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Resources

There are many resources available. Below is a listing of primarily websites, but also includes books, articles, videos, on-line support groups and more.

On this page:

General Information
Aging
Living Arrangements
Driving
Medication
Clinical Trials

Communication
Alzheimer's Association Publications
General
Caregiving Strategies
Clinical/Research
Training

Diseases
Amyotrophic Lateral Sclerosis
Alzheimer's Disease
Corticobasal Degeneration
Creutzfeldt-Jakob Disease
Dementia with Lewy Bodies
Frontotemporal Dementia/Pick's Disease
Huntington's Disease
Primary Progressive Aphasia
Progressive Supranuclear Palsy
Vascular Dementia/Multiinfarct Dementia/Strokes

Collaborators/Related Centers
Alzheimer's Disease Research Centers of California (ARCC)
Related Centers/Collaborators

General Information

Alzheimer's Association
The Alzheimer's Association website includes current news item, general information about the organization, caregiver resources, public policy alerts, press releases, books, AA chapter information, medical information and upcoming events.

Alzheimer Research Forum

Aging in the Know: Your Gateway to Health and Aging Resources on the Web
A healthcare site created by the American Geriatrics Society Foundation for Health in Aging (FHA).

Whole Brain Atlas
A primer on neuroimaging and anatomy.

Department of Health and Human Services Healthfinder
Health issues from food, safety, government health, prevention and self-care from children to seniors.

Department of Motor Vehicles (DMV)
Information about the DMV (of California).

Family Caregiver Alliance or (800) 445-8106
Caregiver resource center for brain impaired adults, support groups, education, care planning, research and advocacy.

Mayo Clinic

Medicare
Information about the federal health insurance program for people age 65 or older.

Intute
The the medical pages of Intute are a free catalogue of selected and evaluated web resources for education and research.

National Institute on Aging or (800) 222-2225
The NIA has many free publications

PubMED
PubMed, a service of the National Library of Medicine, includes over 15 million citations for biomedical articles back to the 1950's. These citations are from MEDLINE and additional life science journals. PubMed includes links to many sites providing full text articles and other related resources.

or

Google Scholar

The Rush Manual for Caregivers (PDF file)
Rush University Medical Center

Social Security information
Anything you could possibly want or need to know about social security, guide for employees, research and statistic, legislation, benefits, public information resources.

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Aging

Administration on Aging (AoA)
Important topics such as Department of Justice guidelines for providers implementing immigration related parts of the Welfare Reform Act.

American Association of Retired Persons (AARP) or (800) 424-3410
(202) 434-2277 (publications on caregiving)
This popular consumer group posts policy statements and position papers.

American Geriatrics Society(AGS
AGS provides professional and consumer information.

Children of Aging Parents
(212) 945-6900 or (800) 227-7294

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Living Arrangements
Please see our section on Living Arrangements.
Driving
Please see our section on Driving.

Medication

Center Watch: Clinical Trials Listing Service
New FDA approval, clinical trails listings and industry news.

Drug Infonet
Includes drug search, database, publication, disease centers, meetings highlights and discussion groups.

PharmWeb
Features patient information, conference information, discussion rooms, government and regulatory bodies.

Rx-List
Includes drug interactions for the most commonly used agents, keyword search, alternative medicine, information and education.

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Clinical Trials

Search for Clinical Trials
Alzheimer's Disease & Education Referral Center (ADEAR)

Clinical Trials.gov
National Institutes of Health

UCSF Clinical Trials

Sponsored Research
National Alzheimer's Coordinating Center (NACC)

Research
Alzheimer’s Association - Northern California & Northern Nevada chapter

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Communication

Alzheimer's Association Publications

Steps to enhancing communications: Interacting with persons with Alzheimer's disease. Chicago, IL: Alzheimer's Association, 1997. (Brochure) Order no. ED310Z Cost: Single copy free, call 800/272-3900

Communicating.
Chicago, IL: Alzheimer's Association, 1990. Order no. ED248ZB 1 videocassette (20 minutes) Cost: $25.00, call 877/356-9119. Summary: Caregivers describe their challenges and solutions for communicating with the person with the disease. Covers how verbal, nonverbal, and visual communication are ways to help both caregivers and individuals with the disease express their thoughts. Call no.: WM 220 VC no.248 1990.

