Lewy body dementia is the second most common form of dementia in the United States. It affects more than 1.4 million people. However, it is also the most misunderstood, and is difficult to diagnose.
The disease is caused by abnormal deposits of proteins called alpha-synuclein in the brain. The accumulation of these proteins leads to progressive cognitive and physical decline, typically over a period of many years.
While diseases like Alzheimer’s are identified through memory loss and cognitive decline, Lewy body dementia is characterized by a number of potential symptoms. These include varying periods of confusion, inattentiveness, hallucinations, and sleep difficulty. The hallucinations caused by the disease may be non-threatening, and thus may not need to be treated with medication. Hallucinations and all presenting symptoms should be discussed with healthcare providers for best symptom management.
Sleep disturbances and visuospatial impairment are also more likely to occur in the initial stages. Over time, people with Lewy body dementia may also experience gait imbalance, tremors, and stiffness—symptoms that overlap with Parkinson’s disease.
The overlap with Parkinson’s is so strong, that today there are two diagnoses for Lewy body dementia. These are dementia with Lewy bodies (DLB) and Parkinson’s disease dementia. The two differ by which symptoms show up first. For DLB, cognitive symptoms appear initially, while physical symptoms appear first for Parkinson’s Disease Dementia.
There is presently no cure for Lewy body dementia, but there are treatments available to address the disease’s symptoms.
Living the best possible life, post-diagnosis
A Lewy body dementia diagnosis can be daunting, but having a full life does not have to stop there. Many people live happy lives for years after diagnosis. Here are some tips to make each day better.
Educate and involve your loved ones
Living with Lewy body dementia in the family or within your closest circle entails emotional, physical, and even financial challenges. To help your loved ones better understand the changes in your behavior, cognition, and movement, it is advisable to inform them about your diagnosis.
You can explain to them that you have been diagnosed with a brain disorder, and that you will need more of their help as the disease progresses over time. Involving trusted friends and family members will grant you a valuable support system. Keeping in touch with your closest friends and family, and making time to socialize will also help to slow the progression of the disease, and benefit your emotional well-being.
As part of your communication to others, be aware that many people have a misperception that having dementia is the same as having Alzheimer’s disease. They may unintentionally have the wrong perception of what your symptoms, progression, and needs will be. Be sure to educate those close to you, especially those people you will rely on for support over time.
Seek therapy
Lewy body dementia can take its toll on your physical abilities and mental health. Taking proactive steps can help you better manage both your physical and mental needs and keep a feeling of control.
Work with a physical therapist to help maintain your strength and flexibility post-diagnosis. Meanwhile, an occupational therapist to provide you with strategies for getting through day-to-day tasks.
A psychiatrist or psychotherapist can also help you work through behavioral and emotional challenges. It’s normal to feel stressed and anxious when learning to live with dementia. Openly accepting and dealing with the stress can be a big help as you move forward.
Join a Lewy body dementia-specific support group
Because Lewy body dementia is markedly different from other types of dementia like Alzheimer’s, both patients and caregivers will benefit from conversing with those who are undergoing the same experiences.
Support groups can help you discover coping mechanisms for day-to-day challenges, and better understand the disease’s emotional toll.
Keep busy with engaging activities
Amid the difficulties of a Lewy body dementia diagnosis, it helps to have something exciting and fun to look forward to each day.
Take time at least every other day to plan out something special to do with your loved ones. It can be as simple as scheduling movie night, or having a walk together in the park. You can also try cooking a special dish for an evening date at home.
Stay active and exercise in safe ways. Staying strong and fit can be especially beneficial for people with Lewy body dementia.
It’s also good to continue working on your hobbies and passions. Being able to use your skills, knowledge, and abilities help to make you feel more valuable and productive. Moreover, it will put you in a much better mood. While you may not be able to be as productive in all of your pursuits as you were in the past, it’s important not to quit or avoid them!
Prepare for the future
Planning ahead must be done soon after you are diagnosed with Lewy body dementia, as the progressive nature of the disease might make it more difficult for you to make decisions later on.
Advanced care planning will help you ensure that you receive the right kind of treatment to suit your needs. For example, are you willing to move to a memory care facility or retirement community as the disease progresses later on, or would you rather receive care at home? Consult with local care communities or home health agencies about your options.
It is also important to consult with legal and financial experts to discuss factors such as disability benefits, retirement, your living will, and other related matters.
Having a dementia-friendly home is also key to helping you safely navigate through the changes in thinking and movement resulting from Lewy body dementia.
Proactively make adjustments and ensure that your home is free of potential safety hazards, such as slippery tiles, cluttered rooms or hallways, or poorly lit corridors. A home health agency can also help you make this evaluation and address potential problems.
In conclusion
Fluctuations in functioning are characteristic of Lewy body dementia. As you move forward, you’ll likely have bad days and also good days. If you keep a positive mindset and manage the bad days while deeply enjoying the good days, you can keep up your mental energy and happiness. It’s important to be accepting, proactive, and communicative as you move forward while focusing on finding joy in the little moments along your path.