“The Happy Hours” – great idea for socialization and other thoughts from KLS

Kathryn Leigh Scott (kathrynleighscott.com) has recently published three books about caregiving —
“The Happy Hours”
“A Welcome Respite”
“Now With You, Now Without”

In January 2018, I shared Denise’s short review of “A Welcome Respite.”

In 2016, Kathryn Leigh Scott (KLS) published the beautiful book “Last Dance at the Savoy,” about caring for the love of your life through the very end. KLS mentions Brain Support Network for help with brain donation in this book. Denise’s short review of that book is posted to our blog, www.brainsupportnetwork.org/blog.

After listening to a February 2018 interview* of Kathryn Leigh Scott, I think “The Happy Hours” might be of interest to some of you. I haven’t read it yet but, in the interview, Kathryn shares the core idea of the book. In her husband Geoff’s final years — after he was diagnosed with progressive supranuclear palsy (PSP) — she was determined to make the most of his remaining time. And she was determined that neither Geoff nor she, as the caregiver, would be isolated.

KLS and Geoff instituted “happy hour” at their home. The happy hour took place in the master bedroom. She removed all signs of medical equipment or disability. She added a bistro table and chairs. There was an open door policy. Anyone could come. Geoff wore an amplification device so that his voice could be heard. Apparently these gatherings were very important to her husband as they helped him be remembered by others.

In the interview, she mentions a few other things worth sharing here. First, she says that the key is to have patience. She tried to remember that “Geoff can’t help it.”

Second, she found the role reversal of caregiving very difficult.

Third, she addressed the importance to her husband Geoff of his engaging in research. He participated in trials. And he donated his brain for research. They both participated in an environmental study of PSP.

Fourth, she recommends hospice at home. She doesn’t call hospice “end of life care” but rather “quality of life care.”

A few things were said about PSP in the interview. I’ve put some notes about that below for the PSP folks on this email list.

Robin

———–

* https://www.youtube.com/watch?v=j4hzl7SYseA&feature=youtu.be

The caregiver-related part of the interview is basically from minute 6 to minute 22.

From minute 6 to minute 10:27, Kathryn Leigh Scott offers some general information on PSP. She describes PSP as being part of a family of five progressive movement disorders. The five are PSP, corticobasal degeneration, multiple system atrophy, Lewy body dementia, and ALS. The host of the interview incorrectly refers to these as auto-immune disorders. KLS said that 20K people a year are diagnosed with PSP in the US. PSP research is informing Alzheimer’s research.

SHARE program available to some caregivers in the Bay Area

This blog post will be of interest to those living in the San Francisco Bay Area, who are caring for those age 60 or older without dementia.

Northern California-based Family Caregiver Alliance (caregiver.org) is
organizing a free educational program called SHARE.

Within Brain Support Network, three types of caregivers are eligible —
* PSP caregivers not dealing with dementia
* CBD caregivers not dealing with dementia
* all MSA caregivers

The care receiver (person with a neurological diagnosis) must:
–  Be over age 60
–  Be living at home in the San Francisco Bay Area
–  Have intact cognitive abilities – NO dementia
–  Not be in the terminal stage of their disease

The caregiver will receive:
–  6 in-person home visits
–  Learn effective communication skills
–  Learn to reduce stress
–  Learn to promote health
–  Learn about long-term care management (make the most out of today
while planning for tomorrow)

If this is of interest, contact Michelle Venegas (415-434-3388, x323,

[email protected]) at Family Caregiver Alliance.

Video of man with PSP with messages to recently-diagnosed people

This morning, I came across this post on an online PSP support group and received permission to share it here.
Robin

———————

From Bill Gibbons
Lindon, UT
I was diagnosed with PSP five years ago. I recorded a video of friendship and greeting, especially intended for those of you with the disease, and with a special sense of regard and best wishes for those recently diagnosed.

youtu.be/0Y-nejkZLl8

“Chicago Med” TV show had a PSP patient

On Tuesday, January 16, 2018, the NBC TV show “Chicago Med” had a story that included a woman with progressive supranuclear palsy (PSP). The same woman had appeared in a previous episode where some details were given of PSP. In last week’s show, the patient had pneumonia. There was lots of discussion of a do-not-resuscitate (DNR) order and being placed on a ventilator. The patient died.