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General

Web sites

Communicating with impaired elderly persons
Do's and don'ts of communicating with aging parents
Hearing and older people
ElderCare Online

Care Topics

Books, Chapters
(Put together by the Alzheimer's Assocation's Green-Field Library)

"Communication." In: Kuhn, D. The Rush Manual for Caregivers pp. 23-30. Chicago, IL: Rush University Medical Center, 1999. Call no.: WM 220 R952 1999

"Problems with speech and communication." In: Mace, Nancy L., Rabins, Peter V. The 36-hour day: a family guide to caring for persons with Alzheimer's disease, related dementing illnesses, and memory loss in later life, 3rd edition. pp. 34-40. Baltimore, MD: Johns Hopkins University Press, 1999. Call no.: WM 220 M33 1999

Coach Broyles' Playbook, an engaging, how-to guide written for those who care for someone with Alzheimer's.

Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste.

Videos

Communication, the heart of the matter: the sandwich generation, coping with aging parents. Sherborn, MA: Aquarius Health Care, 1997. 1 videocassette (20 minutes) Summary: For caregivers on communication concerns and caring for a loved one from a distance. Call no.: HV 1461 VC no.596 1997.

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Caregiving Strategies

Web Sites

Alzheimer's: dealing with uncooperativeness
Communicating with someone who has Alzheimer's
Building Better Health, AdvancePCS

Books

Bastedo, D.A. Understanding the language of dementia: ideas for behavior assessment and management. Waterford, MI: Bastedo, Medical Record Services Incorporated, 1998. Call no.: WM 220 B318u 1998

Eisner, E. Can do activities for adults with Alzheimer's disease: strength-based communication and programming. Austin, TX: Pro-Ed, 2001. Call no.: WM 450 E36 2001

Feil, N., Klerk-Rubin, V. de. The validation breakthrough : simple techniques for communicating with people with Alzheimer's-type dementia. Baltimore, MD: Health Professions Press, 2002. Call no.: WM 220 F45 2002

Glickstein, J. Therapeutic interventions in Alzheimer's disease: a program of functional skills for activities of daily living and communication. Gaithersburg, MD: Aspen Publishers 1997. Call no.: WM 450 G599t 1997

Goldsmith, M. Hearing the voice of people with dementia: opportunities and obstacles. Levittown, PA: Jessica Kingsley Publishers, 1996. (Availability: Green-Field Library does not carry)

Hodgson, H. Alzheimer's: finding the words: a communication guide for those who care. New York, NY: John Wiley & Sons, Incorporated, 1995. Call no.: WM 220 H691 1995

Rau, M. Coping with communication challenges in Alzheimer's disease. San Diego, CA: Singular Publishing Group, 1993. Call no.: WM 220 R239 1993

Strauss, C.J. Talking to Alzheimer's. Oakland, CA: New Harbinger Press, 2002. Call no.: WM 220 S912 2001

Book Chapters

Best friends approach to communication. IN: Bell, V., Troxel, D. The Best friends approach to Alzheimer's care. pp. 115-126. Baltimore, MD: Health Professions Press, 1997. Call no.: WM 220 B435 1997

Communication in dementia care: a partnership approach. IN: Adams, T. Clarke, C.L. (eds.). Dementia care: developing partnerships in practice. pp. 121-143. New York, NY: Baillier Tindall, 1999. (Availability: Green-Field Library does not carry)

Articles, Journals

Focus on communication abilities when visiting elders with Alzheimer's disease. The Brown University Long-term Care Quality Letter (October 16, 1995), 7(19), pp. S1-2. (Availability: Green-Field Library does not carry)

Hendryx-Bedalov, P. Alzheimer's dementia: coping with communication decline. Journal of Gerontological Nursing (August 2000), v.26(8), pp. 20-24. (Availability: Green-Field Library does own)

Kelley, M.F. Social interaction among people with dementia. Journal of Gerontological Nursing (April 1997), v.23(4), pp.16-20. (Availability: Green-Field Library does own)

Lachs, M. Help! My dad just won't listen to me. Prevention (November 1998), 50(11), pp. 163-165. (Availability: Green-Field Library does not carry)

Reese, D. Through their eyes. Contemporary Long-Term Care (December 1998), v.21(12), pp. 44-52. (Availability: Green-Field Library does own)

