Wednesday, April 27, 2016

ISP Review 2016

Lyn's team got together last week to review her individualized service plan (ISP) for the 2016-2017 year.  Her year starts in August and there are changes to her budget.

The Community Access program has been added to the budget.  There is an allotment for her to start using the Community Access before August and Mom and Lyn will be meeting with the service coordinator tomorrow morning.  They will determine how many times between now and the start of the budget year Lyn will be able to use the Community Access.  As a reminder, Community Access provides one-on-one interaction between a staff member and Lyn in the community.  Perhaps they will go to the park or an art venue.  They may go bowling or another activity which Lyn finds easy.

The Behavior Therapy is being removed from Lyn's ISP.  She does not have a behavior problem.  She has Alzheimer's.  Lyn may see her behavior therapist between now and August.  However, we're not holding our breath because the therapist has seen Lyn only once in the last 5 months.  The offered explanation for the absence was a broken thumb.

The team has also agreed that when Lyn is out and about, she should be kept off the highway.  She now finds it overly stimulating and anxiety inducing.  She does better on surface streets.  When I visit next month, we may even have to take surface streets to get to Santa Fe if we decide to go there.  It's totally doable if we go North along the old roads and not the more modern I-25 route.  It may take longer to get Lyn where she needs to go, but it is worth it if it helps keep her calmer.

Mom reports that this ISP meeting was the longest yet.  Lyn's team is bigger now than in previous years.  Additionally, when Lyn interjected into the conversation, the team would stop and listen to her, acknowledging her input even though it didn't pertain to the topic at hand.  Lyn's not able to follow the conversation well any longer and her participation means the meeting is not going to be as efficient as it once was.  While the meeting could be scheduled while she's at day hab, it is important for Lyn to feel she has a voice in her care and that she's listened to and respected.

Tuesday, April 26, 2016

MRI 2016

Lyn's doctor had asked that a new MRI be done.  The results are in and they're nothing shocking or unusual.

Lyn's brain is still looking pretty normal.  There's no significant loss of volume in her brain yet.  In five years, there could be substantial loss of volume and ultimately as much as 100 grams lost.  There is also no acute or sub-acute evidence of infarct.  In other words, she has no evidence of dead tissue as a result of loss of blood supply.  The ventricles are still normal in size.  As the volume of her brain decreases, they will increase in size.  There is no sign of aneurysm nor any abnormal structures in her brain.

So, what does this tell us?  Nothing new or different.  It just provides us with another comparative data point.

Monday, April 25, 2016

While We Were Away

While we were away, quite a bit has happened.  Nothing bad.

Lyn's MRI results came back.  I'll share them tomorrow.

Lyn's annual ISP review happened.  We'll talk about that later in the week.

Lyn saw her dentist for her regular cleaning and did very well.  She bowled and had a good week.

We talked on Skype a couple of times.  One of our conversations happened while I was sitting in the airport waiting for my flight to return to Virginia.  I had put in earbuds so that I could clearly hear Mom and Lyn without the volume of the phone being a nuisance to other travelers around me.

Lyn asked if my husband was nearby and I turned the phone so she could see him sitting next to me.  Lyn chirped a "Hello!"  My husband knew what was happening even though he couldn't hear her and so he smiled and waved.  Lyn started talking to him, asking how he was.  I responded that he was fine but he couldn't hear because I had all the sound in my ears.  She accepted my explanation that I wanted to be polite to people around me.

We had a good conversation and I was able to make my plane.  Upon landing and accessing my phone again, I found an email from Mom.  They had gone to Mass after our conversation and throughout Mass, Lyn kept asking "Why couldn't he hear us?  Why did she do that?"  She's not happy with me and seems to think that I excluded him maliciously.

Thursday, April 14, 2016

Conference Time

It is time for me to head off to my annual corporate conference.  I get to head out early for a pre-conference conference.  While I'm away, there will be no blog posts.  There's too much going on during conference days for me to have much brain power left for blogging.

If you know me in real life and are attending my corporate conference, please do say hello.  If you're reading along, just know that I'll be back to blogging on Monday, April 25.

Until then, stay safe and be well.

Tuesday, April 12, 2016

Summer Plans

We're putting in place our summer plans.  It is going to be a little different this year.  Instead of waiting for the kids to finish school for the summer, I'll be taking a week in May to head to visit Mom and Lyn.

We'll go out to lunch.  We'll go bowling.  Lyn will win.  She's still bowling well over 100 most games and continues to get strikes frequently.  We'll do a little shopping.  We may even go for a picnic.

We won't worry about scheduling actives which the kids enjoy but which Lyn finds difficult.  I won't torture her with a museum visit.  I think I've been to the majority of museums in town already.  If Lyn wants to go to Santa Fe for lunch and a stroll at the mall, we can do that too.

Lyn's confused about the timing of the trip and Mom's marked the calendar for her.  She's wondering how she'll know what I'm doing each day until my arrival.  (Working and being a mom.  Sometimes, it is hard to tell the two apart.)

