It is often assumed that people with dementia cannot benefit much from speech and language therapy. People may consider their memory so impaired that they are unlikely to be able to retain what they learn in therapy. However people with primary progressive aphasia don’t present with cognitive difficulties in the first few years of the condition.
Primary progressive aphasia is the language variant of fronto-temporal dementia. People with primary progressive aphasia do report cognitive difficulties as the dementia progresses and affects more neural networks. Yet language remains the most significant area of difficulty for some time.
There are three internationally recognised variants of primary progressive aphasia that align with three different language profiles (Gorno-Tempini et al, 2011).
Semantic variant primary progressive aphasia results in difficulties in word meanings- affecting both comprehension and expression.
Logopenic variant primary progressive aphasia results in difficulty in word retrieval and is often considered an impairment in the phonological buffer.
People with non-fluent agrammatic variant primary progressive aphasia present with difficulties in phonological assembly and may demonstrate apraxic features. They may also find syntax difficult to use and understand.
The research evidence around interventions for primary progressive aphasia is limited and is dominated by impairment based, word relearning therapies. Much of this work having been done by neurologists and psychologists. Kindell et al (2015) highlighted that speech and language therapists working with people with semantic variant primary progressive aphasia are likely to choose a number of different clinical approaches above and beyond word relearning therapies.
So what can speech and language therapists do for people with primary progressive aphasia? The following list provides a few ideas about the variety of approaches that can prove useful (summarised from Volkmer, 2013):
Word relearning interventions are valuable for people with primary progressive aphasia (particularly in the mild-moderate stages), as long as they are tailored to the individual’s needs. This means that people with semantic impairments will benefit from semantic feature analysis type tasks, using words relevant to their real lives, and reinforced by images and objects from their own homes and environments. In comparison people with non-fluent agrammatic variants may benefit more from a phonological approach. Carthery-Goulart et al (2013) have written an excellent summary.
Reading and writing are likely to become difficult as primary progressive aphasia progresses and exercises such as reading aloud, using devices and apps to provide feedback on accuracy (even simple cover and write systems) can assist.
Communication aids are really important for people to consider as early as possible (or as early as they are able). iPads or Android tablets and phones can be extremely effective in supporting people with non-fluent agrammatic primary progressive aphasia to express themselves. They can also act as a word finding tool and an image log e.g. to create a photo based shopping list for a person with semantic variant primary progressive aphasia. Low-tech aids are just as useful for others. Communication aids can often be developed from initial therapy materials e.g. a list of names or words can be fed into a future aid.
Functional communication for accessing the community is vital to maintaining independence and living at home. Approaches such as script training, communication aids and environmental strategies (education of local communities for example) can enhance independence. Tailoring these to the individuals needs is vital to maintaining a self-management approach and increasing confidence in the self.
Conversation is extremely important for people with primary progressive aphasia and their families. Conversation allows valuable interactions, maintains ‘roles’ in life, supports relationships and is important for everyday exchanges. Conversation is also vital for independence and maintaining self-confidence. Conversation training for the person with primary progressive aphasia and their immediate loved ones is reported as the most commonly used therapeutic strategy for speech and language therapists working with primary progressive aphasia.
Conversation is also the area that I am most interested in. My research is focused on developing a free online training program for speech and language therapists working with people with primary progressive aphasia and their families. It will be called Better Conversations with Primary Progressive Aphasia (BCPPA). The resource will provide a program of 4 sessions- including session plans, handouts and activities. The sessions focus on supporting people with primary progressive aphasia and their families to identify the barriers and facilitators to conversations in videos they have made of their own conversations. BCPPA will be piloted across three National Health Service (NHS) trusts in the United Kingdom over the next 2 years as part of my NIHR funded PhD.
I am hoping to contribute to the research evidence so watch this space over the next few years. The BCPPA resource will also be developed to include further guidance on other issues (such as the different types of primary progressive aphasia, planning for the future and measuring outcomes).
Watch this space: In order to spread the word about this work, I am also writing a regular blog about its progress which you can access here.