Winding Down OR The Week Ending 01/31/2016

The good things in life speed by in the blink of an eye, while the pain and anguish seem to drone on for ages.  Such is life, though, I suppose.  

This week saw some changes - not necessarily for the good or bad, but nonetheless, they were present.  

Mom was thought to be over her cough with the crud, but HA!  It had only maneuvered itself into the center of her chest and lay in wait - it grew into an infection.  So, Leddy, alert and attentive, called Noel, the hospice nurse.  Noel came quickly and prescribed a ZPak for Mom - Azithromycin, and other good drugs for these things.  Mom began her regimen that evening.  

On Wednesday, I came in to find Mom up late, waiting for her shower, but able to eat a full breakfast.  By the time I arrived, Noel was waiting, and Mom was in and out of consciousness.  When I kissed her ‘hello’ she looked at me with confusion - not knowing who I was.  

Her current state, we agreed, was probably from the crud, but I also asked whether or not we could lessen the dosage of the Depakote in the morning as she seemed rather overmedicated.  Noel thought it a good idea to try (my idea was 3x a day, rather than 2x, with one dose higher than the rest, but she reduced it to 2x a day with no higher dosage).  She also explained that Mom should be perkier and more herself within a few more days.  If not, then we just needed to watch and wait for whatever comes next.

Mom wasn’t very chatty - she mumbled a great deal and her voice was weak - until Jean arrived for her visit.  “Jean!” Mom called out with a force I’d not heard in months!  Well, Mom certainly began engaging a little more now that her buddy was there.    Jean began painting Mom’s nails, and Mom seemed to acknowledge this act - she didn’t protest, that’s for sure.

We had a nice chat, and then Noel and I finished up after discussing other meds, etc., and we both left.  

The following is what occurred during Jean’s visit:

Jean tries to help Mom with her meal

Hi, Tony,

It was nice to see you at St. Anthony's today.  I'm glad you and Noelle, the hospice nurse, could confer and share information.

After you left I tried to engage Norma in any kind of conversation, but she was so sleepy and unresponsive that it did not happen. Several times I moved the beautiful blue blanket to keep her better covered.  Beth, the RN, who said she has been there for two months, stopped by to say Hello and tried to get Norma to answer her.

I wondered, from the way Norma was moving slightly if she had to go to the bathroom.  I guessed her answer was Yes, not sure.  I told Elsa.  Soon she moved Norma into her room.  Iofina went in there, and I stayed out of their way. When Norma came back she was wearing gray slacks with her purple and blue Paisley shirt.  (The other shirt had juice spilled on it.)   No stockings then, don't remember what color her toes were (sorry).

The ladies were hoping Jennifer, the Hospice CNA, would be there soon, help with showering Norma. My comments on today's mild weather went unanswered, maybe unheard.

Soup was presented at the table, and I was successful in getting Mom to take three small bites of beef cubes in the soup.  Soon came a beautiful, colorful complete dinner!  It was lasagne with lots of white cheese and hamburger.  Broccoli and slices of yellow cooked carrot, plus a piece of bread, made for a meal quite nutritious, I'm sure.  But that's only if the "customer" eats it.  I heated it up after a while, then slowly Norma took three small bites of the main course. But then her mouth was firmly shut as she either dozed or did an excellent imitation of nodding off, chin on her chest.

Iofina said Norma had eaten her full breakfast today; I did not ask when.  Maybe you know that.

Elizabeth, a new resident, sat next to me. She ate her full meal, and we introduced ourselves.  She said something I could not understand, so I said "Really?"  my noncommittal response to a remark I cannot hear. She seemed pleasant.  Later I saw her eating a sandwich.  Iofina said Elizabeth had asked for more to eat.

I told the ladies I was giving up for today.  And then in came Jennifer!  So I knew it would be shower time, if possible.  Maybe that would be a happy awakening for Norma.

Connie might have been more successful than I was in "alerting" Norma today.

I did check in most days this week, but Mom seemed more alert, but not much better.  So, my hopes were high when I dropped in today for our visit.