As much as Mom loves my family and will miss seeing them this Summer, she's made the request that it just be a girls week.  When I think back to when it was just the three of us last for any length of time more than a day or so, I realize it has probably been about 30 years.  I know I wasn't always easy to deal with (angsty teen and all that) but Mom, Lyn and I were always close no matter how annoying one of us was being.  This is long overdue and I'm very much looking forward to it.

Monday, April 11, 2016

An Observation

On Sunday, my husband and I went out to breakfast with our children as we do from time to time.  One of the restaurants we frequent seems to have a higher percentage of elderly clientele on Sunday mornings than our other favorites.  While we eat, both my husband and I are aware of the tables around us and the patterns of behavior we see.  At this restaurant, we've witnessed an elderly man lead his wife from the table to the restroom and stand up to wave her over when she stepped back into the dining room looking for him.  We've heard another elderly man explain that a particular occupied table helped minimize the confusion his wife with dementia experiences and that they would wait until the table was available.  This week, we had another, related encounter.

A man in his early 60s accompanied his very elderly mother in for brunch yesterday.  They entered the restaurant just before us and were seated at the next table.  Just after our food was delivered, my husband indicated that the woman had been in the restroom for a very long time and her son was exhibiting increasing concern and helplessness.  He wanted to check on her but didn't know if he should open the door and call to her.  I quickly got up and asked if he wanted me to check on her for him.  Relief flooded into his face.  I asked her name and went in.  She was fine.  She asked if he had sent me.  I explained that we had witnessed his concern and offered.  She chuckled and said "He doesn't realize just how long it takes me these days to do things.  We lost my daughter a few months ago.  She understood.  He's just learning."  I expressed apologies for the death of her daughter and held the door for her as she shuffled her walker forward.  She was surprised that another table had noticed and thanked me for checking.  I told her it was my pleasure as we entered the dining room.  Her son jumped up to help usher his mother back to her seat.  He was clearly attentive but seemed a little unsure of what to do.  He had moved his mother into assisted living over the winter.  She wasn't thrilled but she acknowledged that her frail health was more than he could manage in his home.

While this lady clearly had all of her mental faculties, some of the others we have encountered did not.  When I look at the restaurant, I can see the appeal to these families.  Aside from the things you expect from a restaurant such as cleanliness, good service and food, it has a few other aspects that make it preferable for them.  There is no music being played.  The restaurant has a much lower volume than others which allows for easy table conversation.  The decor is of a more classic stye with  little visual clutter or over stimulation.  The lighting and color scheme also lend to the feeling of sitting in a cosy home instead of a busy restaurant.   It feels like a break from restaurants with black walls, harsh lights, blaring music and over-the-top decor.

The encounter with the lady and her son combined with the topic of discussion at our table.  We were talking with our kids about the various discriminatory laws being passed in states such as North Carolina and Mississippi under the guise of "religious freedom."  We feel it is essential that our children get exposed to controversial topics in a way that lets us set the context.  We want our children to learn to care and have compassion for others; not to expect people to comply to one set of narrowly defined behaviors.  As a result, our eldest is supportive of a friend who has come out as transgender and asked for a different set of pronouns and name to be used.  While we don't live in North Carolina, the law that was recently enacted there has been of concern to our eldest.

The restrooms at the restaurant are single gender rooms.  There is not a unisex loo there.  The man clearly felt that the "Ladies Room" label was a full prohibition to his ability to verbally check on his mother much less access her should she have needed his help.  My eldest quickly realized that these laws actually prevent caregivers from being able to properly support the people for whom they are caring such as the man and his mother.  These laws also mean that mothers cannot take their younger sons into the restroom.  Fathers are also prohibited from going to the restroom with their younger daughters.  My eldest was already angry about these laws because they are openly targeting our transgendered friends and family.

Now, we were able fold in the concept of unintended consequences into the conversation.  These bathroom laws are coming from a place of discrimination and they impact more than just the LGBTQ community.  They hit all levels of our society from our youngest babies to our eldest seniors.  If a man cannot help his mother, what are we doing to ourselves?  I've debated with a few folks in the Alzheimer's community about their personal desire to see the transgendered from being forced into the bathroom which corresponds to the person's gender at birth.  During those conversations, I'm not sure they expected that they would also be prevented from providing adequate assistance to a dementia patient of a different gender.  These laws are offensive and unnecessary and I hope they get repealed or overturned by the courts.

Thursday, April 7, 2016

Dementia Friendly Communities

Did you know there's a growing movement to create dementia friendly communities?  These are communities where there has been a concerted effort to identify the ways in which the community can help individuals living with dementia as well as their care givers.

In the US, there is the Dementia Friendly America initiative which is bringing together community leaders and sponsors who want to find ways to make their communities better places for their residents who are directly impacted by dementia.

The movement originates from a collection of communities in Minnesota which realized they were facing a growing rate of Alzheimer's and wanted to put supports in place.  For example, first responders may be trained in how to respond when they encounter an individual with impaired memory.  This training is helpful because the individual may be able to generally cover and if you're not paying attention, you may not realize they're in need of help.  It reminds me of the gentleman I encountered in the airport a couple of years ago.  He was lost and clearly confused and this kind of initiative would have made more people cognizant of his needs.