Touzinsky, L. Validation Therapy: restoring communication between persons with Alzheimer's disease and their families. American Journal of Alzheimer's Disease (March-April 1998), v.13(2), pp. 96-101. (Availability: Green-Field Library does own)

Tappen, R., Williams-Burgess, C., Edelstein, J., et. al. Communicating with individuals with Alzheimer's disease: examination of recommended strategies. Archives of Psychiatric Nursing (October 1997), v.11(5), pp. 249-256. (Availability: Green-Field Library does not carry)

Videos

Breakfast Club: enhancing the communication ability of Alzheimer's patients.
Verno Beach, FL: Speech Bin, 1997. 1 videocassette (25 minutes)
Summary: Examines a treatment method called the "Breakfast Club Program" to help ease communication for people with Alzheimer's disease. Call no.: WL 340 VC no.717 1997

Communicating with older adults and people with dementia.
Carrollton, TX: Assisted Living Best Practices, 1999. 1 videocassette (42 minutes)
Summary: Alzheimer experts share their knowledge of agnosia, amnesia, aphasia, apraxia and attention deficit in persons with dementia. The video covers how to communicate with the memory impaired. (Availability: Green-Field Library does not carry)

Communication: how to communicate with someone who has Alzheimer's disease or related dementia. In: Communication. Medford, OR: Healing Arts Communication, 2001. 2 videocassettes (58 minutes)
Summary: Covers a range of communication and language techniques useful in such caregiving situations as repetitive and difficult questioning, chores, aggression and more. Call no: WV 270 VC no.580 1999

How to have a meaningful visit with your loved one at a nursing facility.
Chicago, IL: Terra Nova Films, 1997. 1 videocassette (38 minutes)
Summary : This video is directed toward individuals whose loved ones have recently been placed in nursing facilities, and is intended to alleviate the guilt, sadness, and discomfort one may feel upon visiting their loved ones. Call no.: WX 27 VC no.568 1997

Interacting with Alzheimer patients: tips for family and friends: Alzheimer disease do's & don'ts. Baltimore, MD: Video Press, University of Maryland, School of Medicine, 2000. 1 videocassette (20 minutes)
Summary: In a discussion with several caregivers, Alzheimer expert Peter Rabins identifies the do's and don'ts of interacting with individuals with Alzheimer's disease including distractions, reinforcement, repetition, independence and more. Call no.: WX 27 VC no.720 2000

Recognizing and responding to emotion in persons with dementia.
Philadelphia, PA: Philadelphia Geriatric Center, 1997. 1 videocassette (26 minutes)
Summary: Discusses emotions in people with dementia especially when they can no longer express their likes and dislikes but can still have preferences. Call no.: WY 160 VC no.488 1997.

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Clinical/Research

Books / Theses and Dissertations

Bierstedt, M. The role of the speech-language pathologist in the management of persons with Alzheimer's disease. (M. S. Research paper). Carbondale, IL: Southern Illinois University at Carbondale, 1997. (Availability: Green-Field Library does not carry)

Christy, C. The effects of a treatment package on conversational skills of elderly people with Alzheimer's disease in a day-care program. (Psy. D. Thesis). San Francisco, CA: California School of Professional Psychology, 1996. (Availability: Green-Field Library does not carry)

Comer, K. Enhancing the conversational skills of nursing home residents using a prosthetic memory device. (M. A. Thesis). Witchita, KS: Witchita State University, 1998. (Availability: Green-Field Library does not carry)

Curtright, A. Effect of stuffed vs. domestic animals on the communication of an individual with Alzheimer's disease. (M. A. Thesis). Warrensburg, MO: Central Missouri State University, 2000. (Availability: Green-Field Library does not carry)

Grubaugh , S.A. Communication and Alzheimer's disease: the perspective of the primary provider. (M. A. Thesis). Missoula, MT: University of Montana, 2001. (Availability: Green-Field Library does not carry)

Hoffman, S.B., Platt, C.A.Comforting the confused: strategies for managing dementia. New York, NY: Springer Publishing Company, 2000. Call no.: WM 220 H711c 2000

Jacox, J.M. A study on speech-language pathologist's roles in developing home-treatment programs for clients with Alzheimer's disease. (M. S. Thesis). Chicago, IL: Saint Xavier University, 1997. (Availability: Green-Field Lilbrary does not carry)

