Notes from webinar on three non-AD dementias, including Lewy Body Dementia

There was a 90-minute webinar on April 6th, hosted by Resources for Integrated Care, was packed with lots of info on dementia with Lewy bodies (DLB) and frontotemporal dementia (FTD) with less info on vascular dementia (VAD).  (Note that throughout the webinar, with few exceptions, the term “Lewy body dementia” was used.)  The webinar, for both healthcare professionals and family caregivers, was fast-paced.  Presentations were for the first hour, and then there was a 30-minute Q&A.

You can find a link to the webinar recording here:

You can find a link to the webinar slides here:

VAD, DLB, and FTD are the most common dementia types after Alzheimer’s Disease (AD).  Here are short definitions:

* 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 cognition.

* 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.

The management strategies that are effectively in AD are less effective in these other three dementia types.

Brain Support Network volunteer-extraordinaire Denise Dagan listened to the webinar a couple of times and took extensive notes on the LBD content and some notes on the other two dementias.  She has provided the time stamp at various points so that you can fast forward through the recording, if you’d like.



Denise’s Notes from

Beyond Alzheimer’s Disease, Other Causes of Prerogative Dementia in the Older Adult
Webinar hosted by Resources for Integrated Care
April 6, 2017

* 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 (to someone with FTD)

After many housekeeping comments and credits, introduction of the webinar presenters begins at time stamp 3:15.



After some audience polling, Dr. Lantz begins at time stamp 9:15 with how dementia is identified and diagnosed by evaluation as there are no clinical tests yet available to diagnose any type of dementia.

Dementia is a major neurocognitive disorder.  According to the American Psychiatric Associations Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (APA DSM5), to be diagnosed with dementia a person must exhibit significant decline from a previous level in the five domains of cognitive functioning, which include:
* Complex attention
* Executive function
* Learning and memory, language
* Perceptual-motor
* Social cognition

Diagnosis is based on collateral information including self-reporting, standardized neuropsychological testing or quantified clinical assessment.

Cognitive deficits interfere with everyday activities, social or occupational functioning.


Mild Neurocognitive Disorder [Mild Cognitive Impairment (MCI)], according to the APA DSM5, does not meed criteria for dementia.  MCI is described as:
* Subjective and objective decline in cognitive domain: primarily memory, language or motor
* No significant impairment in:
— Other cognitive domains
— Activities of Daily living
— Social or occupational functioning
* 10-15% of patients with MCI progress to develop dementia each year
* “Precursor of dementia” versus spectrum of normal aging
* Patients with MCI should be identified and monitored for cognitive and functional decline due to their increased risk for dementia
* There are no currently FDA approved medications for MCI


Vascular Dementia = dementia due to cerebrovascular disease.
* Cognitive loss due to cerebrovascular disease
* 2nd most common cause in late-life after Alzheimer’s.
* Risk factors:
— Hypertension (high blood pressure)
— Diabetes
— Hyperlipidemia
— Smoking
— TIAs (transient ischemic attack) or mini-stroke is a neurological event with the signs and symptoms of a stroke, but which go away within a short period of time.
— Stroke.
* Decline may be abrupt due to a stroke or series of TIAs
* Cognitive loss may be focal, with more awareness of symptoms
* Disturbance of emotions and mood is common
* Caregiving needs are due to medical and physical conditions (paralysis of one side of the body due to stroke, and multiple medical problems and medications).
* Decline may be step-wise with plateaus in symptoms.  They may recover after 1st stroke, but decline years later due to more strokes.
* Mixed variants of dementia (Alzheimer’s with vascular dementia) are common.
* More men than women because men have more vascular disease than women.

She displayed a scan of vascular dementia at time stamp 13:45

She inserted a slide of two other types of vascular dementia at time stamp 14:00, but didn’t discuss them.


Lewy Body Dementia
* Memory loss and other cognitive deficits that often have a fluctuating and variable course, and relatively rapid onset
* Motor rigidity, parkinsonism features
* Prominent hallucinations, usually visual
* Unsteady gait, syncope (fainting), unexplained falls
* More rapidly deteriorating course
* 3rd most common dementia after Alzheimer’s and Vascular dementias
* more common in men than women

She displayed a microscope image of a lewy body at time stamp 15:30

Sensitivity to all psychiatric meds, but definitely psychosis requiring meds, which makes it complex to treat.


