5 things to do after a diagnosis

Though titled “What to do after an Alzheimer’s diagnosis,” I think most of the article applies to any diagnosis.  This article is directed as caregivers but some of it applies to those with a diagnosis.

According to the Next Avenue (nextavenue.org) article, the five things to do after a diagnosis are:

* Organize Documents and Resources
* Collect Memories
* Continue to Do Enjoyable Things
* Plan Care Options
* Prepare for Anticipatory Grief

Here’s a link to the article:

www.nextavenue.org/after-alzheimers-diagnosis/

What to Do After an Alzheimer’s Diagnosis
Taking these concrete steps will help you cope later on
Next Avenue
By Amy Florian
January 20, 2017

Robin

Anosognosia (lack of awareness) in dementia

Someone on a frontotemporal dementia online support group recently suggested this “Senior Living Blog” post on anosognosia, which is a lack of awareness of impairment.  Though this post is focused on Alzheimer’s Disease, I believe it can affect those with non-AD dementias as well, such as LBD, PSP, and CBD.

Obviously if the family member has anosognosia, this is a difficult situation for the caregiver who wants to provide care and work with physicians to provide treatment.  Of course many of us think that our family member must be in a state of denial, when it’s really anosognosia.  Sarah Stevenson, the author of the “Senior Living Blog” post, addresses all of these issues.

Ms. Stevenson wisely draws on an AlzOnline article about anosognosia; it’s one of the best articles I’ve read.  See this email from 2009:

www.brainsupportnetwork.org/dealing-with-anosognosia-unawareness-of-decline-or-difficulties/

Ms. Stevenson also offers this suggestion:  Try reading “I Am Not Sick. I Don’t Need Help!” by psychologist Xavier Amador, a professor at Columbia University.  This book “provides practical recommendations for those who lack insight into their mental illnesses.”

Here’s a link to the post:

www.aplaceformom.com/blog/3-4-14-anosognosia-and-alzheimers/

Senior Living Blog
Anosognosia and Alzheimer’s
A Place for Mom
By: Sarah Stevenson
Posted On 22 Mar 2016

Good luck!

Robin

 

Problems families dealing with dementia may face

I recently stumbled across the website, patient.info, which is a resource for UK physicians about various disorders.  The website contains a helpful page about caregiving for someone with dementia.  Though it is written with physicians in mind (ie, how physicians can be supportive of families), I think the page provides a good summary for laypeople as well.

In addition, I think much of this article applies to caregivers who are NOT dealing with dementia.  Much of the information and advice is generic.

Here’s a link to the full article:

patient.info/doctor/supporting-the-family-of-people-with-dementia

Supporting the Family of People with Dementia
Patient, a UK organization
Last reviewed May 2014

Note that in the UK “caregivers” are referred to as “carers.”  (It’s a superior term in my mind.)

Robin

Short description of Lewy body dementia

The website DementiaGuide (dementiaguide.com) describes itself as “helping people affected by dementia.”  It looks to be a business wanting to enroll families for a fee in dementia symptom tracking.

Their short webpage on the three most common types of dementia includes a paragraph of Lewy body dementia.  See:

www.dementiaguide.com/community/dementia-articles/Symptoms_of_Different_Types_of_Dementias

Differentiating Different Types of Dementia Symptoms
Identifying unique symptoms that correlate with common types of dementia
DementiaGuide

I’ve copied a short excerpt below.  Every day I went to the webpage, the day the short article was “posted” changed to the day I went looking so I’m not sure how relevant the date is.

Robin

——————————–
Excerpt from:
Differentiating Different Types of Dementia Symptoms
Identifying unique symptoms that correlate with common types of dementia
DementiaGuide

There are many conditions that can cause dementia. These underlying conditions are also referred to as types of dementia. The three most common types are Alzheimer’s disease, vascular dementia, and Lewy body dementia.

Dementia symptoms that generally occur in all three types include significantly impaired intellectual functioning, memory loss, loss of ability to solve problems and maintain emotional control, neglect of personal safety, hygiene, nutrition and personality changes. Each dementia type has its own distinctive symptoms.

