COMING SOON!
(November, 2024)
The Book With the Answers
Enjoy this preview of the most up-to-date, complete, and fully-referenced guide to all aspects of a topic that will affect us all.
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What follows is an outline and many of the questions that are addressed in the book:
SYNOPSIS
Aging or Alzheimer’s? is evidence-based and fully- referenced.
In the least technical language possible, I summarize the current state of knowledge, assembled from reviewing more than 1200 sources. More impactful than all that reading has been observing my own failings and those of my fellow Baby Boomers. More insights come from sharing the trajectories of persons I have loved, and from being with thousands of my elderly patients and their families. To these observations, I add my clearly identified, quite personal, and sometimes humorous analyses and experiences. (All supported by 535 up-to-date scientific references, 57% of which were published in 2020 or later.)
CONTENT OVERVIEW
AGING
THE RIGHT AUTHOR – THE RIGHT SUBJECT – THE RIGHT TIME
THE EXPECTED EFFECTS OF AGING ON MEMORY
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Waning memory with age was noted as long ago as 700 B.C.
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Worldwide, one new case of dementia is diagnosed every three seconds. How can clinicians and researchers keep up? How can they keep us up to date?
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How do I know if I’m OK “for my age”?
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Making memories (and holding on to them)
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The various types of memory and their differing vulnerabilities to aging.
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So, what does “normal” even mean?
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What are “acceptable” or “typical” levels of age-related cognitive decline in healthy older adults?
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Memory “lapses” versus memory “loss”. Which of these is not considered a warning sign of dementia?
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THE DECLINE:
FROM “NORMAL” AGING to DEMENTIA
What are the differences between failing memory and cognitive decline?
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What are the implications of having one or the other?
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What is normal cognitive aging?
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Does everyone my age feel this way?
I do.
It was my own entirely subjective concerns that led to my research for this book: first to learn for myself, and then to educate my fellow Boomers and professional peers. If asked, up to 75% of us ≥ age 70 and older who score within the normal range on cognitive tests still worry. Even those of us with purely subjective concerns have up to a seven percent annual rate of progression to the next (and objectively verifiable) stage of cognitive decline.
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Some testing is off, but they say it’s “mild”.
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What if my test results are OK, but I know I’m not right?
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Is there an easy and well-established test to rule out or confirm Subjective Cognitive Decline?
In fact, there is one simple question, used in multiple studies by the US Centers for Disease Control and Prevention (CDC) and others to diagnose that early subjective stage of deterioration: a question that we can ask and answer ourselves.
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OK, so you have normal tests and a 7%annual risk of progression to the next stage:
Not everyone does worry, which is another big reason for the book.
According to The Alzheimer’s Association in 2021, more than 80% of Alzheimer’s will likely go undiagnosed. For many of us, that initial stage, called Mild Cognitive Impairment (MCI), is worth worrying about. Defined as a slight but measurable objective decline in scores on simple office-administered tests, MCI is recognized as the first phase of altered memory and cognition immediately preceding Alzheimer’s disease.
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What about the word that was right there, on the tip of your tongue, just a second ago?
Where did it go? Will it come back? What does it mean if it does (or especially if it doesn’t)?
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What psychological states and neuropsychiatric conditions can mimic cognitive decline?
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WHAT IS DEMENTIA?
What is a simple definition of dementia, and what are its three elements?
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Besides Alzheimer’s disease, what other forms of dementia are there?
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The Clinical Syndrome of Alzheimer’s Dementia is confirmed by the presence of a long-described series of progressive deteriorations in thinking, memory, and behavior. The seven distinct phases observed in the clinical evolution of the AD syndrome were described more than forty years ago and remain valid and useful today. Knowing where a loved one is positioned along a foreseeable trajectory facilitates planning for what is most likely to come, however intimidating.
WHAT ABOUT TESTING?
“Old School”
How about those timeless 1:1 paper, pencil, and questioner “neurocognitive” tests, like drawing a clock, repeating “no ifs, ands, or buts”, or remembering three words after five minutes?
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“Newer School” – Biomarkers:
The anatomical bases of AD have been known since Alois (Alzheimer) dissected Auguste (his patient) in 1906. “Biomarkers” (brain imaging and body-fluid testing) are the 21st Century’s definitive means of detecting the abnormal brain proteins that cause AD. It goes without saying that biomarkers can be way more useful to the patient than autopsy. However, contemplating biomarker testing does merit a thorough discussion.
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Clues to Cognitive Decline in Spontaneous Speech and Written Language
There are some easily observable changes in language that we can identify in ourselves and others. The presence of one or more should lower the threshold for seeing a doctor.
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“Hey Alexa, If You Hear Something . . . Say Something!”
Siri, Alexa, and their kind are listening, and working on early detection of cognitive decline.
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WHAT DETERMINES ONE’S RISK FOR DEVELOPING ALZHEIMER’S DISEASE?
