Progressing with LBD - and A Delicates Adventure, for Sure - The Week Ending 9/28/2014

Another week, another post.

This past week was interesting.  Why?  Well, with Mom's progression down LBD Lane, she couldn't recall on Wednesday if she'd played BINGO or not.

She did enjoy the visit from the RLC (Connie & Jean), and having a wonderful time just chatting away with Trivial Pursuits.   She's not saying much about her reading - just that others are reading what she believes are interesting books - but she's packing hers away and not doing anything with them.

Mom's reading all her cards and letters she receives, and she speaks of writing everyone, but that has come to naught - why?  no idea.  She won't consider dictation, either.

Soon after the Retired Ladies Club had exited the scene, Wednesday, Mom regaled me with a call.  This was quite a surprise, as she's not phoned me in many many months!  She wanted to know when I was coming to pick her up.  Needless to say, when we ended the call she was content - a little sad, but not waiting on me to come collect her.

This morning she was speaking with the aide as I walked in.  This time she was in a jolly good mood!  YeeeHaw!  They went inside her room to put on her compression stockings and I timed them.  Next, I prodded Mom to get ready for us to leave.  We had plenty of time then, but to get her to stand up and brush her teeth seemed as slow as following a Toyota in the fast lane.

Just as we were about to leave, Mom commented on how her brassieres had all been stolen.  Of course, I rolled my eyes.  I went to grab her purse in the 'purse drawer', when I found a collection of clothing with a bra!
       "Voila!" I cried.
      She grabbed it from me and sent me out.  Five minutes later I knocked and she bade me enter.  No!  She was just putting on her bra.  Egads!  My Eyes!  My Eyes! I went out quickly.

Finally, she was ready, and she'd changed all her clothing.  I checked it for any sign of dirt.  None.  Yay!  They were going to go through her clothes, again, and take out all her dirty laundry and wash it before we returned - Mom was wearing things and putting them right back on the rack or in the drawers.  Ugh!

We arrived at Mass a little tardy, but not bad.  Mom was shuffling more noticeably this morning.

Later, we arrived at Jean's house for pizza and lemon meringue pie, al fresco on the deck.   Quite a lovely lunch.

  After we were nourished, Jean's son, Terry, came by to visit.  This was a nice surprise (Mom says Terry is Jean's nephew - her brother's son - but that's nice he is so kind and sweet to his "Auntie"!).

He'd noticed that Mom seemed fine in very small groups, but once that group went over 4 or 5, she became quite anxious and tense.  I concurred.   I explained that with dementia this is normal, and this is why the best placements for the patients is in a smaller setting with fewer people.

So, we went hither and thither from Jean's doorstep to Lloyd Center Mall, and walked all the way to Macy's.  Mom needed more brassieres!

There was a sea of them!  I felt like a walrus trying to flop around in a kiddie pool.  Awkward!

We found two she liked and that fit, paid and went all the way down to the home furnishings.

Here we had to buy new sheets, pillowcases, and a new duvet cover, so they could wash hers at St. A's.  Her other set had ripped.    Mom wanted the exact same type as she had now, so despite the expense (truly not cheap!) we bought the set.

By now she was quite exhausted, but determined to get to the car.  We did.

She was now upset we didn't stop for ice cream, but we'd had pie at Jean's, and Mom was beginning to speak incoherently - many non-sequiturs, and jumping back in time with comments pertaining to things from earlier conversations, but nothing tying any of it together.  <sigh>

AS I left her she was a little wobbly, tired, and weary.  She'd had lots of exercise, good food, good conversation and stimulation, and we dealt with her "delicates" issue in a rather reasonable way.

Hurrah!

Lewy Body Dementia - What's the Latest Research/News?

I decided that it was time to simply post some articles for people who wanted to know more about the disease, and what the latest research was telling us.  So, below you'll find a couple of articles from the Lewy Body Dementia Assn, which I thought to be of interest - perhaps a little clinical, but they do give a much better idea of who is at risk at becoming a patient, and what the latest findings are.

I had no idea, either, there was an Alzheimer's Gene....

Remember, LBD is still an enigma, but they're discovering more about this form of dementia, which is the second leading cause of dementia after Alzheimer's!

