I am not that kind of doctor but I’m going to take a brief look at the symptoms of several types of dementia and CTE so we can all be better informed about the impact on the affected person and those around them. This is not exactly a happy read so please feel free to take care of yourself. This came about because we were chatting about the differences and Hoss said it sounded like an article.
Dementia
This is, perhaps, the classic condition, to which we’ll compare everything else.
Dementia is, strictly, a syndrome rather than a disease. That is, it is a collection of symptoms resulting from damage to the brain from any of a number of causes. This means, depending on the exact underlying cause, someone with dementia will present differently – when you read the list of symptoms, if you’re a medical professional caring for people with dementia, you might see some of these hardly present at all, others really strong in one patient, then in the next person an almost opposite set of symptoms.
Dementia is typically diagnosed in people aged over 65. Now that 65 is a more normal age to reach and remain active the former name of senile dementia has been changed, but it’s still regarded as a disease of older people.
Common Symptoms
Bearing in mind you’re not likely to have all of these, you’re likely to see some of the following. In early dementia:
- memory loss
- difficulty in concentrating
- problems carrying out familiar daily tasks
- struggling to follow a conversation
- being confused about time and place
- mood changes
These typically start mild and get worse very slowly. Whilst we see some of these as signs of “getting old” dementia is not normal, it is a pathological process and you should seek help.
In later dementia:
- severe memory problems – not recognising close family and friends or where you live
- communication problems – you may lose the ability to speak
- mobility problems – may need a wheelchair or be confined to bed
- behavioural and psychological symptoms of dementia (this is the clinical term, because there’s a distinct pattern of these symptoms)- increased agitation, depression, anxiety, wandering, aggression, hallucinations.
- bladder and bowel incontinence
- loss of appetite and weight
Diseases that are part of Dementia
There are several diseases that are part of the dementia umbrella. Some of them emphasise parts of the symptoms above, some add specific new little wrinkles.
Alzheimer’s Disease
Alzheimer’s disease tends to lead to more severe memory loss, issues with communication (repetitive speaking, problems finding the right word), difficulty with numbers and anxiety.
Vascular Dementia
This can, delightfully, be rapid onset or slow. It can present like a stroke – muscular weakness or paralysis, movement problems and adds thinking/reasoning problems and mood changes.
Dementia with Lewy bodies
Lewy bodies are abnormal aggregations of proteins in neurons. They’re observed in patients with Parkinson’s disease and this form of dementia as well as some other conditions.
People with this form on dementia have many of the symptoms of Alzheimer’s disease but add unusual patterns of being sleepy, alert and confused, visual hallucinations, repeated falls and fainting, slower movements (if you think of the Parkinson’s shuffle this is not quite right, but it’s similar).
Frontotemporal dementia
Having said at the top dementia is a disease of older people, most people with frontotemporal dementia are diagnosed between 45-65. The frontal and temporal lobes are anatomical regions of the brain, which is where the name comes from. People with frontotemporal dementia have personality changes and a loss of social awareness – these are broadly similar, they seem to lose sensitivity to other people’s feelings and lack tact or a sense of decorum. They may, however, become withdrawn. They will often become obsessive, developing fads for unusual foods or overeating/drinking and may have problems understanding words.
Premature Onset Dementia/Young Onset Dementia
With the exception of frontotemporal dementia, dementia is only diagnosed in people over 65. If you present with all the symptoms and you’re under 65 it’s called Young Onset Dementia.
By and large this is a matter of the calendar, but there are some other impacts, some positive and some negative. Some of these work related – you may struggle to meet work deadlines – which may not apply if you’re over 65, but you may also be physically fitter and there is some evidence that walking and physical activity can help reduce the onset of symptoms. Whilst “missing work deadlines” may not sound like a disaster, overall this condition can be bad enough to force retirement through disability and completely mess up the rest of your life.
Chronic Traumatic Encephalopathy (CTE)
As the name suggests, CTE typically occurs if you’ve had repeated blows to the head. That doesn’t necessarily require concussions – they’re a sign of very strong blows – but many blows that don’t cause concussions may cause CTE. Here, we’re obviously aware of people playing contact sports – boxing, martial arts, football, rugby and American football – but repeated blast injuries from military service and repeated physical assault (e.g. from domestic violence) are also known to cause CTE.
CTE typically begins about 10 years after the head trauma. Since professionalism, rugby players have been retiring in their early 30’s and we’re seeing signs in many of those affected in their early 40’s.
Whilst some people may see early signs and slowly worsen, it’s more common for the symptoms to rapidly worsen. They may then stabilise or continue to very gradually worsen.
Initial signs of CTE are usually:
- mood changes – typically depression or suicidal thoughts
- personality changes
- behaviour changes – often becoming more aggressive
When the condition worsens, whether that’s quickly or slowly, you can add:
- short-term memory loss
- confusion – getting lost, not knowing the time of day
- difficulties with planning and organisation
- problems with movement
CTE vs Dementia
If you compare the symptoms, not a happy task, CTE appears to have a subset of the symptoms of dementia. But there are some differences too.
That probably shouldn’t surprise us. They’re all reflective of damage to the brain, however different the causes might be. Dementia is more of an overarching term, we should probably compare CTE more to something like vascular dementia, a specific disease. While the symptoms are distinctly different, we can see that both can progress quickly or slowly and have a relatively short list of symptoms. Different parts of the brain have been damaged, but there are relatively unique outcomes.
Impact on those around you
Touch wood, I’ve been lucky enough not to have known anyone affected by any of these forms of dementia, nor by CTE. They all seem tragic to me. Is it more tragic if you’re struck down by CTE in your early to mid 40’s than by Alzheimer’s disease when you’re 70? Maybe. You’re more likely to have relatively young children who may be of an age to struggle to understand what’s going on. You’re likely to be affected, and affect those around you, for longer as well. But that doesn’t make it less heartbreaking for the families of someone older, who have to rearrange their lives to care for their elderly, confused and forgetful relative.
The difference is, so far as we know, CTE, at least CTE from rugby, is an unexpected outcome from playing sport. You can’t call being the victim of domestic violence and I suspect not being subject to blast injuries in the military “choices” but playing rugby is a choice, often one parents make for their children and then young adults make as their first career.
Looking Forward
World Rugby introduced the High Tackle Framework in 2019. It’s been updated a few times since. Given the 10 year delay between head injuries and the onset of CTE, we will have to wait until at least 2029 to see if that’s had any effect.
Endnote
I’m not going to cite sources. A lot of this information came from the NHS website, www.nhs.uk. I dived into a few review articles as well to round out the information, but the NHS is trying to present information to the public and was very useful.
In Australia the government’s resource list is at https://www.health.gov.au/topics/dementia/dementia-resources and Dementia Australia also offers a lot of information https://www.dementia.org.au.
Obviously I’m not in a position to really evaluate either of these, if there are better alternatives please add them in the comments and I will try to update the list here.
