“Caring for Someone with Lewy Body Dementia” – Live Chat Notes

Recently, Home Instead Senior Care hosted a conversation with Angela Taylor, Director of Programs for the Lewy Body Dementia Association (lbda.org). She provided a brief summary of what distinguishes Lewy Body Dementia (LBD) from some other dementias, followed by a lengthy question and answer period.

Lewy Body Dementia (LBD) includes both:
Dementia with Lewy Bodies (DLB) and
Parkinson’s Disease Dementia (PDD)

Treatment and behavior management is the same for both.

According to the research criteria, someone is diagnosed with DLB when both cognitive changes (hallucinations and fluctuating cognition) and parkinsonian symptoms (gait and balance difficulty and/or tremor) appear at nearly the same time.

And someone is diagnosed with PDD the cognitive changes appear more than a year after parkinsonian symptoms or a Parkinson’s diagnosis.

Brain Support Network uber-volunteer Denise Dagan recently listened to the webinar, and shares her notes below.

For additional resources on LBD, check out Brain Support Network’s list of Top Resources for LBD.



Caring for Someone with Lewy Body Dementia
Home Instead Senior Care
June 7, 2018 Webinar

Live Chat with Angela Taylor of the Lewy Body Dementia Association

Lewy Body Dementia (LBD) is most common type of dementia after Alzheimer’s.  Each type of dementia has different caregiving challenges.

Dementia is an umbrella term which is a change in a person’s cognitive skills that interferes with daily functioning. There are over 100 causes of dementia. Some are treatable, like hydrocephalus. Most are progressive.

LBD is the most misdiagnosed form of dementia and affects 1.4 million Americans. It is a disease of older age (50+).  LBD affects more than just cognitive skills. Biologically, there are the same changes as those with Parkinson’s Disease.

Changes that affect movement. Those changes are called parkinsonism because they resemble Parkinson’s Disease.

Cognitive changes are not so much memory initially, but in planning, paying attention, understanding how things relate in 3D, fluctuations in their cognition even from hour to hour.

Changes in mood and behavior commonly seen in mental health disorders, like hallucinations (commonly people, animals or children) and delusions (when you think something is true, even with no facts to support the belief), depression and anxiety.

REM sleep behavior disorder – physically acting out dreams (hit, shout, kick, fall out of bed), or insomnia, restless leg, sleep apnea

Changes in autonomic nervous system, including digestion, constipation, low blood pressure.


Q. How to best deal with hallucinations?

A. Up to 80% of people will have hallucinations. Sometimes, it is the first symptoms families notice. It can be frightening for the family, even if the subject of the hallucination is not frightening to the person with LBD. Hallucinations are a huge indicator that you are dealing with LBD as it is not a symptom that appears early in PD.

Caregiver should listen with your heart before listening with your brain. Respond to what your family member is feeling because you cannot convince them they are having a very real hallucination. First comfort their emotional state. Enter their reality. Engage in ‘therapeutic lies’ to help them deal with what they are experiencing. Try moving them to another location/room to change their visual experience. Turn off TV. Remove mirrors.

Q. How do you convince relatives who only see LBD symptoms on a person’s good days that there really are challenges?

A. People with LBD can really rise to the occasion when they are visiting with someone they are excited to see. The next day they are depleted and their Sx are all worse. If you want a relative to see the aftermath, you really need to ask them to visit for a few days to see the fluctuations in person. Provide the relative with educational material or forward them web resources links explaining LBD symptoms.  Sometimes, the relative is resistant due to fear and grief that they don’t want to believe the person with LBD is declining so dramatically.

Q. How to best deal with delusions?

A. Every situation is unique due to individual experience. Angela’s father became convinced his wallet was stolen. Capgras syndrome = someone believes a person in their household has been replaced by an imposter. Respond that you will fetch the person who has been replaced, leave for a few minutes and return. Often someone with LBD will not see their home as being their home. Therapeutic lies to calm fears or tell them what they believe is going on here is not happening where they live, then relocate them.

For both hallucinations and delusions you may have to try a few different calming comments before finding one they can buy into. As long as you remain calm and not escalate the situation, you will eventually be successful.

