05/07/2026
In the video linked below, Joanne T. Douglas, PhD, a former professor at the University of Alabama at Birmingham, describes her experience living with nonfluent/agrammatic primary progressive aphasia (nfvPPA). Her symptoms began during cancer treatment, initially presenting as reduced capacity for reading and writing, and she was diagnosed approximately two and a half years later.
The progression of nfvPPA led to the loss of her academic career and significantly impacted her daily life. However, through collaboration with her care team, Dr. Douglas developed adaptive strategies to maintain function. By limiting writing to brief, structured sessions (as little as eight minutes), prioritizing tasks earlier in the day, and pacing her energy, she was able to continue producing scholarly work. She applied similar techniques to communication, including planning conversations and using written prompts.
Her experience highlights key principles of palliative and supportive care, including early integration of symptom management, focus on quality of life, and alignment of care with patient goals. Dr. Douglas’s story demonstrates how individualized, goal-oriented strategies can preserve meaning, autonomy, and dignity despite progressive decline, offering a model for care in patients with Frontotemporal Dementia.
To access the video, please go to: https://vimeo.com/1129719945
Password: CPSC
