If you have a loved one who has experienced repeated head injuries, you may have heard of chronic traumatic encephalopathy (CTE) dementia. CTE dementia is a type of brain disorder that affects some people who have had multiple concussions or other forms of head trauma. CTE dementia can cause changes in memory, thinking, personality, and behavior that can interfere with daily life.
CTE dementia is not very common, but it is more likely to occur in people who play contact sports (such as football, boxing, or rugby) or serve in the military. These activities can expose the brain to repeated impacts that can damage the brain cells and cause abnormal protein deposits called tau. Tau is also found in other types of dementia, such as Alzheimer’s disease, but CTE dementia has a distinctive pattern of tau accumulation that can be seen only after death.
The main purpose of this article is to provide you with information and guidance on CTE dementia, including its symptoms, diagnosis, treatment, and prevention. We will also share some tips and resources for coping with the challenges of caring for someone with CTE dementia. We hope that this article will help you understand CTE dementia better and support your loved one with compassion and dignity.
Diagnosis
One of the biggest challenges of CTE dementia is that it cannot be diagnosed with certainty while a person is alive. The only way to confirm CTE dementia is by examining the brain tissue after death and looking for the specific pattern of abnormal protein deposits called tau. This means that people who have CTE dementia may not know for sure what is causing their problems, and doctors may not be able to provide them with an accurate diagnosis or treatment.
However, there is some hope for improving the diagnosis of CTE dementia in the future. Researchers are working on developing tests that can detect CTE dementia in living people, such as specialized brain scans, blood tests, or other biomarkers. These tests are not yet widely available or validated, but they may offer a way to identify CTE dementia earlier and more reliably.
In the meantime, doctors can use a set of criteria and methods to diagnose a condition called traumatic encephalopathy syndrome (TES). TES is a clinical disorder that may reflect underlying CTE, but it is not the same as CTE dementia. TES is based on the history of repeated head trauma, the presence of certain symptoms and signs, and the exclusion of other possible causes.
Some of the symptoms and signs of TES and CTE dementia include:
Cognitive changes include memory loss, confusion, difficulty concentrating, poor judgment, and dementia.
Behavioral changes: such as aggression, impulsivity, irritability, violence, and criminal behavior.
Mood changes, such as depression, anxiety, apathy, and suicidal thoughts.
Motor changes: such as tremors, slowness, stiffness, balance problems, and difficulty speaking or swallowing.
These symptoms and signs can vary from person to person and may worsen over time. They can also overlap with other neurological conditions, such as Alzheimer’s disease, Parkinson’s disease, or post-traumatic stress disorder. Therefore, it is important to consult a doctor who can thoroughly evaluate and rule out other possible causes. A doctor may use a combination of medical history, physical examination, mental status testing, neurological exams, and brain imaging to diagnose TES and monitor its progression.
Staging
Staging describes how severe and advanced a disease is. It can help doctors and patients understand the disease’s prognosis or the likely outcome. It can also help guide the treatment and care options for the disease.
CTE is a progressive disease, which means it gets worse over time. Researchers have identified four stages of CTE based on the amount and location of abnormal protein deposits called tau in the brain. Tau is a protein that normally helps brain cells function, but in CTE, it forms clumps that damage and kill the brain cells.
The four stages of CTE are:
Stage I: Mild CTE. Tau deposits are mostly found in the frontal lobe, which involves planning, decision-making, and impulse control. Symptoms may include headaches, difficulty concentrating, and mood changes.
Stage II: Moderate CTE. Tau deposits spread to other brain areas, such as the temporal lobe, which is involved in memory and language. Symptoms may include memory loss, depression, anxiety, and explosive behavior.
Stage III: Severe CTE. Tau deposits are widespread throughout the brain, affecting many functions and abilities. Symptoms may include cognitive impairment, executive dysfunction, and difficulty with balance and movement.
Stage IV: Advanced CTE. Tau deposits are dense and extensive, affecting most of the brain. Symptoms may include dementia, motor neuron disease, and Parkinsonism.
The stages of CTE may correlate with the symptoms and signs of CTE and dementia, but not always. Some people may have more or fewer symptoms than expected for their stage of CTE, symptoms that do not match the typical pattern of CTE, or no symptoms at all, even if they have tau deposits in their brain. Therefore, staging is not a definitive way of diagnosing or predicting CTE but rather a tool for understanding the possible progression and severity of the disease.
