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RESOURCE CENTRAL

doi: 10.1097/01.NNN.0000365457.75237.2b
Departments: Resource Central
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Other Dementias, Other Resources

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  • →“Dementia With Lewy Bodies,” by Bradley Boeve, M.D., available free for download from the Lewy Body Dementia Association, Inc. (lbda.org)
  • Living With Lewy's: Empowering Today's Dementia Caregiver, written by and for caregivers, and edited by Amy J. Throop and Gerald S. Throop.
  • Neurologynow.com: Go to our Web site and search for “dementia.”
  • The 36-Hour Day: A Family Guide to Caring for People with Alzheimer's Disease, Other Dementias, and Memory Loss in Later Life (4th edition), by Nancy L. Mace, MA, and Peter V. Rabins, M.D., M.P.H.
  • TheBrainMatters.org: The patient portion of the American Academy of Neurology Web site; search for “dementia.”
  • What if It's Not Alzheimer's? A Caregiver's Guide to Dementia, edited by Lisa Radin and Gary Radin. Contains information about frontotemporal dementia.
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Related Clinical Trials

Although a cure for dementia remains a distant hope, research into Alzheimer's disease has produced medications that treat symptoms, and clinical trials are underway to see if those medications affect other dementias as well.

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LEWY BODY DEMENTIA (LBD)

  • →Two studies are investigating donepezil as a treatment for memory problems in people with LBD.
  • →One study is investigating the effectiveness of another Alzheimer's drug, memantine, for the treatment of dementia associated with both Parkinson's disease and LBD.
  • →One study is investigating the effectiveness of ramelteon, a sleep aid, on quelling the agitation of rapid eye movement (REM) behavior disorder, or RBD, a sleep disorder common among people with Parkinson's disease and LBD.
  • →For more information on these trials, go to clinicaltrials.gov and search for “Lewy body disease.”
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FRONTOTEMPORAL DEMENTIA (FTD)

  • →Two studies are investigating the effectiveness of memantine for the treatment of FTD.
  • →One study is investigating tolcapone, a drug given to people with Parkinson's disease to increase the amount of dopamine in their brain, to see if it helps people with FTD.
  • →For more information on these trials, go to clinicaltrials.gov and search for “frontotemporal dementia.”
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VASCULAR DEMENTIA

  • →One study is investigating whether donezepil, a drug that alleviates memory problems in people with Alzheimer's patients, may also help people with vascular dementia to perform tasks of daily living.
  • →For more information on these trials, go to clinicaltrials.gov and search for “vascular dementia.”
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Assistance Directory

For a full listing of patient organizations, go to neurologynow.com

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HELP FOR ALL NEUROLOGICAL DISORDERS

American Academy of Neurology Foundation aan.com/go/foundation

1-800-879-1960

TheBrainMatters.org AAN patient website thebrainmatters.org

National Institute of Neurological Disorders and Stroke ninds.nih.gov

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ALZHEIMER'S/DEMENTIA

Alzheimer's Association alz.org

1-800-272-3900

Alzheimer's Disease Education and Referral Center alzheimers.org

1-800-438-4380

Alzheimer's Foundation of America alzfdn.org

1-866-232-8484

Association for Frontotemporal Dementias FTD-Picks.org

1-866-507-7222

Lewy Body Dementia Association LewyBodyDementia.org

1-800-539-9767

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AUTISM

Autism Society of America autism-society.org

1-800-3AUTISM (1-800-328-8476)

Autism Speaks, Inc. autismspeaks.org

212-252-8584

Global and Regional Asperger Syndrome Partnership grasp.org

1-888-474-7277

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BRAIN TUMOR

American Brain Tumor Association abta.org

800-886-2282

National Brain Tumor Society Braintumor.org

1-800-934-2873

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CEREBRAL PALSY

United Cerebral Palsy ucp.org

1-800-872-5827

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DYSTONIA

Benign Essential Blepharospasm Research Foundation blepharospasm.org

409-832-0788

Dystonia Foundation dystonia-foundation.org

1-800-377-DYST (1-800-377-3978)

National Spasmodic Dysphonia Association dysphonia.org

1-800-795-6732

Spasmodic Torticollis spasmodictorticollis.org

1-888-445-4588

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EPILEPSY AND SEIZURES

Citizens United for Research in Epilepsy (CURE) CUREepilepsy.org

312-255-1801

Epilepsy Foundation epilepsyfoundation.org

1-800-332-1000

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HEADACHE/MIGRAINE

National Headache Foundation headaches.org

1-888-NHF-5552 (1-888-643-5552)

Migraine Research Foundation migraineresearchfoundation.org

212-249-5402

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HUNTINGTON'S DISEASE

Hereditary Disease Foundation hdfoundation.org, 212-928-2121

Huntington's Disease Society of America hdsa.org

1-800-345-HDSA (1-800-345-4372)

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HYDROCEPHALUS

Hydrocephalus Association hydroassoc.org

1-888-598-3789

National Hydrocephalus Foundation nhfonline.org

1-888-857-3434

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MULTIPLE SCLEROSIS

MSFriends msfriends.org

1-877-MSFRIENDS

MSWorld msworld.org

Multiple Sclerosis Association of America msassociation.org,

1-800-532-7667

Multiple Sclerosis Foundation msfocus.org

1-800-225-6495

National Multiple Sclerosis Society nationalmssociety.org

1-800-FIGHT-MS (1-800-344-4867)

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MYASTHENIA GRAVIS

Myasthenia Gravis Foundation of America myasthenia.org

1-800-541-5454

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NEUROMUSCULAR DISEASES

ALS Association alsa.org

1-800-782-4747

Charcot-Marie-Tooth Association charcot-marie-tooth.org

610-499-9264

1-800-606-CMTA (2682)

Kennedy's Disease Association kennedysdisease.org

559-658-5950

Moebius Syndrome Foundation moebiussyndrome.com

1-660-834-3406

Muscular Dystrophy Association mda.org

1-800-FIGHT-MD (1-800-344-4863)

Neuropathy Association neuropathy.org

212-692-0662

Spastic Paraplegia Foundation, Inc. sp-foundation.org

1-877-773-4483

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PAIN

American Pain Foundation painfoundation.org

1-888-615-PAIN (1-888-615-7246)

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PARKINSON'S DISEASE & MOVEMENT DISORDERS

American Parkinson Disease Association apdaparkinson.org

1-800-223-2732

International Essential Tremor Foundation essentialtremor.org

1-888-387-3667

Michael J. Fox Foundation for Parkinson's Research michaeljfox.org

1-800-708-7644

National Ataxia Foundation ataxia.org

763-553-0020

National Parkinson Foundation parkinson.org

1-800-327-4545

Parkinson's Disease Foundation pdf.org

1-800-457-6676

Society for Progressive Supranuclear Palsy curepsp.org

1-800-457-4777

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SLEEP

National Sleep Foundation sleepfoundation.org

202-347-3471

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STROKE

American Stroke Association strokeassociation.org

1-888-4-STROKE (1-888-478-7653)

Give Me Five For Stroke giveme5forstroke.org

National Stroke Association stroke.org

1-800-787-6537

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TOURETTE SYNDROME

Tourette Syndrome Association tsa-usa.org

718-224-2999

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TRAUMA

Brain Injury Association of America biausa.org

1-800-444-6443

Brain Trauma Foundationb raintrauma.org

212-772-0608

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