“Dementia caregivers: Learning to live in your loved one’s reality” (Philadelphia Inquirer)

This Philadelphia Inquirer article is a report on an Alzheimer’s caregiver conference in Valley Forge.  The keynote speaker was Tam Cummings, a gerontologist from Texas.  Ms. Cummings and other speakers made several points:

* “Cummings urged family members to ask their doctors more questions — as many questions as they might ask if the diagnosis were cancer.  Knowing more, she said, may help them understand and cope with the memory lapses, confusion, delusions, falls, depression, and stubbornness that often accompany dementia.”

* “A recurring theme: People with dementia have brain damage that limits what they can do and how they can think.  It’s those around them who have to change. … If people with dementia are being obstinate or aggressive, it’s up to caregivers to try to figure out whether there is an explanation that their loved one can no longer communicate: Are they in pain? Are they afraid? Were the instructions too complicated? Have perceptual changes made the environment look dangerous to them?”

* “Cummings told the crowd that ‘your loved one’s reality is your reality.'”

This short article is worth reading.  Here’s a link to it:


Dementia caregivers: Learning to live in your loved one’s reality
Updated: April 26, 2017 — 3:01 am EDT
by Stacey Burling, Staff Writer
Philadelphia Inquirer


Son Joey’s video chronicles of his mom’s LBD journey

Molly Daley was diagnosed two years ago with Lewy Body Dementia at the age of 65.  Her son Joey, who is her caregiver, is chronicling her decline via a video blog (“vlog”).  Joey makes a video with his mom every time he picks her up from the nursing home where she lives.  “He hopes his videos will spread awareness of dementia and inspire people to hold on to their loved ones while they can.”

Unlike many with LBD, she has difficulty remembering events and recognizing people.  (It could be that she has Alzheimer’s as well as LBD as they frequently co-occur.)  Molly cannot perform some daily tasks, like brushing her teeth.

Here’s a link to a short Yahoo!News story about Joey’s vlog:


And here’s a link to Joey’s 28 “episodes” with his mother:


Have a tissue handy,


Excerpts on LBD in “The Dementias” (NIH online-only booklet)

The National Institutes of Health (nih.gov) has several publications on neurological diseases.  I recently came across their booklet on “The Dementias,” which includes a short section on synucleinopathies.  Synucleinopathies are caused by the abnormal accumulation of the protein alpha-synuclein.  Lewy body dementia is addressed along with its two types — Dementia with Lewy bodies and Parkinson’s disease dementia.

Here are excerpts from the synucleinopathies section.  Look at the booklet online for other chapters — risk factors, diagnosis and treatment, etc. — and other types of dementia.




Excerpts from
The Dementias
NIH Online Booklet
Published September 2013 (Last Updated July 2016)

Types of Dementia

Various disorders and factors contribute to the development of dementia. Neurodegenerative disorders such as AD, frontotemporal disorders, and Lewy body dementia result in a progressive and irreversible loss of neurons and brain functions. Currently, there are no cures for these progressive neurodegenerative disorders.

Some types of dementia disorders are described below.


In these brain disorders, a protein called alpha-synuclein accumulates inside neurons. Although it is not fully understood what role this protein plays, changes in the protein and/or its function have been linked to Parkinson’s disease and other disorders.

One type of synucleinopathy, Lewy body dementia, involves protein aggregates called Lewy bodies, balloon-like structures that form inside of nerve cells. The initial symptoms may vary, but over time, people with these disorders develop very similar cognitive, behavioral, physical, and sleep-related symptoms. Lewy body dementia is one of the most common causes of dementia, after Alzheimer’s disease and vascular disease. Types of Lewy body dementia include:

* Dementia with Lewy bodies (DLB), one of the more common forms of progressive dementia. Symptoms such as difficulty sleeping, loss of smell, and visual hallucinations often precede movement and other problems by as long as 10 years, which consequently results in DLB going unrecognized or misdiagnosed as a psychiatric disorder until its later stages. Neurons in the substantia nigra that produce dopamine die or become impaired, and the brain’s outer layer (cortex) degenerates. Many neurons that remain contain Lewy bodies.

Later in the course of DLB, some signs and symptoms are similar to AD and may include memory loss, poor judgment, and confusion. Other signs and symptoms of DLB are similar to those of Parkinson’s disease, including difficulty with movement and posture, a shuffling walk, and changes in alertness and attention. Given these similarities, DLB can be very difficult to diagnose. There is no cure for DLB, but there are drugs that control some symptoms. The medications used to control DLB symptoms can make motor function worse or exacerbate hallucinations.

