CRIS

Dementia
   Organizations
   Self-Help
   Publications
   Reading
   Glossary

Patient Resources

Getting Help
To get a referral to a mental health professional in your local area, or to obtain information on self-help groups and other resources located near you, Each group has developed its own procedures for referrals and has information on cities throughout the United States.

Organizations
Following is a list of mental health organizations to help you find more information about anxiety disorders and related issues. CMRIS is not responsible for the contents of any website listed. 

American Psychiatric Association 
Public Affairs Office, Suite 501
1400 K St., N.W.
Washington, D.C. 20005 
(202) 682-6220
Internet: http://www.psych.org 
For referral information about psychiatrists in your area, call or write the APA Public Affairs office.

Alzheimer's Association -- The Alzheimer's Association issues regular reports on its research grants and occasional research updates, as well as many materials for families and caregivers. A library provides reference service. Information on participation in drug trials is also available. Contact a local chapter or the Alzheimer's Association, 919 North Michigan Avenue, Suite 1000, Chicago, IL 60611-1676; 312-335-8700 or 800-272-3900. 

Alzheimer's Disease Education and Referral Center (ADEAR) -- Sponsored by the National Institute on Aging, ADEAR is a national resource center for information on Alzheimer's disease including research findings and participation in clinical trials. ADEAR publishes Connections, a quarterly newsletter for professionals. Write or call ADEAR Center, P.O. Box 8250, Silver Spring, MD 20907-8250; 800-438-4380. 

CDC/Centers for Disease Control
1600 Clifton Road, NE 
Atlanta GA 30333 
inquiry@cdc.gov 
www.cdc.gov
Tel: 800-311-3435 

Creutzfeldt-Jakob (CJD) Foundation Inc.
P.O. Box 611625 
No. Miami FL 33261-1625 
crjakob@aol.com 
Fax: 954-436-7591 

National Institute of Mental Health
Public Inquiries, Rm. 8184, MSC 9663
6001 Executive Blvd.
Bethesda, MD 20892 

National Institute of Neurological Disorders and Stroke (NINDS) -- Part of the National Institutes of Health (NIH), NINDS conducts and sponsors research on Alzheimer's disease and other neurological disorders. Its Alzheimer's research focuses on the basic biology and genetics of the disease, and its diagnosis and clinical management. Write or call NINDS, Public Inquiries, Building 31, Room 8A-16, Bethesda, MD 20892; 301-496-5751. 

National Institute of Mental Health (NIMH) -- Part of NIH, NIMH studies Alzheimer's disease in three principal areas: genetics and neurobiology; clinical research; and psychosocial research on the stress associated with caregiving. Write or call NIMH, Public Inquiries, Parklawn Building, Room 15C05, 5600 Fishers Lane, Rockville, MD 20857; 301-443-4513. 

National Institute of Nursing Research (NINR) -- Part of NIH, NINR supports and conducts research related to the diverse caregiving responsibilities of nurses including the development of ways to enhance mental functioning and independence. Write or call NINR, Building 31, Room 5B-25, Bethesda, MD 20892; 301-496-0207. 

National Institute on Aging (NIA) -- Part of NIH, NIA leads the Federal effort on Alzheimer's disease and aging research. NIA conducts and sponsors research on the epidemiology, cause, diagnosis, and management of Alzheimer's disease. Write or call NIA, Building 31, Room 5C-27, Bethesda, MD 20892; 301-496-1752. NIH Publication No. 95-3782

Society for Neuroscience -- With more than 23,000 members, the Society is the world's largest organization for basic scientists and clinicians who study the brain and nervous system. Its annual meeting, held in the fall, includes many presentations on Alzheimer's disease research. Abstract volumes are available for purchase. For information about obtaining publications, write or call Office of Public Affairs, Society for Neuroscience, 11 Dupont Circle NW, Suite 500, Washington, DC 20036; 202-462-6688. 

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Self-Help Groups 
The following lay organizations can provide additional referral information on national and local self-help groups. Several also provide monthly publications as well as guidelines and materials for starting a self-help group. 

American Self-Help Clearinghouse
Northwest Covenant Medical Center 
25 Pocono Rd.
Denville, NJ 07834
(800) 367-6724 (in NJ) 
(201) 625-9565 (outside NJ)
Internet: http://www.cmhc.com/selfhelp/
Founded in 1990 National network 

National Mental Health Consumers' Self-Help
Clearinghouse
1211 Chesnut St.
Suite 1000
Philadelphia, PA 1910
(800) 553-4539 or (215) 735-6082
Internet: http://www.libertynet.org/~mha/cl_house.html
Founded in 1985 National network 

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Further Reading
Khachaturian ZS, Phelps C, and Buckholtz N. The Prospect of Developing Treatments for Alzheimer Disease. In Terry RD,

Katzman R and Bick KL eds. Alzheimer Disease, New York: Raven Press, 1994; pp 445-454

Potential Biomedical Treatments

Barrett-Connor E and Kritz-Silverstein D. Estrogen Replacement Therapy and Cognitive Function in Older Women, Journal of the American Medical Association 269:2637-2641, 1993. 

