Communication in FTD Daisy Sapolsky, MS, CCC-SLP Speech-Language Pathologist MGH Department of Speech, Language and Swallowing Disorders & Reading Disabilities MGH Frontotemporal Disorders Unit

Topics Subtypes of FTD Communication challenges Compensatory strategies MGH FTD Unit and Progressive Communication Disorders Program

Terms Aphasia An acquired communication disorder that impairs a person's ability to process language, but does not affect intelligence. Can have impairment in one or more areas: speaking understanding others reading writing/spelling speech: language: what words mean, combining words into meaningful and grammatical sentences, using words in ways that are appropriate to the context (you may use different wording when you’re speaking with your boss and when you’re speaking with your spouse) http://www.aphasia.org/

Terms Primary Progressive Aphasia (Mesulam, 1982) A language disorder (“aphasia”) that worsens over time (“progressive”), and is the most prominent problem the person experiences (“primary”) speech: language: what words mean, combining words into meaningful and grammatical sentences, using words in ways that are appropriate to the context (you may use different wording when you’re speaking with your boss and when you’re speaking with your spouse)

Subtypes of FTD

Progressive nonfluent aphasia (PNFA) agrammatism nonfluent speech, may be telegraphic hesitant, effortful, pauses, hesitations, fillers (e.g., umm) difficulty with verbs and functor words (e.g., the, for, an, to) knowing what you want to say, but can’t think of the word or can’t get the word out comprehension is (typically) intact there may be difficulty in comprehension of complex syntactic forms

Progressive nonfluent aphasia (PNFA) impaired reading and writing difficulty with forming grammatically correct sentences difficulty with reading complex sentences; comprehension of single words usually intact or, writing may be significantly better than speech in some patients spelling difficulty yes/no confusion pronoun confusion

Progressive nonfluent aphasia (PNFA) picture description: “Umm, you know, the umm, the family for uh the picnic...umm...maybe the Cape...you know, the umm, like sailing and fishing and umm the ah, uh, girl is umm, the umm, the sandcastles, and umm the picnic man’s reading a book and umm the lady is uh, wine, and you know, like summertime, summertime.”

Picnic scene picture Western Aphasia Battery-Revised (Kertesz, A., 2007)

Subtypes of FTD

Semantic dementia (SD) loss of knowledge of the meanings of words lower frequency/uncommon words most affected “What is a ___?” use of vague/general words (e.g., stuff, thing) speech content has an empty quality lack of detail, common/vague words but, speech is fluent and grammatical

Semantic dementia (SD) picture description: “There’s a guy and a dog and this, and then there’s a girl and another dog, and something. And, they’re eating. This is the...I should know that because I always do it...I always know that usually.”

Subtypes of FTD

Logopenic Progressive Aphasia (LPA) intermittent word-finding hesitations impaired naming phonemic paraphasias (saying words or nonwords that share some sounds with the correct word) “octible” for octopus “rackel” for racquet “glow” for globe

Logopenic Progressive Aphasia (LPA) picture description: It looks like a family is, has a hou, uh, I think it’s a house or a friend’s place, on the leck lake...Uh, and uh, there’s somebody who’s uh finishing, uh, fishing...Uh some friends are in the boat, in the so, sailboat, sail, sailboat...They uh, the mother is putting some, I’d like to think it’s wing uh wine...

Subtypes of FTD

Behavioral variant FTD (bvFTD) As patients may do well in testing, they are often not thought to have a primary speech/language disorder. However, the hallmark changes in behavior and personality directly affect daily communication and functioning, and therefore can result in a communication disorder.