One person on an online support group said that last week’s TV show gave her a good opening to discuss pneumonia, end-of-life treatment, and the topic of a DNR with her spouse with PSP.

There was also some discussion online about how the lady with PSP had no problems with cognition, speech, or her eyes.

Here’s a link to Tuesday’s episode:

www.nbc.com/chicago-med/video/over-troubled-water/3649706

Robin

“A Welcome Respite” by Kathryn Leigh Scott

Last year Brain Support Network (BSN) volunteer Denise Dagan recommended the book “Last Dance at the Savoy,” by Kathryn Leigh Scott, to BSN members.  It is a beautifully written account of the author’s caring for her husband, Geoff, with progressive supranuclear palsy (PSP).  In it she shares both her struggles and lessons learned as a long term caregiver.

This year Kathryn has published “A Welcome Respite,” which is a stand-alone chapter about her struggles with caregiver exhaustion and the need for respite.  She shares the gradual, almost insipid way in which changes to their routine, which she thought were necessary due to Geoff’s progressing symptoms, were destructive to both their quality of life and the closeness of their relationship.

Fortunately, she also shares how she made positive changes to counter the negatives — once she was able to recognize the signs of caregiver exhaustion.  Obviously, her purpose in setting apart these excerpts from “Last Dance at the Savoy” are to help readers recognize their own caregiving exhaustion and offer suggestions to counter it.  Kathryn encourages long term caregivers to “find a new perspective and refresh ourselves…Daily periods of rejuvenation are vital, too.”

Like “Last Dance at the Savoy,” “A Welcome Respite” is NOT focused on PSP.  It is of general interest to all caregivers.  It can be purchased on Amazon for less than two bucks.

Here are a few passages Denise thought worth sharing.  Denise says:  Perhaps you will recognize yourself in some of them.

Robin

————-

“In preserving the impression that all was fine, I was downplaying the increased responsibility and daily adjustments that gave me less time to refresh myself.  The lack of respite resulted in concealed anxiety and increased fatigue.”

Geoff’s “desire to keep his condition secret meant fewer outings and less social contact.  As he required more care, I cut back on my professional work and outside activities, and we spent much of our time alone together.”

“I’d been slipping into unhealthy habits without realizing it, focusing entirely on Geoff’s welfare and ignoring my own.  I’d prepare special, easy-to-eat meals for Geoff but neglect to put food on my own plate, my dinner turning into an afterthought of leftovers eaten over the kitchen sink.  I’d make a nourishing smoothie for him but fail to have one myself.  I learned how to use a gait belt to give me a firm grip when I took Geoff for walks in the park and rigged an over-the-door fully system for him to exercise with at home, but stopped going to the gym myself and didn’t make time for my own fitness routine.  At the end of the day, in an effort to unwind, I’d pour an extra glass of wine when a quiet, reflective walk in the garden would have served me – and Geoff – better.”

After lunch with a fellow caregiver support group member Kathryn observed, “On my drive home, I realized Mari and I had each expressed major signs of caregiver burnout; anxiousness and fatigue; difficulty sleeping; feeling run down and irritable.  Making mistakes while functioning on autopilot indicates difficulty concentrating.  Feeling resentful and overreacting to minor mishaps, shouting at the very people we were caring for – Mari and I had both experienced these.  Were we also eating and drinking more in place of healthier leisure pursuits?”

“There comes a point when caregivers simply cannot do it all on their own.  When the time care for home hospice for Geoff, it should have felt like a respite to me, but I couldn’t see it that way at first.  With hospice in place, I was no longer my husband’s sole caregiver – a major disappointment.  A doctor was on call, with rotating shifts of nursing aides bathing, feeding and medicating him while I stood by, empty-handed, watching others do what I ought to be doing, and hating that I’d relinquished the intimacy of caring for Geoff myself.”