Breitner JC, Gau BA, Welsh KA, et al. Inverse Association of Anti-Inflammatory Treatments and Alzheimer's Disease: Initial Results of a Co-Twin Control Study, Neurology 44:227-232, 1994. 

Burinaga M. Neurotrophic Factors Enter the Clinic, Science 264:772-774, 1994. 

Tuszynski MH and Gage FH. Neurotrophic Factors and Neuronal Loss: Potential Relevance to Alzheimer Disease. In Terry RD, Katzman R, and Bick KL eds. Alzheimer Disease, New York: Raven Press, 1994; pp 405-418

Knapp MJ, Knopman DS, Solomon PR. A 30-Week Randomized Controlled Trial of High-Dose Tacrine in Patients With Alzheimer's Disease, Journal of the American Medical Association 271:985-991, 1994.

Rapoport SI. Aging and the Blood-Brain Barrier, Neurobiology of Aging 15:759-760, 1994.

Managing Symptoms
Beck C, Heacock P, Mercer S, and Walton C. Decreasing Caregiver Assistance With Older Adults With Dementia. In Funk SG, Tornquist EM, Champagne MT, and Wiese RA, eds. Key Aspects of Elder Care, New York: Springer, 1992. 

Teri , Rabins P, Whitehouse P, et al. Management of Behavior Disturbance in Alzheimer Disease: Current Knowledge and Future Directions, Alzheimer Disease and Associated Disorders: An International Journal 6:77-88, 1992. 

Caregiving
Bourgeois MS, Schulz R, and Burgio L. Intervention for Caregivers of Patients with Alzheimer's Disease: A Review and Analysis of Content, Process, and Outcomes, The International Journal of Aging and Human Development (in press). 

Holmes D, Ory M, and Teresi J. Special Dementia Care: Research, Policy, and Practice Issues, Alzheimer Disease and Associated Disorders: An International Journal 8(Suppl. 1), 1994.

Leon J and Siegenthaler LA. Perspectives on the Major Special Care Units Surveys. In Special Dementia Care: Research, Policy, and Practice Issues, Alzheimer Disease and Associated Disorders: An International Journal 8(Suppl. 1): S58-S71, 1994. 

Mace NL and Rabins PV. The 36-Hour Day, rev. ed., Baltimore: The Johns Hopkins University Press, 1991. 

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Publications
·         Alzheimer's Disease Progress Report -- Published annually by the National Institute on Aging (NIA), this report summarizes the year's findings, focusing on studies conducted at or sponsored by the National Institutes of Health (NIH

Write or call the Alzheimer's Disease Education and Referral Center (ADEAR). Free.

Brain Work: The Neuroscience Newsletter -- This bimonthly newsletter from the Dana Institute reports on current brain research, including Alzheimer's disease studies, for a general audience. Write the Charles A. Dana Foundation, 1001 G Street NW, Suite 1025, Washington, DC 20001-4545. Free.

Alzheimer's Disease: A Guide to Federal Programs -- A road map to federally sponsored activities concerning Alzheimer's disease and related disorders, this directory includes descriptions of all programs and agencies that carry out or sponsor research. Copies are available from ADEAR. Free.

On the Brain: The Harvard Mahoney Neuroscience Institute Letter -- Written in non-technical language, this quarterly newsletter describes current studies and findings in neuroscience. Write to On the Brain, 1001 G Street NW, Suite 1025, Washington, DC 20001-4545. Free.

Report of the Council on Alzheimer's Disease -- The Council on Alzheimer's Disease, part of the U.S. Department of Health and Human Services (DHHS), coordinates research conducted by or for Federal agencies. Its annual report to Congress covers progress in research on services to Alzheimer's patients and families. Copies are available from ADEAR. Free.

Report of the Panel on Alzheimer's Disease -- Published by the Advisory Panel on Alzheimer's Disease, also in DHHS, this annual report makes recommendations relating to services and encourages support for promising biomedical research. Copies are available from ADEAR. Free. 

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Glossary

•  Acetylcholine -- a neurotransmitter that plays an important role in learning and memory. 

• Activities of daily living (ADLs) -- basic activities that are important to self care, such as bathing, dressing, using the toilet, eating, and getting in and out of a chair. 

• Amyloid -- See beta amyloid. 

• Amyloid precursor protein (APP) -- the larger protein from which beta amyloid is formed. 

• Antioxidents -- substances that deactivate oxygen free radicals. 

• ApoE4 -- one form of the apoE gene, which produces the protein apolipoprotein E4; this form of the gene occurs more often in people with Alzheimer's disease than in the general population. The other two forms of the gene, apoE2 and apoE3, may protect against the disease. 

• ApolipoproteinE -- a protein that carries cholesterol in blood and that appears to play some role in the brain. 

• Axon -- the tube-like part of a neuron that transmits outgoing signals to other cells. 

• Behavioral symptoms -- symptoms of Alzheimer's disease that are troublesome for family and professional caregivers, such as wandering, pacing, agitation, screaming, and aggressive reactions. 

• Beta amyloid -- a protein found in dense deposits forming the core of neuritic plaques. 

