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

• Green-Field Library Services
• Resource Lists
• Care Topics
• Coach Broyles' Playbook, a free, football-style "playbook" for those who care for someone with Alzheimer's; written by Frank Broyles, former Athletic Director of the University of Arkansas Razorbacks

CVS Caremark

• Health After 60
• Alzheimer's: Dealing with uncooperativeness
• Communicating with someone who has Alzheimer's

ElderCare Online

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

Millman Respite Center

• Dementia Caregivers Resource Library

National Institute on Aging

• Publications

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Books and Articles for Caregivers

• The 36-hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life by Nancy L. Mace and Peter V. Rabins; Warner Books, 2001.
• Alzheimer's: Finding the Words by Harriet Hodgson; John Wiley & Sons, 1995.
• The best friends approach to Alzheimer's care by Virginia Bell and David Troxel; Health Professions Press, 2003.
• Can Do Activities for Adults with Alzheimer's Disease: Strength-based Communication and Programming by Eileen Eisner; Pro-Ed, 2001.
• Coping with communication challenges in Alzheimer's disease by Marie T. Rau, National Council of Senior Citizens; Singular Pub. Group, 1993.
• Dementia care: Developing partnerships in practice by Trevor Adams, Charlotte Laura Clarke, Royal College of Nursing (Great Britain); Elsevier Health Sciences, 1999.
• Hearing the voice of people with dementia: opportunities and obstacles by Malcolm Goldsmith; Readers Digest, 1996.
• Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste and Robert N. Butler; Houghton Mifflin Harcourt, 2004.
• The Rush Manual for Caregivers, 6th Edition by The Rush Alzheimer’s Disease Center, 2004.
• Talking to Alzheimer's: Simple Ways to Connect when You Visit with a Family Member or Friend by Claudia J. Strauss and Zaven S. Khachaturian (FRW); New Harbinger Publications, 2002.
• Therapeutic interventions in Alzheimer's disease: a program of functional skills for activities of daily living and communication by Naomi Feil and Vicki de Klerk-Rubin; Health Professions Press, 2002.
• The validation breakthrough: simple techniques for communicating with people with Alzheimer's-type dementia by Joan K. Glickstein; Aspen Publishers, 1997.
• Alzheimer’s Disease and Dementia Caregiver’s Guide (PDF) by Michelle Gillian and Stuart Grayson. This is a self-published guide written by two caregivers of spouses with Alzheimer's disease.

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Books and Articles for Health Care Professionals

• Alzheimer's dementia. Coping with communication decline. PM Hendryx-Bedalov. J Gerontol Nurs. 2000;26:20-4.
• Comforting the confused: strategies for managing dementia. Stephanie B. Hoffman and Constance A. Platt; Springer Publishing Company, 2000.
• Communicating With Individuals With Alzheimer’s Disease: Examination of Recommended Strategies. Ruth M. Tappen, Christine Williams-Burgess, Jackie Edelstein, Theris Touhy and Sarah Fishman. Arch Psychiatr Nurs. 1997;11:249–256.
• Communication Abilities of Individuals With Late-Stage Alzheimer Disease. Bayles, Kathryn A; Tomoeda, Cheryl K; Cruz, Robyn F; Mahendra, Nidhi. Alzheimer Disease and Associated Disorders. 2000;14:176–181.
• Conversation Intervention with Alzheimer’s Patients: Increasing the Relevance of Communication. Ruth M. Tappen, EdD, RN, FAAN, Christine L. Williams, DNSc, RN, CS, Charlotte Barry, RN, PhDc and Donna DiSesa, MS, RNC. Clin Gerontol. 2002;24:63-75.
• Improving the functioning of individuals with Alzheimer's disease: emergence of behavioral interventions. Bayles KA, Kim ES. J Commun Disord. 2003;36:327-43.
• Predictors of driving safety in early Alzheimer disease. Dawson JD, Anderson SW, Uc EY, Dastrup E, Rizzo M. Neurology. 2009;72:521-7.
• The person with Alzheimer's disease: pathways to understanding the experience. Phyllis Braudy Harris; JHU Press, 2002.
• State of the Science: Professional Partners Supporting Family Caregiving — a report by the American Journal of Nursing, the AARP Foundation, the Council on Social Work Education, the Family Caregiver Alliance and the Rutgers Center for State Health Policy.
• Validation Therapy: Restoring communication between persons with Alzheimer's disease and their families. Lisa Touzinsky, BSW, MSW. American Journal of Alzheimer's Disease and Other Dementias. 1998;13:96-101.
• The Electronic Dementia Guide for Excellence (EDGE) Project. This web-based resource program offers staff members in dementia care settings guidance to identify and implement interventions that specifically address care and communication challenges faced in dementia care.

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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.

• One-page California Guideline summary reference
• One-page National Guideline summary reference
• Full Report (4MB PDF)
• Provider Checklist for Treating a Confused Elder

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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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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