Providing Safe and Effective Care
People with CTE dementia deserve to receive care that is respectful, compassionate, and tailored to their unique needs and preferences. Providing individualized, person-centered, and holistic care can help improve their quality of life and well-being and reduce the stress and burden of caregiving for their family members and friends.
CTE dementia can pose many challenges and complications for both the person with the condition and their caregivers. Some of the common issues that may arise include:
Agitation: The person may become restless, irritable, or angry for no apparent reason. They may pace, shout, or lash out at others.
Aggression: People may become verbally or physically abusive towards themselves or others. They may hit, kick, bite, or throw things.
Depression: The person may feel sad, hopeless, or guilty. They may lose interest in activities they used to enjoy or isolate themselves from others.
Anxiety: The person may feel nervous, fearful, or worried. They may have panic attacks, phobias, or obsessive-compulsive behaviors.
Sleep problems: The person may have trouble falling, staying, or waking up. They may have nightmares, sleepwalks, or experience sundowning (increased confusion and agitation in the evening).
Falls: The person may struggle with balance, coordination, and movement. They may trip, stumble, or lose their footing.
There is no cure or specific treatment for CTE dementia, but there are some strategies and interventions that can help manage these problems and enhance the person’s comfort and safety. Some of the possible approaches include:
Creating a safe and structured environment: The person’s living space should be familiar, comfortable, and free of clutter and hazards. It should have adequate lighting, ventilation, and temperature. It should also have reminders and cues to help people orient themselves and perform daily tasks.
Establishing a routine and regular activities: The person should have a consistent schedule of meals, medications, personal care, and rest. They should also have opportunities to engage in meaningful and enjoyable activities that match their abilities and interests, such as hobbies, games, music, or exercise.
Communicating clearly and calmly: The person should be addressed by their preferred name and spoken to respectfully and gently. They should be given simple and direct instructions, one step at a time. They should also be encouraged to express their feelings and needs and be listened to with empathy and patience.
Providing reassurance and support: The person should be praised for their efforts and achievements and comforted when distressed or frustrated. They should also be reassured of their identity, safety, and security and reminded of their loved ones and positive memories.
Using non-drug and drug therapies: The person may benefit from non-drug therapies, such as aromatherapy, massage, music, or pet therapy, to help them relax and cope with their symptoms. They may also need drug therapies, such as antidepressants, antipsychotics, or sedatives, to help them control their mood and behavior. However, these drugs should be used with caution and under the supervision of a doctor, as they may have side effects or interactions.
Seeking professional help and advice: The person should have regular check-ups and consultations with their doctor and other health care providers, such as neurologists, psychiatrists, psychologists, or therapists. They may also need referrals to specialists or services, such as occupational therapists, physiotherapists, speech therapists, or home care agencies.
Accessing resources and support services: The person and their caregivers may benefit from various resources and support services that provide information, education, guidance, and assistance. Some of the possible sources include:
The Alzheimer’s Association offers a 24/7 helpline, online tools, support groups, care consultations, and educational programs for people with dementia and their caregivers.
The Veterans Affairs provides health care, benefits, and resources for veterans and their families.
Providing safe and effective care for people with CTE dementia can be challenging, but it can also be rewarding and fulfilling. By following these strategies and interventions and seeking help when needed, caregivers can make a positive difference in the lives of their loved ones with CTE dementia.