Mom had arisen rather late and was, according to reports, anxious to ready herself with no help.  This is good.  She did receive help, though, and was in the mobile recliner at the table when I arrived, having had some juice and coffee, but very little yogurt - she hadn’t eaten any breakfast.  

Mom actually smiled for me, but it was so fast there was no way I was going to catch it

I helped her with a few spoonfuls of yogurt, but she wanted no more, telling me she wasn’t hungry.  Barbara, another resident, was sitting at the table opposite of Mom.  Now, Barbara is a shopper, and you need to keep your eyes on your things.  When I put my coffee down on the table, Barbara reached for it and told me it was hers.  I offered it to her, but she began knocking out a rhythm on the table and wiping it down with her hands.  Mom tried to have a conversation with her, but they both mumble so it would have been quite fascinating if they’d actually engaged that way.

Soon, Mom kept nodding off and there seemed no reason to be there but to stroke her arm and try to keep her in conversation - but it was hopeless.  So, I left for a bit to run some errands for her, then returned and tried again.  It was a repeat, but this time, she was very much out of it.  

Her cough, they told me had lessened, and she was through with the ZPak.  However, there was still something there, but that remains to be seen.  

So, here we are.  If the antibiotics/drugs cannot stop the infection, then we are on a journey toward the finish, most likely.  If Mom isn’t able to rise up anymore from her dopiness and continues to refuse to eat, then the same is true.  

We are at a crossroads, of sorts, it seems, but only time will tell.  Who knows?!  She’s rallied before, so there may still be some fight left in the old gal yet!

Dementia and The Immune System

In a discussion this morning about Mom’s health, something triggered a thought in me about how later stage dementia may affect the immune system.  This was, in part, due to Mom’s battle with an upper respiratory infection brought on by a bout of the “Crud” that goes around every year.  

Doing some research and typing in various keywords in search engines began to frustrate, as nothing really seemed to be answering what I really wanted.  And then - something magical happened - I tried some new keywords and phrases and ‘Voila!’ I began to find some information that began to address what I wanted.  

Apparently, the connections between dementia - especially Alzheimer’s (Lewy Body is following behind) - and the immune system are being researched as we breathe.  Yes, it’s a new frontier!  

Interestingly, the Alzheimer’s Society has discovered two genes which are affected and are in a vital struggle in Alzheimer’s.  These would be the TREM-2 and the CSF1R which play a pivotal role.  Should you be interested in reading more about this, then please read: Understanding how genes related to the immune system …  It’s technical but rather interesting - however, for my purposes, it helps with some foundational information, but at this moment, it’s not what I wanted.  

There appeared, too, another article which takes into account that dementia may be similar if not akin to Autoimmune Disease.  This, too, is interesting, but it, too, explores causes of dementia, rather than susceptibility to disease for dementia patients.  This article can be found:

Dementia As An Autoimmune Disorder.  

To be honest, reading these articles did stimulate thoughts, but for your sake I really wanted to keep the field a bit narrower, rather than explore too much (I dare hope I’ve not done that already)!

At last, I discovered something that tickled my neurons; while it also assesses the role of the immune system in dementia causes, it also marks a beginning of an exploration into what happens to the immune system for those with dementia.  The researcher, a vet from the UK, is just beginning her adventure, so reading through this is a snap!  How the immune system responds to proteins that cause …   My understanding, at this point, may be a tad warped, but just attempting to understand the links between the immune system and the degeneration of the brain functions is where I am headed.

And, finally, I found this quick bit.  Yes, it’s a YouTube video, but it’s of a young scientist who is embarking on just the journey (I think - I’m hoping I’m not overly tired at this point) I was hoping someone would take.  

The truth is, as the brain degenerates from the dementia the response of the immune system diminishes, leaving the patient more prone to infections and diseases from which their recovery becomes less and less.

If you’ve more information or links - or just some ability to generate more on this topic, I’d be very grateful!

Discrimination of LBD Patients in Care Facilities...Did You Know?

