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Dementia Resources

There are many resources available. Below is a listing of primarily websites, but also books, articles, videos, on-line support groups and more. To download a printable list of web resources, please click here.

On this page:

General Information
Aging
Living Arrangements
Driving
Medication
Clinical Trials

Books and Articles
Libraries and Collections
Books and Articles for Caregivers
Books and Articles for Health Care Professionals

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 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, 6th Edition (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.

Caring.com
The Caring.com mission is to help people take care of their aging parents and loved ones by providing trusted information, access to eldercare experts, community support groups and a directory of local caregiving services.

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.

Drug Interaction Checker
An online tool that shows you potential interactions between your medications and other medications, foods, etc.

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Clinical Trials

UCSF Memory and Aging Center Clinical Research and 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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Books and Articles

Libraries and Collections

Alzheimer's Association

CVS Caremark

ElderCare Online

Millman Respite Center

National Institute on Aging

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Books and Articles for Caregivers

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Books and Articles for Health Care Professionals

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Diseases

Amyotrophic Lateral Sclerosis (ALS)

UCSF ALS Center

ALS Network

ALS Fact Sheets

Family Caregiver Alliance or (415) 434-3388

National Institute of Neurological Disorders and Stroke (NINDS)

Alzheimer’s Disease (AD)

Alzheimer's Association or (800) 272-3900
Northern California & Northern Nevada chapter
California Alzheimer's Data Report prepared for the Alzheimer's Association California Council, February 2009

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)

Guidelines for Alzheimer’s Disease Management
These guidelines were developed by the California Workgroup on Alzheimer's Disease Management through a collaborative effort of healthcare providers, consumers, academicians, and representatives of professional and volunteer organizations that included a review of scientific evidence supplemented by expert opinion when research has been unavailable or inconsistent.

Alzheimer's Disease, an article written by Memory and Aging Center staff for Google Knol™

Corticobasal Degeneration (CBD)

Society for Progressive Supranuclear Palsy
(800) 457-4777
An organization dedicated to increasing awareness of PSP and 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

Email discussion 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 or (800) 272-3900
Northern California & Northern Nevada chapter

Lewy Body Dementia Association 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 Frontotemporal Dementias
Email: info@ftd-picks.org with "AFTD" in the subject line

Frontotemporal Dementia education section
Family Caregiver Alliance (800) 445-8106

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 section on FTD

Pick's Disease entry in 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, 2007

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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 (HOPES), at Stanford

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

Primary Progressive Aphasia (PPA)

National Aphasia Association

Primary Progressive Aphasia Program
Northwestern University

Progressive Supranuclear Palsy (PSP)

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)
The California Department of Public Health
The Department of Health Care Services

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
The Institute of Personality and Social Research
Director: 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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