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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.

A Peaceful Routine

Susan realized that her mother, Estelle, could not manage a lot of stimulation. Estelle easily became agitated and confused, so Susan avoided taking her to places with large crowds or noisy environments. Susan discovered that soothing music calmed Estelle and used it to help her relax when she grew anxious and irritable. Establishing a routine with familiar faces in smaller groups has allowed Estelle to enjoy a better quality of life, despite the challenges caused by dementia with Lewy bodies.

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.

Prepare for Emergencies

People with LBD may experience sudden declines in functioning or unpredictable behaviors that can result in visits to the emergency room. Infections, pain, or other medical conditions often cause increased confusion or behavioral problems. Caregivers can prepare for emergencies by having available:

  • a list of the person’s medications and dosages
  • a list of the person’s health conditions, including allergies to medicines or foods
  • copies of health insurance card(s)
  • copies of healthcare advance directives, such as a living will
  • contact information for doctors, family members, and friends

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 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.

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.

Changing Relationships

Education and support are crucial for LBD caregiversDiane’s husband Jim was diagnosed with Lewy body dementia 2 years ago. Their son and daughter, who live across the country, thought that Diane was making too much of his illness She asked them to fly out for a family meeting. A counselor who specializes in geriatrics gave the children helpful educational materials, and the family talked about the kind of emotional support Diane needs. They are on a better road to teamwork now.

Helping Children and Teens Cope with LBD

When someone has Lewy body dementia, it affects the whole family, including children and grandchildren. Children notice when something “doesn’t seem right.” Telling them in age-appropriate language that someone they know or love has been diagnosed with a brain disorder can help them make sense of the changes they see. Give them enough information to answer questions or provide explanations without overwhelming them.

Children and teens may feel a loss of connection with the person with LBD who has problems with attention or alertness. They may also resent the loss of a parent caregiver’s attention and may need special time with him or her. Look for signs of stress in children, such as poor grades at school, withdrawal from friendships, or unhealthy behaviors at home. Parents may want to notify teachers or counselors of the LBD diagnosis in the family so they can watch for changes in the young person that warrant attention.

Here are some other ways parents can help children and teens adjust to a family member with LBD:

  • Help them keep up with normal activities such as sports, clubs, and other hobbies outside the home. Suggest ways for kids to engage with the relative with LBD through structured activities or play. For example, the child or teen can make a cup of tea for the person with LBD.
  • Find online resources for older children and teens so they can learn about dementia and LBD. See the Resources section for more information.

It is important for families to make time for fun. Many challenges can be faced when they are balanced with enjoyable times. While LBD creates significant changes in family routines, children and teens will cope more effectively if the disorder becomes part of, but not all of, their lives.