Frontotemporal dementia at time stamp 16:12
* Significantly earlier onset between 40-60 yrs old because of slow and subtle onset
* Atrophy prominent in the frontal and temporal lobes of the brain (associated with personality, mood, behavior, impulse control)
* Slow onset with early changes in personality, impulse control and language
* Memory, arithmetic, copying figures often preserved until later in the course so difficult to diagnose early on
* Behavior often disinhibited, repetitive, socially inappropriate
* Prominent personality change very early
* Early onset with very slow, progressive decline
* Memory impairment later in the course
* Behavior changes: Disinhibition, impulsivity, apathy, depression, verbal outbursts
* Lack of recognition, agnosia (Inability to interpret sensations and hence to recognize things, people and/or sounds.  With agnosia they are particularly unable to recognize their own changes in behavior and capabilities, hampering diagnosis and caregiving.)
* Treatment is very symptom driven as there are no agents available for prevention or slowing progression

Two subtypes: Pick’s disease and frontotemporal dementia with parkinsonism at time stamp 17:52

She displayed a Pick body microscope image at time stamp 18:05


Treatment of Cognitive Symptoms of Vascular and Lewy body Dementia:
* Cholinesterase Inhibitors slows the rate of decline:  Donepezil, Galantamine, Rivastigmine, for mild to moderate Alzheimer’s (AD), Vascular dementia (VAD), mixed the benefits relatively similar: +3 points ADAS-Cog, 4 to 6 Month delay in progression
* Individual response variable and difficult to measure:  20% of patients show “Greater than average” response, 20% “some response”, but 30-50% show no response
* Greatest effect appears to be delay in need for nursing home placement of 6 to 8 months
* NO ROLE for use in Frontotemporal Dementia (FTD), may worsen behavioral symptoms

Treatment of Cognitive Symptoms:
* Rivastigmine may be more helpful in LBD than the other available cholinesterase inhibitors
* Memantine is approved by the FDA for Alzheimer’s, but not enough evidence to show benefit for other types of dementia
* Cholinesterase inhibitors have no benefit in FTD and may worsen mood and behavior
* Cholinesterase inhibitors may cause nausea, vomiting, weight loss (due to GI upset) and bradycardia (slow heart rate)

Pharmacologic Treatment for targeted severe symptoms:
* The idea is to minimize symptoms without side effects, especially from poly-pharmacy.
Use of these is justified when patients are disturbed by hallucinations, especially if they try to act on them in dangerous ways.
* Not a substitute for good care and behavioral management.
* Psychosis (hallucinations, delusion) > Rx options: Antipsychotic Agents (risperidone, olanzapine, quetiapine, aripiprazole)
* Depression, Anxiety, & Irritability > Rx options: SSRI (sertraline, citalopram) or bupropion, trazodone, mirtazapine)
— These are particularly common early in these dementias, when mood treatment can be particularly helpful.

Pharmacologic Treatment for physical aggression:
* These are all off-label drug uses, but can be helpful.
* Severe Physical aggression (also helpful for severe impulsivitity and mood lability > Rx options: Mood Stabilizer (valproate, lithium, carbamazepine, gabapentin)
* Moderate Physical Aggression > Rx options: Mood Stabilizer

She put up three slides with Dosing Guidelines and Side-Effects charts for antidepressants and mood stabilizers at time stamp 23:37


Symptom presentation in dementia depends on these factors and directly affect care challenges:
* Location of the degeneration
* Function of the degenerated area of the brain
* Pathologic changes at the cellular level (e.g. presence of Lewy bodies)
* Comorbid conditions
* Environmental factors producing excess disability
* Premorbid personality

At time stamp 25:22 she put up PET scan imagines distinguishing dementias from each other (kind of amazing).