With the last dementia type, Lewy Body dementia, the differences in dementia symptoms are more distinctive. Hallucinations can occur at the early stages and not in the latter stages. Their cognitive impairments fluctuate frequently (moment-to-moment, day-to-day). So, one moment, someone with Lewy Body dementia can’t remember what day it is, but the next moment, he or she can remember everything they did years before. Unlike the other two dementia types, impaired memory does not occur first, but waits until they have had the dementia for a period of time. People with this dementia type may have distinctive Parkinson-like symptoms: tremors, slow movements, stooped posture, stiffness in arms/legs, shuffling walk patterns, and mask-like facial appearance. Dementia symptoms can be unique to the dementia type and help medical experts to differentiate the diagnosis.

Is Alzheimer’s Disease a Uniquely Human Disorder? (webinar)

Alzforum is hosting a webinar on Wednesday, December 7th at noon eastern time on the topic of “Are we humans alone in developing Alzheimer’s disease?”

Other primates and even dogs accumulate amyloid plaques as they age, but seem surprisingly resistant to neurofibrillary tangles, neurodegeneration, and full-blown dementia. What sets us apart from other animals, and what can we learn from their resilience?

Join Lary Walker, Marc Dhenain, Elizabeth Head, Patrick Hof, Cynthia Lemere, and Peter Nelson for an Alzforum Webinar.  For more info and a link to the registration page, check out:

www.alzforum.org/webinars/alzheimers-disease-uniquely-human-disorder

 

Neurodegenerative Diseases, covered in Nature Insight

The November 2016 issue of Nature Insight is devoted to neurodegenerative diseases, which are increasing in prevalence in part due to extended lifespan.

The collection of articles summarizes our knowledge on six topics:  brain aging and the prospect of stalling the clock; a multipronged treatment approach to Alzheimer’s; ALS, also known as Lou Gehrig’s disease; Parkinson’s; mammalian prions; and the properties of amyloid protein aggregates.  All of the articles are available online at no charge for six months.  See:

www.nature.com/nature/supplements/insights/neurodegenerative-diseases/

In case you are capable of reading/understanding any of these articles, perhaps you can share some tidbits with the rest of us!

Robin

Diagnostic accuracy is low, even for Alzheimer’s!

This email may be of interest to the armchair researchers among us and those following progress on brain imaging for Alzheimer’s and other amyloid-based pathologies.

For the last several years, researchers at major medical centers have had access to amyloid PET scans.  These scans indicate if there’s amyloid in the brain.  Amyloid is one of two proteins involved in Alzheimer’s Disease.  Just because there’s amyloid in the brain doesn’t mean someone has Alzheimer’s but the chances are high given the prevalence of the disease.  And just because there’s amyloid in the brain doesn’t mean that other disorders, such as Lewy Body Dementia, aren’t also present.

Amyloid PET scans are slowly moving into clinical use.  Insurance companies generally don’t want to pay for an amyloid PET scan as having a more accurate diagnosis doesn’t presently lead to any helpful treatment.

An interesting study was recently published about how amyloid imaging can change the clinical diagnosis.  The study is discussed here on the AlzForum:

With Amyloid Scan in Hand, Physicians Manage AD Differently
AlzForum
04 Nov 2016

The most interesting part of the study to me was how poor the diagnosis is without using an amyloid PET scan.  The study reported:  (AD = Alzheimer’s Disease)

“PET scans revealed that about one-third of patients diagnosed with AD were amyloid-negative, while about half of patients with other diagnoses were amyloid-positive.”

So this means that about one-third of all the patients neurologists thought had Alzheimer’s don’t have Alzheimer’s.  And half of the patients neurologists thought didn’t have Alzheimer’s in fact have Alzheimer’s!

Did the scan results change the diagnosis?  The study reported:  (Aβ = beta-amyloid)

“Diagnoses for nearly all the Aβ-negative patients changed to non-AD. Only half the non-AD Aβ-positive patients were given a new diagnosis of AD.”