ELEVATED BLOOD LIPIDS INCREASE RISK OF DEMENTIA IN PARKINSON’S

GBA is a genetic variation that is associated with sporadic Parkinson’s disease and severe cognitive impairment and is also associated with dementia with Lewy bodies. Approximately 4-7% of people with Parkinson’s carry this genetic variation. Research into GBA in Parkinson’s has helped researchers identify markers in the blood that may indicate which people with Parkinson’s are at risk for cognitive impairment and dementia even if they don’t have the GBA variant.

GBA changes how certain fats in the blood (lipids, ceramides and glucosylceramides) are metabolized. People with Parkinson’s another disease caused by and the GBA variation, Gaucher’s disease, have higher levels of these fats in their blood. Researchers recently discovered that Parkinson’s patients who not have the GBA variation also have higher levels of these fats and are more likely to have cognitive impairment and dementia. There are currently no tests available to identify which people with Parkinson’s will progress to dementia.

Michelle M. Mielke, PhD, and researchers from the US and Germany studied the blood of 26 cognitively normal people with Parkinson’s disease, 26 people with Parkinson’s and cognitive impairment or dementia, and 5 cognitively normal, healthy controls. The healthy controls had the lowest levels of these lipids, followed by those with Parkinson’s disease but no cognitive impairment. People with Parkinson’s disease and some degree of cognitive impairment or dementia had the highest levels of these fats. Cognitive impairment was not associated with other blood lipids like LDL or HDL cholesterol or triglycerides.

These results suggest the importance of the metabolism of certain blood fats in the underlying disease process of Parkinson’s disease.  While this study was small in size and will need to be replicated in larger studies to confirm the findings, blood tests could someday predict which people with Parkinson’s will progress to dementia.

In 2012, LBDA and the Alzheimer’s Drug Discovery Foundation awarded Dr. Mielke and Dr. Rodolfo Savica a grant to explore how blood lipid markers are associated with brain pathology of Lewy body dementias. This research will further clarify the potential of blood lipids to serve as a possible clinical biomarker for Lewy body dementias.

This study was first published online Sept. 18 in the journal PLoS One.

Citation: Mielke MM, Maetzler W, Haughey NJ, Bandaru VVR, Savica R, Deuschle C, Gasser T, Hauser AK, Gräber-Sultan S, Schleicher E, Berg D, Liepelt-Scarfone I. Plasma ceramide and glucosylceramide metabolism is altered in sporadic Parkinson’s disease and associated with cognitive impairment:  a pilot study.  PLoS ONE 2013;Sept 18;8(9):e73094.

- See more at: http://www.lbda.org/content/elevated-blood-lipids-increase-risk-dementia-parkinsons#sthash.ra2iGHXr.dpuf

"ALZHEIMER GENE" INCREASES RISK OF LEWY BODY DEMENTIAS

Lewy body disease is the underlying biological process in the brain associated with Lewy body dementia and Parkinson’s disease. While Lewy body disease can exist in a "pure" form with little or no co-existing Alzheimer’s disease, at least half of individuals with Lewy body disease also have significant amounts of Alzheimer’s pathology.

Until now, research has not revealed why people can possess the pathological hallmarks of one or both diseases. However, a new study has revealed that a genetic variant previously known to increase the risk of developing both early-onset and late-onset Alzheimer’s disease is also a risk factor for Lewy body dementias.

The study, led by Debby Tsuang, M.D., Professor of Psychiatry and Behavioral Sciences at the University of Washington and Veterans Affairs Puget Sound Health Care System (VAPSHCS), included 640 people with dementia and 269 healthy individuals and included autopsies on all participants. Clinical and neuropathological assessments resulted in the following dementia categorizations:

Category	No. of People
Parkinson’s Disease Dementia (PDD)	81
Pure Dementia with Lewy Bodies (pDLB)	91
Co-existing Alzheimer’s Disease and Lewy Body Disease (LBD-AD)	224
Alzheimer’s Disease (AD)	244
Healthy Controls	269

After adjusting for age and sex, and using the healthy controls as a reference group, the APOE variant was strongly associated with all four forms of dementia:

• 10-fold increase in the risk of pure Alzheimer’s
• 13-fold increase in the risk of Alzheimer’s with Lewy bodies
• 6-fold increase in the risk of pure Lewy body dementia
• 3-fold increase in the risk of Parkinson’s dementia

Senior author Cyrus P. Zabetian, M.D., Associate Professor of Neurology at the University of Washington and VAPSHCS stated, “APOE ɛ4 is the first genetic risk factor we know of that is shared among AD, pure DLB, and PDD. That indicates that these three diseases might also share some of the same root causes. If this proves to be true, it gives us hope that future therapies aimed at one of these diseases could be effective in treating the others.”