“Being stripped of the mind-numbing routine labor of caregiving had left me rattled and uncertain.  I was experiencing a curious withdrawal anxiety, wanting to be in charge and fearful that I wasn’t.  Stress at not being ‘burdened’ was getting to me.  I was crying too much, not eating enough.  I needed respite and knew it.”

2017 Accomplishments and Year-End Challenge Grant (for contributions by Dec. 31st!)

As 2017 ticks down, we hope you enjoy some quality-time with family and friends. We wanted to share our results for 2017. Plus, this is a great time to make a charitable contribution as other generous donors are doubling your contribution.

UPDATE

Brain Support Network (BSN) continues to pursue its three missions:
(1) create and disseminate information on LBD, PSP, MSA, and CBD to members (You are one of 450 Northern Californians on our network’s email list.)
(2) coordinate the local caregiver support group in San Mateo
(3) help any family with brain donation.

We (BSN volunteers and part-time employees) have kept busy in 2017:

UPDATE

Brain Support Network (BSN) continues to pursue its three missions:

(1) create and disseminate information on LBD, PSP, MSA, and CBD to members

(2) help any family with brain donation

(3) coordinate the local caregiver support group in Northern California

We (BSN volunteers and part-time employees) have kept busy in 2017:

* We sent out over 250 email updates, most of which focused on one of four specific disorders: LBD (Lewy body dementia), PSP (progressive supranuclear palsy), MSA (multiple system atrophy), and CBD (corticobasal degeneration). Many emails relate to caregiving and dementia caregiving.

* We published over 600 Facebook posts on similar subjects (because some people prefer Facebook).

* We served as a clearinghouse of information and support for network members.

* We have kept our web site relevant and up to date (e.g. our “Top Resources” lists for the four primary disorders and our blog).

* We organized 94 brain donations (a new record for BSN), most of which were delivered to the Mayo Clinic in Jacksonville. (Of course the year isn’t quite finished.)

* We hosted our largest-ever “Research Update and Practical Conference on PSP/CBD” in cooperation with the UCSF Memory and Aging Center on October 28, 2017, in San Mateo. Conference video and handouts are available.

CHALLENGE GRANT

This is the time of year when we ask you for assistance.

Five long-time support group members and two long-time BSN benefactors have offered a “challenge grant” to network members. Your charitable contributions through December 31st will be matched up to $8,000. Please help us take advantage of this opportunity and help make possible our efforts for the coming year.

If you mail a check, please write “match” on the memo line along with the name of the family member or friend that you are honoring or remembering. Or, enclose a note with that information. Make checks payable to “Brain Support Network,” and mail to BSN, PO Box 7264, Menlo Park, CA 94026. To count towards the challenge donation, checks should be dated and postmarked by December 31, 2017, Your check does *not* need to be received by this date.

If you make an online contribution (via credit card), please write the name of your family member/friend after selecting “in honor of” or “in memory of.” Please append “/Match” to the name of the person. To count towards the challenge donation, online contributions should be completed by Sunday, December 31, at 11:59pm California time.

Brain Support Network is recognized by the IRS as a 501(c)(3) tax-exempt charity and your donations are deductible to the extent allowed by law. Please know that any amount—$25, $50, $100, $250, $500, or more—is appreciated! Thank you for supporting our three missions!

Happy 2018 to you and your families!

Take care,
Robin (volunteer)
Brain Support Network CEO

Negative Results with TPI 287 in CBS and PSP

A local support group member whose loved one was involved in this TPI 287 trial at UCSF contacted me a couple of weeks ago to say that she had learned that the trial was not successful.  I haven’t been able to find any independently-written article [see updated below!] on the study results (and, of course, clinicaltrials.gov shows nothing) but there is this pharmaceutical company press release.

The TPI 287 study was discussed by Adam Boxer, MD, UCSF at our recent PSP/CBD conference.  This was a phase 1 study, which has a safety focus.  Researchers are also trying to learn something about efficacy during these studies but that’s not the main point.  In the study, 14 patients with PSP and 30 patients with CBS were included.  32 received the drug and 12 received the placebo.

