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Caregiver/Consumer Resources & Community Links
Frequently Asked Questions By Caregivers
Memory Research
Center Brochures:
Consumer Resources and Community Links Where can I go for help in taking care of a person with Alzheimer’s disease? The closest Alzheimer’s Disease Center (in Arkansas, the UAMS Memory Research Center) is a good place to start. Geriatricians, psychiatrists and neurologists are all physicians who have special training regarding Alzheimer’s disease. Also contact the Alzheimer’s community agencies in your area.
I am taking care of a person with Alzheimer’s disease. Will this person eventually need to be in a nursing home? Many, but not all, persons with Alzheimer’s disease eventually need to enter nursing homes. There are many factors involved in making the decision to put a person in a nursing home. The rate of progression of disease, the help available to the caregiver(s), other health issues that the patient may have and the original wishes of the patient should all be considered when making such decisions. What are the options for long term care of Alzheimer’s disease patients? There are many long-term care services for Alzheimer’s patients and their caregivers. They include, in-home aides, adult day care, assisted living facilities, nursing homes, and, at the end of life, hospice care. When thinking about these options, the patient’s family, caregivers, and health care team should carefully look at the many different factors involved. Hospice care is for patients for whom the focus of their care has changed from curing to comfort. So the patient's caregivers are concerned foremost with increasing the patient's quality of life and comfort. This means keeping physical, mental and emotional pain to a minimum. Hospice care can take place in the home or in a special hospice unit within an institution. For more information, check out Arkansas Hospice. What are some common behavioral symptoms for people with AD? Some behavioral symptoms, such as resisting care, interfere with caregiving. Some behavioral symptoms are more troublesome than others. For example, hitting others may be considered more problematic than repeating questions over and over. There are many different behavioral symptoms and many reasons for them, but some of the more common problems include wandering or pacing, repeating actions or questions, and yelling or screaming. What are some of the reasons for these behaviors symptoms? Usually persons with AD behave in certain ways because they are trying to communicate with their caregivers. Persons may be in pain, hungry, worried, scared, or angry and they do not know how to communicate those feelings with their caregivers. This usually happens in the middle to late stages of AD. What can I do if my loved one with AD shows these behavioral symptoms? Try to understand why the person is acting that way. Environmental factors may be the reason. The person may be too hot or too cold. He or she may be disturbed by loud noises. The person may be overwhelmed by stimuli in the environment. For example, having both the television picture and the sound on may be too much for the person with AD. Playing music may be more calming. If any of these environmental factors are affecting the person, a caregiver can easily adjust the temperature or turn off the television. Another reason persons with AD may show behavioral symptoms is because they need of something. They may need to go to the bathroom or may be thirsty, hungry, in pain, or tired. Check to see if any of these factors may be the reason. Other reasons for behavioral symptoms include communication difficulties or sensory problems. For example, if a person needs glasses to see and is not wearing them s/he may feel unsafe because of an inability to see well. The person may be frustrated because they are not able to communicate thier needs or feelings to the caregiver and therefore use behaviors to try to communicate. Do not rush the person to complete thoughts or interrupt them. Instead, remind the person what s/he was talking about before they lost their train of thought and look for clues in their body movements and facial expressions to try to understand what the person is trying to say.
Consumer Resources and Community Links
Central Arkansas Support Groups and Resources
Arkansas Department of Human Services, Area Agency on Aging http://www.state.ar.us/dhs/aging/aaamap.html The link will take you to a map of your respective regions and toll free contact numbers.
