Many of you have seen the information our clinic has shared about our new PPA support group and are wondering, “What is PPA?”
Primary progressive aphasia is a rare and lesser-well-known type of dementia resulting in the loss of communication skills over time.
NOT the Same as “Aphasia”
PPA should not be confused with the freestanding term ‘aphasia,’ which is NOT progressive. ‘Aphasia’ occurs after a stroke or brain injury when the communication areas of the brain are damaged, but since strokes and brain injuries are static events and are not progressive, these individuals can get better with rehab. They will not get worse over time.
Primary progressive aphasia, on the other hand, involves a progressive deterioration of the brain, beginning with the language portions, which are usually housed in the left hemisphere of the brain for most people. PPA can occur at any age but most frequently occurs in adults ages 40-50 and then slowly progresses from there. PPA is not caused by any one single event like a stroke or brain injury like aphasia is.
Different areas of communication skills are impaired first in different people with PPA. For example, for some of my clients, reading or writing skills are the first reported changes noticed. In this example, a first symptom might be noticing increased difficulty spelling familiar words when making out a grocery list. For others with PPA, the first symptom may involve a word-finding difficulty where they notice that words feel like they’re on the tip of their tongue. For one of my current patients, the first thing she noticed was odd word substitutions for words that either sounded similar (e.g., ‘house’ for ‘horse’) or had a similar meaning. Some may notice difficulty with verbal fluency, where their sentences come out very slowly and with more effort than before.
Common initial signs of PPA could include the following:
Difficulty with word-findingIncreased difficulty reading, writing, or spellingSubstitutions of words for other words (e.g., “toothpick” for “Q-tip”)Slow speech with hesitationImpaired comprehension of either written or verbal language
In each individual with PPA, symptom progression will look very different, as we can’t predict which communication areas of the brain will be affected first, next, and so on. In the later stages, most areas of both receptive and expressive language are eventually affected, so both speaking and understanding what others are saying will likely become extremely difficult. All types of dementia (primary progressive aphasia, Alzheimer’s, etc.) all start to look similar in the later stages when more widespread areas of the brain are damaged; therefore, in the later stages, memory and other cognitive abilities are often affected in addition to communication skills. However, since PPA is specifically a language based type of dementia, memory is usually relatively spared early on, unlike other forms of dementia where it’s often a characteristic first symptom.
What can be done to help with PPA?
While the damage of PPA can’t be reversed, there are some strategies and techniques to improve quality of life and maintain current language skills as long as possible.
A speech-language pathologist experienced in PPA can help to implement compensatory strategies (e.g., word-finding strategies to use when getting stuck on a word, etc.) as well as physical aids to assist in daily life functioning and reduce frustration (e.g., keeping a list of commonly purchased grocery items and other functional material in a simple reference notebook).
Structured Treatment Tasks to Stimulate Language
In the early stages, the speech-language pathologist can also give patients structured exercises to target the language areas of the brain to encourage maintenance of current levels for as long as possible. For example, I often suggest for my patients in the early stages of PPA to try to use all language modalities a little bit each day. So, read a little bit out loud, work some crossword puzzles, write a little each day (even something simple like listing 3 things you’re thankful for each day or journaling), etc. to try to keep all language portions of the brain as active as possible for as long as possible.
Another large factor in PPA care is community support. Since PPA isn’t widely known, many people with PPA and their loved ones/ caregivers can begin to feel isolated. Many of my patients with PPA have expressed to me feelings of loneliness and fearfulness about the disease progression. I often hear comments from my patients about them avoiding crowds or certain social situations due to embarrassment of their communication difficulties. Communication is essential to quality of life, and it’s so important to try to maintain relationships even in the presence of PPA. Connecting with others with PPA and their loved ones who understand this condition can be of great value in maintaining these necessary communication skills and social supports throughout the disease progression.
For these reasons, I would encourage anyone with PPA to join a support group, either a local in-person one or an online one (there are some both on Facebook as well as on other external websites that a quick online search will reveal). I am a member of some of the online groups, and I can see firsthand how encouraging the members are to one another. Many of the members frequently express how helpful it is to them having someone to talk to and ask questions to who has been where they are and understands their experiences.
My team and I have recently started a local Tulsa area PPA support group through the Association for Frontotemporal Degeneration (AFTD) here at our clinic. We have a growing list of participants from all around the state of Oklahoma, and we are so excited to help our group members connect with one another. The AFTD has provided us with some fantastic educational and informational resources to provide to our group members, and we’re looking forward to helping our current and new participants any way we can. Our free monthly meetings are held on the third Tuesday of each month at 6:00pm. Click here for more information or to register online. Both those with PPA and/or family and caregivers are welcome to attend.
Help us Educate About PPA by Sharing
Thank you for taking the time to read this and learn more about primary progressive aphasia, particularly if you are not personally affected by it. If you have any questions about anything PPA related, please feel free to ask, and I will do my best to help any way I can. Let’s work together to raise awareness of this lesser known form of dementia that can have such an impact on quality of life.