* Parkinson’s disease dementia (PDD), a clinical diagnosis related to DLB that can occur in people with Parkinson’s disease. PDD may affect memory, social judgment, language, or reasoning. Autopsy studies show that people with PDD often have amyloid plaques and tau tangles similar to those found in people with AD, though it is not understood what these similarities mean. A majority of people with Parkinson’s disease develop dementia, but the time from the onset of movement symptoms to the onset of dementia symptoms varies greatly from person to person. Risk factors for developing PDD include the onset of Parkison’s-related movement symptoms followed by mild cognitive impairment and REM sleep behavior disorder, which involves having frequent nightmares and visual hallucinations.

“Lewy Body Dementia Caregiving – Insights & Experience” Seminar, April 19

Please join Brain Support Network, Stanford Parkinson’s Caregiver Support, and Avenidas for a seminar on Lewy Body Dementia caregiving:

Lewy Body Dementia Caregiving – Insights & Experience

Date:  Wednesday, April 19, 2017
Time:  2:30-4pm
Location:  Avenidas (avenidas.org), 450 Bryant St., Palo Alto – La Comida Dining Room

Speaker:  Christina Irving, LCSW, Family Caregiver Alliance

Panelists:  Three members of the Brain Support Network Lewy Body Dementia Caregiver Group including one woman whose husband is in middle stages, one woman whose father is in middle stages, and one gentleman whose wife died in December 2016 with presumed Lewy Body Dementia.

This event is free but please RSVP to Avenidas, phone 650-289-5400 so  that we have enough refreshments and materials for everyone.


Webinar for healthcare professionals on 3 dementias, including DLB – April 6th

This 90-minute webinar on April 6th is designed for healthcare professionals.  (Geriatricians and social workers can receive education credits.)  Titled “Beyond Alzheimer’s Disease,” the webinar will address the three most common dementias after Alzheimer’s — vascular dementia, dementia with Lewy bodies (DLB), and frontotemporal dementia.

Here’s information from the webinar’s host, Resources for Integrated Care, about the event.



Beyond Alzheimer’s Disease – Other Causes Of Progressive Dementia In The Older Adult
Date/Time:  Thursday, April 6, 201712:00-1:30 pm ET

Registration Link:

Several atypical dementia syndromes may be confused with the more common diagnosis of Alzheimer’s disease (AD). It is important for providers to distinguish among these diagnoses because the management strategies that are effective in the care of adults with AD are often not effective with individuals with these atypical dementias. Three of the most common of these syndromes are:

* Vascular dementia – cognitive deficits most often associated with vascular damage in the brain, either micro or macro in nature.

* Dementia with Lewy Bodies – a dementia that also includes one or more of these core findings: recurrent and detailed visual hallucinations, parkinsonian signs, and fluctuating changes in alertness or attention.

* Frontotemporal dementia – a disease often seen in individuals with onset of cognitive symptoms at a younger age; these individuals present most often with executive and language dysfunction and significant behavioral changes.

This webinar is intended for a wide range of stakeholders – physicians, nurses, social workers, care managers, family caregivers, staff at social service agencies, managed long-term services and supports (MLTSS) and other health plans, consumer organizations, and those who care for people with dementia (MLTSS).

This webinar will:

1) Identify key distinguishing diagnostic features of the more common atypical dementias

2) Demonstrate basic knowledge of key strategies for preventing or reducing difficult behaviors associated with Frontotemporal dementia or Lewy Body Dementia

3) Discuss the impact of these atypical dementias on adults and their families and how to address the resultant care challenges

Webinar Presenters:
* Melinda S. Lantz, MD, Chief of Geriatric Psychiatry, Mount Sinai Beth Israel Medical Center, New York, NY
* Geri Hall, PhD, ARNP, CNS, FAAN, Banner Health, Phoenix, AZ
* Rebekkah Wilson, MSW, Dementia Care Consultant and Trainer
* Sharon Hall, Family Caregiver

After registering, you will receive an email from [email protected] containing event log on information. The email also contains an attachment that, when opened, will save the event log on information to an Outlook calendar.

The log on information is unique to you. Each registration allows for only one connection, so do not share this information with anyone else.

Johns Hopkins Overview of Dementia with Lewy Bodies

Johns Hopkins University has an online health library with info about various conditions.  I read about their page on dementia with Lewy bodies (DLB) from a Facebook (FB) page.  Here’s a link to the Johns Hopkins overview of DLB:


The JH webpage is copied below.


Dementia with Lewy Bodies
Johns Hopkins University

Lewy Body Dementia: What You Need to Know

* Lewy body dementia is a form of progressive dementia that affects a person’s ability to think, reason, and process information.

* Diagnosing Lewy body dementia can be challenging; an estimated 1.4 million Americans are living with the disease.

