Together in the Hope for a Cure and New Treatments,

Suzanne Gilroy, MSW

Care Services Senior Social Worker

The Jim “Catfish” Hunter Chapter of the ALS Association

120-101 Penmarc Dr.

Raleigh, NC 27603

919.755.9001 x 227

877-568-4347 x 227

Connect with me on Facebook!

Have you registered your team for the Walk to Defeat ALS® yet?  Please do not wait any longer, sign up NOW!

CONFIDENTIAL COMMUNICATION DISCLAIMER: This e-mail may contain protected health information that is strictly confidential.  If you are not the intended recipient, you are hereby notified that any use, disclosure, copying, distribution or action taken in reliance on the content of this communication is strictly prohibited.  Please notify the sender and then destroy this e-mail and any attachments.

From: lisa [mailto:xxxxxx@alsaohio.org]
Sent: Wed 5/2/2012 11:48 AM
To: Alisa Brownlee
Subject: FW: our article!

http://journals.lww.com/topicsinlanguagedisorders/Abstract/2012/04000/Methods_of_Communication_at_End_of_Life_for_the.7.aspx0

Topics in Language Disorders:

April/June 2012 - Volume 32 - Issue 2 - p 168–185

doi: 10.1097/TLD.0b013e31825616ef

End-of-Life Considerations in Clinical Practice

Methods of Communication at End of Life for the Person With Amyotrophic Lateral Sclerosis

Brownlee, Alisa; Bruening, Lisa M.

Supplemental Author Material

Abstract

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that results in loss of most motor functions by the time of death. Most persons with ALS experience a dysarthria that eventually renders oral/vocal communication unintelligible. This article reviews the communication needs of persons with ALS and the range of communication strategies used, including most forms of augmentative and alternative communication (AAC). Survey data are presented concerning perceived presence and severity of communication deficits, common communication topics, and communication strategies used with different communication partners and at 3 time intervals (2–6 months, 4 weeks, and 1–2 days) before death. Survey data were collected from 625 family members/caregivers in 8 states in the United States, reporting on their experiences with persons with ALS who were deceased at the time of the survey. The analysis focused on patterns of communication used in the last 6 months as end-of-life approaches. Most common communication topics were physical needs, caregiving issues, and family issues. Least common topics were spiritual and death and dying issues. Communication strategies did change as end of life approached, with a decrease in all modes of communication including natural speech, writing, gestures, and electronic AAC. Unaided and low-tech strategies did not increase during the same time interval. Health care providers must be knowledgeable about the communication options available and factors influencing communication choices. Speech–language pathologists play an important role in monitoring speech changes, providing assistance in making choices about communication options, and educating clients, health care providers, and family members.

Lisa M. Bruening, M.S., CCC-SLP

Patient Services Coordinator

The ALS Association

Northern Ohio Chapter

phone: 216-592-2572

toll free:  888-592-2572

fax:  216-592-2575

Check out our webpage:  www.alsaohio.org

As of October 19, 2010 every person living with ALS in the United States can self-enroll in the National ALS Registry! 

How to get to the National ALS Registry http://www.cdc.gov/als

Become an ALSA Advocate!  It's easy! 

Go to our website and follow the tab for Public Policy. Click on Advocacy Action Center and sign up today!

Where Patients Matter Most