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Coping and support

By Mayo Clinic staff

People with Lewy body dementia often experience a mixture of emotions, such as confusion, frustration, anger, fear, uncertainty, grief and depression.

You can help a person cope with the disease by listening, reassuring the person that he or she still can enjoy life, being supportive and positive, and doing your best to help the person retain dignity and self-respect.

If you're a caregiver for someone with Lewy body dementia, watch the person closely to make sure he or she doesn't fall, lose consciousness or react negatively to medications. You can should also reassure the person during times of confusion, delusions or hallucinations.

Looking after yourself
The physical and emotional demands of caregiving can be exhausting. You may experience feelings of anger, guilt, frustration, discouragement, worry, grief or social isolation. If you're a caregiver for someone with Lewy body dementia, you can help yourself and help prevent caregiver burnout by doing the following:

  • Ask friends or other family members for help when you need it. Consider in-home health services to assist with the care of the person with Lewy body dementia.
  • Take care of your health. Exercise regularly and eat a healthy diet.
  • Learn as much about the disease as you can. Ask questions of doctors, social workers and others involved in the care of the person with Lewy body dementia.
  • Join a support group.

Many people with Lewy body dementia and their families can benefit from counseling or local support groups. Contact your local agencies on health or aging to get connected with support groups, doctors, resources, referrals, home care agencies, supervised living facilities, a telephone help line and educational seminars.

Alternative medicine
References
  1. NINDS Dementia with Lewy bodies information page. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/dementiawithlewybodies/dementiawithlewybodies.htm. Accessed Jan. 18, 2013.
  2. Hake AM, et al. Clinical features and diagnosis of dementia with Lewy bodies. http://www.uptodate.com/home. Accessed Jan. 18, 2013.
  3. Hake AM, et al. Epidemiology, pathology, and pathogenesis of dementia with Lewy bodies. http://www.uptodate.com/home. Accessed Jan. 18, 2013.
  4. Diagnosis. Lewy Body Dementia Association. http://www.lbda.org/content/diagnosis. Accessed Jan. 31, 2013.
  5. Hake AM, et al. Prognosis and treatment of dementia with Lewy bodies. http://www.uptodate.com/home. Accessed Jan. 18, 2013.
  6. Symptoms. Lewy Body Dementia Association. http://www.lbda.org/content/symptoms. Accessed Feb. 1, 2013.
  7. Neurological diagnostic tests and procedures. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/misc/diagnostic_tests.htm. Accessed Jan. 28, 2013.
  8. Shadlen MF, et al. Evaluation of cognitive impairment and dementia. http://www.uptodate.com/home. Accessed Feb. 1, 2013.
  9. Dementia: Hope through research. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/dementias/detail_dementia.htm. Accessed Jan. 18, 2013.
  10. Communication and Alzheimer's. Alzheimer's Association. http://www.alz.org/care/dementia-communication-tips.asp. Accessed Feb. 4, 2013.
  11. Creating a daily plan. Alzheimer's Association. http://www.alz.org/care/dementia-creating-a-plan.asp. Accessed Feb. 4, 2013.
  12. Press D. Treatment of behavioral symptoms related to dementia. http://www.uptodate.com/home. Accessed Feb. 4, 2013.
  13. Sleep issues and sundowning. Alzheimer's Association. http://www.alz.org/care/alzheimers-dementia-sleep-issues-sundowning.asp. Accessed Feb. 4, 2013.
  14. Buettner LL, et al. Animal-assisted therapy for clients with dementia. Journal of Gerontological Nursing. 2011;37:10.
  15. Being a healthy caregiver. Alzheimer's Association. http://www.alz.org/care/alzheimers-dementia-healthy-caregiver.asp. Accessed Feb. 4, 2013.
  16. Respite care. Alzheimer's Association. http://www.alz.org/care/alzheimers-dementia-caregiver-respite.asp. Accessed Feb. 4, 2013.
  17. Caregiver stress. Alzheimer's Association. http://www.alz.org/care/alzheimers-dementia-caregiver-stress-burnout.asp. Accessed Feb. 4, 2013.
  18. U.S. News best hospitals 2012-2013. U.S. News & World Report. http://health.usnews.com/best-hospitals/rankings. Accessed Jan. 18, 2013.
  19. Smith GE (expert opinion). Mayo Clinic, Rochester, Minn. Feb. 28, 2013.
DS00795 April 17, 2013

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