What is risk?
A risk factor is anything (your environment, habits, acquired, or inherited) that increases a person’s chances of developing a disorder. Risk is established by applying the tools of epidemiology, “the study of how often diseases occur in different groups of people and why”.
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Genetics (One’s Family History) Contributes 70% of the Risk.
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Targeting Some Modifiable Risks Has Been Effective
The World Health Organization has taken the position that “Aging without dementia is achievable,“ and addressing potentially modifiable risk factors could slow or prevent AD.
In a 2020 report of the Commission on Dementia Prevention, Intervention, and Care (with 34 pages and 315 references), an interdisciplinary international group of 28 experts concluded that “modifying at least these 12 risk factors (Table 2 in the text) might prevent or delay up to 40% of dementias.” The twelve include lifestyle factors, medical conditions, and social/environmental factors associated with increased dementia risk.
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Your Individual Traits Can Inhibit Alzheimer’s disease Development
What can you bring to the fight against developing dementia? Individuals identified as having “Resilience” (which can be both inherited and modifiable) have avoided dementia despite extreme old age. One can acquire protection through “Cognitive Reserve”
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“WHAT ELSE COULD IT BE?”
Alzheimer’s, Other Dementias, or Not Dementia?
There are no good dementias. Not all dementia patients have Alzheimer’s disease. A victory is finding the treatable cause that only looks like dementia.
“Good thought! Maybe uncle Cleo is just sick or crazy!”
All other possible diagnoses should be carefully considered by an expert. Medical, behavioral, and psychiatric conditions can mimic dementia. Some causes on the “Better Than Alzheimer’s” list may be inherited, while others can have specific treatments or have far different prognoses.
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Hope For the Best, Plan For The Worst
One way to think of adjusting to signs of cognitive decline in yourself or a loved one is like the way one approaches any transition to being more on your own. Think the end of your senior year in high school or starting freshman year in college:
No more structure from notes on the fridge
The plusses and minuses of having a car and of driving
Adapting to work
Managing your finances
Unfamiliar persons and situations
Making new friends
The exact nature and timing of the changing needs of any one person with dementia are largely unpredictable. However, there is a lot one can study and prepare for (found in APPENDIX II).
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TREATMENT OF PATIENTS WITH ALZHEIMER’S DISEASE:
The Goal of Research Into Any Illness is:
“An Effective, Approved, Disease-Modifying Treatment.”
Alzheimer’s disease remains the only major cause of mortality without one.
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The currently available drugs for Alzheimer’s disease can be divided into the “latest and greatest“(since 2021) and those that have been around for up two decades. The heavily publicized recent “breakthrough treatments” are anti-amyloid monoclonal antibodies. They are easily identified by their $25,000+/year price tags and widely varying acceptance from the medical community.
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What Are the Predictable Outcomes From Currently Available, Established and Approved Alzheimer’s Therapies?
As research continues on the newest agents, the majority of new Alzheimer’s patients are still managed with the traditional therapies. Over decades, these drugs have been found to slow the clinical progression of mild-to-moderate AD; improve memory, attention, alertness, reason, apathy, language, global functioning, and the ability to perform simple tasks. The accumulation of destructive brain proteins is not affected.
Some behavioral and non-pharmacologic approaches for treating the symptoms of AD can improve function as well as, or better than, medication.
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What About Behavioral and Psychiatric Symptoms In Alzheimer’s Patients?
(Withdrawn? Acting Out? – Is there a pill for that?)
Think Twice! – Antipsychotic medications that might be considered to address such symptoms in others are specifically not approved by the FDA for use in elderly patients with dementia because of increased risks of stroke and death.
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What About Experimental Drugs? Are Clinical Trials for You?
You may hear differently from your doctor. Controversies abound. There is no question that research offers the best chance for improving understanding and discovering a cure for any illness. I encourage readers to consider participation in research and will do so myself. Given the poor historical success rate of experimental Alzheimer’s treatments (with no new drugs approved between 2003 and 2021), I see clinical trial participation as a gift with potential value to future generations, rather than as a likely benefit to oneself.
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What About Preventing Cognitive Decline and Dementia?
According to the two most recent and comprehensive government-sponsored reviews (totaling nearly 900 pages covering decades of research): The science is “encouraging but inconclusive”.
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What About Over-The-Counter Vitamins, Minerals, Antioxidants, Anti-Inflammatories, Herbal Remedies, And Supplements?
Certain dietary substances have scientific evidence in their favor and no evidence of harm attached to their use. I take some of those daily.
TO BE AVOIDED
Be Skeptical of the Positive Language Found in Ads and Product Labels
What are the flashing yellow lights on the road to verifiable information? What words should trigger your “Delete” reflex when cruising the web or scanning ads in magazines or emails? For example, the term “clinical” simply means that something is related to the practice of medicine. A “clinically proven” claim could refer to anything from a single case study to a large randomized controlled trial, to anything a patient says or a doctor claims to have observed.