• Blood-brain barrier -- a group of mechanisms that keep some substances in the bloodstream from entering cells in the brain. 

• Calcium channel blocker -- a drug that stops calcium from entering cells.

• Capillaries -- the smallest blood vessels, which route blood to individual cells. 

• Caregiver -- anyone who provides care to a physically or cognitively impaired person, including both family and other caregivers at home and professional caregivers in health care settings. 

• Cell -- the smallest unit of a living organism that is capable of functioning independently. 

• Cerebral cortex -- the part of the brain most involved in learning, language, and reasoning. 

• Cholinergic -- pertaining to acetylcholine; the cholinergic system includes the neurons that contain acetylcholine and the neurons and proteins that are stimulated or activated by acetylcholine. 

• Chromosome -- a threadlike structure in the nucleus of a cell. Humans have 23 pairs of chromosomes, one set from the mother, one from the father. Chromosomes contain DNA, sequences of which make up the genes. 

• Clinical trial -- a carefully controlled study designed to test whether an intervention, such as a drug, is safe and effective in human beings. 

• Cognitive functions -- all aspects of thinking, perceiving, and remembering. 

• Computerized tomography scan (CT or CAT scan) -- a diagnostic test that uses a computer and x-rays to obtain a highly detailed picture of the brain. 

• Dementia -- a broad term referring to a condition in which cognitive functions decline. 

• Dendrites -- the branchlike extension of neurons that receive messages from other neurons. 

• DNA (deoxyribonucleic acid) -- a large double stranded molecule within chromosomes; sequences of DNA make up genes. 

• Familial Alzheimer's disease (FAD) -- an early-onset form of Alzheimer's disease that appears to be inherited. In FAD, several members of the same generation in a family are often affected. 

• Free radicals -- see oxygen free radicals. 

• Gene -- the biologic unit of heredity, each gene is located at a definite position on a particular chromosome and is made up of a string of chemicals, called bases, arranged in a certain sequence along the DNA molecule. 

• Gene mutation -- an abnormality in the sequence of bases of a gene. 

• Glucose metabolism -- the process by which cells turn food into energy. 

• Hippocampus -- a structure deep in the brain involved in memory storage. 

• Magnetic resonance imaging (MRI) -- a diagnostic and research technique that uses magnetic fields to generate a computer image of brain anatomy. MRI can now also be used to measure brain activity. 

• Magnetic resonance spectroscopy imaging (MRSI) -- a research technique that allows scientists to measure concentrations of substances in the brain. 

• Metabolism -- the normal process of turning food into energy. 

•  Mitochondria -- structures inside cells where glucose metabolism takes place. 

• Nerve growth factor (NGF) -- a neurotrophic factor that promotes the repair of cholinergic neurons. 

• Neuritic plaques -- deposits of amyloid mixed with fragments of dead and dying neurons. 

• Neurofibrillary tangles -- collections of twisted nerve cell fibers or paired helical filaments found in the cell bodies of neurons in Alzheimer's disease. 

• Neuron -- a nerve cell in the brain. 

• Neuroscientist -- a scientist who studies the brain. 

• Neurotransmitter -- a chemical messenger between neurons; a substance that is released by the axon of one neuron and excites or inhibits activity in a neighboring neuron. 

• Neurotrophic factors -- a family of substances that promote growth and regeneration of neurons. 

• Oxygen free radicals -- oxygen molecule with an unpaired electron that is highly reactive, combining readily with other molecules and sometimes causing damage to cells. See also antioxidents. 

• Paired helical filaments -- twisted fibers making up neurofibrillary tangles. 

• PET scan - see positron emission tomography. 

• Phospholipids -- molecules of fat in cell membranes. 

• Positron emission tomography (PET) -- an imaging technique that allows researchers to observe and measure brain activity by monitoring blood flow and concentrations of substances such as oxygen and glucose in brain tissues. 

• Protease -- an enzyme that splits a protein into smaller sections. 

• Protein -- a molecule made up of amino acids arranged in a specific order which is determined by a gene. Proteins include neurotransmitters, enzymes, and hundreds of other substances. 

• Plaques -- see neuritic plaques. 

• Receptor -- a protein in a cell membrane that recognizes and binds to chemical messengers, such as neurotransmitters. 

• Respite care -- temporary relief from the burden of caregiving provided in the home, a nursing home, or elsewhere in a community. 

• Senile dementia -- an outdated term, previously used for dementia in old age. 

• Single photon emission computerized tomography (SPECT) -- an imaging technique that allows researchers to monitor blood flow to different parts of the brain. 

• Special care unit -- a long-term care facility with environmental features and/or programs designed for people with dementia. 

• SPECT -- see single photon emission computerized tomography. 

• Spectroscopy -- see magnetic resonance spectroscopy imaging.

• Sundowning -- the tendency for the behavioral symptoms of Alzheimer's disease to grow worse in the afternoon and evening. 

• Synapse -- the minute gap between nerve cells across which neurotransmitters pass. 

• Tangles -- see neurofibrillary tangles

• Tau -- a protein that is a principal component of paired helical filaments in neurofibrillary tangles. 

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