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Dementia With Lewy Bodies

Next Steps for Dementia With Lewy Bodies continued...

Because DLB is a progressive disorder, eventually the person with DLB will become unable to care for himself or herself, or even to make decisions about his or her care.

  • It is best for the person to discuss future care arrangements with family members as early as possible, so that his or her wishes can be clarified and documented for the future.

Your health care provider can advise you about legal arrangements that should be made to ensure that these wishes are observed.

Prevention of Dementia With Lewy Bodies

There is no known way to prevent DLB. Being alert for symptoms and signs may allow earlier diagnosis and treatment. Appropriate treatment can slow or relieve symptoms in some people.

Outlook for People With Dementia With Lewy Bodies

Like other types of degenerative dementia such as Alzheimer's disease, DLB is gradually progressive.

  • DLB eventually affects a person's job performance. Many people with DLB take early retirement from their jobs.
  • The person with DLB will eventually lose his or her ability to drive safely. Driving privileges should be addressed by the caregivers and care team.
  • Eventually the person will lose the ability to care for himself or herself.
  • DLB shortens life expectancy.

The rate of progression varies considerably, but most people die within five to seven years after their disease is diagnosed. The cause of death is usually a complication of the disease.

  • People with the disease develop severe dementia and eventually may have only limited ability to move.
  • They are at risk of falls because of poor balance and walking difficulties.
  • Many have difficulties swallowing, which leads to poor nutrition and sometimes pneumonia (because food goes into the lungs instead of the stomach).
  • They eventually become immobile, which can lead to skin problems (such as bed sores), pneumonia, and other complications.

Support Groups and Counseling

If you are a caregiver for a person with DLB, you know that the disease tends to be more stressful for the family members than for the affected person. Caring for a person with dementia can be very difficult. It affects every aspect of your life, including family relationships, work, financial status, social life, and physical and mental health.

  • You may feel unable to cope with the demands of caring for a dependent, difficult relative.
  • Besides the sadness of seeing the effects of your loved one’s disease, you may feel frustrated, overwhelmed, resentful, and angry.
  • These feelings may in turn leave you feeling guilty, ashamed, and anxious.
  • Depression is not uncommon but usually gets better with treatment.
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