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Lewy Body Dementia – The Experience

Receiving the Diagnosis

Surely it feels overwhelming to receive a diagnosis of Lewy body dementia (LBD). How do you keep putting one foot in front of the other? How do you take the next breath? Your world just shattered. All you see in your future is a black hole. You may wish it wasn’t so, but the world keeps turning, the clock keeps ticking, and life goes on around you. Your life goes on, too. You take that next breath, and that next step.

There is so much to learn, but you are so distraught that you can’t absorb much information. You become anxious about being anxious. It triggers fear that the LBD is advancing rapidly.

You don’t have to bear it alone; your friends, family, and professionals will be with you every step of the way. Take someone you trust with you to your doctor’s appointments. People at their best, without dementia, absorb only about 10 percent of what they were told by their physician at an office visit. Almost everyone could use help with retaining that information.

Accepting Care

It may be difficult to admit, even to yourself, that your family and close friends have known for some time that something was wrong. They may have insisted that you get medical attention. Some people and their loved ones may feel tremendous relief when the diagnosis is made. Those odd lapses in memory, inability to find a word when you’re speaking, or a sudden explosion of emotion are due to a disease; you aren’t just crazy. Putting a name on the enemy gives you something you can fight.

Getting Help

As LBD progresses, daily tasks become more difficult, such as taking medication, meal preparation, laundry, driving, and paying bills. Although you dislike asking for help, let others help you. LBD affects them as well. Helping is one of the ways they manage stress; you are helping them by accepting their help. The important people in your life need you as much or more than you need them. You still have important roles to fulfill in their lives. Find someone you can talk with about your diagnosis – family, friend, a counselor, or a spiritual advisor may be helpful.

Safety Considerations

Consider these safety issues, even before they arise:

  • Carry an LBD medical alert wallet card. It will be important if an emergency occurs, you are hospitalized, or when you see your physician. Include medication sensitivities.
  • Consider a medical alert service, in which you push a button on a bracelet or necklace to access emergency help.
  • Look for hazards in your home. Clutter, stairs, or poor lighting that puts you at greater risk for falls may need modification, such as ramps rather than stairs, and installing grab bars in the bathroom. Throw rugs slipping on the floor are often the source of falls.
  • Talk with your doctor about driving. Your skills may need evaluation.

Planning for the Future

Some things to consider when planning for the future include:

  • If you are employed, consult a legal/financial expert about planning for disability leave or retirement. Symptoms of LBD will eventually interfere with work performance. Know what benefits to which you may be entitled.
  • Consult an attorney for estate planning. Update important documents, such as a living will, healthcare power of attorney, and a will.
  • Identify community resources for services such as meal delivery, personal care, housekeeping, and transportation.
  • Consider moving to a retirement community with a graduated spectrum of services, from the residents’ total independence to total dependence.

More information is available from the Lewy Body Dementia Association, www.lbda.org



  1. Zhang Q, Kim YC, Narayanan NS. Disease-modifying therapeutic directions for Lewy body dementia. Front Neurosci. 2015 Aug 20;19:293
  2. Ciprian G, Borin G, et al. Personality and dementia. J Nerv Ment Dis. 2015 Mar;203(3):210-4
  3. Lewy Body Dementia Association – www.lbda.org
  4. Lewy Body Dementia: Information for Patients, Families, and Professionals. National Institute on Aging, National Institutes of Health. www.nia.nih.gov/alzheimers/publications/lewy-body-dementia/advice-people-living-lewy-body-dementia


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