While the APOE variant is a well-established risk factor for Alzheimer’s disease, analysis showed an association between pDLB and PDD which was unexpected. In humans this variant is thought to accelerate the accumulation of amyloid protein. Toxic buildup of amyloid ultimately leads to the development of Alzheimer’s "plaques" and neurodegeneration. In this study, however, the absence of Alzheimer’s pathology in individuals with Lewy body disease indicates the possibility that this genetic variant may influence neurodegeneration through other pathways.

Another implication of the study is that APOE might play a role in determining whether someone with Lewy body disease is diagnosed with DLB or PDD. DLB is diagnosed when dementia occurs before or concurrently with parkinsonism, whereas in PDD, parkinsonism precedes dementia by at least one year. Findings from the study suggest that individuals with Lewy body disease who have the APOE variant are more likely to experience dementia first and thus to be diagnosed with DLB rather than PDD.

Members of LBDA’s Scientific Advisory Council who collaborated on this study include Debby Tsuang, M.D., James B. Leverenz, M.D., Oscar Lopez, M.D., Daniel Weintraub, M.D., Doug Galasko, M.D., and Cyrus P. Zabetian, M.D. The study was first published online on November 19, 2012 in Archives of Neurology and was funded by grants from the Department of Veteran’s Affairs and the National Institutes of Health.

- See more at: http://www.lbda.org/content/alzheimer-gene-increases-risk-of-lewy-body-dementias#sthash.RdNz2EDu.dpuf

Camping Travels with Mom! And, The Week Ending 9/21/2014

Mom was never the type to just stay in one spot for long.  Growing up, I remember how we would head out for vacations, camping, the beach, or something that would be purposeful and relaxing.

I remember the camping trips to Los Angeles via San Francisco en route to Disneyland, San Diego, and other places.  these were very different from Portland, OR; and in the '60's, life was much less complicated.  All we needed was the car, a tent, suitcases, food, sleeping bags and gas. It was easier to do these things (unless you broke down in the middle of nowhere).

We camped our way through California, Washington, Montana, Wyoming, Missouri, Illinois, Wisconsin, MInnesota,  and South Dakota.  We always had a destination.  Yellowstone, Glacier, Chicago, Sioux Falls, to name a few.  We were even known to camp on the Oregon Coast (many of those campsites, though, have been developed and are now hotels, shopping malls, or what have you.  This is sad)!

We also had Canada.  We camped our way through Vancouver Island, British Columbia, Alberta, Manitoba, and Saskatchewan.  Those were very fond memories.

You see, Mom's folks, especially her mother, liked hiking and the outdoors.  My father had never had the experience of camping while growing up, so this was all quite novel to him.  His mother used to tell us that her idea of camping was a cheap hotel.

These were days we treasured - of course, there were the downfalls of family journeys, but looking back at them these were much better than staying at a hotel, or with other people.  We were able to fish, swim, explore, and learn how to hunt for wood, while meeting new people (who, of course, we would never see or hear from again).

If I had pictures, rather than slides, I'd post some.  But at this point in time, there are none.

Coming up, Mom's adventures abroad.....with snaps, I promise.

The Week in Review:

This week was rather slow for Mom.

She had her massage.

She entertained her buddies, Connie and Jean.  She seemed pretty with it when they came to play Trivial Pursuits.

There was BINGO, but she said she didn't play....I'm not sure what happened with that.

And, she had a beauty appointment.

Last, but not least, she had dinner at my brother's house!

She was enjoying the sun and my brother's company when I arrived.  She was sipping on lemonade, and they were engaged in a nice conversation.  She really did seem as though she was present.

I decided to go for a swim and when I appeared in my trunks, Mom told me to cover my navel.  Hmmmm.  She wasn't amused when I made my navel talk.   She then stated I needed to pull my trunks up over my navel to keep it from being seen, as it was inappropriate.  This was news.

Later, she kept shifting her responses to topics raised earlier but not in the present.  My brother did a great job of trying to keep up with her.  I've had tons of practise, so this wasn't tough for me.  Sometimes she actually began discussing things that had no bearing on the conversation at all...

We had a great dinner.  She was tired and we left so I could take her home.  On the way, we talked about the delicious spit-roasted lamb, tabouleh, and tzatziki sauce we'd had.  Mom stated that even Dad liked it a great deal.  I queried her about Dad's presence.  Apparently he had been there all evening, but had left to take care of many important matters.