The location of damage is different, therefore so are care needs:
* Due to time constraints we will examine two more common non-Alzheimer’s dementias:
— Lewy Body Dementia (LBD)
— Frontotemporal Lobar Degeneration (FTD or FTLD)


Lewy Body Dementia:  Three common presentations
* Regardless of the initial symptom, over time all three presentations of LBD will develop very similar cognitive, physical, sleep and behavioral features.
* Some individuals will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia.  This is diagnosed at Parkinson’s disease dementia.
* Another group of individuals will start out with a cognitive/memory disorder that may be mistaken for Alzheimer’s disease, but over time two or more distinctive features of fluctuating cognition and psychosis (hallucinations and/or delusions) become apparent leading to the diagnosis of ‘dementia with Lewy Bodies’ (DLB).
* Lastly, a small group will first present with neuropsychiatric symptoms, which can include hallucinations (primarily visual, but also olfactory or auditory), behavioral problems, and difficulty with complex mental activities, also leading to an initial diagnosis of DLB.

Common Symptoms of Lewy Body Dementia:
* Sleep disorders (can be present up to two years prior to LBD diagnosis)
— Acting out dreams while asleep
— Excessive daytime sleepiness
— Restless leg movement
* Impaired thinking
— Executive function (planning, processing information.)
— Memory fluctuates
— Ability to understand visual information fluctuates
* Problems with movement
— Tremors, stiffness, slowness and difficulty walking
— Anti-Parkinson medications often don’t work well and may cause initial hallucinations
* Altered sensory perception (particularly visual-spacial perception)
* Hallucinations
— Often of animals or children
* Behavioral and Mood Symptoms
— Depression, apathy, anxiety, agitation, delusions or paranoia
* Changes in Autonomic Body Functions
— Blood pressure control, temperature regulation, postural control (tend to fall a lot), bladder and bowel function
* Exquisite Sensitivity to medications, particularly those that affect the central nervous system.
— Don’t use old generation antipsychotics.  With new antipsychotics, start with a low dose and ramp up to an effective dose.
— Don’t use general anesthesia.

Care of Lewy Body Dementia:
* Similar to Alzheimer’s – decrease stimuli, increase rest, promote exercise (Big & Loud Programs) and balance
* Safety due to REM sleep disorder, fall precautions due to autonomic dysfunction, swallowing issues
* Supportive (self-care) activities of daily living (ADLs)
* Control of misleading environmental stimuli (especially TV) and medications that trigger hallucinations and delusions
* Prepare family for response to potential aggression
* LBD Association and support groups

Use of Therapies:
* Physical therapy – Design a program and teach to patient/family focusing on postural stability and core strength
* Exercise Programs – Big and LOUD Programs!!!
* Recreational Therapy
* Occupational therapy – ADLs
* Speech pathology – swallowing, spoken volume
* Pharmacist consultation – OTCs can be problematic and interact, so ask before taking anything.

Lew Body Dementia Support and Resources slide includes a list of resources, including encouragement to attend local support group meetings.

Robin’s note:  See Brain Support Network’s list of top LBD resources here, which includes the two resources Dr. Hall mentioned:

Denise’s note:  If you are in the San Francisco Bay Area, please attend Brain Support Network’s LBD caregiver-only support group meetings!  We just met last Sunday.  Our next meeting is in June.  Email Robin Riddle to get on the meeting reminder email list.


She spoke about Frontotemporal Dementia (FTD) from time stamp 31:29 until her summary at 46:43.  FTD is often misdiagnosed for 10-14 years and is the most difficult to care for, because of youth and psychiatric issues.


* As diagnostic specificity improves, non-Alzheimer’s dementias will be diagnosed more frequently.
* A “one-side-fits-all” care program will not meet the needs of people with non-Alzheimer dementias.  They differ in terms of symptom presentation, behavioral responses, and ability to tolerate medications.  [When searching for a day program or caregivers for your family member with a non-Alzheimer’s dementia diagnosis, interviewing for their understanding of they type of dementia your family has, and their preparedness in caring for that type of dementia, is critical in finding the right program or caregiver.]
* Families and care providers are desperate for answers, ongoing support, and to seek out others suffering from similar conditions.
* Interdisciplinary care and research is essential for humane approaches to these vexing conditions.


