Until last week, few people knew the term aphasia. The recent announcement that the actor, Bruce Willis, has stepped back from his acting career, due to aphasia, has raised a much-needed spotlight on persons living with aphasia and their families.
Conservative estimates suggest that more than 100,000 Canadians are living with aphasia.1
Aphasia affects all areas of life
Aphasia results from an injury or neurodegenerative process that affects areas of the brain involved in language, including formulating ideas; selecting words and organizing them into sentences; speaking; understanding; reading; and writing. In the case of stroke, disruptions in blood flow to the brain can cause aphasia.
Different types of aphasia
Aphasia can be mild and only affect a single aspect of language or it can be so severe that it significantly limits the ability to express and understand simple, familiar words. Whether mild or severe, aphasia can cause serious communication difficulties and limit the ability to participate in everyday activities.
There are many different types of aphasia. What has not been widely reported to date is the fact that aphasia is also associated with some forms of dementia.
Primary progressive aphasia (PPA) is a rare form of dementia in which the early and predominant symptoms are disruptions to language abilities that disturb communication and can have a devastating impact on affected persons and their families. While other cognitive impairments develop over time, such as memory changes or behaviour changes, language difficulties are a persistent and problematic symptom over the course of the disease.
Aphasia is a focus area for ONDRI
The Ontario Neurodegenerative Disease Research Initiative (ONDRI) and its scientists are helping to better understand aphasia in the context of dementia, as a result of stroke and other diseases.
Dr. Angela Roberts, an ONDRI scientist,2 and faculty member in the School of Communication Sciences and Disorders and Department of Computer Science at Western University, recently reported that conversation difficulties are a significant predictor of caregiving burdens in primary progressive aphasia.
“David will often interrupt a conversation that he’s adjacent to, but not part of, with a comment or a word that jumps into his head, as he’s afraid he’ll forget it,” said Jill Czuczman, a member of ONDRI’s Patient and Community Advisory Committee and a care partner to her husband who is living with frontotemporal dementia and showing signs of PPA.
She continues: “He will often use the wrong word to describe an object, even when looking right at it. He will say microwave when he means fridge, orange instead of pineapple. This was extremely disturbing and stressful when he was first diagnosed. I have learnt the best way to keep communicating is to ignore the errors and continue the conversation without correcting.”
Centering your intention on the importance of ‘connecting’ with your loved one and focusing on understanding the ‘gist’ of a message versus the accuracy of the words used, can be an effective communication strategy for care partners living with aphasia.
Speech-language therapies can help
Speech-language therapies can support families and may help improve everyday function for persons living with aphasic dementias. Person-centered communication strategies, language exercises, and technology devices for supporting communication can help persons with aphasia remain connected to their friends and family members.
Important research continues
Dr. Roberts and her colleague Dr. Emily Rogalski at the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease at Northwestern University in Chicago, Illinois recently completed enrollment for the Communication Bridge-2 study, the largest randomized control trial of speech-language therapy for persons with primary progressive aphasia. Delivered through telehealth, the Communication Bridge-2 study enrolled participants from four countries including Canada, New Zealand, the United Kingdom, and the United States. Results of the trial are expected to be published in 2023.
Looking to the future
ONDRI scientists and their partners are working on multiple streams to improve the health of Canadians living with aphasia associated with dementia, such as:
• using advanced data analytics to develop better tools for detecting aphasia as an early sign of dementia
• understanding care partner burdens associated with dementia
• identifying neural and genetic signatures of dementia
• advancing care in their clinical practices
ONDRI supports the Willis family and all families living with aphasia, offering hope as they travel this journey.