What Is Lewy Body Dementia And How Does It Affect People

Updated January 11, 2023by BetterHelp Editorial Team

Lewy Body Dementia Can Be Hard To Cope With

Dementia is quite a scary concept. The idea of losing your memories, cognitive skills, and all other brain functions is a bit unfathomable to some, yet it happens to many people in their later years. Dementia is an umbrella term for various diseases that can affect the mind. The most infamous form of dementia is Alzheimer's, but Lewy body dementia, or LBD, is not far behind.

What Is Lewy Body Dementia?

LBD involves abnormal protein deposits, which are named Lewy bodies. The name of this protein comes from Fritz Lewy, a doctor who discovered the proteins and how they affect the mind. Lewy bodies develop in nerve cells, usually in the brain areas associated with memory, movement, and thinking skills. This leads to a decline in mental functions.

LBD affects about 1.4 million people in the US, accounting for up to 20% of all dementia cases,  and is more prevalent in men than women. While it is rare, it's still a terrifying disease that many people want to find a cure for.

The Cause Of Lewy Body Dementia

The exact cause is still out there. There may be a genetic reason for LBD, but more research is needed for a definitive answer. If you have a family with LBD, it may be worth seeing if you are at risk.

Lewy Body Dementia Symptoms

Patients with LBD can experience various symptoms.

  • Hallucinations. These may come first, and they are usually chronic. Visual hallucinations are the most common, affecting up to 80% of people with LBD, but auditory and olfactory hallucinations are also possible.

  • You may feel slower than usual or tremble or shuffle when you walk. Parkinson's disease goes hand in hand with LBD.

  • You may have problems with basic bodily functions. You may sweat more than usual, feel constipated all the time, have trouble with digestion, feel dizzy, and fall.

  • You may have trouble sleeping. Usually, this is due to you trying to act out dreams while sleeping, leading to poor quality sleep and more energy expenditure.

  • Cognitive issues are common with LBD. You may have difficulty thinking or remembering people or events. You may have a short attention span or feel confused all the time.

  • Those with LBD may feel depressed. Not just because they have the disease but because of how it affects the brain. They may experience a feeling of apathy and the loss of all motivation.

LBD gets worse as it progresses. Your memory worsens until you may not remember anything. You may be more prone to injury and have your family or other people support you. Death usually occurs within eight years after symptoms start.

Diagnosing LBD

If you or a loved one is experiencing any of the above, it would be wise to seek a doctor. Diagnosing LBD requires the patient to have a progressive loss in thinking, as well as two other symptoms of the following:

  • Parkinson's disease-like symptoms

  • Hallucinations

  • Inconsistent cognitive function

  • Acting out your dreams while sleeping

You may have a blood test to determine if you have LBD, as there are biomarkers in your blood that can detect it. This isn't the smoking gun that will tell you whether you have LBD, but your doctor will use it in addition to other tests.

LBD is quite rare, so many parts of the diagnostic process involve ruling out other diseases. There are other reasons you may lose cognitive functions; the doctor will rule out anything they can.

Prevention

So far, there is no sure way to prevent LBD. A healthy diet with plenty of exercise may be good for your brain, but it's not a way to avoid LBD if you are prone to it.

Treatment

There is no cure for LBD and no medication to stop or reverse the progression of symptoms. Instead, there are ways to treat the individual symptoms.

There are medications to help the effects of LBD. You may be prescribed rivastigmine, which can help improve your cognitive function. It increases neurotransmitters in your brain, which are linked to memory and other brain functions. It can also reduce hallucinations. This medication is only FDA-approved for Alzheimer's, but some doctors will prescribe it for LBD.

Another medication that your doctor may prescribe is carbidopa-levodopa, which can help with movement, reducing the risk of falling and slow movement. Side effects may include confusion and hallucinations, so monitor usage with the doctor.

When taking medications, it's essential to talk to your doctor regularly. Some medicines may worsen other problems, so having the right balance of drugs to treat all the symptoms is a smart move.

Lewy Body Dementia Can Be Hard To Cope With

Dealing With LBD

If you or a loved one were diagnosed with LBD, it may be a terrifying experience. The idea that your cognitive functions will decline over time is scary enough, along with the idea of losing memories that you hold so dearly. You or your loved one may feel upset, angry, depressed, and scared.

If your loved one has LBD, support them and tell them they can still live a full life. Encourage them to participate in activities that will keep them functioning for as long as possible, including exercise and puzzles.

Living with or caring for someone with LBD requires you to monitor them at all times. You may look away once and then discover that the person with LBD fell and injured themselves or got into another situation.

Don't burn yourself out if you're the caregiver. There are support groups you can reach out to, along with other caregivers or family that can help.

It's difficult for both parties. For the family, it's horrible seeing their family lose all cognitive function. For the person with LBD, it's an awful feeling to know that your golden years will be spent slowly losing your identity.

Seek Help

If you or a loved one has LBD, it may be wise to seek professional counseling. If you have a loved one diagnosed with LBD, a counselor can teach you how to cope with the depression or frustrations you may feel having a loved one with LBD. You may also learn techniques to treat your loved one as nicely as possible. LBD is a disease that requires patience; losing your temper with your loved one is just going to make the problem worse. You need to be compassionate, accepting, and reassuring. For some, this is a natural behavior; others may need professional help.

For the person with LBD, there may be a slew of emotions. A counselor can help the patient accept their fate and learn techniques to slow the progression of LBD. One of the side effects of the disease is the loss of motivation. The patient lets the condition consume them, and they are not motivated to exercise or learn ways to slow down its progression. A counselor can help motivate you to live the longest life possible while accepting your fate.

Online therapy has many benefits for busy caregivers and those dealing with a new diagnosis. You don’t have to worry about being out on a waiting list or getting to an office across town. With online therapy, you attend sessions from the comfort of your home, making the process more comfortable and accessible. 

Research shows that online therapy is effective. One study reported that online treatment led to “significant and clinically meaningful improvements in depression and anxiety scores relative to baseline” after 12 weeks and sustained six months after intervention. If you want to learn more about online therapy, get in touch with a BetterHelp therapist to take the next steps.

Takeaway

One day, we may be able to cure LBD, but for now, we must be patient if we have loved ones with it, and those who have it must be willing to work to slow down its progression. If you think online therapy may be beneficial, get in touch to learn more.

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