Rebekkah Wilson, MSW spoke next at time stamp 46:29

Beyond Alzheimer’s Disease, Impact on the Individual/Family System:
* Challenges with diagnosis
* Symptoms generally less recognized/understood
* Caregiver burden
* Younger onset considerations
* Community resources and considerations
— Legal
— Financial
— Emotional support
— Care options

Psychosocial Impact – Diagnosis
* Misdiagnoses common
— in FTD as late onset mental health issues (bi-polar), or marital problems
— in LBD when initial presentation is non-motor symptoms
* Rearview mirror clearer; but by then there are consequences of actions taken prior to diagnosis
— unnecessary treatments, or surgery
— impulse control issues in FTD can result in overspending of college & retirement funds, or loss of jobs & stability
* Sense of relief to get diagnosis
— Negative experiences prior to diagnosis
— Empowerment through learning about diagnosis (now I know what I’m dealing with)
* Present and future support – Programs are set up on an Alzheimers disease model.  Some areas of the country are more progressive and have more support groups and day programs/caregivers for non-Alzheimer’s dementia.

Psychosocial Impact – Symptoms
* Less recognized because Alzheimer’s disease is everyone’s reference point
– Memory may not be impacted, so dementia not recognized and symptoms not addressed
* Safety considerations due to brain changes (driving, wandering, judgement)
* Fluctuations in mental status misinterpreted (esp. in young patients misdiagnosed as bi-polar, marital discord, OCD, etc.)
* hallucinations/REM
* Impact of FTD symptoms
– Legal
– Financial
– Employment
– Social

Psychosocial Impact – Caregiver Burden
* Nature of Symptoms
— FTD – especially behavior and language changes
— LBD – especially cognitive fluctuations (can be moment to moment, rather than good morning & bad afternoon)
* High caregiver stress
* Isolation due to being a ‘rare’ diagnosis (need to find a support group with the same non-Alzheimer’s diagnosis)
* Age of onset impacts normalization (especially FTD & young onset Alzheimer’s)
— Expect memory and cognitive changes in older adults.
Younger people with dementia are misdiagnosed with mental health issues or arrested for unruly public behavior.
— Parents providing care for person with dementia (PWD)
— Care for PWD while caring for kids in household (sandwich generation)
* Ambiguous loss / anticipatory grief

Psychosocial Impact – Young Onset
* Developmental stage of the family
— Young kids at home, frequently in young onset families.
— Aging parents caring for their children with young onset dementias.
* Concerns about genetics
* Career and employment considerations
* Financial implications – primary caregiver may now have to work (maybe more than one job, depending on their skill set.)
* Challenges finding services because they are not trained to care for non-Alzheimer’s dementia

Legal and Financial Considerations
* Legal planning documents (maybe guardianship or conservatorship)
— Power of Attorney for Healthcare
— Power of Attorney for Finances
— Living Will
* Employment Laws
* Early Onset diagnosis impacts income and insurance (pre-Medicare age)
* Medicare
* Social Security Disability
* Social Security Compassionate Allowance to expedite benefits
* Additional option for financing care

The Compassionate Allowances (CAL) initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security’s definition of disability.  It is not a separate program from SSA’s two disability programs, SSDI and SSI.

There is no special application or form that is unique to the CAL initiative.  Individuals with a CAL condition apply for benefits using the standard SSA process for filing claims for SSDI, SSI or both SSDI and SSI benefits.  SSA will expedite the applications of those with a CAL condition.  Applications for disability may be filed online, in the local field office, or by calling 1-800-772-1213.  To learn more about the CAL initiative, see:

Community Resources and Services
* Support Groups for both caregiver AND the person with a diagnosis
* Care models in programs, including day facilities and nursing facilities are based on Alzheimers, but expanding.
* Families are using online information & medical community to educate care models.
* Limited experience and understanding of non-Alzheimer’s dementia

Care Planning
* Establishing the care team (Neurologist, PT, OT, Pharmacist, speech therapist, and the primary caregiver.)
* Determining goals for care team, based on location of care (home or facility) (comfort & safety).  Focusing on the primary goal(s) helps to make decisions.  For example, when choosing a care facility for someone with LBD, focusing on fall prevention as the primary goal may eliminate several options.  Narrowing the number of choices makes the decision easier.
* Support for the person with the diagnosis
* Knowledge and support of the care partners
– Family/friends
– Professionals

Challenges with Home & Community Based Care in Non-Alzheimer’s dementias
* Facility care for FTD
* Cognitive fluctuations as a challenge for care in LBD
* Hospice / palliative care & denials of admission because guidelines are based on Alzheimer’s

Best Practices for Home & Community Based Care
* Recognize care for non-Alzheimer’s dementias is different than Alzheimer’s
* Structure very important
* “Failure free,” low demand engagement
* Group versus individual activities (For Alzheimer’s people, group activities work well, while for young onset individual and non-Alzheimer’s dementias, independent activities work better)
* Recognize preferences may differ from other residents if younger
* Risky or impulsive behavior may increase safety concerns.


