This is a guest post by one of my most favorite and respected friends, Cindy Nicholls, MS, CCC-SLP, CBIS.
Ms. Nichols s a clinical faculty member at Loyola University Maryland’s Department of Speech-Language-Hearing Sciences. She is a co-founder and facilitator of the Primary Progressive Aphasia Resource and Discussion group, that meets monthly at the Loyola Clinical Center in Columbia, Maryland. I’ve known her for about two years through my involvement with her Resource and Discussion Group.
I place great faith in her clinical judgement and her personal opinions; what she says here is important for anyone who has a speech and language issue, either for onesself or for a loved one.
She can be contacted at firstname.lastname@example.org
Would you like to know the most frustrating statement that a speech-language pathologist can hear?
“I/my spouse was discharged from speech therapy after a few sessions; since it’s a progressive disease, there is nothing they could do”. Even the word “plateau” can raise our blood pressure to dangerous levels. I’ve heard this way too often in my position as a facilitator of a resource and discussion group for people affected by PPA.
The folks who attend our group have typically had the disease for 2-3 years, and their experience
goes something like this: notice something is different with their ability to talk, visit their PCP who may or may not send them to a neurologist, visit to a neurologist who will run some tests and give them a tentative diagnosis of early dementia and may give some meds, more time goes by and their neurologist suggests another neurologist who has some experience with PPA, visit that specialist who runs more tests, confirms the diagnosis and then sends them to an SLP, SLP does more tests and a short course of treatment and discharges them, stating there is nothing more they can do (or the insurance company won’t pay for any more treatment).
Although some research is underway with meds and electrical stimulation, it’s true that there is currently no medical cure or treatment; however, it’s not accurate to say there’s no treatment that is effective. In fact, speech-language therapy is the ONLY accepted treatment for the disease, and, working with an SLP who is trained, can be very effective in not only maintaining but improving communication skills. Treatment should begin early and continue at regular intervals to update the plan of care as the disease progresses.
But, if the disease is going to progress anyway, what can a speech-language pathologist (SLP) possibly do to help? The answer is plenty. The truth is that, just like all neurologists don’t have experience with PPA (it’s a relatively rare disease, thank goodness), not all SLPs have experience with it either. It’s important to find an SLP with experience with PPA; your neurologist likely knows who the most experienced therapists are in your community.
If there isn’t anyone, telepractice can be used to work with someone remotely. Contact the National Aphasia Association or the Association for Frontotemporal Dementia for lists of providers.
For people with PPA, treatment should focus on 3 areas – assisting with word retrieval, providing education to all those involved, and use of compensatory strategies. The key with working with people with PPA is that the content should be HIGHLY PERSONALIZED. People with PPA don’t have time to spend with cookie-cutter exercises from a workbook, such as listing words in a category, like animals (unless the person is a farmer or zookeeper).
This must start with a thorough evaluation – to identify preserved cognitive abilities – often memory and problem solving – and alternate communication channels, such as gestures, writing. But most importantly, an assessment should focus on finding out what the current communication issues are and what topics are most important to the client and family so that those can be addressed directly during treatment. Family members should be very involved in the evaluation stage, but also with the treatment and follow-up, since their communication has been compromised too.
Word retrieval – The role of neuroplasticity is well-researched, and its effects are documented even with Alzheimer’s patients. The idea is that doing a task over and over helps us get better at that task because it actually changes our brain. The key is repetition that is highly relevant to the client.
For the PPA client, this means targeting terms that are important to them – grandchildren’s names, frequently visited places in the community, terms used with their hobby. Once these terms are established, many techniques can be created to help the client work on these, such as flashcards, word books, talking photo albums, or simple lists of words. In keeping with principles of neuroplasticity, they must be practiced regularly and often (family members are key here) and must be HIGHLY PERSONALIZED.
Education – Communication partners need to learn the best ways to both get messages IN to the partner and to get the partner’s message OUT. There are simple, yet effective techniques that will help called supported conversation that should be taught to everyone who is a communication partner. The SLP should also provide information on PPA variants and the expected progression of the disease, including potential issues with swallowing. SLPs can make referrals to other disciplines (PT for mobility, OT for activities of daily living, and psych for depression) and make suggestions for community resources – day programs that may understand this type of disease or support groups in the area. They can also provide information of research programs that the person may qualify for. Again, this information should be HIGHLY PERSONALIZED; family members affected by PPA don’t have time to mess around with what works for someone who had a stroke or another common diagnosis.
Compensatory strategies – these are perhaps the most effective; workarounds can be as simple as using lists of words the person can refer to when stuck, or creating “scripts” for various common situations – visiting the doctor, asking the grandchildren about their day, or just describing their condition to friends.
If the person is comfortable with technology, a device called a speech generating device can be introduced. Usually on a tablet, it contains preloaded pictures/words that the person can use to communicate if they can’t get the words out themselves. It’s vital that the bank of words on the chosen device can be PERSONALIZED with items that are important to the person with PPA. A speech generating device can also be used to “bank” words so the person’s own voice is preserved for later.
There is substantial evidence that increasing communication and avoiding social isolation leads to more communication and social connections. People need people, and maintaining social interaction is an established way to prolong well-being.
So, the next time someone tells you that there’s nothing that will help your loved one with PPA, you’ll know what to say. To me, a plateau is just a place to rest before the taking the next step.