The list on the follow page is a comprehensive list of caregiver resources. It is well worth copying for future reference.
Source Workforce
AARP: This organization supplies information about caregiving, long-term care and aging, including publications and audiovisual aids for caregivers. The free online seminar Planning for the Care of Aging Parents is just one example of the educational resources provided.
www.aarp.org/learn/course/ and www.aarp.org/research/housing-mobility/caregiving/
(800) 424-2277
Alzheimer’s Association 24/7 Helpline: Referral and support.
info@alz.org
(800) 272-3900
Benefits CheckUp: This Web site, operated by the National Council on the Aging, identifies federal and state assistance programs for older Americans in each community.
www.benefitscheckup.org and www.ncoa.org
Caregivers Marketplace: A free service for family caregivers that offers savings and education on a wide range of goods and services for anyone who "gives, gets or needs care."
www.caregiversmarketplace.com
(866) 327-8340
Caregiving Online: The site pulls together other sites that offer information on maintaining caregiver health
www.caregiving.com
Caregiver Survival Resources: The site aims to help others cope with the demands of caregiving.
www.caregiver911.com
Centers for Medicare & Medicaid Services: The official U.S. government site for people on Medicare.
www.medicare.gov
Children of Aging Parents: A nonprofit, charitable organization whose mission is to assist the nation's nearly 54 million caregivers of the elderly or chronically ill with reliable information, referrals and support, and to heighten public awareness that the health of family caregivers is essential to ensure quality care of the nation's growing elderly population.
www.caps4caregivers.org
(215) 945-6900 or (800) 227-7294
ElderCare Online: An online community designed to provide comprehensive information and support for those caring for aging loved ones, especially those coping with Alzheimer's.
www.ec-online.net
Eldercare Locator: A national directory of community services.
www.eldercare.gov/eldercare/public/home.asp
(800) 677-1116
Family Caregiver Alliance: Tracks action on key legislative issues of concern to family caregivers and offers advice on how to get involved in advocacy efforts.
www.caregiver.org
(415) 434-3388
Family Caregiving Guides and Directories: A Department of Health and Human Services directory of Web sites for caregivers.
www.aoa.gov/eldfam/For_Caregivers/For_Caregivers.asp
First Gov for Seniors: A Web site maintained by the Social Security Administration to provide an up-to-date overview of health, wellness and financial issues of interest to older persons and their families.
www.seniors.gov
Healthy Caregiver: A magazine and online community dedicated to the issues and interests of contemporary adults caring for aging parents.
www.healthycaregiver.com
HomeCare Online: The National Association for Home Care’s virtual headquarters. NAHC is committed to representing the interests of the home care and hospice community.
www.nahc.org
Hospice Net: Organization provides information and support to patients and families facing life-threatening illnesses. Hospice Net is an independent, nonprofit 501(c)(3) organization working exclusively through the Internet.
www.hospicenet.org
National Alliance for Caregiving: The NAC is dedicated to providing support to family caregivers of older persons and the professionals who help them and to increase public awareness of issues facing family caregiving.
www.caregiving.org
National Association of Professional Geriatric Care Managers: Care managers are professionals who coordinate caregiving services. They can be helpful when family members are not able to play an active role.
www.caremanager.org
(520) 881-8008
National Family Caregivers Association: NFCA is dedicated to making life better for all of America's family caregivers. Family caregivers focus on their loved ones’ needs; NFCA focuses on family caregivers.
www.nfcacares.org
National Hospice and Palliative Care Organization: The largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for the dying and their loved ones.
www.nhpco.org
(800) 658-8898
Today’s Caregiver magazine: A print and Web magazine dedicated to those caring for loved ones, written for caregivers by caregivers and dealing with topics like stress and depression management, financial, legal and medical advice, housing and incontinence.
www.caregiver.com
U.S. Administration on Aging: The federal agency that develops programs and information resources for the elderly and their families.
www.aoa.gov (click tab for "Older People and Their Families" for a caregivers handbook that can be downloaded.)
