Dementia With Lewy Bodies
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, 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.
Caregivers have different thresholds for tolerating these challenges.
- For many caregivers, just "venting" or talking about the frustrations of caregiving can be enormously helpful.
- Others need more support, but may feel uneasy about asking for the help they need.
- One thing is certain, though: if the caregiver is given no relief, he or she can burn out, develop his or her own mental and physical problems, and become unable to care for the affected person.
This is why support groups were invented. Support groups are groups of people who have lived through the same difficult experiences and want to help themselves and others by sharing coping strategies. Mental health professionals strongly recommend that family caregivers take part in support groups. Support groups serve a number of different purposes for a person living with the extreme stress of being a caregiver for a person with DLB:
- The group allows the person to express his or her true feelings in an accepting, nonjudgmental atmosphere.
- The group’s shared experiences allow the caregiver to feel less alone and isolated.
- The group can offer fresh ideas for coping with specific problems.
- The group can introduce the caregiver to resources that may be able to provide some relief.
- The group can give the caregiver the strength he or she needs to ask for help.
Support groups meet in person, on the telephone, or on the Internet. To find a support group that works for you, contact the following organizations. You can also ask your health care provider or behavior therapist, or go on the Internet. If you do not have access to the Internet, go to the public library. For more information about support groups, contact these agencies:
- Family Caregiver Alliance, National Center on Caregiving - (800) 445-8106
- Lewy Body Dementia Association, Inc.
- BrainTalk Communities (online support groups)
- Parkinson's Disease Foundation - (800) 457-6676
- National Alliance for Caregiving
- Eldercare Locator Service – (800) 677-1116