This seems to be the crux of the problem — “Interestingly, patients treated with TPI 287 performed worse on the [Clinical Dementia Rating] assessment vs. placebo after 12 weeks.”

Update:  A member of our email list forwarded me that independent write-up I was looking for on TPI 287; it’s on Alzforum. Just as the group member said, the trial had negative results. In addition to the worsening in the dementia rating scale (mentioned earlier today), there was also a worsening of falls in CBD and PSP patients. The study was also conducted of the same compound, TPI 287, in Alzheimer’s Disease. The experimental drug was not safe in AD patients at high doses. An excerpt from the Alzforum summary is below.

Robin


www.alzforum.org/news/conference-coverage/least-we-know-these-dont-work-negative-trials-ctad
Excerpt from
At Least We Know These Don’t Work: Negative Trials at CTAD
Alzforum
15 Dec 2017

Abeotaxane
Adam Boxer, University of California, San Francisco, presented his center’s Phase 1 trial of TP1 287. Also known as abeotaxane, this small-molecule taxol derivative stabilizes microtubules. TPI 287 accumulates in the brain, and has been tested primarily to treat central nervous system tumors. Its application to tauopathies grew out of work showing beneficial effects of the microtubule stabilizer epothilone D in tau transgenic mice (Zhang et al., 2012). Testing of epothilone D in AD patients started in 2012 but was discontinued for lack of efficacy.

Boxer’s group examined the safety and tolerability of TP1 287 in 44 people with the primary four-repeat tauopathies cortical basal degeneration (CBD) or progressive supranuclear palsy (PSP), and in 33 people with AD. Participants received abeotaxane by intravenous infusion once every three weeks for nine weeks, with an option for open-label extension up to three months.

In recruiting for the CBD cohort, Boxer screened with amyloid PET to exclude people with AD and to limit the treatment group to people with pure tau pathology. Of 55 diagnosed with CBD, Boxer excluded seven based on positive amyloid scans. He also used CSF biomarkers to confirm diagnoses: AD patients had lower Aβ42 and higher total tau and phospho-tau levels than CBD/PSP group members, who showed elevations in neurofilament and a higher neurofilament light (NfL)/phospho-tau ratio than the AD group.

Participants received tailored doses of 2, 6.3, or 20 mg/meter2 TPI 287, or placebo.

AD patients tolerated the treatment poorly. Boxer told the CTAD audience that he had to stop the high-dose arm because two participants suffered anaphylactoid hypersensitivity reactions, most likely to the diluent for the active compound. In all, seven people in the AD group discontinued treatment. Curiously, the CBD/PSP group tolerated the drug well, even at the highest dose. They suffered no hypersensitivity reactions, and most participants stuck with the trial even through the open-label extension. However, in CBD and PSP patients, the drug caused more falls, a serious concern.

On the exploratory cognitive endpoints, the researchers saw a hint of stabilization of MMSE scores in the AD group, but no change in the ADAS-Cog, and the CBD/PSP cohort had a dose-related worsening on the Clinical Dementia Rating-Sum of Boxes at three months.

Boxer has no future plans for the drug, except to complete the analyses of pharmacokinetics and MRIs. He told Alzforum that investigators learned a lot from the trial. “It shows the importance of testing potential treatments in different tauopathies,” he said. “Animal models don’t tell the whole story, and we have to look at different conditions in humans,” he said.

 

Excerpt on acceptance/denial in “Finding Meaning with Charles”

Janet Edmunson, author of the book Finding Meaning with Charles, has given permission to share an excerpt on acceptance and denial.  The “Charles” in the book’s title is Janet’s late husband.  He was diagnosed during life with progressive supranuclear palsy, and with corticobasal degeneration upon death.  We have many copies of the wonderful book to share within our local support group.

Though the book is primarily for caregivers, I think those with a neurological diagnosis can find great benefit from it.  And the book has very few PSP-specific or CBD-specific details so it can be appreciated by everyone.