* The condition has three features that distinguish it from other forms of dementia:

– Fluctuating effects on mental functioning, particularly alertness and attention, which may resemble delirium

– Recurrent visual hallucinations

– Parkinson-like movement symptoms, such as rigidity and lack of spontaneous movement.

* Interventions used in other forms of dementia may help people living with Lewy body dementia. It’s important to work with a specialist familiar with the many aspects of the disease.

What is Lewy body dementia?

Lewy body dementia is a form of progressive dementia caused by degeneration of the tissues in the brain.

More than a million people in the U.S. are affected by Lewy body dementia, according to the Lewy Body Dementia Association.

People with Lewy body dementia have a buildup of abnormal protein particles called Lewy bodies in their brain tissue. Lewy bodies are also found in the brain tissue of people with Parkinson disease (PD) and Alzheimer disease (AD). However, in these conditions, the Lewy bodies are generally found in different parts of the brain.

The presence of Lewy bodies in Lewy body dementia, PD, and AD suggests a connection among these conditions. But scientists haven’t yet figured out what the connection is.

Lewy body dementia affects a person’s ability to think, reason, and process information. It can also affect personality and memory. Lewy body dementia becomes more prevalent with age, and typically first presents when a person is in his or her 60s and 70s.  Lewy body dementia is progressive, which means it continues to develop over time. There are several types of dementia with different causes.

What causes Lewy body dementia?

Lewy body dementia is caused by degeneration or deterioration of brain tissue. Lewy body dementia may be genetic, but it is not always clear why someone develops Lewy body dementia. Lewy bodies in the brain affect substances called neurotransmitters. A neurotransmitter is a chemical that helps to transmit signals from one nerve cell to another.

One type of neurotransmitter is dopamine, which helps transmit signals that cause muscle movement. Lewy bodies interfere with the production of dopamine. A lack of dopamine causes movement problems, such as those seen in  Parkinson disease.

Acetylcholine is another type of neurotransmitter found in the parts of the brain responsible for memory, thinking, and processing information. When Lewy bodies build up in these areas, they use up the acetylcholine, causing symptoms of dementia.

What are the symptoms of Lewy body dementia?

According to the National Institute of Neurological Disorders and Stroke, Lewy body dementia has 3 features that distinguish it from other forms of dementia:

* Fluctuating effects on mental functioning, particularly alertness and attention, which may resemble delirium

* Recurrent visual hallucinations

* Parkinson-like movement symptoms, such as rigidity and lack of spontaneous movement

In Lewy body dementia, memory problems often occur later in the progression of the disease.

Lewy body dementia can be confused with other forms of dementia, but it also has unique features, such as hallucinations and delirium.

The primary sign of Lewy body dementia is a progressive decline in cognitive functions, such as memory, thinking, and problem-solving. The decline in cognitive function is enough to affect the ability to work and perform normal daily activities. Although memory may be affected, it isn’t usually as impaired as in someone with Alzheimer disease.

Lewy body dementia is generally diagnosed when at least 2 of the following features are also present with dementia:

* Fluctuations in attention and alertness. These fluctuations may last for hours or days. Signs of these fluctuations include staring into space, lethargy, drowsiness, and disorganized speech. These fluctuations have been referred to as “pseudo delirium” because they are a lot like delirium.

* Visual hallucinations. These hallucinations recur and are very detailed. While the hallucinations may be upsetting to someone observing them, they generally don’t bother the person having them. Many people with Lewy body dementia have detailed visual hallucinations.

* Movement symptoms consistent with Parkinson disease (PD). Such movement symptoms include slow movement, shuffling gait, rigidity, and falls. Tremors may also be present, but not as pronounced as in a person with PD with dementia.

Additional signs and symptoms seen in Lewy body dementia include:

* Depression

* Sleep disorder that affects REM sleep, causing vivid dreams with body movement

* Dizziness, feeling lightheaded, fainting, or falling

* Urinary incontinence

The symptoms of Lewy body dementia may resemble other conditions. Always see a health care provider for a diagnosis.

How is Lewy body dementia diagnosed?

Diagram of a man receiving a CT scan
The only definite way to diagnose Lewy body dementia is by doing an autopsy – there are tests that show the presence of Lewy bodies. So, Lewy body dementia is diagnosed based on medical history, a physical exam, and symptoms.

In addition to a complete medical history and physical exam, the health care provider may order some of the following:

* Blood tests. These are to rule out conditions such as vitamin B12 deficiency and hypothyroidism (a lack of thyroid hormones).

* Computed tomography (CT) scan. This imaging test uses X-rays to create pictures of cross-sections of the brain.

* Electroencephalogram (EEG). An EEG measures the electrical activity of the brain.