Sharon Hall spoke last about being a family caregiver of two types of dementia simultaneously at time stamp 1:07:47

Cares for both her 90+-year-old mother with vascular dementia and her husband with bvFTD – yikes!

Feels most difficult aspects is changing role from daughter/wife to caregiver through ambiguous loss process.

Challenging to early onset patient in finding long-term care, especially day programs.  Her husband is physically robust so people don’t expect his behavior to be dementia, but think he’s joking or has mental illness.  Day programs don’t have activities he’s interested in.

Physical contact is ok for people with Alzheimer’s, but if you touch someone with FTD they WILL touch you back.  They also say inappropriate things.  She tried handing out cards excusing his behavior, but she finds talking with people about it, even including her husband in that conversation, educates people better.  Sometimes, they don’t believe her.

Meds are not the only way to manage behavior, especially in FTD, and can make things worse.  It is better to be their advocate and understand how to manage behavior without it.  You can’t expect someone with dementia to follow standard rules of behavior.  You have to go with whatever they’re doing, as long as it’s not dangerous or too disruptive.

Being their advocate, especially in understanding where difficult behaviors come from, is key.  Employing their assistance in as many activities of daily living as they can manage, throughout the day but including rest periods, is the best way to minimize behavior problems.  It occupies their attention, keeps them out of trouble and from being bored, and makes them feel they still are useful members of the family and society.

There’s a crazy financial burden with young onset dementia families, because they had to stop working early so they qualify for less SSI than people who retire later.  Especially people with FTD, because of spending compulsions, can spend through college and retirement savings so must be taken off all financial accounts as soon as diagnosis is made.

FTD has unusual eating habits, crave carbs, etc.  Hygiene can be an issue, but nobody ever dies from not taking a shower.  Forcing participation in conventional hygiene and other tasks on someone with non-Alzheimer’s dementias can bring on unwanted behaviors.  Understanding what you’re dealing with and working with them is the key.  If it’s not dangerous, let them do what they want to do.


Q&A at time stamp 1:16

Sharon, what techniques work best to manage behaviors.
I apologize to him if she sees she’s done something to trigger a behavior.  Being on his side diminishes the behavior.

Rebekkah, can a healthcare surrogate with no family member present, place a dementia patient in assisted living or LTC if its in their best interest?
A medical decision maker can

Dr. Hall, do you have suggestions for alternatives when access to site services is a challenge?
Psychiatric services, but start with medical and neurological workup.

Dr. Lantz, FTD has been connected with concussion or head trauma?
No (listen for longer answer)

Dr. Hall, are sensory used to treat patients with challenging behaviors arising from dementia?
Sensory rooms are used to treat dementia.  (listen for longer answer)

Dr. Lantz, In early FTD what techniques do we use for early treatment and diagnosis?
monitor and evaluate symptoms and mitigate problems.  PET scan.  Team diagnosis approach, especially behavioral neurology training will better recognize FTD.

What do any of you know about a web based tool called WE Care Advisor geared to help family caregivers?
Nobody has heard of it.

You all stress the importance of interdisciplinary team supporting dementia and caregivers.  Non-medical support?
Area Agency on Aging, the Alzheimer’s Association, access to social services and medical help, as well.
FTD & LBD have national resources but those 2 have local resources.
Join a support group to share resources, moderators educate on resources in these groups.

Dementia friendly communities?  How do I find one?
They look at developing activities and resources places for people with dementia, including painting, coffee shops with dementia-firendly hours.  Locations are based on minimal stimulations, etc.  People with FTD have a harder time participating because their dementia peers with other diagnosis can’t communicate with them well.  Your local newspaper may have done an article on the opening of one in your area to help you find one near you.

“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 ( 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 (, 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:,65/

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 (, 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 ( 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 (, 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. 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.