Lewy Body Dementia Info on Dementia Aide (website)

Dementia Aide, a relatively new website (dementiaaide.com), is focused on selling what it calls dementia-related products.  While a few things such as t-shirts are disorder-specific, most of the products are caregiving items.  They have pages on their website for Alzheimer’s Disease (AD), frontotemporal dementia, vascular dementia, and Lewy body dementia (LBD).

The LBD section, written in September 2016, won’t be added to our list of “Top Resources” but it’s worth checking out.  They seem to have pieced together information from lots of different resources (not always giving attribution every place they could.)  For example, the chart on the difference between LBD, Parkinson’s Disease (PD), and Alzheimer’s is straight from the Lewy Body Dementia Association but this is only pointed out in one place (not everywhere the chart is).

You might check out their infographic on what they say are the four stages of LBD (on the symptoms page).

The only obvious error I saw was that they don’t have an accurate description of “Lewy body dementia” within the Lewy body disease family.  They show Lewy body dementia is the same thing as Dementia with Lewy Body.  Actually, Lewy Body Dementia is an umbrella term that refers to both Dementia with Lewy Bodies and Parkinson’s Disease Dementia.

Here’s a link to the LBD section:



“The A’s of Dementia” – Amnesia, Atypical Depression, Aphasia, Agnosia, Apraxia

CaregiverTeleconnection is a service offered by WellMed, a charity based in San Anontio.  These are one-hour conference calls (audio only) on topics of interest to caregivers and family members.  You can find information on these conference calls at caregiverteleconnection.org.

In late May 2017, one of the audio talks featured Tam Cummings, a getontologist.  Her topic was the “A’s of Dementia.”  She covered:
* amnesia:  loss of memory; see in Alzheimer’s
* atypical depression:  causing irritability and aggression, often treated with dangerous, ineffective, antipsychotics
* aphasia:  loss of the ability to understand and express speech
* agnosia:  inability to recognize people, objects, sounds, shapes, or smells
* apraxia:  inability to have purposeful body movements

Brain Support Network (BSN) focuses on three non-Alzheimer’s dementias including Lewy body dementia (LBD), and two rare dementias, progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD).

Certainly atypical depression, aphasia, and agnosia can happen with any of the BSN disorders.  Amnesia can happen in any of the BSN disorders *if* Alzheimer’s co-occurs.  And apraxia is part of the diagnostic criteria for CBD.

The speaker begins the talk by explaining that there are many types of dementia.  She notes that as more and more of the brain is engulfed in the disease process, neurological symptoms of each type of dementia overlap.  She also explains how damage to specific parts of the brain result in loss of certain skills.

Brain Support Network volunteer Denise Dagan listened to the talk and took some notes.  See below.



Denise’s Notes from

The A’s of Dementia
Speaker:  Tam Cummings, PhD
CaregiverTeleconnection (Caregiver SOS) Audio Conference
May 23, 2017

Dr. Cummings began by defining dementia as cognitive deficit that impairs one’s ability to perform the activities of daily living (ADLs), affecting at least two lobes of the brain, progressive, and terminal.  She explained that there are many kinds of dementia and recommends people ask the same types of questions about dementia that we would ask about cancer.
– What type of dementia?
– It is inheritable?
– How do I treat it?

Atypical Depression – not the features are what we visualize as someone who is withdrawn, but angry, annoyed, easily agitated, can be aggressive, possibly increased anxiety.
* Should be placed on antidepressants, but are often on anti-psychotics because of this behavior.
* Anti-psychotics should not be used with those who have dementia because of an increase risk of heart attack and stroke.  Often we think the anti-psychotic is effective because it is sedative, but it takes 3 weeks to actually control behavior.
* Antidepressants also take 4-6 weeks for max efficacy because needs to be ramped up to a therapeutic value.  Antidepressants may be effective for one person but not another so may need to cycle through several to find one that’s works.  Once you find one that works, antidepressants should never be removed, even while on hospice.
* If someone with dementia has other med issues with symptoms that causing anxiety, like the difficulty breathing that accompanies COPD, they should also be on an anti-anxiety medication.

Forms of dementia:
Early onset [diagnosed as early as 20’s, either familial (family groups in Germany & Bolivia) or sporadic (1-off gene mutation)] Downs syndrome
Regular onset (65-80)
Late onset (80’s-90s)
Lewy Body Dementia (LBD)
Vascular (multiple types)
Fronto-Temporal Dementias (FTDs) (multiple types)
Parkinson’s dementia
Alcohol dementia
Huntington’s dementia
Mixed Dementia (Example: Alzheimer’s + Vascular)

7-stages of Alzheimer’s Dementia:
#1 is health
#2 is Mild Cognitive Impairment (MCI) – periodic confusion or forgetfulness, but able to complete all ADLs
#3 is early stage and Dr. should be able to tell which type you have.
#4 is moderate decline – difficulty w/simple math, forget life history details, poor short term memory, inability to pay bills
#5 is moderately severe decline – begin to need help with many day-to-day activities, significant confusion, difficulty dressing
#6 is severe decline – need constant supervision, frequently require professional care
#7 is very severe decline – nearing death, inability to respond or communicate, need assistance with all ADLs

How does dementia cause death?  Brain cell death prevents neurological system and cognition from working properly.  As disease moves into more lobes of the brain, new symptoms (like paranoia in the frontal lobe), will appear.