* Magnetic resonance imaging (MRI). This imaging test uses a large magnet and radio waves to look at organs and structures inside your body. MRIs are very useful for examining the brain.

* Positron emission tomography (PET). PET may detect biochemical changes in an organ or tissue that can show the onset of a disease process before physical changes related to the disease can be seen with other imaging tests.

* Neuropsychological assessments. These tests assess mental functioning and include attention span, memory, language and math skills, and problem-solving skills.

* Psychiatric evaluation. This may be done to rule out a psychiatric condition that may resemble dementia.

How is Lewy body dementia treated?

Dementia with Lewy bodies has no cure. Treatment for Lewy body dementia involves addressing the symptoms.

Medications used to treat Alzheimer disease (AD) and Parkinson disease (PD) are often used to treat Lewy body dementia. Other treatments, such as supportive care, physical therapy, psychotherapy, and behavioral interventions, may be used, too.

It’s important that the health care provider treating Lewy body dementia is familiar with all aspects of the disease, because other specialists are often involved. Because Lewy body dementia shares features with AD and PD, those features will need to be treated. Many people with Lewy body dementia, however, can’t tolerate some of the medications for AD or PD. Caution must be used when prescribing certain medications for Lewy body dementia.

Living with Lewy body dementia

Interventions used in other forms of dementia may also help people living with Lewy body dementia. These include using glasses or hearing aids as needed, educating the patient and family, providing a structured environment, and teaching behavioral interventions. The interventions depend on the specific needs of each patient and his or her caregivers. Needed interventions will change over time as the disease progresses.

Hallucinations may be managed by simply ignoring them and educating the caregiver(s) about them. Improving lighting and keeping the patient around other people also helps.

It’s important to work with a health care provider familiar with Lewy body dementia and the many aspects of the disease. Other specialists are often involved, too.

When should I call my health care provider?

If you are diagnosed with FTD, you and your caregivers should talk with your health care providers about when to call them. Your health care providers will likely advise calling if your symptoms become worse, or if you have obvious and/or sudden changes in

Next steps

Tips to help you get the most from a visit to your health care provider:

* Before your visit, write down questions you want answered.

* Bring someone with you to help you ask questions and remember what your provider tells you.

* At the visit, write down the names of new medicines, treatments, or tests, and any new instructions your provider gives you.

* If you have a follow-up appointment, write down the date, time, and purpose for that visit.

* Know how you can contact your provider if you have questions.

5 common dementias, including Lewy Body Dementia

A post today on a Canadian newspaper website, Castanet (castanet.net), is about five common dementias.  The five include:  Alzheimer’s, vascular dementia, Lewy body dementia, frontotemporal dementia, and Wernicke-Korsakoff’s syndrome (caused by prolonged alcohol consumption).  Here’s a link to the post:


Here’s how Lewy body dementia (LBD) is described:

Lewy body dementia:
Often mistaken for other dementias, e.g. Parkinson’s dementia
* Presence of Lewy bodies: tiny spherical protein deposits that develop inside nerve cells in the areas of thinking, memory and movement
* Fluctuating cognitive impairment: periods of increased confusion & windows of lucidity
* Hallucinations or delusions occur frequently and can be quite detailed
* Spatial disorientation e.g. falls, fainting
* Tremor, rigidity and slowness of movement
* Highly sensitive to neuroleptic drugs: Risperidone

This is OK except for two problems.  First, the author says that LBD is mistaken for other dementias such as Parkinson’s dementia.  Well, by definition Parkinson’s (Disease) Dementia is ONE of the disorders on the Lewy Body Dementia spectrum.

Second, I’m not sure how “fainting” is an example of “spatial disorientation.”  Fainting is an example of autonomic dysfunction.

Definitely not by favorite short LBD overview….


Alzheimer’s Australia fact sheets on Lewy body disease

Alzheimer’s Australia (fightdementia.org.au) publishes ten terrific two-page “help sheets” on the topic of Lewy body disease.  So many people use the term “Lewy body disease” incorrectly but not this organization.

They say:

“Lewy body disease includes three overlapping disorders:
•    Dementia with Lewy bodies
•    Parkinson’s disease
•    Parkinson’s disease dementia
This overlap results in the disease being called a spectrum disease.”

And they say:

“Naming within the spectrum can lead to confusion.
•    Lewy body disease is the ‘umbrella’ term signifying there is underlying alphasynuclein deposits in the brain.
•    Parkinson’s disease is usually diagnosed when a person develops significant movement symptoms first.
•    Parkinson’s disease dementia is diagnosed when a person with established Parkinson’s disease subsequently develops significant cognitive impairment.
•    Dementia with Lewy bodies is usually diagnosed when a person develops significant cognitive symptoms first.
•    Lewy body dementia refers to the cognitive changes typically seen across the spectrum of disorders.”

