The numbers are astounding!

Every three seconds someone in the world is diagnosed with dementia. Nearly 50 million people worldwide have dementia and this number is projected to be 75 million in just ten years!

Dementia is a huge problem for those family members assisting, and directly impacts financial service companies, healthcare providers and anyone in the “value chain” of the victim. Not only is there an alarming dearth of activity that can be done for those affected by dementia, but organizations, businesses, neighborhoods, communities, cities, states and regions either have little knowledge and little interest in how this epidemic can ultimately impact them.

I offered to speak to a local Chamber of Commerce about these issues. The person who decides on the speakers said that this topic does not affect their members! And, a gated community recently protested a homeowner as a “nuisance” who was caring for demented individuals, claiming this would likely drive home values down.

It is bad enough for the “AARP Bulletin” to run a cover story in their January/-February 2020 edition emphasizing the need to end the last acceptable bias in the workforce (ageism) and published a report (and summary by Joe Kita) at https://www.aarp.org/work/working-at-50-plus/info-2019/age-discrimination-in-america.html. An even more damning report was issued last year by the EEOC (Equal Employment Opportunity Commission) that underscores the extent of the problem https://www.eeoc.gov/eeoc/history/adea50th/report.cfm.

So, everyone gets older, if we are lucky. But one “strike” against you is your age and the 2^nd “strike” is coming down with the early signs of a debilitating and chronic illness such as dementia. The 3^rd “strike” against you can range from dying poor, alone and on the streets, being unable to work, earn an income, participate in social networks, having healthcare and enjoying the dignity of a job.

I know because I struggle against all three. Two years ago, after recuperating from a fall down some stairs, I asked my doctors to write a letter to our Head of Human Resources requesting leniency in turnaround time for me for documents I was reviewing. My employer said I could take a pay cut of 50%, even though I paid out of pocket for uncovered therapies and less money made no sense) and reduce my load of a handful of fewer students, but the turnaround times would still stand.

I was never informed of filing for disability (that I paid for separately from our healthcare provider) or workman’s compensation and was let go ten weeks later along with five of my “older” colleagues. I had been diagnosed with a TBI (Traumatic Brain Injury); I was still on track to set performance records that have not been seen either before, or after. Such is life in “At Will” states like Arizona.

Think of the impact on your career, family and friends if a member of your family is suddenly diagnosed with dementia. You become a full-time caregiver (truly, as anyone who has done it will say, caregiving is the hardest job you will ever do with little to no compensation). The irony of caring for a loved one while you are employed is clear. Your employment to pay bills may suffer, or you are terminated while caring for a loved one. Then there is the more capacious impact on the community or society, consequences that may be unintended, or not.

In future blogs, I will cover the caregiver crisis around the world through a series of writings. In our book, “Confronting Alzheimer’s and Other Dementias: An Evidenced-based Holistic Guide” (now, available for $9.99 as an eBook) from https://www.amazon.com/dp/B08376T9M4  where we discuss the cost of caregiving and cite the most recent (over 10 years old) study by MetLife https://www.caregiving.org/wp-content/uploads/2011/06/mmi-caregiving-costs-working-caregivers.pdf . There has been little research in the area since.

I close out this blog post from the Executive Summary of the MetLife Report on caregiving.

Nearly 10 million adult children over the age of 50 care for their aging parents.

These family caregivers are themselves aging as well as providing care at a time

when they also need to be planning and saving for their own retirement. The

MetLife Study of “Caregiving Costs to Working Caregivers: Double Jeopardy for

Baby Boomers Caring for Their Parents” was produced by the MetLife Mature

Market Institute in partnership with the National Alliance for Caregiving and

the Center for Long Term Care Research and Policy at New York Medical College.

The study analyzes data from the 2008 panel of the National Health and

Retirement Study (HRS) combined with estimates to determine the extent to

which older adult children provide care to their parents, the roles gender and

work play in that caregiving, and the potential cost to the caregiver in lost

wages and future retirement income as a result of their support (p 2, MetLife 2011).

This was an important study and will have many additional ramifications through the years.

I met Linda, my friend of nearly 40 years and we drove together to attend the farewell gathering for her husband, Bill, at Banner Alzheimer’s Research Institute in Sun City, Arizona. At Bill’s farewell, Dr. Marwan Sabbagh spoke about the Banner Mission and the legacy that Bill was leaving. Afterwards, I spoke to Dr. Sabbagh about the emerging science of epigenetics and who on the Banner staff might be the “expert.” He said, Paul Coleman.

My first meeting with Paul Coleman in 2012 was over lunch at a Chinese restaurant in Glendale, Arizona. We chatted for nearly 2 hours about epigenetics, sailing, politics, Alzheimer’s and our backgrounds. Paul was a senior scientist at Banner Alzheimer’s Research Center. I was a Dissertation Director for an online doctoral program. We both have our PhD’s.

I realized that knowing Paul and his lifetime of research into Alzheimer’s and dementia was an honor. He had been publishing on Alzheimer’s for more than 50 years and was considered one of the leading researchers in the world. All I knew about Alzheimer’s was that my aunt had it and that it was reaching epidemic proportions in the US. I wanted to know more, much more.

