Need help with parent who has Primary Progressive Aphasia

Primary progressive aphasia is a rare brain disorder which, unlike “standard” aphasia, deteriorates over time and the person slowly loses the ability to communicate.

My mother has been diagnosed with primary progressive aphasia. It apparently started several years ago. It was considered “fluent” aphasia at first but at this point she can barely speak, write or communicate. She has had therapist-led speech therapy, home computer-based speech therapy and drug treatment with Piracetam/Nootropyl but nothing has helped her condition. Brain scans don’t show anything unusual and the neurologists haven’t offered any suggestions for helping her. I’ve done a lot of Google searching but found nothing promising. I feel that I’ve run out of options now and don’t know what to do next.

My father is her primary care-giver and I worry about both of them. When I visit them I try to offer additional suggestions to help her but he feels he’s done enough and told me not to bother him about it anymore. I pre-paid for 50 speech therapy session for her about a year ago at a speech clinic 10 minutes from their house. He never bothered to take her to any sessions. For reasons I’m not able to determine neither he nor my brother care at all that she has almost completely lost her ability to communicate. Trying to deal with my mother’s disability and the rest of the family’s reluctance to help her is having a very bad effect on me.

Does anyone have experience dealing with someone with this problem?
Can you provide any suggestions for helping someone with this disorder?

Wow.

Standing here flatfooted with no suggestions.

I took care of my parents when my mother had Alzheimer’s and my father was physically going downhill. And he did not see that she was losing abilities, he saw her as refusing to act as his wife should. This made the job a lot harder.

I think you could use an expert in problems of this sort, that is a social worker.

I wish you and yours the best.

Hi there,

I work with service dogs and with “Animal Assisted Therapy” Dogs. We have seen great things in working with aphasia patients and dogs for therapeutic purposes.

You can contact the Delta Society and ask them to put you in touch with someone who handles and works with a therapy dog in your area and see if you could book some one-on-one visits with your mom.

It won’t reverse the condition, but we’ve certainly seen some great improvements in the therapeutic process when therapy dogs get involved and help out :slight_smile: It’s always less frustrating to try and communicate with an animal than it is with people…

Take care,

Elly