In Alzheimer’s the first area of the brain damaged is hippocampus, which converts experiences into memories.  When the hippocampus is damaged, it cannot do this, resulting in amnesia.
Symptoms don’t appear until the brain has lost 1/3 of its volume. People can usually still drive and don’t look ill so odd or forgetful behavior may be taken as intentional.  They are not doing it on purpose.  Writing things down so they will remember, yelling at them, etc. will not change their forgetfulness.

From hippocampus, usually Alzheimer’s next affects the temporal lobe (hearing, facial recognition, language, social conversation). Damage to the left temporal lobe reduces the ability to express their difficulty in understanding your instructions, but they can still carry on a very social conversation and cuss.  It appears they are taking in details of conversation when they are really following a social script they learned during early development as a child.

Aphasia – loss of the ability to understand and express speech. Stage 5 understands 1 of every 10 words you say to them.

Frontal lobes – family, education, impulse control, emotional expression, memory, judgement, problem solving, language

Occipital lobes – the visual processing center for facial recognition, depth perception, visual acuity.

Damage to temporal, frontal, and occipital lobes causes Agnosia – inability to recognize people, objects, sounds, etc.  You can see this when they begin to confuse toothbrush and hairbrush, a cordless phone and the remote control, etc.

Everything we can do is built on our memories.  Your brain as a file cabinet.  Each thing we do saved in a separate file.  Example: Driving in general, in traffic, in snow, a clutch, an automatic, in heavy rain, on ice = 7 files on driving.

Your first file was Mom and you built from there in order of your maturation through each stage of life.
Alzheimer’s erases those memories in reverse order.
* When they don’t recognize you as their daughter, they have lost their memories of being the ages during which they raised you.
* When they start saying they want to go home they feel very young. It is an emotional memory so they don’t recognized the house where they grew up when you take them there.  Your response should be to treat them as if they are a small child on a sleepover who wants to go home in the middle of the night.  You reassure them, make them feel comfortable, try to fulfill that emotional memory by ensuring they have their favorite pajamas, sheets, blankets, pillow, smells, etc.

Apraxia shows up when the parietal lobe is affected.  Inability to have purposeful body movements.  They can’t tell they have urinated or defecated.  They can’t control their motor functions so they can’t walk.  Eventually won’t swallow well so they will aspirate and die of pneumonia.  They lose taste, body temperature fluctuates, touch is the last to go so give them something soothing to hold, gentle massage, etc.

Question and Answer

Q:  Caller’s mom believes she is bathing, but isn’t, and resists help bathing.
A:  Culture tells women it is unseemly to be nude around others so they are often more difficult to bathe than men.  Indoor plumbing, may be unfamiliar to her if she grew up without and can’t remember how to use modern facilities.  Try helping her with a sponge bath, like she bathed as a child, instead.  Showers also can be chilly air with too hot water for someone with dementia.  Don’t worry about bathing daily because they’re not doing heavy labor.  Try using a bathing poncho and distract them with chocolate, singing a simple song with you or some sort of hand-held manipulative.  Don’t even mention bathing.  Start with feet and move up.

Q:  Caller wants to inhibit compulsive behaviors.
A:  Answer is these repetitive behaviors, like rubbing the head, rocking, etc. are self-soothing.  Sometimes they are destructive, like picking at things, pulling out eyebrows, etc.  An anti-anxiety medication is the only thing that will stop this because you can only distract them from the behavior for a short time.

Q:  Caller’s husband claps frequently, which disturbs others in the living environment.  Caller says he doesn’t participate in activities offered.  He watches the group activity and claps.
A:  This is self-stimulating, so he’s bored.  Clappers are typically stage 6 and can’t do group activities, but an activity blanket, activity shirt, or activity pillow will give him something to fiddle with.  One-on-one activities will also stimulate him.  If he enjoys cats and/or dogs, he may enjoy a visiting animal or stuffed animal, especially if he had pets as a child because those old memories are the only memories he has left.
Don’t fall for buying a robotic animal.  The sound and movement may be too stimulating.  These work better with young people who have brain injury, rather than dementia.

Caller’s husband complains of headaches, also he can read but not retain or comprehend it.
First you learn the letters, then sound out the words, then how sentences go together, and finally comprehension.  Someone with Alzheimer’s has lost the more advanced reading skills, so they don’t comprehend, but can still read words.   Her husband may also have mixed dementia, like Alzheimer’s + Vascular, mini-strokes (especially if he’s taking blood pressure meds, anti-coagulants, etc.) or he may say he has a headache, but his foot actually hurts and he’s using the wrong word for where it hurts.

“Stress Symptoms, Signs, and Causes: Improving Your Ability to Handle Stress”

Here’s another good article from HelpGuide.org, a website focused on emotional and mental health.  Though this article isn’t specific to caregiving stress, the overall discussion of stress certainly applies to the caregiving situation.  Six strategies for managing stress are described:  exercise, social support, engage your senses, relaxation, a healthy diet, and sleep.