Check out Janet’s website (janetedmunson.com) at for details on her occasional webinars for caregivers and for her “positive affirmations” emails.  Her book can be purchased at Amazon.com.

Excerpts are below.
Robin
————————–

Excerpt from

Finding Meaning with Charles
by Janet Edmunson
Available in paperback, audiobook and e-book formats on Amazon.com

It wasn’t until about the third year of Charles’s disease that the Serenity Prayer had its greatest impact on me. But I have always loved it, and it means the most to me when I am going through tough times: “ . . . grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”

I have really latched onto the concept of “accepting the things I cannot change.” Though we tried to fight it, Charles’s disease was going to take away his abilities, and eventually, his life. Our choice was to accept that or deny it.

I don’t know for sure what Charles’s choice was. He was determined not to let the disease change his life and goals. He tried hard to keep contributing as best he could. That was how Charles tackled everything in life. He denied the obstacle and set out to conquer it. He wouldn’t succumb. He fought all the way to the end.

Is that acceptance or denial?

I, however, consciously chose to accept it and make the most of it.

My greatest learning through this experience came when Charles and I attended the Mind/Body Medical Institute program which, at the time, was held at Beth Israel Deaconess Hospital in Boston. The instructor, Peg, talked about acceptance, explaining that the way to accept the things that we have no control over, such as an illness, is to make meaning out of it. Wow! Make meaning out of it! Her explanation suddenly allowed me to consciously look at what Charles and I were going through and identify where it helped us grow and where it allowed us to have an impact on others that we wouldn’t have had without the adversity of his disease.

Taking a proactive approach to making meaning out of our situation helped me to positively focus on the opportunities and not plunge into depression. I was determined to help Charles reach whatever potential his life could give. And I was amazed to see how Charles became even more influential – even after he could no longer talk. As a caregiver, I found it important to focus on this greater purpose. My goal for caregiving went beyond making sure Charles was safe and physically cared for. I wanted to ensure that he still lived life to the fullest whatever degree the disease would allow.

Accepting Charles’s disease and making meaning out of it didn’t mean that we didn’t feel pain. Coping with this type of degeneration was difficult physically and emotionally for Charles, the person with the disease, as well as for me, the caregiver. We faced many trials – some successfully, others not. But we both became better people through experiencing his disease.

Scott Peck starts his book, The Road Less Traveled, with the sentence “Life is difficult.” He goes on to explain that once we accept this, we can begin to make the most of life. Charles and I had discussed this concept a number of times when we faced problems at work or with other people. The misfortune of his disease forced us to face our greatest life difficulty, truly testing our ability to accept adversity and then move on.

I don’t know of anyone who expressed this thought better than Viktor Frankl in his book, Man’s Search for Meaning. Frankl survived the atrocities and indignities of a concentration camp in World War II.

He realized there that to renew our inner strength, we need to have a future goal. He quoted Nietzsche’s words, “He who has a why to live for can bear with almost any how.” I found that “finding meaning” is a way to define the why. The act of looking for and finding meaning in Charles’s disease focused and empowered me.

Messages “From Beyond the Grave Are Changing How We Grieve”

Here’s an excerpt from a recent article on Vice:

“In 2014, Talbert was diagnosed with progressive supranuclear palsy, or PSP, a rare and fast-acting neurodegenerative disease… She soon began making preparations. She knew she wanted to leave her children and grandchildren recordings of her voice — when Talbert’s father died nearly 40 years ago, that was the thing she forgot first. … She found SafeBeyond about a year after being diagnosed. It’s one of a growing number of services, including DeadSocial and GoneNotGone, that allow people to posthumously send video, audio, and text-based messages to their loved ones at planned times.”

The article notes that many find such messages comforting while others feel like such messages are “an ambush.” (Note that the “DMs” in the title refers to “direct messages.”)