It’s not something you might consider - something that seems so out of probability you never had it cross your mind - that a person living with Lewy Body Dementia might not be allowed to participate in living in a Memory Care facility - but it happens.  Seriously!  

I hadn’t even thought about it until our last support group when a woman came to speak about finding good care and housing for loved ones brought it up.  She stated there were places that would refuse admission to people suffering from LBD.  Wow!  And she also told us it happens more than we would think.

Knowing the differences between LBD and Alzheimer’s helps to create the understanding that the LBD patient requires a bit more care than that of the typical Alzheimer’s sufferer.  However, one would imagine that a memory care facility would be equipped to deal with the needs of all the residents.  

There are those, however, who have suffered discrimination.  For example, SERIOUS PROBLEM - discrimination when it comes to LB, illustrates what I’m referring to.  

Why would a regular facility keep your loved one from entering?  Well, rather than fighting them, you might be better off in calling and asking first.  What you’ll find is that some might charge more than others for caring for the patient, and others might simply state that you must agree to spend time every day with the patient.  Yet, others will readily accept the patient.  

Why the differences?  Because LBD patients have hallucinations, have a shorter attention span, and exhibit symptoms that differ from those of the Alzheimer’s patient.  Some facilities are worried that the LBD patient may disrupt or create havoc with their small communities.  

To be honest, finding information on this topic has been rather difficult, but knowing it does exist in every state, as well as around the world, is something that families need to be aware of.  Research Shows LBD Places High Toll on Families, is a link from the Lewy Body Dementia Association, which demonstrates the differences in care needs between AD and LBD patients; they are great.  

To be sure, one must do research and find a placement for their patient in a facility that is equipped and willing to care and tend to your loved one willingly.  We were pretty lucky with Mom - I am not sure they ever had such a patient, but they’ve learned through laughter and a great deal of compassion.  

If anyone has been refused services because of LBD, they need to begin researching options and facilities in their area to make a worthwhile decision - finding that treasure of a facility, rather than doting on the negativity of those who cannot/will not.  There is hope, there is a place.

In The Unknown - OR The Week Ending 01/24/2016

Lewy Body Dementia is known for being a roller coaster - insofar as there are no definitive stages/phases through which the patient passes.  While one week the family may begin grieving, they may find that the patient is back to her old self again.  So, that being said, it’s difficult to convey what’s going on with Mom. 

 

Mom at Christmas 1994

This week, Mom has been rather unwilling to get out of bed, and her eating habits have also been rather lethargic;  however, until yesterday, she was eating something of each meal.  Yesterday, Saturday, she ate 40% of her lunch and 10% of her dinner - nothing else.  She has been refusing assistance in the evenings, and many times during the day.  She is weaker than last week, and her voice today was fragile (compared to last week).  Difficulties with walking and holding on to utensils, glasses,  and other items have also arisen this week - much as it has in the past. 

She doesn’t seem to be in any pain but seems rather comfortable.  Her cough has vanished, as well.  Yet, the edema in her legs seems to have returned, so the staff is elevating her legs when possible.

On Thursday, Jean came for her visit and her account reads as follows:

Hi, Tony,

This time, I took pen and paper and vowed to take notes...and I did just that.

I was alone this time, so had to talk to myself on my travels to and from St. A's.

Signed in at 11:25 then found Norma seated in her chair at the head of the long row of tables.  Head down, she was nodding, and there was a good looking breakfast in front of her.

I woke her, then started to offer spoonfuls of a tasty-looking yogurt--something with berries in it. Gradually she ate all that, then I heated up her breakfast, told her it looked good and started to give bites.  Because I can't remember, I tallied up the bites she took of banana--5, egg--2, and French toast--4. She was content to let me feed her, and it was slow going.  I had offered to heat the coffee but did not push that, as it was more important to get some nutrition into her.  There was a glass of red juice, too--that was taken readily.

A few partial bites landed on Norma's maroon shirt (with gray pants), so  we both worked on getting rid of those.  The napkin on her bosom seemed to slip down each time it was put there.  Lianna told Norma she would help her put on a clean shirt later. 

