Skip to content
  • About
  • Contact
  • Contribute
  • Book
  • Careers
  • Podcast
  • Recommended
  • Speaking
  • All
  • Physician
  • Practice
  • Policy
  • Finance
  • Conditions
  • .edu
  • Patient
  • Meds
  • Tech
  • Social
  • Video
    • All
    • Physician
    • Practice
    • Policy
    • Finance
    • Conditions
    • .edu
    • Patient
    • Meds
    • Tech
    • Social
    • Video
    • About
    • Contact
    • Contribute
    • Book
    • Careers
    • Podcast
    • Recommended
    • Speaking

Alzheimer’s dementia and a world in denial

Rod Tanchanco, MD
Conditions
July 12, 2016
Share
Tweet
Share

Ronald Reagan’s last letter to the American people, penned with his own hand in November, 1994, went directly to the point:

“My fellow Americans, I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer’s disease.”

In this deeply poignant moment, the former president explained that he decided to share his diagnosis “to promote greater awareness of this condition,” with the hope that doing so would “encourage a clear understanding of the individuals and families who are affected by it.”

More than twenty years later, it should be safe to assume that most adults are aware of what Alzheimer’s disease is. With more than five million affected Americans, it is not uncommon to have a family member or know of someone suffering from the disease. The numbers will only continue to grow as the population ages. It is estimated that in the U.S., people aged 65 and older will reach more than 88 million in 2050, 19 million of whom will be at least 85 years old. This amounts to about 20 percent of the population, with each one requiring one to four family members serving as caregivers. This trend is mirrored in other nations, and the elderly are now the fastest growing group in many countries.Not every old person will develop Alzheimer’s disease, of course, but the risk increases with advancing age.

With such an ominous outlook, the situation becomes more disturbing given research findings showing that Alzheimer’s disease remains an underdiagnosed condition. Alzheimer’s Disease International published a report in 2011 that estimated over 70 percent of people with dementia remained undiagnosed. A paper from Johns Hopkins published this month in the Journal of the American Geriatrics Society analyzed data on over 7000 older Americans and found that individuals who probably have dementia but have not been formally diagnosed are twice as likely to engage in potentially dangerous activities. These elderly folk are at risk from harm just by performing everyday tasks such as cooking, driving, or taking their medications. Delayed or missed diagnoses also means a delay in starting treatment, increased costs, as well as greater burdens on caregivers.

If Alzheimer’s disease is a rapidly worsening health crisis, why is it not being diagnosed earlier? There are, as it turns out, many reasons. Dr. Halima Amjad was the leader of the study from Johns Hopkins that looked into the increased risks in people with dementia but had not been formally diagnosed. I asked Dr. Amjad about the apparent reluctance in diagnosing dementia.

“The reluctance is multi-faceted,” she said.

“It occurs on many levels. The patient may not recognize the disease, or have poor insight and fear about the disease. They may also fear the loss of independence.”

She also said that the family may be in denial, or consider the changes to be part of normal aging. Physicians play a role as well. Perhaps doctors are reluctant, she speculated, because Alzheimer’s disease is a condition that cannot be cured. It is a difficult topic to discuss with patients and their families, and the physicians may not have enough time in a typical office visit to address the issue.

An article published in 2009 examined the factors that caused missed and delayed dementia diagnosis in primary care settings. The authors learned that physician, patient, and caregiver factors all contributed to the problem. Interestingly, one of the physician factors listed was the concern of the stigmatizing consequences of diagnosis. Physicians were also doubtful of the utility of early diagnosis, given the lack of effective treatments. The same report cites patient and caregiver attitudes as affecting diagnosis. It mentioned studies showing a lack of awareness about dementia, as well as patients and caregivers who deny or prefer not to be informed of the condition. Poor communication between physicians, patients, and caregivers, time constraints, and a lack of information about available resources also hamper timely diagnosis.