Here’s a link to the full article:

motherboard.vice.com/en_us/article/qv3qv3/beyond-the-grave-text-messaging-changing-how-we-grieve-death

Away Messages
DMs From Beyond the Grave Are Changing How We Grieve
by Michael Waters
Nov 28 2017, 7:00am

Robin

 

“Is It Alzheimer’s or Another Type of Dementia? How the Experts Make a Diagnosis”

This post may be of interest to those dealing with the non-Alzheimer’s dementias in our network — Lewy body dementia, progressive supranuclear palsy, and corticobasal degeneration. (PSP and CBD do not always present with dementia.) Lewy body dementia is specifically mentioned in this interview.

Being Patient (beingpatient.com) is an Alzheimer’s news website. In July 2017, the news organization interviewed Dr. Marwan Sabbagh of the Barrow Neurological Institute in Phoenix, AZ. In the interview, Dr. Sabbagh describes the challenge in making a dementia diagnosis. He describes some improvements that could be made in the standard practice of diagnosing dementia.

Dr. Sabbagh says: “Pathologically pure Alzheimer’s without any other pathology is quite rare. It’s only like 33 to 40 percent. Most Alzheimer’s is mixed with something else – hippocampal sclerosis, vascular change, argyrophilic grain [disease], or Lewy body. Pure disease of any type is quite uncommon. A lot of people have overlap but they look typically like Alzheimer’s dementia, so the clinical presentation and the pathological presentation don’t always align as much as you would think they would. … As a clinician, I ask ‘What’s the clinical syndrome and how do we go about teasing it out to make sure we have the correct diagnosis?’ … People are grossly misdiagnosed. Lewy body is not detected often. Most of the other dementias are completely missed.”

The video interview is just under 12 minutes. Excerpts from the interview are copied below. (The “transcript” doesn’t include all of the interview.)

Robin

===============================================

www.beingpatient.com/alzheimers-another-type-dementia-experts-make-diagnosis/

Is It Alzheimer’s or Another Type of Dementia? How the Experts Make a Diagnosis
Interview with Marwan Sabbagh, MD
Being Patient (beingpatient.com)
July 26, 2017

Although the National Institute of Health has published medical reports on guidelines to diagnose Alzheimer’s disease, it can sometimes take years for patients to get an accurate diagnosis from their primary care doctors. Expensive scans or lumbar puncture tests are one way to confirm the presence of beta amyloid plaques or tau tangles in the brain, but those aren’t an option for many patients due to their high cost. Being Patient asked Marwan Sabbagh, a leading researcher on the diagnosis of Alzheimer’s disease at the Barrow Neurological Institute about the best way to determine if a patient is suffering from mild cognitive impairment or dementia.

Being Patient: There’s a lot of confusion over how you get diagnosed for Alzheimer’s disease. Previously, we’ve been told that a PET (positron emission tomography) scan or a spinal tap are the only conclusive ways to figure out whether there are plaques and tangles in your brain. Why is there so much confusion over diagnosing dementia?

Marwan Sabbagh: The historical, medical practice in the United States has been to take a diagnosis of exclusion. You have a medical history, a neurological exam, cognitive impairment, historically, and then you get a MRI to exclude brain tumors, masses, hydrocephalus, or stroke. You get a thyroid [exam] to exclude thyroid problems, and you get a B12 level [test] to exclude deficiencies in B12. The problem has been a diagnosis of exclusion is a grossly inaccurate approach and the diagnostic accuracy, at best, is 75 percent.

Being Patient: What are some of the essential questions you need to ask and what are some of the essential things that primary care doctors should be looking at in order to determine whether or not this is Alzheimer’s dementia?

Marwan Sabbagh: I think doctors know how to do a mini-mental state exam – a MOCA, Montreal Cognitive Assessment. They know what to do but they don’t know what questions to ask on the front end, so I’ve been proposing a restructuring of the initial side of the consultation. There are structured interviews that are available now – the AD8, the AQ and the IQ code. These are caregiver informant-based interviews. Do they have this?Do they have that? Are they doing this? [These questions] inform the provider to say, “It’s time to look further.”

The second thing I propose is that we need to look at aggregate risk analysis. There are now ways to say that the probability of Alzheimer dementia is very high if you are age 85, have a family history, female gender, hypertension and diabetes. You can come up with a score that says the probability of Alzheimer dementia is very high.