Lichtenberger, B.L. Effects of toy simulation on communication in Alzheimer's disease. (M. A. Thesis). Bloomington, IN: Indiana University, 2001. (Availability: Green-Field Library does not carry)

Ramanathan, V. Alzheimer discourse: some sociolinguistic dimensions. Mahwah, NJ: Erlbaum, 1997. (Availability: Green-Field Library does not carry)

Scarborough , E. The effects of speech rate and gesture on auditory comprehension in Alzheimer's disease. (M. S. Thesis). Charleston, SC: Medical University of South Carolina, 2001. (Availability: Green-Field Library does not carry)

Seman, D. Meaningful communication throughout the journey: clinical observations. IN: Harris, P.B. The Person with Alzheimer's disease: pathways to understanding the experience. pp. 134-149. Baltimore, MD: Johns Hopkins University Press, May 2002. (Availability: In press)

Speice, J. The effects of family communication patterns during the middle phase of Alzheimer's disease. (Ph. D. Thesis). Blacksburg, VA: Virginia Polytechnic Institute and State University, 1995. (Availability: Green-Field Library does not carry)

Reed, K. Communication breakdowns of individuals with Alzheimer's disease reported by their spouses. (M. A. Thesis). Cleveland, OH: Case Western Reserve University, 1998. (Availability: Green-Field Library does not carry).

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Articles, Journal

Acton, G., Mayhew, P., Hopkins, B., et. al. Communicating with individuals with dementia: the impaired person's perspective. Journal of Gerontological Nursing (February 1999), v.25(2), pp. 6-13. (Availability: Green-Field Library does own)

Bayles, K.A., Tomoeda, C.K., Cruz, R.F., et. al. Communication abilities of individuals with late-stage Alzheimer disease. Alzheimer Disease and Associated Disorders (July-September 2000), v.14(3), pp. 176-181. Availability: Green-Field Library does own)

Beach, D., Kramer, B. Communicating with the Alzheimer's resident: perceptions of care providers in a residential facility. Journal of Gerontological Social Work (1999), v.32(3), pp. 5-26. (Availability: Green-Field Library not carry)

Fisher-Morris, M., Gellatly, A. The experience and expression of pain in Alzheimer patients. Age and Aging (November 1997), v.26(6) pp. 497-500. (Availability: Green-Field Library does not carry)

Hendryx-Bedalov, P. Effects of caregiver communication on the outcomes of requests in spouses with dementia of the Alzheimer type. International Journal of Aging and Human Development (1999), v.49(2), pp. 127-148. (Availability: Green-Field Library does not carry)

Ripich, D.N., Ziol, E., Lee, M.M. Longitudinal effects of communication training on caregivers of persons with Alzheimer's disease. Clinical Gerontologist (1998), v.19(2), pp. 37-55. (Availability: Green-Field Library does own)

Roberto, K.A., Richter, J.M., Bottenberg, D.J., et al. Communication patterns between caregivers and their spouses with Alzheimer's disease: a case study. Archives of Psychiatric Nursing (August 1998), v.12(4), pp. 202-208. (Availability: Green-Field Library does not carry)

Santo Pietro M.J., Boczko, F. Breakfast Club: results of a study examining the effectiveness of a multi-modality group communication treatment. American Journal of Alzheimer's Disease (May-June 1998) pp. 146-158. (Availability: Green-Field Library does own).

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Video

Stimulating meaningful communication in patients with Alzheimer's disease. Baltimore, MD: National Center for Neurogenic Communication Disorders, 1997. 1 videocassette (60 minutes) Summary: Experts in neurogenic communications disorders discuss recent linguistic and non-linguistic research including studies recommending the use of toy stimuli with persons with Alzheimer's. Call no.: WM 220 VC no. 464 1997.