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Dietary Supplements – What Everyone Needs to Know
It’s right there, BY LAW, on the label (in REALLY tiny print). “These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease.” When placebos are compared head-to-head with a new drug under study, sugar pills work just as well, on average, 35% of the time.
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Playing it safe in the supplement aisle
The risks of “Herbal” products
Homeopathic Medicines
Products banned by FDA are still being sold.
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Avoid the Lure of New or Unproven Therapies
There are a host of “non-validated treatments” out there, from personalized “metabolic enhancement”, to stem cells transforming hairs into neurons, to high-dose oxygen, “external brain stimulation”, and fecal transplants.
A DOCTOR’S GUIDE TO THE JOURNEY
My goal: To inform you by informing myself.
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How to manage day-to-day while preparing for tomorrow
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We All Have the Same Questions:
What can I do if my subjective decline and absent-mindedness get worse?
Are my problems mainly with failing memory or with cognition?
What is the biggest risk factor for developing Alzheimer’s disease?
What are my risk factors for progression?
When should I seek medical attention for my memory?
What are the warning signs?
What should I expect from my primary care provider?
What to expect from a memory specialist
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You may be the first to have concerns, but don’t jump to conclusions. For any set of symptoms, there are multiple causes. Many of the alternative diagnoses on the list are preferable to dementia. Many are treatable. All should be considered.
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What About Testing?
When should I get tested? What tests shall I take? What will the results mean?
Neurocognitive and/or genetic testing: Yes, or No?
Should I screen myself? It’s an option.
Biomarker testing is not just “another trip to the lab.” Ask yourself “How might positive results change my life (and the lives of those around me)?”
COPING
How can we cope with the memory failings associated with normal aging, even in the absence of a specific diagnosis?
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When to doubt the “Experts”
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Dealing With a “Likely Alzheimer’s” Diagnosis
How to talk to your family and provider
How do you tell someone you love about their diagnosis?
Telling loved ones about your own Alzheimer’s diagnosis
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Maximizing Outcomes After A Diagnosis Of Alzheimer’s Disease
(Either yours or a loved one’s)
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Minimizing the hazards that come with emergency room visits, hospitalizations, “Rehab”, or a nursing home.
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Start our own support groups!
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Genetic testing for the family?
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IDENTIFY AND AVOID UNRELIABLE SOURCES OF INFORMATION
Be Suspicious
In the setting of such a common and devastating disease “Hope Springs Eternal”, and it should. Unfortunately, when we need it the most, hope’s unwanted hangers-on also emerge:
Exploitation, Identity Theft, Avarice, And Fraud
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Be wary of the Key Words that so often appear in excited descriptions of early reports. These common adjectives dominate what I call “the vernacular of hope and disappointment.” The goal of their use seems to be falsely elevating our interpretation of new findings from demonstrating an association to wrongly implying causation.
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Beware of “look-alike” or “sound-alike” organizations or products.
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Read the whole story surrounding Prevagen® and other “Brain Supplements”.
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Avoid:
Wishful thinking
The placebo effect
Superstitious behavior
Testimonials-for-hire
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GETTING ON WITH LIFE AFTER DIAGNOSIS
Caring For Those With Dementia
Essential elements and available options
Medical and non-medical concerns
The “little things”
Anticipating progression and preventing foreseeable negative consequences
Ethical considerations and conflicting needs
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Caring for the Caretakers
Approximately 70% of patients with Alzheimer’s disease are cared for at home by a family member. They and other caregivers can be additional victims of all progressive dementias, with significant risks to their own physical and mental health.
DISPARITIES AND UNSETTLING STATISTICS FOR THOSE WITH DEMENTIA
How would you like to be treated?
Individuals with dementia are less likely to receive care comparable to that provided to those without dementia.
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Important Non-Medical Details
Legal Issues
Finances
Safety and Security
What if you have no one?
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End-Of-Life and Palliative Care:
Advanced Directives (“Living Wills”): Best practices and a recommended framework
“POLST”: Physician Orders for Life Sustaining Treatment)
ACTIVISM
Remember The 60s: Ageism is a Civil Rights Issue.
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Take Control! Assert Yourself! Challenge Assumptions!
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Don’t allow yourself to be patronized or stereotyped as The Aging Boomer, or addressed as “Honey”, “Sweetheart”,“Dear”, etc. (unless you want to be).
CONCLUSION: THERE IS HOPE
The massive numbers of scientists and clinicians attacking this problem worldwide have uncovered, in just the last few years, an abundance of promising new information.
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“Ultimately, there will be a future in which specific anti-Alzheimer’s therapy will be combined with lifestyle interventions targeting general brain health to jointly combat the disease.”55
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A Last Piece of Advice
If you are “of an age”, reading this, and feeling OK at the moment, do yourself a favor. Leave the keyboard and go be with your grandkids.