I'd brought nail polish, hoping she would be agreeable to having that.  Gave her a choice of light pink or clear, showed her the two on my nails. No decision; is that something more difficult lately?

She was fine with resting her hand on the table, then on my hand, as I painted on the pink polish.  That took a few minutes to dry, then I did the other hand. It was easy, no comments from Norma, who was

nodding off as I did this. I admired my work; no comment from Herself.

The Oregonian was there, and Norma glanced at it but did not read it--I think, maybe because I was talking with her.   We looked at ads, pretty people in colorful clothes. I asked her if she needed an electric mixer (an ad we saw)and she said, "No, but my mother might."

When I was wiping off her messy shirt, she said, "You could go a little bit quicker."  Indeed, I could.

"Thank you," she said when that task was done, and a clean napkin set on her bosom.

"Is it cold today?" she asked. "About 45." "That's not too bad."

All, this time, five other ladies were there, hardly speaking but seeming content.

All too soon after breakfast came LUNCH! It did look good.  There was soup with little bits of veggies, chicken with dumplings, string beans.

Again, I counted bites, most of them courtesy of my help.  Chicken--11 bites, soup--5 spoonfuls, string beans--5 bites plus 4 "solo" bites. Dumpling--one bite, as I wanted to concentrate on the other solids.

There was pie for lunch, probably a sweet potato or yam pie, which brought "Oh, my goodness!" and "How nice!" when I pointed to the two little dabs of whipped cream next to the pie. But she ate only half of it.  I, on the other hand, ate all of mine, which appeared silently from smiling Iofina (that's "Yofina"). No coffee offered, nor did Noma ask.  Elsa brought her a pill, and told me to "Keep talking," obviously to distract her resident.  Later there was a tiny cup of a fluid.

Elsa told me you had brought pies for the caregivers, and she had a piece of a berry pie that was so good.  We agreed it was a nice thing for you to do.

Twice during my two-hour visit Norma coughed 4-5 times in succession, productive coughs, I think. I asked her where it hurt, and she pointed to her throat.  Got cough drops for her, but no interest there.

I don't remember what inspired, "Now that is a nice thought." See, even with notes, I don't catch it all.

I took two pictures with my little phone to send you, but the memory was full; should not have been, as

I'd erased a few pictures.  She was willing to pose with almost a smile, and I said: "There's your face" as I snapped the picture. "Such as it is," she answered smartly.

I asked if she usually has a nap after lunch, with "Sometimes" the answer.  Left her at the table, seeming content, and said a quick goodbye with a hug.

I definitely do not want to be a reporter when I grow up.

As you can tell, her appetite is not what it once was.  Perhaps it’s the medication, or it may be the progression of the syndrome of LBD.   Whatever it may be, she is growing weaker and less interested in much of anything. 

Today, she was still in bed when I arrived.  She asked what I had done so far and I told her - cleaning, dogs, and park, shopping, coming to see her.  I also mentioned I was going to her great-grandson’s birthday later and she asked if Dad was going.  I told her I wasn’t quite sure, but I knew he’d be there one way or the other.  She smiled and nodded back to sleep. 

Mom hiking Sol Duc and luxuriating in the beauty and warmth (ca 2000)

I tried to give her some juice, but she demanded to hold the glass herself and then, after drinking a bit, her hand began trembling and she dropped the cup so juice went all over her blouse and sheets.  I was cleaning it up when Rosa and another aide came in to roust her from bed. 

They pulled out her portable recliner (to help elevate her feet) and began making her fashion choices for the day.  They are so good natured! 

I kissed Mom goodbye, but as I left I began wondering if there was going to be another incline, or if this was the beginning of the final portion of the ride; best to treat it as the latter while hoping for the former, I suppose. 

What We Can Learn from Robin Williams' Autopsy

Okay.  Someone asked why I was just really beginning to use Robin Williams' death to discuss Lewy Body Dementia.  Well, it's pretty simple - I'm discovering more usable material that discusses and enhances the learning experience for others in the general public; hence, more are able to understand through the viable information.

