Lewy body dementia (LBD) is a complex neurodegenerative disease with a range of neurological, cognitive, and behavioral symptoms. Many individuals, family members and care partners of people with LBD find behavior changes to be the most distressing and difficult-to-treat symptoms of LBD.
Here is a brief glimpse of the behavior changes Lewy body dementia may bring about in your loved one, so you know what to watch for. Be aware that some dementia behaviors are subtle or may seem to go away for a while. Others are easily recognizable and stick around once they occur for the first time.
Hallucinations and Illusions
A hallucination is the perception of a person, object, or event that is not actually present. An illusion is the misperception of a person, object, or event that does exist. Hallucinations and illusions are typically visual in nature for people with Lewy body dementia, but they can also manifest as disturbances to smell, taste, or touch, or hearing things that are not there.
- Seeing a person or animal in an empty room
- Hearing conversations when no one is around
- Detecting unpleasant odors that are not there
- Perceiving a spoiled taste when eating fresh food
- Mistaking patterns on a rug for snakes
- Confusing a coat hanging on a coat rack for a person
A delusion is a strongly held false belief not based on logic or evidence. The most common are paranoid, or persecutory, delusions. Examples include:
- Believing deceased loved ones are still alive
- Believing a spouse is having an affair
- Believing a loved one has been replaced by an identical imposter (Capgras syndrome)
- Believing food or medicine is poisoned
- Believing strangers are living in the house
Aggression is hostile, injurious, or destructive behavior toward others. Examples include:
- Physical abuse- such as choking, hitting, biting, or spitting
- Verbal abuse- such as using emotionally harmful language like swearing or name-calling
Agitation is emotional or physical restlessness.
- Hand wringing
- Feeling unsettled
- Constantly repeating words or phrases
- Trying to leave the premises/location
- Overnight wandering
Apathy is a lack of interest, concern, or enthusiasm for matters that are usually considered important. Symptoms include:
- Decreased desire to attend family events
- Reluctance to try new things or meet new people
- Detachment from others
- Tendency to be alone
- Lack of initiation of activities and conversation
- Diminished emotional response
Depression is persistent sadness or loss of pleasure in activities that interferes with daily function.
Symptoms may include:
- Inability to enjoy activities that once brought happiness
- Sleeping and eating disturbances
- Low self-esteem
- Feelings of guilt, helplessness and/or hopelessness
- Thoughts of death or suicide
Anxiety is an intense apprehension, uncertainty, or fear surrounding everyday events or situations. Symptoms may include:
- Asking the same questions repeatedly
- Being overly worried about routine events or concerns
- Becoming angry or afraid when a care provider is not present (fear of being alone)
- Fast heart rate, rapid breathing, and sweating (i.e., anxiety or panic attack)
- Fear of being in social situations (social phobia)
Disinhibition is characterized by the inability to stop abnormal or inappropriate behaviors, control impulses, and make safe choices. This may include:
- Socially inappropriate behaviors like approaching strangers on the street
- Repetitive or stereotype behaviors like drawing, reading, or taking things apart (punding)
- New habits like gambling, drug use, or sexually promiscuous behaviors
- Sexual impulsivity or unwanted sexual advancements towards others
Care partner tips for coping with behavior changes in Lewy body dementia
Coping with these behaviors can be challenging for care partners and loved ones. Below are some tips to help.
- Be honest with yourself: One of the most important things you can do when acting as a caregiver is to be honest with yourself and the situation. It is easy to try to deny the difficult realities that dementia can bring. However, when your loved one starts to show serious signs of dementia, it can be most helpful to educate yourself and discuss concerns with your loved one, medical providers, and those who support you.
- Don’t argue: Dementia can be difficult to support – especially when disagreements arise. Often, arguing with your loved one can cause many hurt feelings both for them and for yourself. Understand that providing a logical explanation or trying to prove a point to correct is not helpful. Stop. Breathe deeply and remember it is the disease talking. When this happens, try to connect with them in other ways, respond to needs, and move on from the argument.
- Be patient: This may seem like an obvious but key point that many caregivers can unfortunately forget. It can be very heartbreaking when a loved one does not remember you. Remain calm and take time to privately experience the emotions that may surface. They do not have control of the changes to their memory and thinking – as this is an unfortunate side effect of their condition.
- Stay present and available: When a loved one experiences changes to their thinking, memory, or relationships – it can require the care partner to adjust to remain present and available. It is important to remember that although changes may be present – it remains important to maintain support, shared experiences, and interaction. It can often be helpful to continue activities that are enjoyed – however, there may be ways to adjust the activity to fit the ability in those moments.
- Don’t forget to take care of yourself: This can often feel like an impossible task to many caregivers. It can be very overwhelming physically, mentally, and emotionally. However, it is important to find small ways to continue to do so. This may look quite different as time and availability may shift – but remain flexible and find moments of joy, respite, peace, and comfort. The better you take care of yourself, the better caregiver you will be for your loved one.
- Form a support network: One of the best ways that you can help prevent care partner strain is to surround yourself with people. Having a strong network of family and friends can help you get the support that you need. You can also reach out to your doctor and healthcare team for ongoing support as you deal with the struggles and adjustments of being a care partner.
The Lewy Body Dementia Association is dedicated to raising awareness of LBD. If you have a loved one with Lewy body dementia, remember, you are not alone! The resources on our website can help you learn more about this disease, seek proper treatment, and find emotional support. For more information, please contact us through our website, sign up for our email newsletter, or connect with us on Facebook and Twitter.