Alzheimer’s Arkansas Programs and Services Telephone: 501-224-0021 or (outside Pulaski County) 1-800-689-6090
Alzheimer’s Association Central Arkansas Regional Chapter http://www.alzokar.org/arkansas/ Telephone: 501-265-0027 or (outside Pulaski County) 1-800-272-3900
Arkansas Hospice Telephone: 501-257-3400 or (outside Pulaski County) 1-877-257-3400
CareLink Online
Pennebaker Adult Day Healthcare Center http://geriatrics.uams.edu/clinical/pennebaker.asp Telephone: 501-753-8756
National Web Sites and Toll Free Support Lines
The Alzheimer’s Association (national organization) 24 Hour Support Line: 1-800-272-3900
Alzheimer's Disease Education & Referral Center (ADEAR) Questions: 1-800-438-4380 (available M-F 7:30 am-4:30 pm)
AARP Caregiving Information
http://www.aarp.org/life/caregiving/ Family Caregiver Alliance: National Center on Caregiving http://www.caregiver.org/caregiver/jsp/home.jsp Questions: 1-800-445-8106
Mayo Clinic Senior Health Center
http://www.mayoclinic.com/findinformation/conditioncenters/
Selected Books Hodgson, H. (1998). Alzheimer’s: Finding the words, a communication guide for those who care. Indianapolis: John Wiley and Sons.
Kuhn, D. (2003). Alzheimer’s early stages: First steps for family, friends and caregivers. (2nd ed.). Alameda, CA: Hunter House.
Mace, N.L. & Rabins, P.V. (1999). The 36 hour day: A family guide to caring for person with Alzheimer’s Disease, related dementing illnesses, and memory loss in later life. (3rd ed.). Baltimore: Johns Hopkins Press.
Simpson, C. (2002). Alzheimer’s Disease: A guide for families and caregivers. (3rd ed.). New York: Perseus Publishing.
Snyder, L. (2000). Speaking our minds: Personal reflections from individuals with Alzheimer's. New York: W.H. Freeman.
Selected Books for Children
Ages 9-12 Park, B. (2000). The graduation of Jake Moon. New York: Atheneum.
Ages 4-8 Frantti, A. (2002). Grandma’s cobwebs. Clifton Park, New York: Dagney Publishing.
Schwartz, N. (1997). Old timers. Toronto, Ontario:Tumbleweed Press.
Shriver, M. (2004).
What's happening to Grandpa?
New York, NY: Little, Brown, and
Selected Videos
Aldredge, E. (Producer). (2004). The forgetting: A portrait of Alzheimer’s [Television documentary]. New York and Washington, D.C.: Public Broadcasting Service.
The following videos are available through Alzheimer's Association Central Arkansas Regional Chapter:
Education Core; Alzheimer’s Disease Research Center; Washington University School of Medicine (Producer). (2003). Reflections on memories lost: Stories of early Alzheimer’s disease [Motion picture]. (Available from the Alzheimer’s Disease Education & Referral Center; National Institute on Aging. PO Box 8250, Silver Spring, MD 20907).
The following videos are available from the Joseph and Kathleen Bryan Alzheimer's Disease Research Center at Duke University Medical Center:
TMK Productions, Inc. (Producer). (2002). Facing Alzheimer’s: An African American perspective. [Television documentary]. New York and Washington, D.C.: Public Broadcasting Service.
Resources for Legal Planning
Alzheimer’s Arkansas Programs and Services will be able to provide you with further information regarding legal services. Click here for further information.
Note: Raymon Harvey’s ElderLaw site will be added pending discussion at the next MRC Education Core meeting
Senior Law: Estate Planning Resources on the Web http://www.seniorlaw.com/estatepl.htm
UAMS Speaker’s Bureau for Alzheimer’s Disease
The UAMS Memory Research Center will be happy to provide a speaker free of charge for your community group or church. For further information, click here for our brochure or contact Tanya Terry at 501-296-1892 or Marsha Hines at 501-526-6553.
Information About Alzheimer’s Medication Assistance Programs
Alzheimer’s Arkansas Programs and Services will be able to provide you with information concerning these programs. Click here for further information.
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The
news that a friend or family member has been diagnosed with Alzheimer's
can be both alarming and frightening. The Memory Research Center,
as part of its outreach to the community of consumers and caregivers,
presents the following resources to assist in