Family Caregivers Online Newsletter: Online educational resource with practical information for family caregivers.
www.familycaregiversonline.net
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Leah Dobkin is a freelance writer based in Shorewood, Wisconsin. She has more than 30 years' experience working in the field of aging. She has prepared educational materials and articles for family caregivers, businesses and nonprofit organizations on this subject, has spoken at conferences and has conducted training for employees, employers and community service providers throughout the U.S. E-mail editors@workforce.com to comment.
'If Alzheimer's ever was cause for public concern, it's now,' said David Hyde Pierce, Alzheimer's Association board member and spokesperson for the campaign. 'Our aging population compels the need for effective disease- modifying drugs. As individuals, as families, as a country, we can't afford this disease, physically, emotionally, or financially.'
You can find the entire article at The Alzheimer's Reading Room
A recent study by the MetLife Foundation found that Americans fear getting Alzheimer's disease more than heart disease, stroke, or diabetes. Alzheimer's ranks second in the minds of American's only to cancer.
MetLife Survey Highlights
The Complete MetLife Survey on Alzheimer's: What America Thinks (36 pages)
The Major Findings of the Study included the following:
Finding 1: Americans fear Alzheimer’s disease.
Finding 2: Americans Know Little or Nothing about Alzheimer’s.
Finding 3: One-third of Americans say they have direct experience with Alzheimer’s disease.
Finding 4: Most Americans are concerned that they will be responsible at some point for someone with Alzheimer’s disease.
Finding 5: Most Americans recognize the need to create a plan to address the possibility of Alzheimer’s disease, but very few have taken steps to do so.
Conclusion
Americans fear Alzheimer’s and the impact that it could have on their lives in the coming years. And although they may recognize the need to look toward the future, the majority hasn’t started making plans.
The downside of living longer has a high price: Nearly 50 percent of those who are 85 or older are affected, and the rate of Alzheimer’s increases exponentially every five years past the age of 65. And with the aging of America’s population these numbers are sure to become even more dramatic in the future, making it imperative that individuals and institutions plan for the future.
The growing number of people with Alzheimer’s will have an impact on every part of society. The vast majority of people know that this disease may someday affect them, either directly or as a caregiver. In addition, many already know a family member or friend who has Alzheimer’s. They strongly support the concept of planning now to cope with the life-changing impact of the
disease – at least in theory.
Despite widespread agreement, few have taken steps to prepare for the possibility of developing Alzheimer’s. Only a few have a solid understanding of the disease. The overwhelming majorityhas done nothing to plan.
The survey reveals a mismatch between fear of Alzheimer’s and acting on that fear to prepare for the future. The findings from this survey suggest that there is an opportunity to build awareness and help bridge the gaps that were identified in knowledge and behavior. Americans should learn all they can about the disease that will touch so many of us and plan for the future.
Alzheimer's disease is the most common cause of a condition called dementia. It is named for the German doctor who first described it, Alois Alzheimer. What is it? Who gets it? What causes it?
The article was taken from the Milton S. Hershey Medical Center website. This is useful to clear up some of the misunderstanding about the Alzherimer's Disease.
Alzheimer’s Disease
What is it?
Alzheimer's disease is the most common cause of a condition called dementia. Dementia is a general decline in mental ability, such as memory, language skills, judgment, and concentration. Alzheimer’s is a progressive disease, which means symptoms occur gradually and become worse over time. It is named for the German doctor who first described it, Alois Alzheimer.
Who gets it?
Alzheimer’s disease affects most commonly affects those over the age of 65, although it has been diagnosed in people in their 40s and 50s.
What causes it?
The degeneration of parts of the brain, which destroys brain cells, causes the symptoms of Alzheimer’s. However, at this time researchers are not sure what causes this degeneration. Those with a family history of Alzheimer’s are more likely to develop the disease as they age, so there is a gene abnormality that causes the disease in some people. Researchers are looking for links between Alzheimer’s disease and the environment, lifestyle, nutrition, and viruses.
What are the symptoms?