Today, I offer you a video on Robin Williams' Autopsy - not the actual autopsy, but what they discovered and were able to enter in their report.  There are also some animations and a few living tableaus that help illustrate the findings and the material.

Just being able to help the general public understand and retain the information is reason enough!  Please, enjoy and share this with others. 

Autopsy 04/29/2015

Understanding Lewy Body Dementia Through Robin Williams' Death

Scrapping around and seeking more material for the blog, I happened upon some clips on one of the apps on my Kindle FireStick the other night.  Watching these gave me pause.  I then decided I should use them  because it's always good to have a refresher course - and below I give you The Science Show's presentation on LBD, in which we get some very good, (but hyperfast) information, and then the PBS Newshour using Mr. Williams as the springboard for conversation, as well.

Whether you watch one or both, you will find yourself presented with some good, solid information that isn't quite as dry as many of the other offerings I've posted in the past.

Please, enjoy these and feel free to use them for reference in the future.

The Science Show 11/13/2015

PBS Newshour  11/05/2015

In and Out and Coughing Fits - The Week Ending 01/17/2016

Mom taking a nap while chatting

This was a week similar to many others, but for some reason, it ended with a slight bite.  

It’s impossible to state that Mom was active; rather, she was still dopey from her medications in the morning, which led to eating less.  Today, I noted that her pants were rather loose, especially in the legs where she used to fill them out much more.  

She is “with it” at points, as she seemed to be when Connie and Jean paid their visit, earlier this week.  I know my uncle, her brother (and only surviving sibling) came to visit on Friday but haven’t heard back from his two-hour adventure with her.  

On Thursday evening, I received a call from hospice indicating they were going to have to begin treating Mom for a cough which she seemed to have developed.   None of the other residents were demonstrating signs of such an ailment, so that gave me pause to wonder how it could have been caught (I always wash my hands before seeing her, and am very cautious about spreading any of my germs, were I still to be a carrier of the cold I had in December).   They checked her for infection but saw none.  So, they were going to begin treating her with another form of morphine to help ease the problem and asked I bring cough drops.

On Friday, my uncle brought cough drops, and hospice had also brought some of their own, while I, unknowing of hospice bringing any, brought in a few bags per their request.  Mom is now well deluged with them.  

So, that being said, I’ll allow Connie and Jean to grant insight to their visit:

Dear Tony,

Connie signed us in a bit after 1 pm today. We had called South Cottage as we were leaving

Connie's house and they said Norma was sitting in the dining room, had just had lunch.

(Later we learned that she had had a "good lunch," but  no details.)

Norma was sitting in her favorite chair, as we were told, where she could see all others in the row of four tables.  She was definitely at the "head" of the long table.  She was wearing the pink and black striped shirt with her pretty pink, black and gray zip-up jacket.  Gray slacks were just right with that.

Jean said she was glad to see she was wearing her compression stockings; showed her own new ones. She was wearing her moccasin-style shoes, said they were comfortable.

Connie brought the Wall Street Journal, which was taken by another lady and never seen again by the three of us.  We spoke of many things, with Norma adding comments which only she understood. It was obvious at times she had a thought, but could not quite say it.  In fact, Connie heard her say, "I can't verbalize it."  We  did not remember the context.

Jean heated up Norma's cooled coffee and poured a cup for Connie.  It's more like a tea party that way.

We told of  recent family events.  Norma listens politely, and may venture her comments, so quietly that we don't always catch what she's saying, but it's always said with expression.

We spoke of colleges, where some of our loved ones had gone or are now attending.  Jim Manning's colleges were named, and Connie asked where Lawrence had gone. I don't remember what the two of them decided, but they were in agreement.  Connie said that Norma had told her Lawrence is sometimes asked by other lawyers with tough cases for his help. She added that he must be very good at his work.

"Well, it was very gracious of you to say that," said Norma. A modest mother, indeed.