One of the more intriguing effects of rendering a diagnosis of dementia is the impact on a patient’s identity. Frances Bunn and her colleagues reported their findings in a 2012 article in PLoS Medicine. They found that there was a profound effect on a patient’s sense of identity, as if they were transforming into a different person. In a very real way, this is in fact what happens, and the inevitability of it all is overwhelming for both patient and family. The authors explained that “a desire to preserve a pre-dementia identity sometimes led to people being reluctant to disclose their diagnosis.” On a more positive tone, they also found data showing that patients and caregivers eventually came to accept the diagnosis.

When Reagan concluded his letter by writing the now famous, “I now begin the journey that will lead me into the sunset of my life,” he was acknowledging his own irreversible transformation; the same immutable affliction that more than five million Americans are experiencing today.

Margaret Thatcher, delivering the eulogy for Reagan, and herself suffering from Alzheimer’s disease, said of her friend, “For the final years of his life, Ronnie’s mind was clouded by illness. That cloud has now been lifted. He is himself again, more himself that at any time on this Earth …”

ADVERTISEMENT

The crux of our reluctance to accept this diagnosis stems from a human aversion to loss and change, witnessing loved ones suffer, or worse, knowing that loved ones will suffer because of us. It stems from uneasiness with long goodbyes.

While it’s true that there is no current cure for Alzheimer’s disease, early diagnosis can still provide tangible benefits. Early stages may still be amenable to pharmacologic treatment, if only to delay, albeit temporarily, progression of the disease. Other causes of memory loss, some possibly reversible, could be detected and treated. Learning about the disease early in its course will also allow patients and caregivers to better prepare for future needs, and more importantly, for the patient to still have a greater role in decision-making about his or her health care plans. This may in turn ultimately reduce the burden and suffering of the patient, as well the caregivers who are left behind.

Rod Tanchanco is an internal medicine physician and a writer. He blogs at rodtmd and can be reached on Twitter @rodtmd.

Image credit: Shutterstock.com

Prev

Why obstetric anesthesiology is the next frontier in medicine

July 12, 2016 Kevin 0
…
Next

The myth of when HIPAA gets waived

July 12, 2016 Kevin 6
…

Tagged as: Neurology

Post navigation

< Previous Post
Why obstetric anesthesiology is the next frontier in medicine
Next Post >
The myth of when HIPAA gets waived

ADVERTISEMENT

More by Rod Tanchanco, MD

  • Farmer Jesty’s bold experiment

    Rod Tanchanco, MD
  • Military tests of the Zika virus mosquito

    Rod Tanchanco, MD
  • a desk with keyboard and ipad with the kevinmd logo

    Exploding head syndrome: Is it really terrifying?

    Rod Tanchanco, MD

Related Posts

  • Dementia patients want effective drugs. How will the FDA respond?

    Ron Louie, MD
  • Who says doctors don’t care?

    Cindy Thompson
  • To Paxil, with love

    Jennifer L. Barkin, PhD
  • Qualifying conditions for medical marijuana

    Patricia Frye
  • Settlements in the opioid cases need these non-negotiable conditions

    Rosanne Aulino, RN
  • What does Kelly Loeffler’s health plan do to coverage for preexisting conditions?

    Robert Laszewski

More in Conditions

  • Facing terminal cancer as a doctor and mother

    Kelly Curtin-Hallinan, DO
  • Why doctors must stop ignoring unintentional weight loss in patients with obesity

    Samantha Malley, FNP-C
  • Why hospitals are quietly capping top doctors’ pay

    Dennis Hursh, Esq
  • Why point-of-care ultrasound belongs in emergency department triage

    Resa E. Lewiss, MD and Courtney M. Smalley, MD
  • Why PSA levels alone shouldn’t define your prostate cancer risk

    Martina Ambardjieva, MD, PhD
  • Reframing chronic pain and dignity: What a pain clinic teaches us about MAiD and chronic suffering

    Olumuyiwa Bamgbade, MD
  • Most Popular

  • Past Week

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • America’s ER crisis: Why the system is collapsing from within