Being Patient: I want to talk a little bit now about different types of dementia and diagnosis – a number of patients say they were misdiagnosed and a pathologist we spoke to said that, through autopsy, he found that the majority of cases in his practice are being misdiagnosed. How do you tell if it is Alzheimer’s or another type of dementia?

Marwan Sabbagh: Pathologically pure Alzheimer’s without any other pathology is quite rare. It’s only like 33 to 40 percent. Most Alzheimer’s is mixed with something else – hippocampal sclerosis, vascular change, argyrophilic grain (disease) or Lewy body. Pure disease of any type is quite uncommon. A lot of people have overlap but they look typically like Alzheimer’s dementia, so the clinical presentation and the pathological presentation don’t always align as much as you would think they would.

As a clinician, I ask “What’s the clinical syndrome and how do we go about teasing it out to make sure we have the correct diagnosis?” You are absolutely right. People are grossly misdiagnosed. Lewy body is not detected often. Most of the other dementias are completely missed.

Being Patient: Does it matter to the patient in the end in terms of how they’re dealing, and coping, and engaging in maybe lifestyle treatments or medication?

Marwan Sabbagh: It does. It matters a lot. The reason it matters is lifestyle modifications, which are probably very good for brain wellness and prevention strategies in the Alzheimer’s spectrum from pre-symptomatic to the full dementia probably do not have as much data to support the recommendations in other dementias. Flatly, I don’t think there’s any shred of evidence that lifestyle recommendations would help another dementia like Lewy Body or frontotemporal dementia.

Being Patient: Is there a difference in diagnosing early onset versus dementia as Alzheimer’s in an elderly patient?

Marwan Sabbagh: In the way I approach it, yes. Most commonly, if it were a young person, early onset, I would do a spinal tap as my CSF (cerebrospinal fluid) confirmation to confirm the diagnosis. I tend to be a little bit more aggressive and invasive in what I do to diagnose my patients. Older patients, I might get a PET scan and, if it’s approved, I might get neuropsychological testing. I might get an ApoE genotype.

Being Patient: So many people now are impacted by this disease, a lot who are the children of a parent or a grandparent, and they want to know what are the early signs that they should look out for?

Marwan Sabbagh: You never misplaced things, now you’re misplacing things from time to time. You’re telling something repeatedly and you never did that before. These are the kinds of very subtle, very beginning things that would say [it’s] time to get an evaluation. Especially if there’s a risk.

Being Patient: There are people who carry ApoE4, who have both one variant and are homozygous, and there are people who don’t, who end up getting Alzheimer’s. How much should that genetic profile enter into diagnosis?

Marwan Sabbagh: That’s controversial and I’m sure you’ve had different opinions from different doctors so I’m going to give you my perspective. I tend to be on the more progressive side of the discussion. In the clinical evaluation of my patients with mild cognitive impairment (MCI) due to Alzheimer’s or dementia due to Alzheimer’s, I frequently order an ApoE genotype. If they’re an ApoE4 carrier in the setting of MCI or dementia due to Alzheimer’s then the probability of Alzheimer’s pathology in the mix is very high.

I never order it for people who are asymptomatic, even if they have a family history. I agree with many in the field that it’s not inherently a diagnostic, it is simply a risk factor, but it’s a very rich risk factor because, if you are an ApoE4 carrier, the probability of having Alzheimer’s amyloid on your PET scan is very high. Some people are even proposing the idea of using it as a screening tool. Has this become common practice? The answer is absolutely no.

Being Patient: Once you give someone a diagnosis of Alzheimer’s dementia, do you believe the earlier you catch it the better off you are?

Marwan Sabbagh: I come from the school of thought that Alzheimer’s is a treatable disease. I am aggressive in treating my patients. I am proactive in addressing their healthcare needs, their family needs, their medication needs, their legal needs, and offering clinical trials as an added value to our clinical practice. Patients want that information. They’re seeking it. They’ve craving it. They want it from a credible source.