Lianna set up Bingo at the other end of the long 4-table "table." Five ladies were playing, with Leah's daughter there to help her mother.  The Bingo held everyone's attention; the rattle of the little balls  did not help us hear Norma's words.  Jean asked Norma if she wanted to visit in her room, but she was fine there.  (The door to her room has been open last two times we visited, so Jean did not need her key.  Besides, she forgot to bring it.)

As always, the caregivers are kind to residents and to us; we even had cookies when they were passed around in paper cups.

Jean showed C.and N your "Awwwww!" on her cell phone (see below) after you saw the picture the phone took.

After an hour and a half, we told Norma it was time for us to leave, and that we would be back in a few days. The Bingo was still going on, so we asked if Norma wanted to play.  She said, "Yes, but not yet."

We got our coats on, kissed her goodbye, and she said, "Thank you for the entertainment." Talk about a gracious hostess! We said we would be back in a few days.

We have Connie to thank for hearing those very natural quotes from Norma.  Jean’ll have to pay closer attention.  She was right there, too.

Mom and Connie engaged in chat

Friday, Uncle Pete visited.  I’m sure it was a good one, although I’ve not yet heard.  They had a goodly two hour visit to make up for lost time (it’s been about 1.5 years since Mom and he had a chance to see each other - the last time being at Aunt Judy’s birthday party in Champoeg Park.  That is recorded in The Week  Ending 8/24/2014 Plus One Day).

Today, I went in to see the Mater and found her in her room dozing.  She’d eaten a few bites of yogurt, and her coffee didn’t seem as though it had been properly enjoyed.  I went out and  topped off her mug and put in some more creamer, then heated it up.  She had refused breakfast but had agreed to eat the yogurt and taking her meds.  

I asked her how her visit with Uncle Pete was and she responded by calling me a sadist.  She stated it was cruel for me to pretend she’d ever had such a visit.  So, I employed other tactics to see if I could jog her memory - but all failed.  Alas!

She was responding well, but having no recollection of anything before the previous 30 seconds, it was rather difficult to carry on much conversation.  So, I put on some music, gave her some cookies to eat (which she did, then shunned the rest of the yogurt), and she seemed to perk up.  It wasn’t a lively event, but it was good.  She was alert and on point about 40% of the time, and as I was leaving spoke of joining the others for lunch.  This is a good sign.

Then she coughed.

And coughed some more.

I had been told it was a dry cough, but this one sounded full and wet.

I asked her to point to where the cough seemed to be coming from and she pointed to her sternum.  Upper respiratory.  I reported this to Leddy and she was going to give her the medication for the cough in a few minutes, about the same time as Mom was to eat lunch.  

Now, knowing as little or as much as I do about her condition, this begins to lead me to investigate aspirant pneumonia, which is a common cause of death amongst dementia patients.  I’d rather be informed than sorry; so don’t assume that this is what’s going on, but just in case, I would like to have the facts in hand.

I am hoping that by this time next week, the cough has subsided and Mom is a little less groggy….but then, we can’t all see the future, can we?

Care Costs of Dementia - What Needs Be Done!?

As I've stated in earlier posts, the costs of caring for those with dementia is far more expensive than caring for those with other debilitating circumstances, such as cancer, or other illnesses which can be terminal.

In researching more on this topic, I came across the following from the PBS Newshour, which highlights a great deal of the problems.  This leads to questioning why MediCare isn't picking up some of the cost for the families.  While working with an Elder Law Attorney, you may find your family could use Medicare after a spend down, but only then, which means there are no further monies available to the patient to pay for their care.  Should this really be the case??

Watch the following video (a tad over 6 minutes) and decide for yourself.

Article Share: What Is Lewy Body Dementia? by Laura Dixon, Caring.com editor

The following is a sharing of the article that was posted on Caring.com.  I thought it something people would find informational and elucidating.  

What is Lewy Body Dementia?

What You Should Know About the Disease that Afflicted Robin Williams, Estelle Getty and Millions More

By Laura Dixon, Caring.com editor

Many Americans are hearing the term “Lewy Body Dementia” for the first time after the widow of late comedy legend Robin Williams revealed to ABC News that her husband was suffering from the disease at the time of his death. But for the nearly 1.4 million Americans with Lewy body dementia and their loved ones, the devastating toll the illness can take on the mind, body and spirit are all too familiar.