Here’s a link to the article:


Stress Symptoms, Signs, and Causes: Improving Your Ability to Handle Stress
By Jeanne Segal, Ph.D., Melinda Smith, M.A., Robert Segal, M.A., and Lawrence Robinson
Last updated: April 2017


What is a patient advocate and how can an advocate help?

I occasionally read the “Nurse Advocate,” Anne Llewellyn, who has a LinkedIn Pulse site.  In a recent post, she explains what a patient advocate is and how an advocate can help.  The author says: “Everyone needs an advocate when they are thrust into the complex word of health care.”  A physician made the following comment on the blog post:  “The system is difficult to navigate for those with healthcare experience, yet alone the layperson.  Healthcare itself is not a safe place.”

The author says:  “Keep in mind advocates do not provide hands-on care, but rather do research, meet with your health care team to understand the plan of care to ensure it meets your individual needs. Advocates work on your behalf to break down barriers that exist in our complex system and ensure you are safe and have the information and resources to navigate the system and make decisions to address your individual needs. They ensure you have a voice in your care and are at the center of the health care system.”

There are several kinds of advocates – Independent Patient Advocates, Hospital Advocates, Billing Advocates, and Housing Advocates.  Although the author says that there are many ways to find an advocate, the only method suggested in the article is a web search.

Here’s a link to the article:


Everyone needs an advocate when they are thrust into the complex world of health care
Published on May 16, 2017
by Anne Llewellyn, nurse advocate
LinkedIn Pulse

Short descriptions of four atypical parkinsonism disorders on MJFF website

Looks like this webpage on the four atypical parkinsonism disorders — CBD, LBD, MSA, and PSP — was recently created on the Michael J. Fox Foundation website.  (It wasn’t there in July 2016, when we became one of their partners.)  Here’s a link to the new webpage:


Below, I’ve copied the summaries of the four disorders from the short webpage.  In addition to these summaries, the webpage also discusses treatment for these diseases.


Excerpts from

Atypical Parkinsonism
Michael J. Fox Foundation Webpage

Corticobasal Degeneration (CBD)
Corticobasal degeneration (CBD) leads primarily to motor and cognitive (memory/thinking) symptoms. Motor symptoms mainly affect one arm and/or hand and include:
* slowness,
* stiffness,
* myoclonus (rapid muscle jerks), and
* dystonia (an abnormal, fixed posture).

The dystonic posture may cause the arm to be held close to the body and bent at the elbow and the wrist and fingers to be flexed toward the palm. Dystonia can cause pain and palm sores and interfere with regular daily activities (such as brushing teeth or preparing meals). Cognitive problems can affect speech, memory and/or behavior. Brain-processing difficulties can make performing complex motions, such as combing hair or turning a key in a lock, challenging or impossible. People with CBD may also experience “alien limb phenomenon,” which is involuntary activity of a limb and a feeling that the limb is foreign or has a will of its own. (An alien hand could take one’s eyeglasses off after the other hand has put them on, for example.)

Lewy Body Dementia (LBD)
Lewy body dementia (LBD), also known as dementia with Lewy bodies (DLB) is a form of dementia associated with PD, typically occurring early in the course of disease. LBD involves motor symptoms of Parkinson’s (usually stiffness and slowness) and significant impairment of thinking and/or memory abilities that interferes with daily activities. Additional symptoms may include:
* visual hallucinations (seeing things that aren’t there),
* unpredictable fluctuations in levels of alertness or attention, and
* mood, behavioral and/or personality changes.

REM sleep behavior disorder, in which a person acts out his or her dreams, and orthostatic hypotension (a decrease in blood pressure when changing positions that can cause dizziness or lightheadedness) are other common symptoms.

Multiple System Atrophy (MSA)
Multiple system atrophy (MSA) patients may experience:
* parkinsonism — usually slowness, stiffness and walking/balance difficulties (rather than tremor);
* cerebellar symptoms — incoordination, imbalance and/or slurred speech; and
* autonomic nervous system dysfunction — problems with the body’s automatic activities such as blood pressure regulation, bladder emptying and sexual functions.

Other features of MSA include abnormal postures (head and neck tilted forward, hand held in a grasping position, or foot and ankle turned inward); speech and swallowing problems; episodes of uncontrolled laughter or crying (pseudobulbar palsy); cognitive (memory/thinking) problems; and sleep disturbances, including REM sleep behavior disorder (acting out one’s dreams) or sleep apnea (breathing pauses during sleep).

Progressive Supranuclear Palsy (PSP)
Progressive supranuclear palsy (PSP) causes imbalance, gait difficulties and a tendency to fall backwards. It also restricts normal eye movements, which can lead to reading difficulties, falls when walking down stairs and visual disturbances (blurred or double vision, or light sensitivity). Involuntary eyelid closure (called blepharospasm); memory and behavior changes (such as decreased motivation and emotional fluctuations); and speech and swallowing problems also may occur.