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Training

Web Sites

The Electronic Dementia Guide for Excellence (EDGE) Project
Dementia Solutions

Kits

Maintaining communication with persons with dementia: an educational program for nursing home staff and family members.
New York, NY: Springer Publishing Company, 1998. 1 videocassette (40 minutes), 1 manual (113 pages), 1 workbook (70 pages) Summary:This kit is part of a 7-week educational program for nursing home staff and family members on maintaining communication with people who have Alzheimer's disease. (Availability: Green-Field Library does not carry)

Books, Theses and Dissertations

Carmony, A.L., Ellis, L. A handbook for training caregivers in functional communication of Alzheimer's patients. (M. Ed. Thesis). Toledo, OH: University of Toledo, 2000. (Availability: Green-Field Library does not carry)

Freeman, J. Caregiver communication skills training in Alzheimer's disease. (Ph. D. Thesis). Fairfax, VA: George Mason University, 1998. (Availability: Green-Field Library does not carry)

Santo Pietro, M.J., Ostuni, E. Successful communication with Alzheimer's disease patients: an in-service training manual. Boston, MA: Butterworth-Heinemann, 1997. Call no.: WM 220 S237 1997

Reed, L. Teaching communication skills to health care providers of dementia type patients in long term care facilities. (M. A. Thesis (M.A.). Canyon, TX: West Texas A & M University, 1996. (Availability: Green-Field Library does not carry)

Rich, K.M. The efficacy of caregiver training utilizing the Alzheimer's disease communication guide: the FOCUSED program for caregivers. (M. A. Thesis). Kirksville, MO: Truman State University, 1999. (Availability: Green-Field Library does not carry)

Journal Articles

McCallion, P., Toseland, R.W., Lacey, D., et al. Educating nursing assistants to communicate more effectively with nursing home residents with dementia. Gerontologist (August 1999), v.39(5), pp. 546-558. (Availability: Green-Field Library does own)

Orange , J.B., Colton-Hudson, A. Enhancing communication in dementia of the Alzheimer's type. Topics in Geriatric Rehabilitation (1998), v.14(2), pp. 56-75. (Availability: Green-Field Library does not carry)

Ripich, D.N., Ziol, E., Fritsch, T., et al. Training Alzheimer's disease caregivers for successful communication. Clinical Gerontologist (1999), v.21(1), pp. 37-56. (Availability: Green-Field Library does own)

Wagner, L. Teaching staff how to interpret difficult behavior. Provider (January 1997), v.23(1), pp. 58-59, 61-62. (Availability: Green-Field Library does own)

Videos

Alzheimer's disease: communicating with the patient.
Tucson, AZ: National Center for Neurogenic Communication Disorders, 1998. 1 videocassette (60 minutes)
Summary: Experts in neurogenic communication disorders discuss techniques of use to speech-language pathologists and allied health care professionals. all no.: WM 220 VC no.721 1998

Communicating with moderately confused older adults. Duluth, MN: Mental Health Outreach Network, 1997. 1 videocassette (20 minutes)
Summary: Experts in aging show how to create the right atmosphere and stimulate the minds of people in the middle stages of Alzheimer's disease without asking for more than they can handle. Call no.: WM 220 VC no.485 1997

Communicating with oriented older adults. Duluth, MN: Mental Health Outreach Network, 1997. 1 videocassette (21 minutes)
Summary: This program shows how to listen, empathize, and engage in the give-and-take of effective conversation. It also demonstrates techniques of getting information, paraphrasing, summarizing and clarifying. Call no.: WT 145 VC no.484 1997

Communicating with residents who have Alzheimer's disease: the attitude 1-2-3 approach. Boston, MA: Assisted Living University, 1998. 1 videocassette (20 minutes) Summary: The program instructs caregivers in how to communicate with Alzheimer's residents in the early, middle, and late stages of the disease. Call no.: WM 220 VC no.581-2 1997

Communicating with severely confused older adults.
Duluth, MN: Mental Health Outreach Network, 1997. 1 videocassette (19 minutes)
Summary: Provides demonstrations of how to communicate with people who have advanced dementia, including the later stages of Alzheimer's disease. Call no.: WM 220 VC no.481 1997

Communicating with the "Alzheimer-type" population: the Validation Method.
New York, NY: Edward Feil Productions with Communication, Inc., 1991. 1 videocassette (21 minutes)
Summary: Naomi Feil uses role-playing to demonstrate the communication technique, Validation Therapy, which she developed to reduce stress in persons with Alzheimer's and their caregivers. Call no.: WT 150 VC no.75 1991

