has an HIV Legal Services Project which offers free legal assistance to residents living with HIV. Representation on Social Security Disability claims is available for a fee. Call (510) 232-6611.

Support Groups
Find new friends, practical information and emotional support in these groups for caregivers.

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 espa?ol 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

RELAX and RENEW Caregiver Support Group

Sponsor: Family Caregiver Alliance and San Francisco Adult Day Support
Location: San Francisco
Time: First 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 talk and share their caregiving experiences. An ideal way to get support, improve your health and reduce stress.
Contact: Lois Escobar, (415) 434-3388

Online Caregiver Support Groups

Sponsor:  Family Caregiver Alliance
Location: Your computer
Time:  Available 24-hours a day
Content:  Four free online support groups. l groups offer participants supportive environments n which to ask questions and share experiences, resources and ideas.
Contact:  To register for any of these groups visit Groups page on www.caregiver.org

LGBT Alzheimer's Caregiver Support Group

Sponsor:  Family Caregiver Alliance
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:  Steven Dick, (415) 434-3388

NAMI of Santa Clara Support Groups

Sponsor:  NAMI
Location: Various locations
Time:  Second Tuesday of the month, 7:30 p.m. (General Meeting); Others vary.
Content:  Support groups for families and friends of people with mental illness. Monthly general meeting is open to the public. Support groups are also available in Spanish and Chinese. Hay grupos en espanol para la communidad Latina.
Contact:  NAMI Office, (408) 583-0001

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 FCA and the Huntington's Disease Society of America, Northern California Chapter.

Location:  East Bay/Oakland (NEW)
Time: Fourth Thursday of every month from 7:30 - 9:00 p.m.
Contact: Bill Jones, (510) 684-5933

Location:  Marin/Tiburon
Time: Third Thursday of the month, 7:30 ? 9:00 p.m.
Contact: Andrea Zanko, (415) 476-9320

Location: South Bay/Palo Alto
Time: Second Tuesday of the month, 7:00 - 8:30 p.m.
Contact: Andrea Kwan, (650) 725-6571, andreak (at) stanford dot edu or Lucille Towner, (650) 967-0679

Acquired Brain Injury Survivors Group

Sponsor:  Marin Center for Independent Living
Location: San Rafael
Time:  Every Tuesday from 5:30 - 7:00 p.m.
Content:  A support group for survivors of Acquired Brain Injury provides information, emotional support, and opportunity to practice social skills; facilitated by a neuropsychologist. Please call before attending.
Contact:  Larry Bencich, (415) 453-4069

Early Stage Alzheimer's Support Group (NEW)

Sponsor:  Alzheimer's Association
Location: San Francisco
Time:  Call for days and times of groups
Content:  Early stage group for individuals with a diagnosis of Alzheimer's or a related disorder, who are aware of the diagnosis and comfortable discussing its impact on their lives in a group setting. Pre-group interview required.
Contact:  Judy Filippoff, (800) 272-3900

Early and Mid-Adulthood Partner Loss Group

Sponsor:  Sutter VNA & Hospice
Location: San Francisco
Time:  Tuesday evenings
Content:  Grief support group for adults between the ages of 18 and 60 whose partner or spouse has died. Please preregister.
Contact:  Gaylene Newquist, (415) 600-7511 or Aimee Tomczack, (415) 600-7677

General Caregiver Support Group

Location: Pacifica
Time:  Every other Saturday from 10:30 a.m. - 12:00 noon
Content:  Ongoing caregiver support group for individuals who are taking care of a partner, spouse, parent, other family member or friend.
Contact:  Ann Anderson, (650) 726-5929

Alzheimer's/Dementia Caregiver Support Group

Sponsor:  San Carlos Elms
Location: San Carlos
Time:  Second Tuesday, 7:00 - 8:00 p.m.
Content:  Support group for anyone taking care of a partner, spouse, relative or friend who has Alzheimer?s disease or other type of dementia.
Contact:  June Wider, (650) 595-1500

Lavender Seniors (LGBT Elders) Telephone Group

Sponsor:  Senior Center Without Walls
Location: At home, in a comfortable chair, with your telephone, by conference call
Time:  Third Tuesday of the month, 7:00 - 9:00 p.m.
Content:  This telephone-based support group is designed to help aging LGBT people stay connected with others and  combat isolation.
Contact:  Jennifer Cancino-Munn, (877) 797-7299

Credits

Update Fall/Winter 2007
Volume 24, No. 3

Editor
Bonnie Lawrence

Production & Graphics
Megan Krause
Melania Jusuf

Contributors
Michelle Alcedo
Kris Coffey
Carly Coppola
Amy Friedrich-Karnik
Kathleen Kelly
Beth Logan
Laura Hautala
Megan Krause
Bonnie Lawrence
Sima Schoen
Lana Sheridan
Walt Yost

Executive Director
Kathleen A. Kelly

Board of Directors
Kathy Murphy, President
Jennifer Arthur, First Vice President
Kathryn Lee, Second Vice President
Greg Haley, Treasurer
Janice Oringer, Secretary
Claude Everhart
Ping Hao
Helen Sloss Luey
William J. Lynch
Jeffrey Moeller
Margaret Wallhagen
Sue Wong

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