There were other statements and snippets of our conversation that betrayed her delusions, but we carried on as though it was all well and good.

I did note, though, that her sensitivity to heat showed.  We had to turn the A/C in the car down to the lowest, and then she was fine.  At her residence, we turned her A/C down to 68 as it was 74 and she was very hot.

I do need to figure out how to test her sense of smell - that's another symptom (if she's lost that sense).  She hasn't said anything about the car smelling like dog, nor does she sniff flowers as she once did before.

But that's another post...

Capgras Syndrome - A Symptom We Hope to Not Encounter Again!

We've already spoken of the different symptoms of Lewy Body Dementia (LBD), confusion, REM Sleep Disorder, Confusion, Hallucinations, etc.  But one that I find fascinating, and nearly thought Mom was beginning to experience was Capgras Syndrome - or the delusion that someone  (usually a person who is very close and endeared to the patient) is an imposter, posing as someone else.  For instance, if I were to sit down next to Mom, she would ask me where I was, as I was not who I was - I was an imposter!   I'm really hoping this doesn't happen, but if it does, then I pray I'm able to handle it with aplomb.

According to the National Institutes on Aging, Capgras Syndrome is:
Capgras syndrome is characterized by the recurrent, transient belief that a person has been replaced by an identical imposter.   (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3713629/.  09/15/2014.)

This is identified in approximately 17-20% of Dementia Patients.  It is not only seen in LBD patients, but Alzheimer's as well.  However, it is seen as a symptom of LBD, and due to Mom's anxiety, and her propensity for hallucinations, especially of late, she falls into the category of those who may develop the syndrome.   

According to the literature found on PsychCentral, Mom actually did have an occurrence.  This was when she called me in a panic, to tell how she was being held hostage in a house that was not hers!  She wanted to sneak out to her car and drive around to find her own home, but I convinced her to find a bed and sleep it off - she'd have better luck in the morning (it was dark outside, and Lord knows what could have happened had she been in this state and driving!).  She obliged.  

Another time was when she was convinced she had been moved, overnight, from Port Angeles to Cedar Hills in Portland.  She told me the house was similar, and she still had the view of the Straits of Juan de Fuca, and the movers had done such a nice job it was very nearly as it was at her "old house." This actually went on a few days, until her friend called her and then went over convincing her she was actually at home in Port Angeles (Whew!)  So, the next day she phoned and told me they had moved her back overnight.  This incident provided us with a little dilemma - she'd call and want us to come over for coffee or dinner. We (my brother and I) would have to decline, which disappointed her and made her a little bitter.  But what else could we do?  Port Angeles is about 4 hours away!

Mom did present this delusion at other times as when on Christmas morning she thought we were eating at my house, but then changed to their old Portland home, and finally, exasperated, thought I was playing tricks on her when I told her we were really in her own home, there in PA.  There were mild episodes that, at one point in time, seemed innocent, but I had no real idea what was truly occurring.  

     Here's an anctidote from PsychCentral:

At 3 a.m., wearing pajamas and socks, an 89-year-old man with Lewy Body Dementia was found by a security guard four floors below his apartment. His walker was later found abandoned on the second floor. Agitated and confused, he insisted repeatedly that he was looking for his “other” apartment. “I know we have two, exactly alike, one that we sleep in at night,” he said. “But I can’t find the other one.”

        and another

A 65-year-old woman diagnosed with early-onset Alzheimer’s Disease had what had become a typical spat with her spouse of 40 years. He argued, furious and insulted, “I’m your husband! Don’t you know me?!” “You look exactly like him,” she said quietly, “but I know that you’re not him.” Nothing could convince her otherwise, though the man told her many things only her husband would know. “You are one of the two imposters that come around here, not my husband,” she insisted.

This gives an idea of what to expect.  Although Mom is on medication, I'm hoping the doctor might be able to re-evaluate her dosages to bypass any further incidents - but my hopes may be in vain.  

Should this syndrome present itself in the future (near or far), i'll feel a little more prepared...

The Week Ending 9/14/2014

What a bumpy ride this week was!

Mom reacts to silliness

Tuesday, I went to pick Mother up for the funeral.  She wasn't dressed poorly, but not how I would want my mother to look at a funeral (very casual clothes).  But, considering the circumstances, there was very little time for figuring a change of clothes for her.  So, off we went.