Culture and communication: effects of accent and speech rate on comprehension in healthy elderly and Alzheimer's patients .
Tucson, AZ: National Center for Neurogenic Communication Disorders, 1998. 1 videocassette (60 minutes)
Summary: This training video, hosted by experts such as Kathryn Bayles, discusses the impact that accent and rate at which an individual speaks has on communication in the elderly and persons with Alzheimer's disease. Call no.: WM 220 VC no.722 1998

Dementia grand rounds .
Rockville, MD: American Speech-Language-Hearing Association; Rehab Training Network, 1996. 1 videocassette (210 minutes)
Summary: This seminar reviews biologic, neurologic, and cognitive changes that affect communication in normal aging and the examination and medical diagnosis of persons with dementia. Call no.: WM 220 VC no.723 1996

Impaired communication.
Baltimore, MD: Video Press, 1993. 1 videocassette (20 minutes) Summary: This video, with Alzheimer expert Peter Rabins, describes the most common types of communication problems, aids in staff recognizing them, and suggests specific strategies to care for persons with speech and language deficits. Call no.: WT 150 VC no.386 1993

Improving the ability of Alzheimer's patients to communicate.
Tucson, AZ: Canyonlands Publishing, Incorporated, 1998. 1 videocassette (28 minutes)
Summary: Demonstrates techniques of communication that are useful while helping a person with Alzheimer's perform activities of daily living. (Availability: Green-Field Library does not carry)

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Diseases

Amyotrophic Lateral Sclerosis (ALS)

UCSF ALS Center

ALS Network

ALS Factsheets

Family Caregiver Alliance or (415) 434-3388

National Institute of Neurological Disorders and Stroke (NINDS)

Alzheimer’s Disease (AD)

Headquarters or (800) 272-3900
Northern California chapter
Alzheimer's Association

Alzheimer’s Disease Education & Referral Center or (800) 438-4380

Alzheimer Research Forum

Alzheimer's Disease Fact Sheet
Family Caregiver Alliance or (800) 445-8106

Los Angeles Alzheimer’s Association
Contact: Canossa Chan

National Institute of Neurological Disorders and Stroke (NINDS)

Corticobasal Degeneration (CBD)

We Move
A Resource for movement disorder information and activities.

Creutzfeldt-Jakob Disease (CJD)

BSE, CJD, nvCJD Information Resource

California Creutzfeldt-Jakob Disease Surveillance Project

CJD Information Page

CJD Fact Sheet

CJD Fact Sheet (Spanish version)

CJD Fact Sheet for Healthcare Workers and Morticians

CJD Brochure

CJD support group at CJD Voice

National Prion Disease Pathology Surveillance Center

National Institute of Neurological Disorders and Stroke (NINDS)

Dementia with Lewy Bodies (DLB)

Alzheimer’s Association - Northern California & Northern Nevada chapter
Alzheimer’s Association - National Site or (800) 272-3900

CANDID (Counselling ANd Diagnosis In Dementia) Fact Sheets
The Dementia Research Centre

Lewy Body Dementia Association
Newsletter or (800) 539-9767

Family Caregiver Alliance or (800) 445-8106

National Institute of Neurological Disorders and Stroke (NINDS)

Pick's Disease Support Group Online

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Frontotemporal Dementia / Pick's Disease (FTD)

The Association for Frontemporal Dementias
Email: info@ftd-picks.org with "AFTD" in the subject line

CANDID (Counselling ANd Diagnosis In Dementia) Fact Sheets
The Dementia Research Centre

Frontotemporal Dementia
Family Caregiver Alliance or (800) 445-8106
Education section on FTD.

FTD Support Forum
An international support group set up by caregivers for people with various types of frontotemporal dementia.

Frontotemporal Dementia Caregiver Support Center
A collection of useful links to articles on frontotemporal dementia issues.