There are ten fact sheets available from Alzheimer’s Australia:
* Lewy body disease (an overview)
* Cognitive changes in Lewy body disease
* Neuropsychiatric changes in Lewy body disease
* Motor changes in Lewy body disease
* Autonomic changes in Lewy body disease
* Information for family and friends
* Information for home and community care workers
* Information for day placement workers
* Information for acute care workers
* Information for care facilities

Here’s a link to the list of ten fact sheets:


Lewy Body Disease Help Sheets
Alzheimer’s Australia

In looking over the ten fact sheets, I think the five that are information for others, such as family/friends, home care workers, etc. are the best.

Here’s a link to the “Information for Family and Friends” help sheet:


Let me know what you think!


Overview of LBD Symptoms and Treatment – Webinar Notes

Though this webinar from mid-February was titled “Lewy Body Dementia: The Importance of Comprehensive Care and Support,” it’s really an overview of LBD symptoms and treatments.

Brain Support Network volunteer Denise Dagan said that the highlight of the webinar was that one of the speakers, Robert Bowles, has Lewy Body Dementia.  She said:  “Even though he didn’t speak much, he had a lot to say about what he needs from those around him and how he cares for himself.”

We previously posted about Robert’s blog.  See:


What I liked about the webinar was that challenges were presented and strategies offered to cope with those challenges.  Also, the webinar gave a good (but fast) overview of LBD symptoms with Robert chiming in every so often as to his experience with certain symptoms.

The webinar organizer was the National Alzheimer’s and Dementia Resource Center (nadrc.acl.gov), a US government center.  The speakers’ slides are available in PDF form on the NADRC’s website here:


And the webinar recording is available on youtube here:


By the way, the recording begins after some general info is given about webinar mechanics.  And the recording is “captioned” at the bottom of the youtube screen.  (Eventually you can learn to ignore the captioning.)

Denise’s extensive notes on the webinar are copied below.



Denise’s Notes from

Lewy Body Dementia: The Importance of Comprehensive Care and Support
February 15, 2017
Webinar Organizer:  NADRC
Host:  American Society on Aging

Angela Taylor, Lewy Body Dementia Association
Robert Bowles, LBD Advocate and Blogger (Living Beyond Diagnosis)

List 3 symptoms of Lewy Body Dementia (LBD)
2 ways it differs from Alzheimer’s
1 class of drugs to avoid

Dementia, the basics:
Dementia is a general term, not a disease.  The definition is cognitive decline severe enough to interfere with daily life.  It effects memory, language, executive function, judgement, attention, visuospatial skills, and has behavior symptoms.

LBD is the most mis-diagnosed form of dementia.  Often first diagnosed as Alzheimer’s, Parkinson’s disease (PD), or a psychiatric disorder.  The second most common form of dementia after Alzheimer’s.  Affects 1.4 million in the US, more men than women, and usually between 50-85 yrs old.

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

Symptoms at a glance:
– cognitive issues progress to dementia
– parkinsonism (gait and balance difficulties, stiffness, rigidity, and sometimes tremor)
– behavior changes caused by psychosis
– sleep changes

Importance of early diagnosis:
– Comprehensive clinical care improves quality of life.  More responsiveness to Alzheimer’s medications early on.
– Minimize risks for certain medication side effects.  People with a diagnosis of LBD should not be given some antipsychotics, benzodiazepines, sedatives, narcotics, medications for PD, anesthesia, etc.

– LBD is complex to diagnose.  Presenting symptoms vary and aren’t always well reported.  It typically requires a specialist.
– Challenging to treat because of severe medication sensitivities.  There are no FDA-approved prescriptions.  Its all off-label use.
– It was not on the public’s radar until Robin Williams died, so people are in the learning curve even as the need to advocate for themselves.
– Medication sensitivities in LBD are unfamiliar to healthcare providers, especially emergency rooms (ER) and hospitals.  If you have an LBD diagnosis, ask for a neurology consult in the ER, especially if behavior symptoms are presenting themselves.

What to do:
– Self educate about LBD symptoms and treatment
– Prioritize the well-being of the caregiver.
– Connect to the LBD community
– Recognize and reduce stress
– Comprehensive clinical care improves quality of life for both the person with LBD and caregivers.
– You may need to educate your employer if you are still working.

Strategies for Daily Life
Cognitive symptoms: forgetfulness, problem solving/analytical thinking, planning/keeping track of sequences, reduced attention (quick fluctuations of attention), disorganized speech and conversation, loss of sense of direction or spatial relationships between objects (getting lost).

Robert says he notices mostly difficulty with processing of information as it is presented to him, and retrieval of information he needs to be able to respond.  Interactions with others needs to be slower for him to understand and formulate his reply.