Care for the Caregivers
Caring for someone with CTE dementia can be a rewarding and fulfilling experience, but it can also be physically, emotionally, and financially demanding. Caregivers may face many challenges and difficulties, such as:
Feeling overwhelmed by the responsibilities and demands of caregiving
Experiencing stress, anxiety, depression, anger, or frustration
Having less time and energy for themselves and their own needs
Feeling isolated or lonely or losing social support and connections
Having conflicts or disagreements with family members or friends
Facing financial problems or difficulties accessing resources and services
Feeling guilty or regretful for not doing enough or making mistakes
Grieving the loss of the person they knew before CTE dementia
Caregivers need to take care of themselves as well as their loved ones. Self-care is not selfish; it is essential for maintaining health and well-being and for providing quality care. Caregivers should seek help when needed and not hesitate to ask for support or assistance. Some of the ways that caregivers can take care of themselves include:
Getting enough rest and sleep
Eating a balanced and nutritious diet
Staying physically active and exercising regularly
Seeing a doctor and getting regular check-ups
Taking breaks and respite from caregiving
Pursuing hobbies and interests that bring joy and satisfaction
Joining a support group or talking to a counselor or therapist
Seeking professional help and advice from health care providers, social workers, or lawyers
Accessing resources and support services, such as home care, adult day care, or respite care
Educating themselves and learning more about CTE dementia and caregiving
Caregivers can also cope with the stress, grief, guilt, and isolation that may accompany caregiving by:
Practicing relaxation techniques, such as breathing exercises, meditation, or yoga
Expressing their emotions and feelings, such as writing in a journal, drawing, or painting
Seeking comfort and solace from their faith or spirituality
Reaching out and staying connected with family members, friends, or other caregivers
Seeking and accepting help and support from others, such as relatives, neighbors, or volunteers
Being compassionate and forgiving towards themselves and their loved ones
Celebrating their achievements and accomplishments, and recognizing their strengths and abilities
Finding meaning and purpose in caregiving and appreciating the positive aspects of the relationship
Caregivers can also maintain a positive and meaningful relationship with their loved ones by:
Respecting their dignity and autonomy and involving them in decisions and choices
Communicating clearly and calmly and listening with empathy and patience
Showing affection and love and expressing gratitude and appreciation
Sharing memories and stories and reminiscing about the past
Engaging in activities that are enjoyable and stimulating, such as music, games, or puzzles
Creating new memories and experiences and celebrating special occasions
Adapting to the changes and challenges and being flexible and creative
Focusing on the present and the person, and not the disease or the symptoms
Caregiving for someone with CTE dementia can be challenging, but it can also be rewarding and fulfilling. By caring for themselves and seeking help, caregivers can cope with the difficulties and enhance the quality of life for themselves and their loved ones.
Hospice Care for Your Loved One with CTE
If your loved one has CTE, you may feel overwhelmed, scared, angry, or sad. You may wonder how to cope with their personality, behavior, and abilities changes. You may also worry about their physical and mental health and your own. You are not alone in this journey. Hospice care can help you and your loved one with CTE.
Hospice care is a type of care that focuses on making people comfortable and peaceful when they have a severe illness that cannot be cured. Hospice care does not try to cure the illness or prolong life but rather to ease the pain and suffering of the person and their family. Hospice care can be provided at home, in a hospice facility, or a nursing home.
Hospice care can benefit your loved one with CTE in many ways. Hospice care can:
Provide medical care to manage the symptoms of CTE, such as pain, nausea, seizures, infections, and breathing problems.
Provide emotional and spiritual support to help your loved one cope with the feelings and questions that CTE may bring, such as fear, anger, guilt, or loss of faith.
Provide social support to help your loved one stay connected with family, friends, and community and enjoy the activities and hobbies that they love.
Provide practical support to help your loved one with daily needs, such as bathing, dressing, eating, and moving around.
Provide respite care to give you a break from caregiving so you can rest, recharge, and care for yourself.
Signs and Symptoms that Indicate Hospice Care May Be Appropriate for Someone with CTE
CTE is a condition that gets worse over time and can affect different parts of the brain. There is no cure for CTE, and no treatment can stop or reverse the damage to the brain. However, some treatments can help with some of the symptoms of CTE and improve the quality of life of the person and their family.
Hospice care is a type of care that can help people with CTE and their families when the symptoms become severe, and the person is near the end of their life. Hospice care can provide comfort, support, and dignity to the person and their family.
Some of the signs and symptoms that may indicate that hospice care may be appropriate for someone with CTE are:
The person has frequent or severe headaches, seizures, or strokes that are not controlled by medication or other treatments.
The person has difficulty with walking, balance, speech, swallowing, or breathing, which affects their ability to function or causes them distress.
The person has severe memory loss, confusion, or dementia that makes them unable to recognize their family, friends, or surroundings or to communicate their needs or wishes.
The person has severe mood or behavior changes, such as aggression, depression, impulsivity, or suicidal thoughts or actions that are not controlled by medication or other treatments or that put them or others at risk of harm.
The person has lost interest or pleasure in the activities and hobbies they used to enjoy or has withdrawn from their family, friends, and community.
The person has other severe medical conditions, such as heart disease, diabetes, or cancer, that worsen their prognosis or complicate their care.
The person or their family has decided to stop or limit treatments that aim to cure or prolong life and to focus on treatments that provide comfort and peace.