The funeral was right down the street from Mom's residence, which made it all the easier.  As we walked in, she was reunited with two classmates from St. Mary's Academy.  She knew who they were, but didn't have a great deal to say to them, except that she remembered them.

During the rite, she inquired where Dad had gone.  I probed for more information and was informed that he had come with us and then just a moment before had just left.  I told her he had a couple of errands to run, but would try to be back in good time.  She bought it.  Whew!

After the funeral, which was nice and small, we went to the reception where we sat with her classmates and the departed's sister (who had delivered the eulogy).

Mom kept asking them the same questions about where they lived and when they graduated.  They handled it wonderfully.  They asked where Mom lived, and I told them at St. Anthony's.  Then they seemed to understand.

This was very good for Mom.  She had some good mental stimulation and it was outside the box for her - going down memory lane with people she'd not seen almost 67 years ago.  Wow!

When I returned her, she was full from the cake and punch, so she wanted to nap.

I then checked in with the staff.  They informed me she was under the belief I was sleeping in her bed with her every night, but getting up early to return at some point - she was waiting in her room every morning for my entry; I told the staff to tell her to go ahead and do whatever until I returned.

The staff also informed me that she had really declined in the previous two weeks.  Her hallucinations were more pronounced and she was not sleeping as well.

Thursday, the RLC came to visit armed with Trivial Pursuits.  The reports were positive.  Everyone had strong suits, and it provided a great deal of fodder for chatting.  It was a great change from the weekly Scrabble game.

Today, Sunday, I went in early to take Mom to Mass.  She was in a mood.  One of the staff, who she normally likes and enjoys was receiving Mom's wrath!  Mom was insulting and muttering evil under her breath.  What I wasn't aware of was this happened daily for the past week and a half!  My fear was Mom was beginning to suffer from capgras, or the delusion that someone is not really who they are (when they truly are!).  But, I was wrong.  Phew!

As I put Mom's stockings on her feet, she began cursing at me and called me a very disgusting name.  I looked up and told her that if she ever spoke to me like that again I would leave immediately.  This helped close her yap.   On the lighter side, her feet have begun to shrink in girth - her shoes are beginning to fit much better.

Finally, we were able to leave.  On the way to Mass, she told me to never threaten her again.  I stated that what she said was absolutely inappropriate and for her to remember that if she insulted me then it boomeranged back to her, as I was supposedly her genetic product.  Again, she went silent.  And then the day began to brighten.

Walking to and from Mass and the car, I noted that her shuffling is much greater.  Her balance was improved, but she is truly shuffling.

We went to Jean's for a lovely lasagne lunch and a wonderful visit.  After lunch and pineapple sherbet, we left.  Mom told me that Jean's family had had that piece of property for generations, and developed it.  She told me how wise Jean's grandfather had been to set that piece of property aside for his children and grandchildren.  I thought, 'What a wonderful delusion that I must share with Jean!' as this was far from true, but in Mom's reality it is.

I dropped her off and she went down for a nap.  She was truly exhausted.  So, after I placed the orchid back in the window, and the beautiful dahlias Jean had given her next to it, I parted.

Wondering what adventures this next week will bring!   

A MOOC About Dementia That Sounds Too Good to Pass Up!

I realize this is a day earlier than usual, but I need to strike while the iron is hot, and I have the time to put this out there.

When I first learned about LBD, my understanding of Dementia was limited.  AS my grandmother had been diagnosed with Alzheimer's, this shaped my view.  I had no idea the field had opened so much more, bringing into the conversation Alzheimer's, Parkinson's Dementia, SunDowning, Vascular Dementia, Huntington's, and Lewy Body Dementia to name several.  This seems rather overwhelming, especially, with my understanding, that forms of dementia aren't necessarily pure, and they can mix.  Arrrrg!

I was feeling more sure-footed when my cousin phoned me to tell me her mom had been diagnosed with LBD, as well.  She was spouting off what she'd learned which was what I had already learned and come to the door of understanding.  I pointed her to the LBD Association website, which offers a great deal of information to those who want to know more.

So, I went to the National Institutes of Health and the National Institute on Aging.  Here I found even more information.

However, the LBD site didn't answer all my questions.   So, I began digging a little deeper to see what else I could find.    I also began the Lewy Body Dementia Support/Blog site on Google+, in hopes to catch something from someone dealing with something similar.  Here I found information coming from Home Care and Elder Care sites, The Alzheimer Reading Room, The Mayo Clinic, among others.  These have proven interesting, and have provided fodder for further investigation as they've opened new questions and possibilities.  For this I'm terribly grateful.