So, the amyloid-negative scans swayed the post-scan diagnosis.  Why did the amyloid-positive scans not change the diagnosis?  AlzForum says:

“Researchers praised the fact that clinicians did not simply equate an amyloid-positive scan with AD. ‘That’s appropriate. The scan should be just one data piece you use along with other clinical context to make a diagnosis,’ [UCSF neurologist Gil] Rabinovici said. He also liked the fact that clinicians put less weight on a positive scan than a negative one, recognizing that amyloid pathology can occur in other disorders. Nevertheless, the 12 amyloid-negative patients maintained their AD diagnosis because they fit the profile of Alzheimer’s extremely well, Boccardi noted. These patients might have had false negative scans, or they might have suspected non-Alzheimer’s pathology (SNAP), she suggested. Analysis of the collected CSF for disease biomarkers might shed additional light on their pathology.”

Clearly, there’s lots more work to do….

Robin

“Understanding the Dementia Experience” (with focus on memory loss)

This post may be of interest to those caring for someone with memory loss.

Recently, on an online Alzheimer’s support group, I saw a recommendation for the booklet “Understanding the Dementia Experience,” by Jennifer Ghent-Fuller, a retired nurse.  The 70-page booklet is available here at no charge:

Understanding the Dementia Experience
Jennifer Ghent-Fuller
2015
www.smashwords.com/books/view/210580

The goal of the author seems to be to have caregivers understand that the caregiver must change his/her own behavior and attitude because the person with dementia cannot.

Brain Support Network volunteer Denise Dagan recently reviewed the booklet for all of us.  She concluded that the book is written with memory loss (so, Alzheimer’s Disease) in mind, so if your loved one has memory loss, this booklet may be of interest to you.  Take it away Denise….

The author, Jennifer Ghent-Fuller, a retired Canadian nurse, worked the last 11 of her 25 years as an educator and support counsellor for people with dementia and their families and other carers.

While her writing style took a bit for me to get used to, she certainly has all the information in there, particularly with respect to Alzheimer’s disease, but it can be extrapolated to other dementias, especially in the later stages when memory and cognition are affected.  It is presented in a conversational, warm and instructive manner.

She begins by explaining that people with dementia should not be seen as people with behavior problems because the disease causes them to have an altered view of reality.  “Once we understand the dementia experience, we see their behavior as appropriate within the context of the dementia.”

Here are a few common examples we may react to differently until we understand “the dementia experience”:

As a person’s long term memories are lost from the most recent to the past, they initial have access to most of the past 50 years, then only the first 40, then 30.  This results in them thinking of themselves as progressively younger.  This man manifest itself as “not recognizing their family because they are looking for the individuals they were sharing their life with at age 30.”

Because of this regression, “It is extremely common for people with Alzheimer’s disease to be looking for their parents, and to be distressed if they are told they are long dead.”  She explains what can happen if one persists in telling them the truth.  It is best to avoid causing them emotional pain.  Remember, in their mind they may be feeling like they are only 10 years old!  She suggests telling them, for example, your parents are (insert a place they enjoyed) and they miss you.

“If you compare reality to a jigsaw puzzle, we have all the pieces in place and are able to see the whole picture.  The longer a person has Alzheimer’s disease, the more pieces are missing, and the more difficulty they have in understanding the picture.  However, it is human nature to try.”  This may result in many unfortunate scenarios.  “They may look at their 30-year-old daughter and decide she must be their sister, calling her by their daughter’s aunt’s name.  They may blame others for things that have gone wrong,” or gone missing.  Fuller has a good response to every situation after explaining how the person with dementia has come to the comments or behavior in example after example.

She introduced me to “Spaced Retrieval” training, which allows someone to help a person with Alzheimer’s develop new habits, such as use a walker correctly, but they do not remember being taught.  Information and a link to download the app can be found here:

tactustherapy.com/app/srt/

Remember, this does not “reverse the loss of the ability to think rationally, memorize, think in the abstract, have insight, consider many facts at once to solve a problem, or assess the feelings of one’s own body and reach a conclusion about what to do next in order to resolve difficulties.”

She really leaves no stone unturned, even including at the end, the brochure “How to Interact with a Person with Dementia (with Memory Loss),” which is bullet points of what to keep in mind when interacting with a person with dementia, with Do’s and Don’ts.

Her final thought is “You need to change your behaviour to adapt to the dementia because the person with the disease cannot.”

– Denise

Managing difficult behaviors, hallucinations, and delusions with validation and redirection

This post will be of interest to those caregivers coping with dementia.