Despite the prevalence of the illness, it remains widely misunderstood, misdiagnosed or unknown by the general public and healthcare professionals. As a national discussion emerges around the disease following news of Williams’s diagnosis, advocates for Lewy body dementia (LBD) sufferers hope more awareness will lead to earlier diagnosis and more effective treatment.

Definition

Lewy body dementia is the second most common type of degenerative dementia after Alzheimer’s disease. LBD is a term used to describe any type of dementia where Lewy bodies – or abnormal deposits of a protein known as alpha-synuclein – are present in the brain. It is a progressive dementia for which there is no known cure.

Symptoms

For Ariadne Weaver, the first signs that something was amiss with her husband came years before he was diagnosed with LBD.

“He was always a little spacey, but he started getting even more spacey – he started making decisions that he couldn’t explain to me,” she recalls. During one incident, he was convinced someone had stolen his car and couldn’t manage to find it after over an hour of searching, even though it was parked just a block away.

Nearly ten years later, Weaver says one of the toughest symptoms to deal with has been what she calls the “rollercoaster effect.” At times her husband has been very lucid, at others, practically comatose.

“Through the whole disease process I’ve never known who he’s going to be when he wakes up – its just a hallmark of the disease,” she says.

LBD sufferers experience symptoms that are common both in Alzheimer’s and Parkinson’s disease. Consequently, many patients with LBD are initially misdiagnosed as having Parkinson’s or Alzheimer’s. Symptoms of LBD that are also found in Alzheimer’s sufferers include:

• Progressive memory loss
• Visual hallucinations
• Fluctuations in cognition
• Changes in attention, alertness and mental clarity
• Impaired problem-solving skills

LBD sufferers may experience symptoms that resemble Parkinson’s, such as:

• Slowness of movement
• A shuffling gait
• Tremor
• Drooling
• Stooped posture
• Frequent falls
• An expressionless face
• Autonomic nervous symptoms including blood pressure fluctuations, excessive sweating, urinary incontinence or sexual dysfunction

“A patient with LBD might present with different combinations [of symptoms], so [the disease] doesn’t walk and talk alike,” says Angela Taylor, Director of Programs at the Lewy Body Dementia Association.

There are also a number of early warning signs of LBD that are not common to Alzheimer’s or Parkinson’s. People with the illness often have one or more sleep disorders, according to the LBDA. One of the more common sleep disorders suffered by LBD patients is REM sleep disorder behavior, in which people physically act out their dreams in their sleep. This can cause injuries to the patient and the person they share a bed with, and can occur years or even decades before the onset of dementia, Taylor says.

The LBDA provides a symptoms checklist that caregivers or patients can fill out and bring with them to doctors appointments.

Diagnosis Issues

Because LBD often mimics other diseases and since every patient’s mixture of symptoms is different, it can be tough to diagnose. Another factor that can result in misdiagnosis is the general lack of awareness of the disease, Taylor noted.

“There hasn’t been enough awareness raised about this disease, both in the general public and in the health care profession, so that has an impact on diagnosis -- primary care physicians may realize it’s dementia but not realize what type,” she says.

Misdiagnosis can not only delay proper treatment but can also lead to the prescription of medications used to treat Alzheimer’s or Parkinson’s that can prompt a negative reaction in LBD patients. Traditional anti-psychotic drugs are often prescribed to Alzheimer’s patients, for example, to treat hallucinations and delusions. But for unknown reasons, the use of anti-psychotic drugs by LBD sufferers can actually worsen symptoms and in some cases, can even be life-threatening, according to the LBDA.

Taylor notes, however, that the use of newer anti-psychotic drugs to treat LBD is sometimes recommended if a patient’s hallucinations and delusions present a danger to the patient or to others.

