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

“Words Matter: Speaking Your Mind” (notes from caregiver conference talk)

This post is about effective communication within the care team may be of interest to caregivers and care recipients.

Brain Support Network volunteer Denise Dagan attended the Avenidas (avenidas.org) Caregiver Conference in late October 2016.  She took some notes from the various talks.  Here are Denise’s notes from the break-out session talk by author Ruth Nemzoff on “Words Matter: Speaking Your Mind.”

Among other suggestions, Ms. Nemzoff recommends hiring a geriatric care manager.  The professional organization of geriatric care managers now prefers this specialty be called “aging life care professional.”  You can find the organization online at aginglifecare.org.

The Alzheimer’s Association has information about the usefulness of geriatric care managers, including questions to ask when hiring one.  See:
Robin
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From Denise:
Ruth Nemzoff, author and speaker on family communications, is an expert at helping caregiver teams cultivate effective communication skills, cut through conflict, and eliminate drama.  We weren’t going to master all that in just an hour.  Instead, she shared with us some thoughts about how to treat someone who suddenly needs care, and building a team of various friends and family members.

Recently, Ms. Nemzoff had the eye-opening experience of being on the receiving end of care after a hip replacement.  She reframed her situation so as not to be overcome by depression, or boredom, and to find a distraction from the pain of recovery.  She focused, instead, on teaching her grandchildren  compassion.  The youngest was afraid of the changes in grandma, until she asked him to hand her things.  Then, he felt powerful, needed, and less afraid.  The older kids were creative in engaging with her, teaching her about electronic entertainment and useful apps, like Uber, until she could drive, again.  By actively enlisting the help of her family as their teacher, she was better able to accept their help.

Ms. Nemzoff has seen her share of family discord over caregiving issues, especially among siblings.  Strong feelings and resentments from past events do influence communication and decisions, especially during a crisis.  I had never heard the expression she shared, “Each child mothers their mother differently.”

Family members should agree; whomever is on site with the person needing care, and bearing the burden of decisions, has final word in any issue, even after discussion and/or disagreement – taking into consideration the opinion of the person needing care (or ‘caree’).  Caregivers should ask the caree what they want, in some detail, whenever possible.

Siblings should discuss how to share the burden of caregiving.  Each person possesses different skills and availability to help in some way.  Even someone out of state can do administrative tasks online (pay bills, file taxes, etc.).  Roles various caregivers play may change over time, so revisit this conversation periodically.

Communication improves with appreciation.  If you ask someone to take responsibility for a task, they are more likely to do it well, and offer more help, if you check in to see how it’s going and tell them you appreciate their efforts.

It is sensible to agree to spend the caree’s savings before dipping into the savings of family members.

If you have a family member who does’t ‘get’ the challenges of looking after your caree, ask them to stay with the caree for a few hours, as a favor.  They will see exactly what you deal with and, hopefully, be more understanding afterward.

Consider hiring a geriatric care manager.  They help plan and coordinate care of the elderly.  Ask at your doctor’s office or contact the professional organization of geriatric care managers at: www.aginglifecare.org/.

The Alzheimer’s Association has information about the usefulness of geriatric care managers, including questions to ask when hiring one here: www.alz.org/stl/documents/GCM_Tips.pdf.

It is not possible to avoid every crisis, even with a geriatric care manager on your team, but don’t despair.  Personal growth, deeper relationships, and good, can come out of crisis.

Ms. Nemzoff had a few suggestions for dealing with difficult issues between carer and caree, as well.

People will always do something for you that they would not do for themselves.  My Mom never liked going to the doctor, but when I said, “Mom, if my siblings find I am letting you skip appointments I will hear no end of it!  Please lets keep this one so I don’t have to listen to them gripe at me.”  She was more likely to get in the car when she saw it as making my life easier.

When trying to get someone talking who is reluctant to discuss a difficult topic, Ms. Nemzoff recommends generalizing other people’s experiences.  It provides an opening to talk about one’s own situation..  For example, “You know, Mom, I read that people with mild cognitive impairment can slow its progression by enrolling in activities for seniors.  The activity social interaction, and exercise is all good for the brain.  I bet we can find a senior program you would enjoy.”  Hopefully, ‘Mom’ will reply that is something she’s willing to do.

If your caree is reluctant to discuss medical options by dismissing them out of hand during an appointment, Ms. Nemzoff suggests making excuses (stopping at the bathroom or for some administrative task) on the way out, and snagging the doctor to get the information.  Share the options with your caree in a non-medical environment when he or she may be more receptive.

Ms. Nemzoff told a sweet story about a man with dementia who went to the bank every day asking for $100.  The teller knew him and always said, “Let’s have a look in your wallet and see how you’re doing for cash before withdrawing more.”  With a cup of coffee and a cookie, he would comply, have a nice chat and be on his way.  Ms. Nemzoff suggests we visit places where our carees want to do business independently, and inform customer service and/or sales people about our caree’s challenges.  Create a small, caring, neighborly community within the typically impersonal business environment.

If you are new to a circle of care, Ms. Nemzoff recommends asking the person needing care how you can be helpful; at least until you figure out what your role will be to him or her.  It’s a kind, generous, thing to do.

Finally, she recommends we start now discussing our own caregiving expectations with our loved ones, and revisit the subject often as circumstances change.  Talking about it now, will help communication and decision making go more smoothly later.

“Elder orphans” band together for support and advice (USA Today)

Having no children myself, I think a lot about who will manage my care when I’m older.  Or, more precisely, will my healthcare power-of-attorney know how to hire and manage the geriatric care manager who is managing my care?

This recent USA Today article addresses the topic of “childless seniors.  The author Kim Painter notes:

* About 20 percent of U.S. women now reach their 50s without having children, up from 10 percent in the 1970s.

* One third of middle-age adults are heading toward retirement years as singles, after never marrying, divorce or widowhood.

* Women are likely to be single or become single as they age, with more than 80 percent unmarried after age 85.

The article shares some ideas for possible living arrangements. Here’s a link to the article:

www.usatoday.com/story/life/2016/10/16/elder-orphans-aging-support-advice/91847270/

“Elder orphans” band together for support and advice
Kim Painter, Special for USA TODAY
6:06 a.m. EDT October 16, 2016

Robin

“The Cure for UTIs? It’s Not Cranberries” (NYT)

A study was published in the journal JAMA last week that showed “no reduction in urinary tract infections for female nursing home patients who took standardized, high-dose cranberry capsules — the equivalent of 20 ounces of juice daily — for a year.”

A link to an article from last week’s New York Times about the study is here:

www.nytimes.com/2016/10/28/health/cranberry-juice-uti.html

Health | Misconceptions
The Cure for UTIs? It’s Not Cranberries
New York Times
By Jan Hoffman
Oct. 27, 2016

Robin