Q. Are there treatments for LBD or detrimental treatments for mis-diagnosis of LBD?

A. LBD has a lot of symptoms. There are medications that help many of those Sx. We can’t make dementia go away, but we can improve quality of life for both the patient and family caregiver. You really need a specialist for this because when you treat one area, you may make another worse. Treating autonomic symptoms nearly any doctor can do. Speech therapy can help as those muscles are affected. Physical therapy can help to counter stiffness and rigidity of parkinsonism rather than medications.
Those that treat cognitive skills (Nameda, Exelon) can improve hallucinations, anxiety, etc.  Treating movement symptoms medications can worsen hallucinations in LBD. May not treat minimal movement symptoms.  Treating behavior and mood symptoms (depression and anxiety) can improve quality of life and make them cooperative to care.
Treating hallucinations & delusions medications can worsen parkinsonism symptoms.

5 areas of symptoms in LBD:
Autonomic dysfunction

LBDA recently added 24 major medical institutions as centers of excellence for LBD treatment. Increases opportunities for families to participate in research trials.

Q. Importance of early diagnosis, but how?

A. Start with your primary care physician. They should rule out underlying medical conditions. If they can’t figure it out they should refer to a neurologist. 2/3 of accurate diagnosis are done by neurologists, neuropsychologist, geriatricians. To diagnose, they may do a brain scan, cognitive evaluation or other tests to narrow the diagnosis.

Q. Family member with LBD symptoms include jerking of the arms and hands as well as staring unresponsively.

A. Staring into space is a manifestation of fluctuating cognition or orthostatic hypotension (low blood pressure). Parkisonism symptoms include masked face, stiffness, tremor. Jerking can be caused by medications used to treat parkinsonism or may be a symptoms of LBD. You should have a doctor see her.

Q. How quickly do motor skills decline? Do some symptoms present before others?

A. LBD is an umbrella term. There are 2 specific diagnoses.  Patients w/PD that then develop LBD have PDD. They have the same Lewy bodies in their brain but heir earliest problems are motor. DLB initially has cognitive issues, and later develop motor symptoms. Each individual will have varying degrees of intensity of symptoms between the 5 areas of symptoms in LBD.

If something has changed suddenly it is important to take your family member to see a doctor. It could be a medical issue that can be treated, but if it is physical changes it could be transition into a later stage of the disease. Only a doctor can determine this distinction. If so, it could be time to call in hospice to support the family.

Q. What should I look for in final stages of LBD and how to choose a good hospice?

A. There are no formal stages of LBD. Late stage is characteristic of being unable to care for themselves in all areas of daily living. Tell your Dr. if your family member having trouble swallowing so they can help you put services in place to support the patient and family, including hospice, speech therapy, feeding specialist, etc. Tell your Dr. if you think your family member may be in pain. Physical therapy & occupational therapy can bring in a hospital bed, special padding, etc. to make them more comfortable. Engage hospice and in-home care as early as possible to support the family so the family can do less hands-on care and focus more on bringing in experiences your family member will enjoy (music, art, movies, reading aloud, animals, family, etc.)

Q. How to deal w/LBD family member who has lost involvement in life?

A. LBDA has a private Facebook group so you can see what others are dealing with and share creative ways to cope. Talk to your Dr. about your family member’s change of activity and motivation. If it is depression it can be treated. Bring your family member’s passions to them or take them to their passions (Example: golf – can go putting, watch friends/fellow golfers at the driving range or a tournament, even watch a tournament on TV). Keep people socially stimulated, physically active and feeling they contribute value to society in addition to emotional support.

Dementia Resources:

– HelpForAlzheimersFamilies.com

– Facebook.com/RememberForAlzheimers

– HomeInstead.com

– LBDA Research Centers of Excellence: www.lbda.org/rcoe

– An Introduction to LBD Booklet: www.lbda.org/content/intro-to-lbd

– LBD Symptoms Checklist: www.lbda.org/go/comprehensive-lbd-symptoms-checklist

– LBD: State of the Science: www.lbda.org/go/lbd-state-science