Following my slow recovery from submitting my thesis (yes!!!) a number of the speech and language therapy students working on the BCPPA project with me having been writing some great posts. Recently @ChloeRush17 broached her own fears to discuss why to blog, and @conniebaird_ discussed her experiences of poetry and dementia. Here Jen @jenSLT_ summarises a really interesting article about what partners observed as the early symptoms of primary progressive aphasia. Importantly Jen does this in plain English. This is a great way to share research, by making it accessible for everyone. Often research and academic writing is so complex it is difficult for people who are not experts in the area to understand what the research is actually saying:
People with progressive conditions (such as dementia) and their families often want to know what symptoms to expect and what their lives will be like in the future. They also want to know what can help. It’s very common nowadays to go online to try and find out more about a condition. The problem is that it can be hard to access the latest research at home. Some websites make you pay to read research articles. Some research articles use complicated language.
That said, it is really important to find ways to share research results with the public using clear language. It is also important to involve people with first-hand experience of conditions in research studies. I recently listened to a lady named Annette Dancer talking at a conference. Annette had a stroke around 5 years ago, which has affected her speech. Annette is now working as an advisor on a speech research project. She talked about how important it is to share research in clear language, so that more people can understand it and get involved. Check out her blogs about what it feels like to have speech difficulties and being involved in research.
In this blog, I have taken a really interesting research article from 2018. It is 11 pages long, so I thought it might be good to create a short summary of the results in plain English.
The purpose of the article
Primary Progressive Aphasia (PPA) is a dementia where language difficulties are the leading symptom. Yet not much is known about the early signs that a person might have the condition.
A person’s partner may be the first to pick up on a change in communication or behaviour. The researchers interviewed 13 partners of individuals with PPA to find out what early symptoms they remembered.
The results of the article
Here are the most common signs reported by partners for the different variants of PPA.
Semantic variant:
- Having trouble understanding or finding the names of common words. This might be inconsistent in early stages.
- An example would be the person with PPA trying to ask their partner where their umbrella is, but not being able to find the word ‘umbrella’. Or, not understanding the word ‘coffee’ when said to them.
- Social behaviour changes. This means the person might find it harder to work out what other people are thinking or feeling and respond appropriately. This happens at the same time as changes in language. This can include mood swings or coming across as uninterested in what others are saying. Interests that couples once shared in common might be lost.
- An example would be the person with PPA not really taking part in chit chat with their partner anymore.
- An example would be the person with PPA not really taking part in chit chat with their partner anymore.
- Getting lost in familiar places. The person with PPA might not recognise places they have been to many times (like their workplace) or be able to find their way around a familiar setting.
- An example would be getting lost in their regular supermarket or not recognising the road they live in.
- An example would be getting lost in their regular supermarket or not recognising the road they live in.
Logopenic variant:
- Social behaviour changes. This means the person might find it harder to work out what other people are thinking or feeling and respond appropriately. This happens before changes in language are noticed. It is sometimes described as the person “switching off”.
- An example would be not showing as much interest in talking to family and friends, or not being as intimate with their partner.
- Word finding difficulties. This means the person will find it tricky to find the word they want to say and it may take them quite some time.
- An example would be not being able to get out the name of a place they have been to, or ‘talking around’ a word (giving a definition, saying words with similar meanings).
- Attention difficulties. This was less common than the other signs. This might mean the person finds it harder to concentrate and routine tasks take longer to do.
- An example would be the person with PPA not being able to do paperwork as quickly they used to or making errors.
Non-fluent agrammatic variant:
- Speech and language difficulties. This was the earliest, most noticeable sign for partners. This includes difficulties saying sounds, putting sentences together and using grammar.
- An example would be the person with PPA saying “go street” instead of “let’s go down the street”.
- Social behaviour changes. This means the person might find it harder to work out what other people are thinking or feeling and respond appropriately. This happens later on, after changes in speech and language. Changes in social behaviour can be more subtle than in the other variants.
I hope the summary is useful to readers who don’t have access to research journals or don’t like lots of jargon. It’s been a useful activity for me to do as it really makes you think about how to explain things in a concise, understandable way – something which is key to being a good speech and language therapist. Thanks for reading!
References:
Pozzebon, M., Douglas, J., and Ames, D. (2018) Spousal recollections of early signs of primary progressive aphasia. International Journal of Language and Communication Disorders, 53(2), 282-293.