Lewy Body Dementia: Information for Patients, Families, and Professionals

Caring for a Person with Lewy Body Dementia

As someone who is caring for a person with LBD, you will take on many different responsibilities over time. You do not have to face these responsibilities alone. Many sources of help are available, from adult day centers and respite care to online and in-person support groups.

Below are some important actions you can take to adjust to your new roles, be realistic about your situation, and care for yourself. See the Resources section for more information.

Educate Others About LBD

Most people, including many healthcare professionals, are not familiar with LBD. In particular, emergency room physicians and other hospital workers may not know that people with LBD are extremely sensitive to antipsychotic medications. Caregivers can educate healthcare professionals and others by:

  • Informing hospital staff of the LBD diagnosis and medication sensitivities, and requesting that the person’s neurologist be consulted before giving any drugs to control behavior problems.
  • Sharing educational pamphlets and other materials with doctors, nurses, and other healthcare professionals who care for the person with LBD. Materials are available from the Lewy Body Dementia Association (see the “Resources” section).
  • Teaching family and friends about LBD so they can better understand your situation.

Adjust Expectations

You will likely experience a wide range of emotions as you care for the person with LBD. Sometimes, caregiving will feel loving and rewarding. Other times, it will lead to anger, impatience, resentment, or fatigue. You must recognize your strengths and limitations, especially in light of your past relationship with the person. Roles may change between a husband and wife or between a parent and adult children. Adjusting expectations can allow you to approach your new roles realistically and to seek help as needed.

People approach challenges at varied paces. Some people want to learn everything possible and be prepared for every scenario, while others manage best by taking one day at a time. Caring for someone with LBD requires a balance. On one hand, you should plan for the future. On the other hand, you may want to make each day count in personal ways and focus on creating enjoyable and meaningful moments.

Care for Yourself

As a caregiver, you play an essential role in the life of the person with LBD, so it is critical for you to maintain your own health and well-being. You may be at increased risk for poor sleep, depression, or illness as a result of your responsibilities. Watch for signs of physical or emotional fatigue such as irritability, withdrawal from friends and family, and changes in appetite or weight.

two older women
Paid and unpaid help can relieve caregiver stress.

All caregivers need time away from caregiving responsibilities to maintain their well-being. Learn to accept help when it’s offered and learn to ask family and friends for help. One option is professional respite care, which can be obtained through home care agencies and adult day programs. Similarly, friends or family can come to the home or take the person with LBD on an outing to give you a break.

Address Family Concerns

Not all family members may understand or accept LBD at the same time, and this can create conflict. Some adult children may deny that parents have a problem, while others may be supportive. It can take a while to learn new roles and responsibilities.

Family members who visit occasionally may not see the symptoms that primary caregivers see daily and may underestimate or minimize your responsibilities or stress. Professional counselors can help with family meetings or provide guidance on how families can work together to manage LBD.

Publication Date: September 2013
Page Last Updated: September 29, 2015