Alzheimer’s usually progresses in three stages, with each lasting anywhere from one to several years. The first symptom of Alzheimer’s disease is usually mild forgetfulness. Someone in the early stages may find him or herself unable to find the right word, recall where something was placed, or recall someone’s name. It may be difficult to concentrate. At this point, symptoms are so general that they do not signal a serious problem or have a great impact on day-to-day functioning. As the disease progresses to the second stage, the forgetfulness becomes worse, making it difficult to function at work, remember directions, or to even make it through the day without difficulty. The person may be restless and unable to sleep at night. His or her personality may change considerably, with increasing anxiety and decreasing emotions. By the late stages of Alzheimer’s, patients suffer from extreme confusion and memory loss. They are unable to recall the names of close friends and family or recent events, and cannot function socially or perform basic daily personal care. Late-stage Alzheimer’s patients may have hallucinations and delusions.
How is it diagnosed?
Alzheimer’s disease is diagnosed by taking a complete medical history and performing a thorough physical examination. Alzheimer’s is generally suspected when there is a gradual deterioration in mental ability. The doctor will perform tests, such as blood tests and brain scans, to rule out other possible causes of the symptoms. The doctor will also ask the patient a series of questions to test his or her mental status. One type of test of mental status is called neuropsychological testing, which is a standardized test of memory, concentration, and visual-spatial skills. Because a definite diagnosis can only be made by performing an autopsy after death, patients are diagnosed with “probable” Alzheimer’s. An autopsy of brain tissue, however, will show areas of abnormal tissue, called plaques, made up of abnormal proteins; a loss of nerve cells; and areas of tangles in the nerve cells that remain in patient’s with Alzheimer’s disease.
What is the treatment?
At this time, there is no cure for Alzheimer’s disease. Treatment focuses on maintaining the best possible quality of life for the patient by providing a supportive environment. Memory aids, such as calendars and other daily reminders of time and place, can help the patient feel more secure and reduce confusion. There are some medications that, when used in the early stages of this disease, can slow memory loss in some patients for a limited amount of time. However, these drugs are used with caution because of potential side effects. Other drugs may be prescribed to treat anxiety, sleeplessness, depression, and hallucinations, as necessary. In the early stages of Alzheimer’s, it is important to help the patient maintain as much independence as possible. As the disease progresses, it may be necessary to seek the help of a home healthcare aid, an adult daycare, or nursing home. While there is currently no treatment to prevent or stop the progression of Alzheimer’s, researchers are continuing to study this disease and test new drugs. There is a possibility that certain types of nonsteroidal anti-inflammatory drugs (NSAIDs) may slow the progression of Alzheimer’s.
Self-care tips
A diagnosis of probable Alzheimer’s is devastating for someone who has been accustomed to living an independent life. It is important to provide the patient with emotional and physical support as he or she adjusts to living with this disease. Keeping the daily routine consistent and as stress free as possible is helpful. Because depression is so common in the early stages of Alzheimer’s, you should be aware of the signs of depression and seek help for the patient as soon as possible. Caring for someone with Alzheimer’s can be demanding and discouraging, especially when the loved one does not remember who you are. Your doctor or local social services agency can direct you to support services to help make this time a little easier. Also seek legal advice so it is clear who has the power to make medical and financial decisions once your loved one is no longer able to do this for him or herself. If you have a family history of Alzheimer’s disease, see your doctor for regular checkups. An early diagnosis is important, especially as the medical community learns more about this disease and its treatment. While there is no way to prevent this disease, you can lower your risk and protect yourself from many illnesses by following a healthy diet that is high in fiber and antioxidants and low in saturated fat, and participating in regular physical exercise. Performing activities that stimulate your brain on a regular basis, such as crossword puzzles, word searches, or memory games, may also help maintain mental ability longer.
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This information has been designed as a comprehensive and quick reference guide written by our health care reviewers. The health information written by our authors is intended to be a supplement to the care provided by your physician. It is not intended nor implied to be a substitute for professional medical advice.
The list on the follow page is a comprehensive list of caregiver resources. It is well worth copying for future reference.