Strategies to compensate:
– Alzheimer’s medications.  Remember, there are none developed for, or approved for LBD.
– Psychological counseling can help with frustration
– Slow down
– Rest (even when mentally tired)
– Adjust your expectations
– Learn to accept help

Robert would like people not to interrupt his train of thought and he needs time to understand you and process his response.

Fluctuation symptoms:
– Concentration and/or alertness
– Episodes of confusion
– Excessive daytime sleepiness

Robert reports emotional fluctuations, too.  He can start with a day feeling normal and happy.  After awhile he’ll start feeling giddy.  Then later brain fog will set in.  Eventually he’ll have a ‘sizzled brain’ feeling,  And, by the end of the day he’ll have fried brain followed by shut down.  This taught him to slow down and rest because it take 2-3 days to recover from fried brain.

Strategies to compensate:
– psycho-stimulants may help
– be flexible & patient
– schedule a nap

Parkinsonism symptoms:  rigidity or stiffness; shuffling walk; balance problems; tremor;
slowness of movement; decreased facial expression; change in posture; reduced voice volume and eventually problems swallowing

Robert reports also freezing, and moving backward or sideways unintentionally.

Strategies to compensate:
– Slow down to give brain time to sync with your intended movements so you go in the right direction and not fall while turning or going around corners
– Carbidopa-levodopa may help (but may worsen hallucinations)
– Physical therapy (PT)
– Occupational therapy (OT)
– Speech therapy
– Assess the environment for safety/falling hazards

Autonomic Dysfunction symptoms:
– Dizziness or fainting (orthostatic hypotension – OH)
– Temperature regulation
– Urinary incontinence & urgency
– Constipation
– Unexplained blackouts or transient loss of consciousness, unresponsiveness

Robert’s experience during his early mis-diagnosis of Neuro-cardiogenic Syncope was tons of medications.  Once properly diagnosed as OH, he was effectively treated by waist-high stockings

Strategies to compensate:
– Compression stockings, add salt to the diet, adequate hydration
– Dress in layers
– Use a toileting schedule, explore alternates to medications
– Stool softeners, added fiber
– Monitor and call your doctor with concerns

Sleep Disorders symptoms:
– Acting out dreams, sometimes resulting in injury (REM sleep behavior disorder – RBD)
– Insomnia
– Restless leg syndrome

Strategies to compensate:
– You must treat sleep or daytime cognition is worsened!
– Clonazepam or melatonin for RBD
– Assess injury risks.  Move bedside tables farther from the bed, put mats or a mattress on the floor beside the bed, etc. to reduce injury risk.
– Find a balance with naps in the daytime so you sleep at night
– Eliminate caffeine after dinner

Behavior & Mood symptoms:
– Hallucinations (audio and/or visual).
– Delusions
– Depression
– Apathy
– Anxiety

Robert says to consider the emotional implications when hallucinations happen.

Strategies to compensate:
– Cholinesterase inhibitors are part of the long-term treatment strategy
– Accept their reality – don’t try to rationalize & reason with them.
– Respond to their emotions, not the hallucination
– Redirect their attention when they are reassured & emotionally not upset
– Consult the physician if behavior suddenly worsens, because it may be something else (over tired, over stimulated, a urinary tract or other infection)

Assessing & Treating Acute Psychosis:
– Assess for pain, infection, other medical causes, re-evaluate med list
– Use cholinesterase inhibitors as part of the long-term treatment strategy
– Review, reduce, eliminate select medications
– Assess the environment
– Use non-pharmacological methods
– Consider use of an antidepressant
– Use atypical antipsychotic medications cautiously and monitor for side effects
– Do not use traditional antipsychotic medications!

How is LBD different from Alzheimer’s?
Different proteins cause the breakdown of normal functioning.  In Alzheimer’s, the initial symptom is mainly memory loss, but LBD has more and different initial symptoms.

How is LBD different from Parkinson’s disease?
It is the same protein causing the breakdown of normal functioning.  Initial symptom presentation may be the same or different. While cognition is sometimes affected in Parkinson’s disease, dementia is always a factor at the time of diagnosis in LBD.

Preparing for the Office Visit:
Advice for family:
– Be a good detective
– Use LBDA’s Comprehensive Symptom Checklist
– Be a strong advocate

Suggestions for Medical Provider:
– Speak to the patient directly
– Ask what the most bothersome symptoms are – prioritize treating them one by one
– Listen to the care giver for signs of depression and burnout
– Refer to PT, OT, and speech therapy early
– Be proactive with referral to hospice.  They can be very supportive of the entire family.  Life expectancy is 5-7yrs from diagnosis.