Awareness is Crucial

Greater awareness of LBD among the general public and medical professionals is expected to result in more early diagnoses and boost a patient’s chances of getting the proper treatment. In Robin Williams’s case, the late actor began experiencing symptoms in 2013 but was only diagnosed with dementia a few months before he took his own life in Aug. 2014, his widow Susan Williams told ABC News. Williams also suffered from depression and anxiety, both of which are among the psychiatric symptoms commonly experienced by those with LBD, according to the University of California, San Francisco.

Another beloved American actor and “Golden Girl”, Estelle Getty first announced she had Parkinson's and osteoporosis, and was later diagnosed with Alzheimer's. However, doctors later discovered that she, too, had LBD.

Whenever someone presents with what appears to be an abnormal case of dementia or Parkinson’s, they should be referred to a specialist, Taylor says. While there is currently no diagnostic tool that can differentiate between Parkinson’s and LBD, looking at a wider array of both physical and cognitive symptoms can lead to correct diagnosis and the right treatment early on. “Knowledge is power -- the more we understand what is going on around us, the more we can prepare for it, put it in context and cope with it, but when we don’t know what’s going on, it can be devastating,” she says.

Getting Treatment

Once an accurate diagnosis has been made, getting the best treatment means care from medical professionals with different specialties in order to treat the range of cognitive and physical symptoms associated with LBD. The patient’s doctors can help them and their loved ones determine which course of treatment is best.

In addition to medications used to treat cognitive symptoms, movement symptoms, and hallucinations, other treatments can help LDB sufferers cope with the sleep disorders and depression or anxiety that manifest as a result of the disease.

Support and Resources

The LBDA strongly recommends that families of LBD sufferers get involved in the LBD community in some way and educate themselves about the disease as much as possible.

One way family caregivers of LBD sufferers can do this is by joining a support group where they can exchange information and tips, reduce feelings of isolation and take some much-needed time for themselves.

Robin Riddle, CEO of non-profit Brain Support Network and the leader of an LBD support group in San Mateo, Calif., says joining these types of groups can be critical for LBD caregivers. She says that’s especially the case with LBD because many of the symptoms are embarrassing; from urinary incontinence to REM sleep disorder behavior and paranoid delusions.

“Most of the symptoms [of LBD] are things you don’t want to discuss with adult children, your loved one’s friends or his or her siblings,” Riddle says. “Really the only place you can speak openly is at a caregiver support group meeting for those caring with Lewy Body Dementia specifically.”

Local support groups for LBD sufferers and their caregivers are listed on the LBDA website and Caring.com offers online support groups.

Long-term Care Options

As the disease progresses and symptoms worsen, some families opt for home health care or memory care.

“The types of things that increase the likelihood of [LBD patients] being admitted to long-term care are worsening Parkinsonism and also behavioral changes related to delusions or hallucinations,” Taylor says.

Whether or not a family decides to seek long-term care for their loved one suffering from LBD will also depend on the family’s existing care resources and on the patient’s personality, among other factors.

After years of caring for her husband at home and coaxing from her fellow support group members, Ariadne Weaver ultimately moved her husband into a skilled nursing home not far from their Santa Ynez Valley home. He remains there today.

Though she initially agonized over the decision, Weaver says it was the best thing she could do for her husband and for their marriage.

“I was one person working 24 hours a day, and [the nursing home] has nurses, and CNAs, and a dietitian, people cleaning and cooking, people showering him, an activities staff. I was trying to be all those people at once, and I just couldn’t be – now he’s taken care of 30 times better than I could have at home,” she says. “And when I go to see him, it’s like a date.”

Weaver says coping emotionally with her husband’s illness is still difficult and she worries about him all the time, but now she feels secure in the knowledge that he’s getting quality care.

For LBD sufferers who are in the last stages of the illness and their loved ones, hospice care can provide much-needed physical, emotional and spiritual support.

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Lewy body dementia has long been misunderstood and remains challenging to diagnose, but experts say increased understanding of the disease can help change this. When more people recognize the signs, symptoms and pitfalls of LBD, doctors are more likely to correctly diagnose sufferers and patients and their families are likelier to get the right treatment and support.