The movement to create dementia friendly communities is not limited to the US.  There are comparable initiatives in a number of countries around the world.  If this is of interest to you, a quick internet search will help you identify such an initiative in your area.

Additional Information:
Making Dementia Friendly Communities the New Normal - Forbes
More Cities Aim to be 'Dementia-Friendly' - The Wall Street Journal

Wednesday, April 6, 2016

Framingham Heart Study Trend

Dementia is an umbrella term which includes several diseases or conditions which result in a common set of symptoms.  Alzheimer's is just one disease which results in dementia.  Dementia may also be a result of a stroke or heart failure.

An analysis of the Framingham Heart Study, a multi-decade study to identify factors for heart disease, indicates there has been a decrease in the incidence of dementia over a 30 year period.  This is an interesting analysis because it points to improved cardiovascular health leading to improved cognitive function.

Anything that reduces dementia is a good thing!

Good heart = good brain.

Tuesday, April 5, 2016

Alzheimer's Facts and Figures

April is when the Alzheimer's Association has their Advocacy conference in Washington, DC.  In connection with that, they release their annual Facts and Figures video:

Monday, April 4, 2016

Focused Ultrasound

In March 2015, a story broke in the Alzheimer's community about an ultrasound treatment which restored memory functions.  A year later, the story regularly circulates and I get tagged with it by finds pretty frequently.  I totally understand the excitement around this announcement.  If it turns out to be correct, then we may have a winner here.  However, let's take a moment to break the story down a bit.

The story headlines are often quite sensationalistic such as the one above which screams "New Alzheimer's Treatment Fully Restores Memory Functions."  However, upon reading the text of the article, on quickly learns that the treatment is being performed on mice.  Lines of genetically engineered mice have been created to mimic Alzheimer's symptoms so that researchers can test their hypothesis against the mice instead of against humans.  Mice do not naturally develop Alzheimer's or Alzheimer's-like symptoms.

Why are mice used?  Mice breed prolifically which makes many readily available for those who need to study a specific line of mice.  Mice age quickly, allowing symptoms to be seen in one year instead of waiting decades for symptoms to be seen in humans.  They are small and easily cared for.  Mice carry fewer ethical or practical burdens for study or experimentation than larger animals or animals which are more closely related to humans.

What we've seen with numerous studies before is that something which looks promising in mice has not yet been found to work in humans.  Diseases are very complex.  With Alzheimer's we are not yet sure what causes the disease beyond a shadow of a doubt.  Is it the presence of Amyloid Beta and Tau tangles or is Alzheimer's itself several different concurrent diseases?  When we're not 100% sure, then the line of mice which are designed to exhibit a particular (set of) symptom(s) may be designed off of a completely false assumption or designed to present a biologically simplified version of the disease as noted in how mice are used to study Type 2 diabetes.  In cancer research, it has been found that using mouse models had less than an 8% successful translation to humans.  What this means is that less than 8% of the research using mice ended up being applicable to humans.  When there is success, it can be huge for those people who have the disease in question.  In 2010, the European Union debated the use of mice in studying human disease.  They acknowledged it is problematic but does offer hope for success.  However, at least one scientist has since raised the concern that part of the high failure rate is associated to the high rate that these industrialized lines of mice are compromised from the start.  They're fat and that makes them prone to disease and of limited use to research.

So, the mice are flawed and the pre-clinical work has a high likelihood of failing when human subjects are engaged.  What about the treatment?

The scientists claim to have used focused ultrasound to open the blood-brain barrier and stimulate the brain's microglial cells.  Let's break this down a bit more.

Waves of ultrasound energy are directed to a particular area.  In High Intensity Focused Ultrasound, this results in the cells in the area being heated to the point they die but not to the point where the liquids within them boil.  This is an effective treatment for some tumors for example.  This is not what the researchers want to do in the brain.  So, they may be looking at Low Intensity Focused Ultrasound or Transcranial Pulsed Ultrasound.  Both of those are lower energy output which increase cellular activity without killing the cells.  There's hope that the ultrasound use will allow for more medication to cross the blood-brain barrier. 

Microglial cells clear debris and dead neurons from the Central Nervous System.  If the treatment does increase the activity of the microglial cells, they will work to clean out any cell that is dead and they won't just focus on the plaques.  While they may help clean up the dead cells hanging out in the brain, they're not rebuilding the cellular connections.  However, low intensity focused ultrasound does stimulate cell growth.  The concern here is that it is not focused on any one type of cell and ultrasound is very difficult to target effectively.  So, they may end up stimulating the growth of cells which were unintended.

If we look at the source announcement, what we see is very different than what the headlines crow.  The use of focused ultrasound in treating Alzheimer's is just in its infancy.  The research is in a pre-clinical/early stage and is not currently for use with humans.  They are using 2 different lines of mice at two different universities.  The source material states that the researchers are hoping to open the blood-brain barrier to allow for medication to be more easily delivered to the brain.  The source material also states that they hope to stimulate neuron activity.  It does not claim that their mice are regaining memories.  A year later and the research has not been updated.

While I wish them well, I'm not sure that this approach will provide us with a treatment in the long run.