      Kristen Cline, BSN, RN | Conditions
    • Why timing, not surgery, determines patient survival

      Michael Karch, MD | Conditions
    • How early meetings and after-hours events penalize physician-mothers

      Samira Jeimy, MD, PhD and Menaka Pai, MD | Physician
  • Past 6 Months

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • Why are medical students turning away from primary care? [PODCAST]

      The Podcast by KevinMD | Podcast
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • Why “do no harm” might be harming modern medicine

      Sabooh S. Mubbashar, MD | Physician
    • The hidden health risks in the One Big Beautiful Bill Act

      Trevor Lyford, MPH | Policy
  • Recent Posts

    • Beyond burnout: Understanding the triangle of exhaustion [PODCAST]

      The Podcast by KevinMD | Podcast
    • Facing terminal cancer as a doctor and mother

      Kelly Curtin-Hallinan, DO | Conditions
    • Online eye exams spark legal battle over health care access

      Joshua Windham, JD and Daryl James | Policy
    • FDA delays could end vital treatment for rare disease patients

      G. van Londen, MD | Meds
    • Pharmacists are key to expanding Medicaid access to digital therapeutics

      Amanda Matter | Meds
    • Why ADHD in women requires a new approach [PODCAST]

      The Podcast by KevinMD | Podcast

Subscribe to KevinMD and never miss a story!

Get free updates delivered free to your inbox.


Find jobs at
Careers by KevinMD.com

Search thousands of physician, PA, NP, and CRNA jobs now.

Learn more

View 2 Comments >

Founded in 2004 by Kevin Pho, MD, KevinMD.com is the web’s leading platform where physicians, advanced practitioners, nurses, medical students, and patients share their insight and tell their stories.

Social

  • Like on Facebook
  • Follow on Twitter
  • Connect on Linkedin
  • Subscribe on Youtube
  • Instagram

ADVERTISEMENT

  • Most Popular

  • Past Week

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • America’s ER crisis: Why the system is collapsing from within

      Kristen Cline, BSN, RN | Conditions
    • Why timing, not surgery, determines patient survival

      Michael Karch, MD | Conditions
    • How early meetings and after-hours events penalize physician-mothers

      Samira Jeimy, MD, PhD and Menaka Pai, MD | Physician
  • Past 6 Months

    • Forced voicemail and diagnosis codes are endangering patient access to medications

      Arthur Lazarus, MD, MBA | Meds
    • How President Biden’s cognitive health shapes political and legal trust

      Muhamad Aly Rifai, MD | Conditions
    • Why are medical students turning away from primary care? [PODCAST]

      The Podcast by KevinMD | Podcast
    • The One Big Beautiful Bill and the fragile heart of rural health care

      Holland Haynie, MD | Policy
    • Why “do no harm” might be harming modern medicine

      Sabooh S. Mubbashar, MD | Physician
    • The hidden health risks in the One Big Beautiful Bill Act

      Trevor Lyford, MPH | Policy
  • Recent Posts

    • Beyond burnout: Understanding the triangle of exhaustion [PODCAST]

      The Podcast by KevinMD | Podcast
    • Facing terminal cancer as a doctor and mother

      Kelly Curtin-Hallinan, DO | Conditions
    • Online eye exams spark legal battle over health care access

      Joshua Windham, JD and Daryl James | Policy
    • FDA delays could end vital treatment for rare disease patients

      G. van Londen, MD | Meds
    • Pharmacists are key to expanding Medicaid access to digital therapeutics

      Amanda Matter | Meds
    • Why ADHD in women requires a new approach [PODCAST]

      The Podcast by KevinMD | Podcast

MedPage Today Professional

An Everyday Health Property Medpage Today
  • Terms of Use | Disclaimer
  • Privacy Policy
  • DMCA Policy
All Content © KevinMD, LLC
Site by Outthink Group

Alzheimer’s dementia and a world in denial
2 comments

Comments are moderated before they are published. Please read the comment policy.

Loading Comments...