The Importance of Hospice Care for People with CTE and Their Families
CTE is a challenging and heartbreaking condition that affects not only the person who has it but also their family, friends, and caregivers. CTE can cause physical, emotional, social, and spiritual pain and suffering for the person and their loved ones. Hospice care can help ease this pain and suffering and provide hope and healing.
Hospice care respects the dignity and wishes of the person with CTE and their family. It does not try to cure CTE or prolong life but rather to make the person comfortable and peaceful in their final days. Hospice care also supports the family and helps them cope with the loss of their loved one.
Hospice care can provide many benefits for people with CTE and their families, such as:
Improving the quality of life of the person with CTE by relieving their physical symptoms, enhancing their emotional well-being, and honoring their values and preferences.
Improving the quality of life of the family by providing them with education, guidance, counseling, and respite care, and by helping them prepare for the death of their loved one and grieve their loss.
Reducing the costs and burdens of care by providing the person with CTE and their family with the services and supplies they need at home or in a hospice facility and by reducing the need for hospitalizations or emergency visits.
Increasing the satisfaction and peace of mind of the person with CTE and their family by involving them in decision-making, respecting their choices, and ensuring their comfort and safety.
Hospice care is a gift of love and compassion that can make a difference for people with CTE and their families. If you or your loved one has CTE and is considering hospice care, talk to your doctor or a hospice provider about your options and wishes. Hospice care can help you and your loved one live with dignity, comfort, and hope until the end.
Conclusion
CTE dementia is a type of brain disorder that affects some people who have had repeated head injuries. It can cause changes in memory, thinking, personality, and behavior that can interfere with daily life. CTE dementia is not very common, but it is more likely to occur in people who play contact sports or serve in the military. CTE dementia cannot be diagnosed with certainty while a person is alive. Still, doctors can use criteria and methods to diagnose a condition called TES, which may reflect underlying CTE. CTE dementia is a progressive disease, and researchers have identified four stages of CTE based on the amount and location of tau deposits in the brain. Tau is a protein that forms clumps that damage and kill the brain cells. There is no cure or specific treatment for CTE dementia. Still, some strategies and interventions can help manage the symptoms and complications and enhance the comfort and safety of the person with CTE dementia. Providing individualized, person-centered, and holistic care is important for improving the quality of life and well-being of the person with CTE dementia and their caregivers. Caregivers also need to take care of themselves and seek help when needed. They can cope with the stress, grief, guilt, and isolation that may accompany caregiving by practicing self-care, seeking support, and maintaining a positive and meaningful relationship with their loved ones.
The key messages and take-home lessons for the readers are:
CTE dementia is a severe and complex condition that can affect anyone who has had repeated head trauma, but especially those who play contact sports or serve in the military.
CTE dementia can cause a variety of symptoms and signs that can vary from person to person and worsen over time. Common symptoms and signs include cognitive, behavioral, mood, and motor changes.
CTE dementia is difficult to diagnose and treat, but there are ways to improve the diagnosis, care, and support for people with CTE dementia and their caregivers.
CTE dementia can have a significant impact on the person with the condition and their caregivers. Still, there are ways to cope with the challenges and difficulties and enhance both parties’ quality of life and well-being.
CTE dementia is a preventable condition, and there are ways to reduce the risk and protect the brain from further damage.
Some of the suggestions for future research and action on CTE dementia are:
Developing and validating tests, such as specialized brain scans, blood tests, or other biomarkers, can detect CTE dementia in living people.
Finding and testing drugs or therapies that can slow down, stop, or reverse the progression of CTE dementia or alleviate the symptoms and complications.
Conducting more studies and trials on the causes, risk factors, prevalence, and outcomes of CTE dementia and the effectiveness of different interventions and treatments.
Raising awareness and education among the public, the media, the health care providers, and the policymakers on CTE dementia and its prevention, diagnosis, and management.
Implementing and enforcing policies and regulations that can reduce the exposure and incidence of head trauma, such as helmet use, concussion protocols, and limits on contact sports or military activities.
We support and fund the research and advocacy organizations working on CTE dementia and related issues, such as the Alzheimer’s Association, the Brain Injury Research Institute, the Concussion Legacy Foundation, the National Institute of Neurological Disorders and Stroke, and Veterans Affairs.
CTE dementia is a challenging and complex condition that requires more research and action. By learning more about CTE dementia and its prevention, diagnosis, and management, we can help improve the lives of people with CTE dementia and their caregivers and create a safer and healthier future for everyone.
