It’s Primary Progressive Aphasia,” the neurologist said. “I’m afraid there’s nothing we can do.”
I worked with someone recently who was given this devastating information. For several months she’d had numerous tests, hospital admissions, scans and appointments while her increasingly concerned family watched her symptoms change and develop.
But this was the final outcome: “Nothing we can do.”
Firstly, what is Primary Progressive Aphasia?
The family I was working with had never heard of it. Have you?
I work as a speech and language therapist with a special interest in dementia and it’s my business to know about it. But that doesn’t necessarily mean I’ll have seen it before.
According to Alzheimer Scotland it even has other names –‘ Progressive Non Fluent Aphasia (PNFA), for example, is a condition that affects a person’s ability to use language. It forms part of a group of related conditions referred to as Frontotemporal dementia (FTD for short)’.
This constantly changing terminology can be confusing and often makes accessing information more difficult.
For that family that day in the doctor’s office, it only added to their feeling of uncertainty and bewilderment. And a simple leaflet from the surgery was never going to cover all the areas of anxiety.
Alzheimer Scotland also says: “Currently, there is no cure or specific treatment for PNFA. There may be ways to treat some of the symptoms but these will depend on the individual’s needs.”
Yet there is a therapeutic army out there who could potentially help with some of the symptoms and work with individual’s needs.
This army comprises allied health professionals (AHPs) who are trained to deal with a wide array of difficulties.
You’ll have heard of all of them but may not have considered them as players on the same team – occupational therapists, physiotherapists, radiographers, podiatrists, art or music therapists, radiographers, dieticians, orthoptists, orthotists, paramedics and speech and language therapists.
A recent AHP policy document called’ Connecting People, Connecting Support’ outlines how this therapeutic army can improve support for people with dementia, their families and their carers, to enable them to have positive, fulfilling and independent lives for as long as possible.
When dementia becomes every allied health professional’s business and the workforce is skilled and knowledgeable in best dementia care, it can be transformative.
The woman with Primary Progressive Aphasia went home with the leaflet she couldn’t understand and wondered about her future.
I had an appointment booked with her and visited her at home two days later. Using simplified language with visual cues and gesture, she was able to discuss her confusion and fear.
We made regular plans for appointments and set goals together. Each week, we added to a communication book about her life with key words and phrases she could turn to if she felt ‘stuck.’ She looked out old photographs and we talked about family events and happy memories.
She agreed to write down three things she did each day so she could use the speech she had left to chat with her husband each evening. We plan to develop this into a video diary to record her diminishing voice.
She was losing weight so I referred her to the dietician. I shared the most successful ways to communicate with the dietician prior to her visit. This resulted in a comprehensive and detailed assessment, together with a diet plan to encourage her eating, and it was quickly implemented. She may require the skills of the occupational therapist in future to enable her to manage in the kitchen. Perhaps the physiotherapist will be asked to help with mobility or the podiatrist can offer appropriate footcare.
We researched PPA together and she began to understand the condition. She told me she was feeling more positive and hopeful. She started to live well again with her diagnosis.
Nothing we can do?
The AHP army is mobilised and ready for action, integrating the ambitions of Connecting People, Connecting Support to our everyday practice
Alzheimer Scotland: Progressive Non-Fluent Aphasia Information Leaflet https://www.alzscot.org/assets/0002/…/Progressive_Non_Fluent_Aphasia
Alzheimer Scotland (2017) Connecting People Connecting Support
Speech & Language Therapist