Driving & LBD:
– Increased risk of accidents due to:
– Reduced attention
– Slowed thinking
– Visuospatial skills reduced
– Visual hallucinations
– Motor changes: rigidity, slowed movements, myoclonic jerks

Strategies to get someone to stop driving:
The caregiver should trust their own judgement.  If they won’t drive with the person who has LBD, that person should stop driving.  Contact the medical provider in advance of an appointment if there are safety concerns.  Let the medical provider serve as ’the bad guy.’
Use friends, family and senior services to get around.  Don’t forget Uber & Lyft.   Gogograndparent.com will book them for you over the phone for a small fee.

Caring for the caregiver, especially if he/she has their own health issue, already.  They are at greater risk for:  depression, anxiety, isolation, self-doubt, and burnout.

Causes of that greater risk:
– LBD: disrupted sleep, behavioral changes, fluctuations, safety risks
– Delayed diagnosis, especially when the healthcare provider is unfamiliar with LBD
– Low pubic awareness delays diagnosis, and effective treatment.
– Reluctance to ask for and accept help
– No familiarity with community resources, like respite care.

Strategies to compensate:
– Make sure you have an emotional support network: friends, family, an LBD support group and online communities, counselors, church.  Have some fun!
– Early referral to community resources.  You’ve got to think, “Who’s going to step in if I suddenly become ill?”
– Self-education about LBD
– Embrace their role of patient advocate

Refer Families to Community Resources:
Educate families early about the availability of home health & the importance of respite.
Admission to a long term care facility is generally earlier than with Alzheimer’s, commonly because of the parkinsonism symptoms and behavioral changes.

Questions & Answers

How are people generally diagnosed?
Referral to Neurologist.  About 2/3 are done by specialists.  Usually, there is a full physical to rule out other causes in behavioral changes.  One scan detects change in dopamine producing cells  Its not conclusive, but results indicate the Parkinson’s/LBD realm is involved so points in right direction.  Autopsy is the only definitive form of diagnosis.

What were Robert’s first symptoms?
Robert was misdiagnosed for about 18 months.  He saw eight doctors, a counselor, and psychiatrist.  He was catatonic & passing out repeatedly.  In retrospect, symptoms probably started five years prior, during a knee replacement.  He was not ready for discharge and was hallucinating so he was re-admitted.  Two years before retiring his daughter suspected Alzheimer’s, then PD, but it was finally determined to be LBD.

Is there typically memory loss in LBD?
Memory is very good but processing information and retrieval is sometimes painfully slow.  Angela suspects people who have more difficulty with memory have a diagnosis of mixed dementia.  LBD had many faces.  That includes executive function failure or loss of attention that can appear to be memory loss.  For all of us, if you don’t use it, you lose it!

Really such a broad range of age (50-85yrs old) at diagnosis?
Usually more seniors, age 70-80 but diagnosis is often years after the first symptoms, so its hard to pin down when it started.

Strategies for behavioral symptoms, like gaining cooperation for showering, taking meds?
Pick your battles.  Few things must be done right now.  Leave meds for an hour and see where they are when you return.  Take yourself out of the equation and focus on the patient’s needs.

“Managing the Change that Nobody Wants”

Though this blog post was written by a caregiver to someone with Lewy Body Dementia, the thoughts expressed apply to all of us, regardless of neurological condition or role. The author, an organizational development consultant who helps business leaders achieve transformational change, shares what she’s learned about “managing the change that nobody wants.”  Here’s a link to the post:


Managing the Change that Nobody Wants
by Ava S. Butler
October 6, 2016

Ava’s advice covers 13 points, some of which are:

* Cherish the beautiful moments and keep them in the forefront of your mind.

* As they say on airplanes, ‘Put your own oxygen mask on before helping others.’

* Be kind to yourself.

* Don’t be afraid of medical terms or doctors that tell you things you don’t understand.

* Talk about your predicament with forthright honesty.

* Know that others are grieving too.

* Do your best to accept your ‘new normal’.

* Help others like you find their way.

* Pray for the best and plan for the worst.

The full blog post is below.




Managing the Change that Nobody Wants
by Ava S. Butler
October 6, 2016

I’m an organizational development consultant and I specialize in partnering with business leaders to achieve transformational change. I’ve lead dozens of large scale change projects, most of them moving individuals, teams and organizations to a stronger and better place. I think of change as a positive thing and managing transformational change is my life’s calling.

But not all change is wanted and not all change has a happy ending. My dear husband has Parkinson’s disease and Lewy-body dementia. Its taken over our lives. We fight a battle every day that we will not win. Richard’s ending won’t be fast and it won’t be pretty. It’s costly, time consuming and emotionally draining. No drug will save him and although there is hope for future generations inflicted with these diseases, it’s too late for Richard. We make it the best it can be, but our efforts won’t change the outcome. I’m managing the change that nobody wants.