Paul and I broke bread several more times and he mentioned a business opportunity where he had an early Alzheimer’s detection blood test. At the time, I was researching potential “prevention” interventions such as changing one’s lifestyle. It seemed to make good overall “sense” to be as healthy as you can be and to know if you had a predilection for getting Alzheimer’s.

For context, my heart attack years earlier led me to become influenced by Dr. Dean Ornish’s research on reversing heart disease through changing one’s lifestyle. I thought we might be able to do the same with Alzheimer’s and other forms of dementia. I wanted to conduct a randomized controlled trial https://www.medicinenet.com/script/main/art.asp?articlekey=39532 to test our hypotheses.

Together, we two scientists would try and detect early and then determine a series of non-invasive interventions that might slow down cognitive decline. Our discussions led us to start a business called Epigenesis.

I wrote a proposal to conduct a very large study with Banner and through my employer at the time and seek research funding. We would need Banner’s permission to move forward and try and attract funding. But our timing was premature. We met with the new CEO about our approach; he mentioned the FINGER Study https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(15)60461-5/fulltext which was a truncated version of our proposal. His response was to call our study a “kitchen sink” approach with multiple arms (aka independent variables) and did not say much more. We met with his neuroscientific researcher and afterward, the CEO asked one of our medical docs if any of us had any research experience. Obviously, we had failed to convince the CEO and his research scientist of our expertise, skills and education.

That was a shame, because a few years later, a similar research proposal from several different researchers with the US Alzheimer’s Association resulted in funding the current POINTER Study https://alz.org/us-pointer/overview.asp which was nearly identical to what we had proposed a 4 years earlier. That is when I learned about the national “politics” at work in science on ending the worst disease with no cure and no valid and reliable interventions.

I learned that even though Harry Johns, the CEO of the US Alzheimer’s Association had stated https://www.alz.org/documents/national/submitted-testimony-050113.pdf before the Subcommittee on Labor, Health and Human Services, Education and Related Agencies Committee on Appropriations in the United States House of Representatives on March 13, 2013, that due to the projected increases in numbers of people with Alzheimer’s, along with the increased costs and no way to slow it down or reverse it “…the graying of America threatens the bankrupting of America.” And, that “Caring for people with Alzheimer’s will cost all payers-Medicare, Medicaid, individuals, private insurance and HMO’s–$20 trillion over the next 40 years.” Alzheimer’s makes treating other diseases more expensive because most Alzheimer’s sufferers have one or more co-morbidity’s that complicate the management of Alzheimer’s and hence increased costs.

Then, there is the cost and stress with the families and caregivers. There currently is very little for them by way of help or support, save for folks like us. Someone once said to me that if you were fortunate to reach the age of 85, you likely would have Alzheimer’s or be a caregiver for someone with the disease.

This blog and our new book https://www.amazon.com/dp/B08376T9M4 begin to explore this enormous problem. We are not paid, nor working for a corporation, do not have a grant or being subsidized by a university or NGO. We have, in truth, exhausted our own resources over the past seven years to finally bring this evidenced-based research to the public. We are advocating for a national conversation where ALL stakeholders can participate. And that must begin NOW.

• Dementia and the nature of the problem, growth rates, statistics and other dementias;
• Current efforts to mitigate cognitive decline; BEEMS and the failures, actual or predicted by other approaches;
• The POINTER Study;
• Caregiving (a series of those issues);
• Communication;
• Doctor and nursing shortages;
• Lack of knowledge between doc specialties, aka, silos;
• Knowledge in graduate program;
• Healthcare costs, cost of long-term care;
• Nursing homes, extended care for individuals;
• Traumatic brain injury, CTE and dementia;
• The economic impacts at several levels, family, community, state, nation, globe;
• Organizational impact, corporate wellness programs
• Public policy at all levels;
• The politics of research;
• The dearth of knowledge publicly available, especially published research;
• Dementia friendly communities;
• Dementia friendly companies;
• Human resource policies that can either support dementia friendly workplaces;
• Book reviews of other books on dementia;
• Organizations doing research on dementia;
• Professional coaches, skills, certifications, qualifications;
• Organizations that can help answer dementia-related questions;
• “Who’s Who” in research, a brief bio, links to their research, their affiliations;

Dementia: 1st Incident:

Dementia: Additional Incidents:

1. She no longer had a logical system for putting things where they could be found by others and,
2. She couldn’t remember where she had put things herself

• Medical and Financial papers went into a big red folder that everyone could find, whether Mom, family, or caregivers.
• Medical equipment was placed on one side of her bed so it could always be found at a moment’s notice

Dementia: Facing Realities

• The house needed to be cleared, sold and what was left needed to be transferred to the assisted living facility
• Books and Art needed evaluation and sorting to be sold or gifted
• Heirloom furniture needed to be shipped to appropriate siblings
• I needed to find a new residence other than the back cottage I had been staying in, but still close enough to visit regularly

Dementia: Cognitive Decline