What is dementia? Part 4 – Understanding Aphasia

who knowsIn my continuing series on What is dementia?, Part 4 I promised to review aphasia. It suddenly seems more relevant to me as well just now too; I was diagnosed with PPA when first diagnosed with a front temporal dementia, although had seemed to stave off the progression with speech pathology techniques. However in this last few weeks, it is getting noticeably worse, and my ability to read, hand write, understand others, comprehend what I read and speak is becoming much more difficult.

Many types or causes of dementia also have similar symptoms such as memory loss, and can include varying types of aphasia. The National Aphasia Association in the USA defines aphasia like this:

“Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is always due to injury to the brain-most commonly from a stroke, particularly in older individuals. But brain injuries resulting in aphasia may also arise from head trauma, from brain tumors, or from infections. It is experienced by the groups of dementia under the FTD category, but is also seen in some types of Alzheimer’s disease.”

The Mayo Clinic simply defines it like this: “Aphasia is a condition that robs you of the ability to communicate. It can affect your ability to speak, write and understand language, both verbal and written.”

Dr Ronald C. Petersen, M.D., Ph.D., has just done a whirlwind tour of Australia visiting five cities in almost as many days as part of the Alzheimer’s Australia Dementia Awareness Month 2016 activities. His staff profile at the Mayo Clinic says, “he focuses on investigations of cognition in normal aging, mild cognitive impairment and dementia. Dr. Petersen and his colleagues evaluate cognitive changes in normal aging as well as in a variety of disorders involving impairment in cognition, such as Alzheimer’s disease, frontotemporal lobar degeneration and Lewy body dementia. He directs the Mayo Clinic Alzheimer’s Disease Research Center and the Mayo Clinic Study of Aging, both of which involve the study and characterization of aging individuals over time with an emphasis on neuroimaging and biomarkers.”

Yesterday I asked Ron is aphasia a symptom of brain injury, stroke or some dementia, or is it an actual type of dementia. He explained that aphasia and the other dementia related types of aphasia such as Primary Progressive Aphasia (PPA) are symptoms of the injured area of the brain, and not themselves a type of dementia. It is though, complicated, and many websites seem to imply it is a type of dementia, some patients even get told they have PPA dementia, to add to the confusion.

The Mayo Clinic clearly states, “the main treatment for aphasia is speech and language therapy” so I wonder why then, all people with dementia are not routinely referred to a speech pathologist at the point of diagnosis?????

It is extremely confusing though, as for example, Neura Australia states that “Progressive Non-fluent Aphasia is a form of FTD, and that frontotemporal dementia (FTD), includes behavioural variant FTD (bvFTD), Semantic Dementia (SD), Progressive Non Fluent Aphasia (PNFA), Logopenic Progressive Aphasia (LPA), Corticobasal Syndrome (CBS) or Progressive Supranuclear Palsy (PSP)”.

Dr Petersen said yesterday that the aphasias were not actually dementias, and for example, it is now thought that LPA may in fact be a symptom of one of the rarer types of Alzheimer’s disease and not FTD (or at least, that is my recollection!).

I’d really love for a group of world researchers and clinicians to WORK TOGETHER in collaboration, and come up with one set of easy to understand fact sheets on all of the different types or causes of dementia – and what is a dementia versus what is a symptom of dementia.

This particular blog has been challenging to write, and I apologise for the confusion about aphasia, and whether some of the types of aphasias are dementias, or symptoms of dementia. I’m still unclear, as although I had thought any type of aphasia was a symptom of stroke, brain injury and some types of dementia, they are not an actual type or cause of dementia.

If anyone out there can provide us all with a simple, accurate definitive on this, I’d be very grateful and happy to be educated!

This video does give quite a good insight into what it is like living with aphasia;

29 thoughts on “What is dementia? Part 4 – Understanding Aphasia

  1. Thanks for sharing this kate-very helpful and wow i had no idea what Asphia was until now!I love writing comments on your blog and you inspire me to strive achieve so much for Dementia!Good on you!x👍

    • I had no idea what it was like until I was diagnosed with it Sam! Most people don’t, even those working in dementia, as everyone thinks it is all about memory loss, and it is not even about that, it is about changes to how we recall memory, rather than memory loss. Take care

  2. And I agree that aphasia is a general descriptive term. What causes it to be more or less difficult to treat depends on the cause and the type of damage to the brain, & where that damage is located..

    For example, for my mother it was useful to learn to talk around the word that she couldn’t find, whereas for V with LPPA that strategy is a waste of effort -but word relearning with associated images works.

    I think the difference between a Dx of FTD/PPA and other dementias is that language issues become critical early on. For many other forms of dementia language remains intact for much longer and may not be a major symptom.

    But ultimately yes, everyone with a dementia diagnosis ahould have access to dementia-knowledgeable SLTs, and OTs, and PTs….and…and….The real problem is that after the shock of the Dx has slightly subsided who wants to do the rounds of appointments, more tests, to feel examined constantly? That’s why we need a counselling follow-up, so we can talk through what we understand about the Dx, its possible pathway (if we want to know) and can plan as a team how to manage it.

