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Lewy Body Dementia – Information for Caregivers

Educating Others

Lewy body dementia (LBD) and its management are in the early stages of understanding. That makes a caregiver of someone with LBD somewhat of a pioneer in identifying the impact of LBD on a patient’s life and the demands on a caregiver. Many health professionals are unfamiliar with the condition, and the caregiver becomes the educator of the professionals, family and friends. Information and material for distribution about LBD are available from the Lewy Body Dementia Association, http://www.lbda.org.

It is especially important for caregivers to stress to health professionals that people with LBD are extremely sensitive to antipsychotic medications, drugs which are often prescribed for the behavioral problems associated with dementias. The patient’s neurologist should be consulted before any drugs are given to manage behavior problems.

Emergency Preparedness

A caregiver should be prepared for emergencies with these available:

  • A list of the person’s medical problems, including allergies to medicines and foods
  • A list of medications and dosages
  • Copies of health insurance cards
  • Copies of advance directives
  • Contact information for reaching physicians and family members

Long-term Planning

Planning for the future care of the individual with LBD is important and can prevent some roadblocks to healthcare and life management.

  • Consult with a legal/financial expert about the expense of care, which grows as LBD progresses. Ask what benefits are available. Are there charitable resources for help with physical care and/or financial need?
  • Write or update important documents: a will, healthcare power of attorney, and a living will.
  • Identify resources in the community, such as adult daycares, home nursing, meal delivery, personal care such as bathing and dressing, laundry, and others
  • Consider a change of residence. There are retirement communities with a spectrum of care – minimal, early in the disease, to complete care, as LBD progresses.

Realistic Expectations

Knowing what issues a caregiver faces can make it easier to cope with difficulties as they arise, and to ask for help when needed. A caregiver can expect to experience a wide range of emotions, many of which are difficult, such as anger, helplessness, weariness, resentment and impatience. There are also loving feelings, as well as gratitude that the person had a role in the caregivers life. Caregiving can be rewarding, giving purpose to the caregiver.

It’s important to recognize strengths and limitations, taking into consideration the past relationship with the person for whom receiving care. Roles change between a husband and wife, and a parent and child.

Caring for the Caregiver

A caregiver’s role is essential to the wellbeing of the person with LBD. That makes it imperative for the caregiver to recognize their own needs and to get those needs met. A caregiver is at greater risk for sleep problems, depression, physical and emotional fatigue, as well as changes in appetite and weight.

All care givers need time away from their responsibilities. If family and friends offer help, accept it. Professional respite organizations may be an option. Most states have respite registries to assist in finding relief. “Respite for Veterans” and the “National Family Caregivers Support Program” can help. The LBD Association, www.lbda.org has respite information. Another source is the National Respite Locator, http://archrespite.org/respitelocator.


A chronic illness can divide families. The caregiver’s family often has no understanding of LBD, and may not see the symptoms that are so draining to the caregiver. They don’t realize how challenging it is to be a caregiver. A professional family counselor may be helpful for mediation when dissension between family members occurs.



  1. Parmar J, Jette N. Supporting people who care for older family members. CMAJ. 2014 April 15; 186(7)487-8
  2. Maayan N, Soares-Weiser, Lee H. Respite care for people dementia and their carers. Cochran Database Syst Rev. 2014 Jan 16;1:CD004396
  3. Lewy Body Dementia: Information for Patients, Families, and Professionals. National Institute on Aging, National Institutes of Health. https://www.nia.nih.gov/alzheimers/publication/lewy-body-dementia/caring-person-lewy-body-dementia


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