Mayo Clinic
Education section on FTD

Pick's Disease section
MedlinePlus
Medical encyclopedia

National Institute of Neurological Disorders and Stroke (NINDS)

Neurology (journal)
Articles on frontotemporal dementia published by Neurology

Pick's Disease Support Group Online

Southern California Frontotemporal Dementia Clinic and Research Program
Director: Arousiak Varpetian; Clinic Coordinator: Veronica Perry
Appts: (562) 401-8130; Email: varpetia@usc.edu

UCLA Frontotemporal Dementia and Neurobehavior Clinic
Director: Mario F. Mendez, MD, PhD; Co-Director: Jill S. Shapira, RN, PhD
Appts: (310) 794-2550 or UCLA Alzheimer Disease Center (ADC): (310) 794-6039

Frontotemporal Dementia Support Group
UCSF Memory and Aging Center
Facilitator: Robin Ketelle (415) 502-1053

Books

What If It's Not Alzheimer's? - A Caregiver's Guide to Dementia
Edited by Lisa Radin & Gary Radin, Prometheus Books, 2003

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Huntington's Disease (HD)

Family Caregiver Alliance or (800) 445-8106

Huntington’s Disease Advocacy Center

Huntington’s Disease Society of America (HDSA)

Huntington’s Disease Information Page
National Institute of Neurological Disorders and Stroke

Huntington's Outreach Project for Education, at Stanford

UCSF Huntington's Disease Support Group
Facilitator: Andrea Zanko (415) 476-9320

Primary Progressive Aphasia (PPA)

The Dementia Research Centre

National Aphasia Association

Primary Progressive Aphasia Program
PPA Newsletter
Northwestern University

Progressive Supranuclear Palsy (PSP)

CANDID (Counselling ANd Diagnosis In Dementia) Fact Sheets
The Dementia Research Centre

National Institute of Neurological Disorders and Stroke (NINDS)

Society for Progressive Supranuclear Palsy or (800) 457-4777

We Move
A Resource for movement disorder information and activities.

Vascular Dementia (VaD)/multiinfarct dementia (mid)/strokes

American Stroke Association or (888) 4-STROKE (888-478-7653)
American Heart Association or (800) AHA-USA-1 (800-242-8721)

Family Caregiver Alliance or (415) 434-3388

National Institute of Neurological Disorders and Stroke (NINDS)

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Related Centers/Collaborators

Alzheimer’s Disease Research Centers of California (ARCC)
California State Department of Health

San Diego
Alzheimer’s Disease Research Center
University of California, San Diego
(619) 294-3777

Fresno
UCSF Fresno Alzheimer’s Research Center
(559) 233-3363

Irvine
Institute for Brain Aging and Dementia
University of California, Irvine
(949) 824-2382

Los Angeles
Alzheimer’s Disease Research Center
University of Southern California
(323) 442-3715Los Angeles/Downey
University of Southern California
Rancho Los Amigos National Rehabilitation Center
(562) 401-8130

Los Angeles/San Fernando Valley
UCLA Alzheimer’s Disease Research Center
University of California, Los Angeles
General Info: (310) 206-5238
UCLA Appointments: (310) 794-1195
Drew/UCLA Center: (323) 563-3915
Olive View/UCLA Center: (818) 895-9541

Palo Alto
Stanford U/Stanford VA Alzheimer’s Research Center of California
Stanford University/Stanford VA
(650) 858-3915

Martinez
UC Davis Alzheimer’s Disease Center
University of California, Davis
(925) 372-2485

Sacramento
UC Davis Alzheimer’s Disease Center
University of California, Davis
(916) 734-5496

San Francisco
UCSF Memory and Aging Center
University of California, San Francisco
(415) 476-6880

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Related Centers/Collaborators

Mayo Clinic
Mayo Clinic

San Francisco VA Medical Center — MR Imaging Center
Michael W. Weiner, MD

Southern California Frontotemporal Dementia Clinic and Research Program
Director: Arousiak Varpetian; Clinic Coordinator: Veronica Perry
Appts: (562) 401-8130; Email: varpetia@usc.edu

University of California, Berkeley
Berkeley Psychophysiology Laboratory
Robert Levenson

University of California, Los Angeles (UCLA)
UCLA Memory and Aging Research Center

UCLA Frontotemporal Dementia and Neurobehavior Clinic
Director: Mario F. Mendez, MD, PhD; Co-Director: Jill S. Shapira, RN, PhD
Appts: (310) 794-2550 or UCLA Alzheimer Disease Center (ADC): (310) 794-6039

University of California, San Francisco (UCSF)
ALS Center

Gladstone Institute of Neurological Disease
Lennart Mucke, MD

Institute of Health & Aging
Patrick Fox, PhD

Institute for Neurodegenerative Diseases
Stanley Prusiner, MD

University of North Carolina
Kirk Wilhelmsen, MD, PhD

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