How to Care for a Person with Lewy Body Dementia
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As someone 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 actions you can take to adjust to your new roles, be realistic about your situation, and care for yourself.
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 materials with healthcare professionals who care for the person with LBD. Materials are available from the Lewy Body Dementia Association.
- Teaching family and friends about LBD so they can better understand your situation.
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. 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 prefer to take 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 can also focus on creating enjoyable and meaningful moments.
As a caregiver, 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.
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.
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 provide guidance on how families can work together to manage LBD.
Although LBD and Alzheimer's disease are different disorders, they share similar family concerns. For more information, read Helping Family and Friends Understand Alzheimer's Disease and Helping Kids Understand Alzheimer's Disease.
For health care providers and caregivers who don’t have experience with LBD, it can be challenging to recognize the end of life. LBD is unpredictable. It can be hard to know when the person will die, and the process may be shorter or longer than expected, which may make coping more difficult. Staying in touch with your physician can help you decide when to pursue end of life care and what to expect towards the end of life. However, some physicians may be less likely to initiate end of life conversations. It is important for caregivers to take an active role during appointments and come prepared.
Advance care planning is an important part of end of life care. Planning ahead can improve the quality of life of the person with LBD and their caregivers and help ensure that the person with LBD has input into healthcare and legal and financial decisions. Having these conversations early allows the person to actively participate in the decision-making process and express their personal wishes.
Spending time and doing simple activities together towards the end of life may help ease the process. Listening to music, spending time outdoors, or watching a favorite television show are just a few examples of activities you can do. Some family members find a lot of value in simply holding their loved one’s hand and talking to them in their last few days.
Many caregivers feel relief when death happens, for themselves and the person with LBD. It is important to realize that these feelings are normal. Get help for your grief.
Learn more about end of life care.
For More Information About Caring for a Person with LBD
NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center
The National Institute on Aging’s ADEAR Center offers information and free print publications about Alzheimer’s disease and related dementias for families, caregivers, and health professionals. ADEAR Center staff answer telephone, email, and written requests and make referrals to local and national resources.
Lewy Body Dementia Association
1-800-539-9767 (toll-free LBD Caregiver Link)
Content reviewed: June 28, 2018