The title of an article on ElderCare Online suggests it’s about managing difficult behaviors. Actually, the article offers practical tips for managing difficult behaviors, hallucinations, and delusions.

Tips are given for dealing with the situation where a family member with dementia sees a rabbit on the sofa, asserts that you are not the spouse, insists that it’s time for breakfast (even though it’s “really” time for dinner), wants to re-arrange the cupboards, or gets “underfoot” all day long.

Some of these tips are based on Naomi Feil’s validation therapy. The author explains: “First, the idea behind validation therapy is to ‘validate’ or accept the values, beliefs and ‘Reality’ of the dementia person – even if it has no basis in your reality.”

And, the author says: “The key is to ‘agree’ with what they want but by conversation and ‘steering’ get them to do something else without them realizing they are actually being redirected. This is both validation and redirection therapy. Does this always work? NO! But it has a pretty high success rate because it is so non-confrontational.”

Three examples are given about how a conversation might go when the person with dementia wants to find his car keys, starts leaving the house, or wants to use the phone.

Based on the copyright, it looks like this article was written in 2000. Someone referred to it recently on an online Alzheimer’s support group. It’s posted to ElderCare Online (ec-online.net). See:

www.ec-online.net/community/activists/difficultbehaviors.htm

Using Validation Therapy to Manage Difficult Behaviors
by Jan Allen, CSW, MSE
ElderCare Online (ec-online.net)

Robin

 

Tau drug failed in Alzheimer’s trial (despite what newspapers say)

This post may be of interest to three groups:
* those of you following experimental drug therapies for PSP and CBD, both tauopathies (disorders of the protein tau);
* those of you fascinated (frustrated?) by the disconnect between research results and the popular press; and
* those of you tracking low diagnostic accuracy for Alzheimer’s Disease.

Some of you might remember there was an experimental drug called Rember, based on methylene blue.  The latest version of Rember is called LMTM, TauRx0236, or LMT-X.  Clinical trials of LMT-X in Alzheimer’s recently ended.  LMTM is made by TauRx Therapeutics.

For background, see our May 2015 blog post with an update on LMTM:

www.brainsupportnetwork.org/methylene-blue-update/

According to the Alzforum, at a late July 2016 Alzheimer’s conference in Toronto, a researcher “reported that LMTM failed to slow cognitive or functional decline in people with mild to moderate Alzheimer’s disease. On the main primary results slide, disease progression curves for both doses of drug and the placebo were practically identical.”  And, yet, later in the presentation, the researcher continued to claim that there was a strong benefit on cognition from the drug in a subgroup.

Alzforum said:

Many researchers in the room, and later in the hallways, were dismayed not only at the way the data were being parsed, but also at media stories about the drug’s ostensible “success.” Outlets such as The Times, New Scientist, and the Huffington Post variously announced the arrival of the first drug to halt Alzheimer’s, or that the drug slowed disease by 80 percent, even while leading Alzheimer’s researchers at AAIC were challenging the company’s leader, Claude Wischik, for overstating the trial’s result.

Paul Aisen, with USC, suggested that not very many people in the LMTM clinical trial actually had Alzheimer’s!  Alzforum said:

Aisen further pointed out that the fraction of people in the trial who carried an ApoE4 allele—48, 42, and 53 percent among the placebo, low-, and high-dose LMTM, respectively—seemed low. “In ADCS trials, ApoE4 prevalence among people with mild to moderate AD is typically 60-70 percent,” he said. “Since there was no biomarker to support the diagnosis of Alzheimer’s disease, the low ApoE4 numbers make one wonder about the accuracy of the diagnosis,” Aisen said. “If you rely solely on clinical diagnosis, then you had better have highly experienced clinicians,” he added. In ADNI, the bapineuzumab and first set of solanezumab Phase 3 trials, about a quarter of participants, especially the ApoE4 non-carriers, were later found to be amyloid-negative.

Here are all the details, if you’d like more:

www.alzforum.org/news/conference-coverage/first-phase-3-trial-tau-drug-lmtm-did-not-work-period

In First Phase 3 Trial, the Tau Drug LMTM Did Not Work. Period.
Alzforum
29 July 2016

Robin