Just yesterday, I came upon an offer for a MOOC (Massive Open Online Course, and the link will take you to a site that lists many of the courses that are opening in the next month or so), through the University of Tasmania which looks too interesting to pass up!  The topic is Understanding Dementia.  The enrollment is open, now, for the 9 week course.  This is offered to anyone interested, as long as you're willing to do the coursework (about 3 hours per week).

IF you're interested, I've provided the link to the course in the title.  The UTas link simply tells you about the Univeristy of Tasmania.

The course will focus on 3 (three) elements:  The Brain, The Diseases, and The Person.

Of course, this is my first MOOC, even though I've given thought to other classes, but on other topics that sounded like fun dabbling.

So, if you're interested in joining me, and countless others from around the globe on an educational journey about Dementia, sign up now!  

A Blissfully Peaceful Week. The Week Ending 9/7/2014

This evening (Sunday) I met with Mom at my brother's house for dinner.  I hadn't seen her in a week, so I was wondering what new elements had sprung for her.

Mom was having a ball tonight!

She was pretty much on top of things this evening!

I gave her a letter from her friend, Sharon, which was under some piles of other items I needed to sort out at home (housekeeping is becoming a nemesis for me), and she was quite glad to have received it.  She read it aloud, sharing it with us all.

I told her about her friend, Mary's, death.  She was a little saddened by it.  She stated she wanted to attend the funeral, so I told her I would see what could be done.  I also told her I'd been in contact with Nadya and her friend Nancy.  I offered my cellphone for her to phone them, but she rejected the idea, as she wanted to do it on her time and far away from anyone else (she had the entire backyard and the rest of the house to do it, so this made no sense).

She had played Scrabble with Jean and Connie on Wednesday, but stated she needed to check with them to make sure it really happened.

She then spoke of her brothers as though Larry, the one who died in January, was still alive.  We discussed family and the lot.  She loved telling both my brother, Lawrence, and me, that we were truly little ABC's (Arguments for Birth Control), and that they should have adopted me out.  This is her sense of humor.

This evening we had a delightful dinner prepared by my sister-in-law, Kathleen, and my brother.  A relish of fresh garden vegetables and grilled steak.  Mom followed this with Black Cherry and Vanilla ice cream which she enjoyed, greatly.

She talked of how she needed to see her friends.  She asked if our dad's mother was still alive, and we talked over much, including my brother, Chris, who she was assuming was joining us, and seemed dismayed when told he would not.

Mom, two years prior, at Nadya's House.

When I took her home she was in a very good mood.  She pointed out all the buildings and the sunset.  She was awestruck by the full moon.

When we arrived at St. A's, she remarked how very tired she was and that she really needed to get to sleep.

I put her in her room, with some little oranges I bought for her, earlier, and the letter and a magazine, and she sat in her chair.  She kissed me goodnight, and wanted to know what time we would have breakfast.  I told her 730, and she countered with 8 am.  I told her I would see what I could do.

A very tired, but happy mother.  Her presentation this evening was wonderful!

The Stages of LBD - How Far Have We Come?

In all my readings there is one theme that keeps cropping up

Lewy Body Dementia is a roller coaster - and everyone's process is different.  There is no real way to delineate the stages as there really aren't any.  One day things seem lost, and the next all is back to how it was.  No one really knows what to expect next.

This is a bit disconcerting.   One would prefer having something more definitive to be able to prepare for anything upcoming in the process.  I like to think of myself as one of those.

We have the symptoms.  We have the knowledge of forms of progression.  But as it is a peculiar disease that affects the patients differently, it's a tough nut to pin down as far as steps.

So, I'm going to attempt to pin down the progression for Mom as it has come along.

