Many people with ALS eventually lose their ability to speak, or at least have difficulty speaking in the later stages. Losing the ability to communicate is frustrating to both the person with ALS and to caregivers. It is also emotionally difficult to be able to think and feel, but to be unable to express those thoughts and feelings to family and friends. If you are a family caregiver to someone with ALS, knowing the options available to you and to the person with ALS can help reduce some of the frustration and emotional strain.
Understanding AACs
AAC stands for Augmentative/Alternative Communication and refers to a method of communicating that is not speech. A device used to help someone communicate is called an AAC. You may also hear AACs referred to as SGDs, Speech Generating Devices, which is the term that Medicare uses. Augmentative devices are used to help a person who has some ability to speak, but whose speech is unintelligible or who cannot speak much because of limitations. Alternative devices are those that help someone who has completely lost the ability to speak and must rely on other methods to communicate.
Low-Tech Communication Options
There are several low-tech solutions that can help an ALS patient to communicate with caregivers and loved ones. Low-tech options include:
- Picture boards that the person can point at to show what they need or want.
- Letter boards that are used to spell out words by pointing to letters.
- White boards, which can be used by ALS patients who are still able to use their hands.
- Yes, no, maybe system in which the person might blink once for yes, twice for no, and look to the side for maybe.
- Mounting a laser pointer on a hat or headband to point to a letter board mounted on a wall or stand.
High-Tech Communication Options
Today’s technology allows people with ALS to use electronic devices to communicate. There are many software programs and apps available. In addition, most computers have built in adaptive capabilities that can make typing less exhausting, like word prediction programs. Caregivers can also add adaptive mice or special keyboards with larger keys to computers. Some AAC devices can be used to speak as the person types. If the person has lost the ability to type, there are AAC devices that can be operated using eye movement.
Plan Ahead to Voice Bank
Some AAC devices allow people with ALS to use pre-recorded voice files so that they can still communicate using their own voice. Doing this requires some advanced planning and work. While the person can still talk, they can record commonly used expressions, sentences, or phrases as files on a computer. This is called “voice banking.” These recordings can then be transferred to the AAC device when the person can no longer speak. Voice banking also gives family members a recording of the person’s voice, which can be a source of comfort after the person passes away.
If you are a caregiver to someone with ALS, regardless of what stage they are in, you can help them to continue communicating. Look for options that work best for the person’s abilities and budget. Talk to
the person’s doctor about options and referrals to experts who may be able to help.
Sources
https://www.mda.org/sites/default/files/publications/ALS_Caregiver%27s_Guide_P-531.pdf
http://www.alsa.org/als-care/augmentative-communication/
https://www.alsphiladelphia.org/document.doc?id=1994
If you or an aging loved one are considering caregivers in Mason, MI, please contact the caring staff at Seniors Helping Seniors of Lansing. Call today: 517-332-9953.