Chronic Traumatic Encephalopathy (CTE) and Related Dementia: Causes, Symptoms & Caregiving

Chronic Traumatic Encephalopathy (CTE) is a brain disease that mostly affects athletes and military veterans who have suffered repeated hits to the head. CTE is a progressive and neurodegenerative disease, meaning symptoms worsen as it spreads across the brain. Aggression, moodiness, and a loss of motivation are symptoms commonly associated with CTE, and the disease can result in dementia. Like dementias including Alzheimer’s disease, CTE cannot be cured. Unlike Alzheimer’s, the cause of CTE is known: it has never been found in the brain of a person who did not have a history of head hits.

Causes of Chronic Traumatic Encephalopathy (CTE)

CTE is a degenerative brain disease caused by clumps of a protein called tau. Tau is naturally occurring and binds cells in all our brains, but after repeated head injuries it becomes bunched and tangled. Those tangles spread across the brain and kill its ability to function properly.

CTE affects mostly athletes and soldiers because its only known cause is multiple hits to the head. One bad concussion does not cause CTE; it takes repeated blows. The disease has been found in the brains of people who experience hundreds or even thousands of impacts. Boxers who take punches, football players who knock against each other at the snap of the ball, and military personnel who face violence and explosions are at risk of developing CTE. The sports most commonly associated with CTE are the following:

Again, a big concussion will not give someone CTE, and athletes who have never been diagnosed with a concussion have developed CTE. The types of hits that put a person in danger are “sub-concussive,” jarring the brain enough to damage cells but not knocking a person unconscious or causing the other effects of a concussion like dizziness, vomiting or ringing in the ears. A soccer player who heads the ball doesn’t feel like she’s just damaged her brain, but enough of those headers over several years put a person in danger of developing CTE.

Symptoms, Diagnosis, and Mortality

The symptoms of CTE come on slowly and usually appear in a person’s late 20s or early 30s. In the early stage of the disease, they include:
– Loss of impulse control
– Apathy, lack of motivation
– Moodiness
– Aggression
– Depression
– Anxiety
– Paranoia

Over time, CTE worsens like other progressive dementias. The symptoms become these:
– Suicidal thoughts
– Impaired judgement
– Memory loss
– Withdrawal
– Inability to concentrate
– Confusion

Diagnosis is not possible until after death, when a brain can be removed and analyzed. (A special chemical is applied to brain tissue, causing tau clumps to become visible.) This means doctors cannot accurately determine if someone has CTE based on symptoms or an examination. Seeking a diagnosis is still important, however, because neurological exams and brain scans can determine whether symptoms are caused by something else, like a different kind of dementia.

Though CTE has been linked to high-profile suicides by former professional football players, studies did not find a causal link between CTE and suicide. In fact, despite being five times more likely to develop dementia than the general population, former football players actually have a lower mortality rate. CTE, therefore, may destroy a person’s ability to think but is not necessarily fatal.

How CTE Compares to Alzheimer’s Disease

While Alzheimer’s disease overwhelmingly affects people who are older than 65, the average age for the onset of CTE symptoms is much younger, usually in the late 20s or 30s. CTE has even been found in the brains of teenagers. CTE is also different in that the cause is definitively known. Alzheimer’s has been linked to hereditary genes (someone with a family history of Alzheimer’s is slightly more likely to develop symptoms), but experts still don’t know exactly what leads a person to developing the disease. CTE, on the other hand, has never been found in the brain of someone who didn’t have a history of repeated head hits. Someone who avoids sub-concussions throughout life, in other words, will not develop CTE. The first symptoms that appear for someone with Alzheimer’s are usually memory problems, whereas CTE’s earliest symptoms are related to judgement, reasoning, impulsive behavior, and aggression.

Treatments

There is no cure for CTE, and the disease cannot be directly treated because it can’t be diagnosed until after death. If someone with a history of head hits is suspected as having CTE, the closest thing to treatment is identifying symptoms and targeting those.

Behavior Therapy
This may be useful for learning to manage mood swings. Regular exercise and good nutrition will help a person maintain the highest quality of life as symptoms worsen. Studies show diet and exercise can improve mood and energy levels.

Medications
Drugs that might help with symptoms include cholinesterase inhibitors that strengthen communication between brain cells and have been shown to benefit people with dementia by mildly improving memory and alertness.

Antipsychotics and Antidepressants
Antipsychotics and Antidepressants might stabilize mood and could possibly help with symptoms like paranoia and aggression, but the side effects of these drugs are powerful, so it’s important to only take medications that have been prescribed by a doctor after careful examination of a person’s symptoms.

Caregiving at Home

It is very important, first of all, to not argue with a loved one who has all the signs of CTE. When the brain is damaged, it means someone is unable to properly understand and react to things happening around them. The parts of the brain that make judgements are hurt, so logic or right and wrong don’t matter. Caregivers must remember that it’s the disease making their loved one angry or apathetic or confused, not any choice that person has made.

Memory loss comes on later with CTE than other symptoms like aggression and depression, so someone who has the disease may understand that the illness is destroying the ability to think and feel clearly. A sense of pessimism or even doom can come over someone with CTE, and so it is vital that a caregiver remain positive. Remind your loved one that they’re OK right now, today, and try to give hope.

More practically, caregivers should try to establish a routine throughout the day, having meals and activities at around the same time. People with diseases that affect cognition, including CTE, show fewer symptoms when their days are predictable.

Other tips for caregiving:
– Play games that strengthen memory
– Keep rooms uncluttered and brightly lit
– Go outside regularly
– Exercise
– Prepare nutritious meals

Residential Care for Persons with CTE

CTE has only been identified in the last 15 years, so the memory care community is still catching up. If your loved one has a history of head impacts and presents signs of CTE, symptoms may worsen to a point where caregiving at home becomes too difficult.

Assisted living and memory care communities may be an option. These residences are for long-term care of people who need help with activities of daily living like going to the bathroom or getting dressed. Assisted living provides personal care service with room and board, regular meals, and structured activities. Memory care is similar to assisted living but with security and services that are more specifically for people with dementia. Staff in memory care homes receive training to specifically serve the needs of people with dementia.

Assisted living may be a better option if your loved one is exhibiting earlier signs of CTE and does not present a danger to anyone. When symptoms worsen to where memory loss and withdrawal are more of a problem, memory care is probably the better option.

Studies have shown that professional football players are four times more likely to develop Alzheimer’s disease than the general population. Because the brains of National Football League players have been shown overwhelmingly to exhibit signs of CTE after death, this suggests that someone with CTE is at much higher risk. Caregivers, therefore, should think about where their loved one can live when dementia symptoms become too much for one person to handle at home. People with progressive dementia (including Alzheimer’s) eventually need a level of care that can only be met in assisted living or memory care. If there are other health issues that require continuous care, a nursing home may be the best option.

To be sure a residence is the right fit, it’s important to start the process of finding a home early. Visit assisted living and memory care communities and ask specific questions about whether they can meet the needs of a person who exhibits signs of CTE. Because symptoms come on so much earlier for people with CTE than Alzheimer’s, your loved one might seem younger and stronger than others living in residential care, but the right residence could make a huge difference in health and well-being.