There’s an irony to unwanted change happening to the change expert. And although my background provides helpful skills and experience, I’m in uncharted waters. I’m learning every day, if I want to or not. And I’ve got a lot more learning to go as we move forward towards our inevitable fate.

Here’s some of what I’ve learned so far. I hope its advice that you can use if you too are dealing with a change you don’t want and can’t avoid.

Cherish the beautiful moments and keep them in the forefront of your mind.

There are plenty of moments of pure hell and they will take over your consciousness if you don’t try hard to balance your thoughts.

For me it’s the tender kiss that still takes my breath away, the gentleness of Richard placing his hand on top of mine, and his beautiful blue eyes on the days they still twinkle. Or the way that Richard’s face lit up when one of his caregiver’s daughters sang him a song she learned in school that day and we all sang the ABC’s song together.

Find joy in the beauty of the world around you.

Take time to acknowledge when the sun is shining, the birds are singing, a hummingbird is outside the window, the leaves are turning or the neighborhood children are playing gleefully in the pool.

Be grateful for the big and small acts of kindness that others show you.

Be vulnerable enough to let people help in ways you would never ask for or even think of. Kindness comes from people you know and also from complete strangers who jump to action when they see you need help.

A few years ago, a man at the Safeway came to our rescue when Richard was hallucinating (due to his Lewy-body dementia) and very afraid. He was running away from me calling for help and I couldn’t get him in our car. The man stopped pumping gas to tell Richard he would help. He told Richard that he was safe and offered him his water as I finally got Richard to take his anxiety medicine. His help allowed Richard to calm down enough that I could get him home. It was early in Richard’s diagnosis and I didn’t have it down yet. I think of that kind man often and am still so grateful for his help.

Do the best that you can every day.

And know that there will be days when your best may not be very impressive. But it’s the best that you can do for that moment. And that’s all you can ask of yourself.

As they say on airplanes, ‘Put your own oxygen mask on before helping others.’

You cannot help others if you are burning out yourself. Take the time to go out with friends, take a walk, or whatever makes you happy or at least gives you a break.

Be kind to yourself.

You will make silly mistakes due to stress, and big mistakes because you didn’t know any better at the time. There are days that you will not find joy in anything and that is to be expected. But try not to beat yourself up.

Don’t be afraid of medical terms or doctors that tell you things you don’t understand.

It’s their job to explain things to you. Ask questions and paraphrase back to ensure understanding. Ask again and again until you feel comfortable understanding the information you need to manage your situation.

Talk about your predicament with forthright honesty.

This lets others talk about it too. Learn to talk about uncomfortable topics that you never thought you would.

Know that others are grieving too.

And they might say or do things that are not helpful to you. But please remember that they are trying to do what they think is best. In the event that someone is not helping you at all with their attitude or advice, don’t hesitate to ask them to give you space.

Turn yourself into a project manager extraordinaire.

Being the primary caregiver means managing lots of moving parts. Be as organized as you can. If this is not your skill set or you are too stressed out or busy to manage the many aspects of your loved one’s life, ask someone you trust to do it for you. And don’t think that once things are set up that they don’t need constant oversight. Situations can get out of hand fast without attention.

For me, I manage a fabulous team of 24/7 caregivers, monitor the cleaning schedule I created, ensure Richard is eating a balanced diet, schedule appointments, and purchase supplies and groceries. I also work and make time to be with my husband. I couldn’t do all that without being a good project manager.

Do your best to accept your ‘new normal’.

There is no point in expecting your life to be like it was before disease struck your life or like the lives of others in your peer group. Your life is different and special now and do what you can to enjoy it. Focus on what you can do instead of what you can’t.

For us, international travel was a big part of our lives, and we can’t do that anymore. We can’t travel together outside our home town of Tucson at all. But we can get in the car with a caregiver and take a trip to our local mountains for an hour.

A good day for Richard isn’t anything like a good day for a normal healthy person. Using traditional standards to measure for a successful day is neither appropriate or gratifying. Measure success by your own customized standards.

Help others like you find their way.

Take the time to share what you’ve learned with others facing the same challenges you face. I’ve learned so much through my journey and have been able to help others who are not as far along in their journey as I am. In turn, they support me too.

Pray for the best and plan for the worst.

Of course you want the best for your loved ones and yourself. Miracles do happen and I pray for and even expect one. But I also must focus on more sobering things like financial planning scenarios and what to do when Richard needs a wheelchair.

I’m not the only one managing the change that nobody wants. There are millions of people just like me, with every imaginable background and story. I hope I can help others, just as so many others are helping me.