1.  Confusion and the Inability to perform Daily Tasks.
     Mom was forgetting how to operate her television and the cable.  So many times she'd phone and tell me I needed to phone the cable company to fix it.  She'd forgotten how to switch between the video mode and the broadcast (cable) mode.
     Mom forgot how to email.  This was very odd as she was one who would forward copious emails from others to everyone else, daily.  She would correspond with most people this way, as well.  Then, she forgot.
       She forgot how to get on the internet, even though it had been so easy for her in the past.  I even wrote instructions for her - which she threw away (she stated she didn't realize she was doing this).
      She would turn the ringer off on her landline and then believed I needed to drive up and take her phone shopping.  After fixing it over the phone (which wasn't a quick call - believe me) she went and did it again, only to phone again to learn how to fix it (this occurred many times).
     She didn't understand how to turn her cellphone on.  She'd phone me and tell me it was broken (yes, she'd call me on the broken landline).  I'd have her push the button, and voila!  This was a common occurrence.
     She would forget paying bills, or would simply not pay them.  Her record keeping went out the window!  She was always so good about this.  I recall her telling me something was wrong as all her bills were all over the table - her friend confirmed this, and helped her out.
     She'd put used dishes back in the cupboard - maybe rinsing them and maybe not - a real crap shoot if you were visiting!
     She'd forget to clean.  One Christmas, instead of exchanging gifts, she cleaned for 3 hours.  Then was unable to wrap anything.
    These are just some of the progressions of confusion.  I won't talk about her driving....'nuff said.

2.  Hallucinations - Mom's perceptions were becoming rather questionable.  She would talk about incidents that never happened, and told many people about them, which painted other people in a terrible light - they couldn't have been further from the truth; and yet, she demanded they did take  place.
   She called at one point after being kidnapped and taken to Alaska - and then she escaped.  Next day she was being held hostage in a house that wasn't hers (it was hers).  Another time she believed her mother was walking with her and wandered off.
These are a taste.

3.  Sundowning -  In the evenings, Mom would begin asking about her mother and where she'd gone.  She'd also ask about Dad.  She was under the belief they'd just been present.

4.  Falling & Movement Problems - I recall Mom slipping on some ice on her driveway and having a very swollen and bruised hip, which caused her great pain for a period of time.  I bought her some yaktraks, which she never used (she had others but never could find them - they were in the front closet).
    Another time, she went walking and less than a block later was stricken with chest pains and the inability to breathe.  This subsided within hours, but it meant I took her to the ER to find out the cause - they couldn't find one (the doctor told me she was demonstrating normal dementia and cognitive decline for a person her age...arrrrrg!0
     Her stamina and ability to do things with others began to decline.  Her energy level was growing less.  We also noted that her appetite for all things ice cream grew!  Hmmmm.
    She began to feel pains in her shoulders and sides.
     She began to shuffle -  not completely, but enough for the brothers to all take note.
    She has begun to do less and less to help herself and others in, say, putting on her compression stockings - it's almost like putting them on a doll with slight resistance and a very loud "Owee!' button.

5.  Memory Loss - What seemed to be one of her strong suits insofar as recalling incidents pertaining to herself, has vanished.  She doesn't remember doctors' visits, her cataract surgeries (she vaguely remembers the doctors, but for the most part they are lost in the fog), the dentist, etc.  What is not on her plate day-to-day doesn't stick.  This is growing worse on a weekly basis.

6.  Apathy and Loss of Emotion (especially facial expressions).  Mom has always had a face with character.  But gradually this seems to be losing its grip, as well.  Of course, when out with others and faced with wit she catches, she does smile, laugh, and even grimace at times, depending on the mood and time.  However, for the most part she has grown quieter in her eyes and expressions.

7.  Paranoia - Mom was furious the other day when we returned to her room and she discovered they'd laundered, folded, and hung her clothes (I had given them orders to search high and low for anything with any dirt on it, as she was oblivious to having any degree of filth on her clothing).  She keeps stating she's being robbed and the thievery is rampant (this applies to the memory part, as well).  All her things are present - she just hides them in somewhat interesting places, to keep anyone from taking them - including herself.

Mother is becoming  a shell of what she once was.  She's still a somewhat interesting conversationalist, as you aren't really sure what she's going to tell you - about family history, places and events.  It's difficult to discuss anything truly relevant, as she's fading more into a different reality which can be fascinating (for instance her stories surrounding Shirley Temple movies,  and her memories spurred by the viewing of one).
    What to expect at this point is more decline both physical and mental.  Frustrating?  Yes.  But going along with her reality helps.  All the research demonstrates that nothing will 'snap' her back.  Music or some sensorial event may trigger memories, but will not bring her back; when people try to explain the faultiness of her memories or reality, it creates frustration and resentment on her part - and within minutes it is again lost.  A battle that need not be fought.
   It's quite a somber dilemma, but a vital learning experience for those trying to understand and work with her.