Behavioral variant FTD (bvFTD) apathetic variant flat affect, emotional blunting not expressing emotion, not understanding or reading someone else’s emotion withdrawal, loss of interest (apathy) not engaging in conversation or previously enjoyed activities lack of initiation only speaks when spoken to

Behavioral variant FTD (bvFTD) disinhibited variant saying inappropriate things or in an inappropriate way inappropriate increase in talking press of speech not reading social cues that someone is not interested in the conversation or is ready to stop the conversation compulsive behaviors

Topics Subtypes of FTD Communication challenges Compensatory strategies MGH FTD Unit and Progressive Communication Disorders Program

Common communication challenges knowing what you want to say but the words won’t come out → frustration able to express basic wants and needs, but difficulty with higher-level conversation “I miss the discourse.” feeling rushed and pressured to get your thoughts out may result in withdrawing from social situations one patient said she doesn’t want to make people wait for her to come up with words

Common communication challenges communicating the problem to friends and family, people at work carrying out routines and activities difficulty reading and writing may mean the loss of previously enjoyed and practical activities adjusting to new communication style “I used to be a fast talker.”

Topics Subtypes of FTD Communication challenges Compensatory strategies MGH FTD Unit and Progressive Communication Disorders Program

Example compensatory strategies key words and semantic cueing patient provides key words instead of attempting to say full sentences patient describes the concept/word using semantic features 5 w’s template helps patient organize thoughts visual guide multiple-choice questions partner asks multiple-choice or yes/no questions

Example compensatory strategies visual materials use a newspaper headline, photo, or other visual material as conversation topic elaboration help patient elaborate on previous response gesture (e.g., past, future, yes/no, size, shape)

Example compensatory strategies pre-written “scripts” write brief scripts to be used in specific situations practicing may reduce the pressure of the moment can be used to read from or to show to the partner Please pump $20 worth of gas. How was your vacation to Paris? I need to find a dress to wear to a wedding. I need to return these shoes because they didn’t fit.

Example compensatory strategies communication book primary or supplementary communication update topics/formats as needed point to pictures/words: people (family members, friends) places (shops, restaurants) food activities emotions time/date

Example compensatory strategies slow down – both patient and partner patient has more time to think of words and organize thoughts allows patient time to process what is being said to him/her relieves the pressure of a fast-paced conversation

Example compensatory strategies Identify barriers to functioning in the home or workplace and be creative in brainstorming solutions e.g., a patient with non-fluent speech allows calls to go to voicemail, enabling her to take time to formulate a response, write a script, or send an e-mail response

Example compensatory strategies Identify activities, hobbies, and volunteer opportunities that have low demand on language (arts, music, gardening). Discuss when a job or responsibility is no longer manageable. Create an action plan to leave the situation.

Example compensatory strategies Prompt the patient to use any means of expression gesturing, writing, drawing, pointing to pictures or words, facial expression Refer to an AAC (Augmentative & Alternative Communication) center For apraxia of speech, try traditional motor speech strategies

Example compensatory strategies Some patients have reported success! From an e-mail: Script for a phone conversation for friends, a business, and doctors - I practice the script until I can speak decently. Gestures, facial expression, and body language...two-thumbs-up, wave, and five high slap...and dance around with my body. Syllable attack is very helpful. I break down the long word into syllables and practice them slowly. Then I quicken my speed until I can pronounce the word properly... They (strategies) are helpful. It takes a long time to practice a script on the phone but it pays off. The reward is speaking more normally...not perfect!

Strategies: Behavioral variant Set up situations and routines that allow the patient to respond to others, instead of needing to initiate communication themselves Brainstorm ways to engage the patient in activities and communication

Strategies: Behavioral variant Break down tasks into manageable steps that are not overwhelming (e.g., setting the table) daily calendar/schedule to provide a list of activities and to-do items do this together so that the patient has input phone message template

Topics Subtypes of FTD Communication challenges Compensatory strategies MGH FTD Unit and Progressive Communication Disorders Program

MGH Progressive Communication Disorders Program goals of the evaluation: identify strengths and weaknesses in speech/language abilities, compensations already in use, communication partners, and what is/isn’t working in daily life develop functional goals: to maintain and enhance communication; and to prepare for future decline goals of the therapy program: teach/practice compensatory strategies to facilitate communication in everyday situations educate the patient/partner about the diagnosis and implications for communication brainstorm suggestions for modifying the environment to facilitate communication troubleshoot barriers to communication and participation provide check-ins and ongoing support program structure: individual sessions that vary in frequency and duration for patient and partner “tune-up” sessions to review strategies and determine if another round of therapy is warranted group therapy to practice strategies within a comfortable setting and to meet others