    • The lack of access, after Dx to speech pathologists and other allied health professionals, including rehabilitation, is a major breach of our HUMAN RIGHTS … which you already Know I believe!! x

      • Kate & AmazingSusan, I’ve been chatting lately with V’s SLT, the wonderful Cathleen Taylor, about some education sheets that she’s been developing to explain the different variants of PPA. She expects to publish them by the end of the year.
        As you may have gathered, aphasia is a pet subject of my reading and personal experience. The Mayo definition of aphasia is very general and would apply to my late mother’s aphasia ( due to TIAs) and to V’s PPA Dx.
        In terms of the dementias, PPA is most usually a type of FTD. We can usually see from an MRI which parts of the brain are shrinking. Language, however, is not just located in particular areas of the brain, but involves whole neural networks.
        Since 2008 when Gorno-Tempini & Mesulam defined the logopenic variant (which V has) there’s been a lot of work going on.. As you so rightly say, Kate, the logopenic variant is most often caused by AD pathology, not tau (shown post-mortem). Most people (more than 60%) with PPA-L have the AD type, which is why it’s known as “Atypical Alzheimers”. Pr John Hodges (NeuraFrontier Australia) doesn’t see it as part of the FTD spectrum in most cases, for that reason.
        NeuraFrontier had diagnosed about 400 people nationally with PPA-L by early 2014. The estimated life span, based on that sample, remains at 6-8 years depending on how early the Dx was made and, of course, the individual. V has passed the 5 year mark (how I wish it were a milestone, as for cancer).
        PPA-S (semantic) and PPA-G (agrammatic/non-fluent) are the other variants of PPA. Some people with PPA-G quickly lose the ability to produce speech but their understanding is well-preserved unless sentences are too long or complex. They may say the reverse of what they mean. Some people with PPA-S lose the meaning of words for familiar objects.
        (Taken from North-Western’s excellent descriptions: What is Primary Progressive Aphasia (PPA)? http://www.brain.northwestern.edu).
        However, I can tell you that V often says the reverse of what she means and that she doesn’t know the “name” for many familiar objects, so go figure!
        The diagnostic process of determining the particular variant of PPA can be quite detailed. In V’s case it took nearly 3 days of neuropsych testing and another MRI AFTER she had the PPA Dx (which took 3 days as an in-patient in a neurology ward). Last year a study by Henry, Wilson & Gorno-Tempini found a way to distinguish PPA-L from the other variants of PPA in just 10 minutes, through analyzing phonological processing (www.ncbi.nlm.nih.gov/pmc/articles/PMC4855288/). I’m excited by this, as I think this will lead to people diagnosed with a PPA variant to engage earlier with enablement programs for their specific language/communication difficulties.
        What actually happens to language and what can be done about it is very different for all 3 variants.

  3. Kate dearest, This is fabulous. I read it with Veda.
    She commented that the short Mayo definition of PPA assumes that communication is just about verbal/written language, and I think that assumption underlies a lot of the stigma and public embarassment that people living with PPA often feel. It’s worse than being in a room full of people speaking a foreign language who ignore you (and I sure remember how horrible that was!)

    The NeuRAFrontier definition follows the work they are doing on FTD. I’ll post Hodges’ recent talk on it with their clients & family/friends. Basically he was saying that FTD covers a spectrum of disorders that concern primarily language or behaviour, with many crossovers into movement/perceptual symptoms.
    He considers PPA logopenic as a “special case” (Atypical Alzheimer’s) because of the cell pathology. That’s why Memantine has been useful for V.

    My mother developed expressive aphasia (the SLT descriptive term) as the result of multiple TIAs. She narrowly escaped being locked up in an end stage dementia ward….just because she couldn’t express herself in words.

    V had special issues to begin with as she had severe dyslexia and dyscalcula. 10 years ago she could read but didn’t do it much. Her writing was a mix of capitals & small letters. She could read & send short sms.

    So it was the changes in her verbal language that signaled something else.

    It’s up to the rest of us to learn to communicate differently & to learn to use assistive technology.
    BTW V liked the video. xx

  4. Great post, Kate, and thanks so much for shining more light on this aspect of dementia. My mother has aphasia, and it seems that we (I’m her primary caregiver) are now finding a way to read each other’s body language and energy as a way of augmenting our communications. The video gave me an idea – I’m going to download an app and see if I can help her communicate better via a digital tablet. As a medical writer, I know that the science and the technology are just not there yet; we don’t comprehend the brain well enough to understand the dynamics of aphasia. Most of the info out there is sophisticated guesswork.

    Your point about getting speech therapy is spot on. People with dementia are largely ignored when it comes to interactive solutions, because too many think – what’s the point? Well, as long as people like you and me are in the picture (and our friend Susan Macauley, of course), I think we can help make a difference. I wish you courage and laughter.

  5. This is a great series, Kate! The time and research you’ve done are really helpful. You are right all of the different diseases, symptoms, diagnosis can be overwhelming. For my personal understanding, I take a non-clinical approach or the Narrative Perspective. This perspective suggests that although the medical diagnosis is important, it only tells a fraction of an individual’s story. Especially with aphasia, when we understand the person’s environment and listen to the tones in their “speech” we can begin to understand their needs and emotions at that time. If interested, the book Geriatric Mental Health by Dr. Donna Cohen and Dr. Carl Eisdorfer is a great read! Thank you!!

  6. Hi Kate and all. I thought of sharing this. My brother was born with brain atrophy, delayed in talking and walking and was having a form of aphasia since childhood. But he was smart even while not being able to talk, he was able to understand better than the normal children in his Kg class; his teacher was surprised that he would bring the things that she asked for, while the normal children would not! He is much better now, compared to previously, due to the early speech pathologist support and the other extensive training that he received in his specialist school. He talks well now, but you can say by listening to him that he has a bit of difficulties. I think he should continue seeking the speech pathology support even now, and I am sure he would benefit. Thankfully, he drives and work now, not married yet. People loves him 😘

    • I like this comment Fatimah… “He is much better now, compared to previously, due to the early speech pathologist support and the other extensive training that he received in his specialist school” – people with dementia deserve the same specialist support. xx

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