Serving Clients with Progressive Dementias

by Judith Maginnis Kuster - Minnesota State University, Mankato (kuster@mnsu.edu).

ASHA supports "the active involvement of speech-language pathologists in assessing communication skill, providing treatment programs to facilitate and maintain functional communication, and helping caregivers understand the communication problems associated with dementia." (Ferrand, CT and Bloom, RL (1997) Introduction to Organic and Neurogenic Disorders of Communication, Boston: Allyn & Bacon, p. 101). This column highlights general Internet references for professionals and consumers as well as specific resources available for three progressive dementias: Creutzfeldt-Jakob, Huntington's, and Alzheimer's diseases. (Other disorders associated with dementia are listed at here)

• PubMed is the National Library of Medicine's free search service provideing abstract information for 9 million citations in MEDLINE and Pre-MEDLINE. Add +speech or +dysphagia after the disorders listed above in a keyword search.

• Online Mendelian Inheritance in Man Database contains over 150,000 keyword searchable full-text documents on genetically-based disorders.

• Medscape's Online Medical Dictionary and Drug Search helps clarify medical reports and potential side effects of prescribed medication.

• The Massachusetts General Hospital Neurology Department hosts Web forums and/or chatrooms on Creutzfeldt-Jakobs, Huntington's, and Alzheimer's disease.

• Dementia Forum includes On My Mind, a personal diary of a caregiver of a parent with dementia.

• Hospice Foundation of America and National Hospice Organization.

• Many Internet sites play music which could provide "Name that Tune" activities for people who may not remember the song's words, but may be able to hum along. Examples: Folk Music of England, Scotland, Ireland, Wales, America and others and Roaring Twenties Music Extravaganza.

• Some sites re-capture memories of old radio and television programs such as TV in the 50's and Yesterday USA, the home of Old Time Radio Shows and Vintage Music

• Baseball History and Games Kids Play contains jump rope rhymes, rules of games most people played as children.

CFD is infectious (or inherited), fatal, and causes a rapidly progressing dementia.

• The Many Faces of Creutzfeldt-Jakob Disease provides insight into speech-language and dysphagia symptoms and the need for caregiver support.

• Creutzfeldt-Jakob Disease Foundation, Inc.

• CJD Voice Homepage

• The Sperling Biomedical Foundation site contains over 4300 articles and many CJD links.

HD is a hereditary, incurable, degenerative brain disorder that causes dementia, typically manifesting between the ages of 30-45 and lasting 10-15 years.

• Facing Huntington's Disease: A Handbook for Families

• Huntington's Disease Society of America

• Kansas University Medical Center's Caring for people with Huntington's Disease.

• hunt-dis@maelstrom.stjohns.edu is a mailing list for people affected by Huntingon's disease. To subscribe send the following message to listserv@maelstrom.stjohns.edu subscribe hunt-dis firstname lastname

• AD is a progressive, degenerative disease lasting 5-15 years and is the most common form of dementia.

• In English and Spanish, New York Online Access to Health (NOAH) has excellent information about Alzheimer's.

• The Alzheimer's Disease Web page provides helpful information on eating here and here.

• Alzheimer's Association includes information on enhancing communication.

• alzheimer@wubios.wustl.edu is a mailing list on Alzheimers or related dementing disorders. To subscribe send the following message to majordomo@wubios.wustl.edu subscribe Alzheimer.