Karl, a 59-year-old male, was diagnosed with FTD at the age of 54. He has a four-year college degree and was always able to articulate well. Karl has been in a care facility for two years. Initially when Karl entered the care facility, he was able to communicate his needs and understand plans for the day. As the disease progressed, the areas of the brain that control language declined; he became non-verbal except for an occasional word or two. As his ability to express and respond to communication changed, issues his care became a challenge. When asked a question, he responded with a blank stare. When staff called his name, he did not act like he heard them and kept walking. Simple requests were not followed, e.g., “It is time for supper” and “let’s get your teeth brushed.” Family became distressed over his lack of ability to express needs such as hunger, thirst or pain.

The team suggested that Karl be evaluated by a speech therapist. The therapist assessed all modalities of language (reading, writing, listening and speech). By using cards that matched function to objects, she determined that his comprehension was better than his expression. She noted that he did much better in a setting where other distractions were minimized. They invited family to observe and showed them that Karl could answer yes/no or limited-choice questions when they were written on paper. Staff learned to take Karl’s hand, get his attention and lead him to the dining area. They realized he needed time to follow a request to sit down due to the delay in processing. He responded to visual and verbal cues when the staff showed him a toothbrush and made a brushing motion. They used an erasable board or paper and pencil to get a response to limited-choice questions. It was stressed that approach, facial expression and tone of voice are all important to communication.

These interventions empowered the staff, which was reflected in respect for Karl, improved care and quality of life.

Discussion Questions:

1. How does FTD change the person’s ability to express and understand?
2. How did speech therapy help to evaluate the current language ability and assist the staff with ideas for care?
3. What are some of the communication techniques that were used? Can you suggest others?
4. What resources are available for further information?

1. How does FTD change the person’s ability to express and understand?

• People may experience a variety of symptoms related to reception and/or expression of language.
• Problems in the ability to name objects, speak, and write affects expression.
• The capacity to “decode” what others are saying; read and understand written words affects reception.
• Due progressive atrophy in areas of the brain responsible for language, the ability of the resident to communicate will decline. The plan of care has to be adjusted.

2. How did speech therapy help to evaluate the current language ability and assist the staff with ideas for care?

• Provided a systematic assessment of all modalities of language for comprehensive picture.
• Used techniques to identify hidden strengths as well as weaknesses.
• Approached communication as shared activity between Karl and staff/family with emphasis on how caregivers can facilitate it, e.g.: reducing competing stimulation and distractions, patiently allowing time to process information.
• Suggested forms of communication other than speech and modeled them for staff/ family: demonstrating with hand motions; using props, picture and diagrams.

3. What are some of the communication techniques that were used? Can you suggest others?

• Insuring Karl’s full attention by limiting distractions in the environment.
• Personal care was assisted by visual and verbal cuing – leading Karl to the sink, giving him the toothbrush, making a brushing motion.
• Using touch – taking him gently by the hand and leading him to the dining area.
• Using writing tools to elicit answers to short sentences or questions with limited choices (yes/no responses).

Other suggestions:

• Deliberately approach the person in a calm way, patiently, and with a pleasant tone of voice. Responding to a resident’s blank stare and lack of response to verbal requests with impatience or annoyance could contribute to an anxious or agitated response.
• Use of routine or rituals for easing daily care
• Use the same terms consistently for care issues, for example in toileting
• Singing – changing the words to familiar tunes or adding music may be helpful in gaining cooperation.
• Technology – iPads and software programs like Proloquo2Go (www.proloquo2go.com/) are getting increased attention to aid communication. They may be helpful for some people with early primary progressive aphasia (PPA), but require other skills and set-up support to use effectively. A speech therapist could assess for potential benefit.

4. What resources are available for further information?

• The Association for Frontotemporal Degeneration (http://www.theaftd.org/)
• The National Aphasia Association (http://www.aphasia.org/)
• Aphasia Research Project at University of Arizona (http://slhs.arizona.edu/research)
• Northwestern University: Cognitive and Alzheimer’s Disease Center (http://www.brain.northwestern.edu/)
• University of California at San Francisco Memory and Aging Center (http://memory.ucsf.edu/)