There was a recent op-ed contribution published in the Delaware County Times that discussed Alzheimer’s Disease and that June is Alzheimer’s Brain Awareness Month across the US. June 21st, the longest day of the year, is highlighted as a day to honor caregivers and their families who often spend considerable time and effort caring for their loved ones with the disease.
My own story on Alzheimer’s Disease (AD) began with two car crashes in 2013 when my wife had lost the ability to manager a car through the complex visual environment of local roadways. She totaled two cars within just a few months and a series of tests and evaluations eliminated all other disease conditions except one, Alzheimer’s disease. She was 55 years old.
Patients with the disease at this young age are classified differently as having Early- or Young-Onset Alzheimer’s Disease (EOAD) and they are estimated to make up only about 5% of all AD patients. Needless to say this was a shock and required a complete rethinking of our lives together.
For the past four years, I have been essentially her only caregiver. We moved closer to work (though I ended up having to retire), organized our legal and financial matters, and I began the long process of learning how to take on the increasing demands and helping her to cope with the continual changes brought on by the disease. Though I adapted pretty well for a time, most recently, I found it necessary to place her into a special form of assisted living dedicated to dementia care, often late stage dementia where the caregiver becomes overwhelmed by the needs of their loved one.
Following her placement, I began a course of study to learn more about the disease and especially the ending stages of the disease, and I recently conducted some limited research into the impact being felt by Delaware County in caring for individuals with this disease.
My analysis began with researching the estimated number of individuals in Pennsylvania and continued with statistical inference to Delaware County. For consistency, all of the data is based in the year 2014. Unfortunately, the numbers and even the rates of acquiring the disease have only risen since then. The Center for Disease Controls shows AD as the only one of six major diseases that is growing in the rate of acquisition. Even worse, the personal and economic impact of this disease is only just now being felt across the nation and in Pennsylvania.
The State of Pennsylvania includes data on the impact of Alzheimer’s and Related Diseases (ADRD) in its statewide estimate in their ADRD State plan, developed in 2014. Census data is also readily available for the state and county through a simple Internet search and my analysis is based on US Census Bureau information for 2014.
Pennsylvania estimates that about 2% of the population has Alzheimer’s Disease and an additional roughly 1% have a similar or related disorder. This means that Pennsylvania has an estimated 280,000 residents with AD and an additional 120,000 with a related disorder. The Alzheimer’s Association has estimated that there are over 600,000 caregivers in Pennsylvania, yielding a rate of over 1.5 caregivers for each patient. These caregivers are mostly unpaid and often working and/or caring for families of their own. Further, this disease and its caregiving burden falls mainly on women, and african americans and hispanics have a greater likelihood of acquiring the disease, as well.
Based on the census population of Delaware County, and applying these rates accordingly, there are over 12,000 AD patients and over 5,000 with related disorders in the County. There are over 26,000 caregivers supporting these Alzheimer’s patients. One a sad note, it is estimated that there were over 150 deaths from Alzheimer’s in 2014.
Because of my own situation with Early Onset Alzheimer’s, I wanted to take this analysis one step further, and again, using published data that show that there are roughly 5% of AD patients with Early or Young Onset AD, it can be estimated that there are over 600 individuals and over 900 caregivers helping these individuals just here in Delaware County.
Unfortunately, these EOAD families often do not meet the criteria (age or income) to take advantage of Medicare or Medicaid benefits. The financial burden on hardworking families can be truly devastating when prime-earners (patients or caregivers) are taken out of action or severely diminished in their contribution to the family finances. Social Security Disability Insurance (SSDI) is available when the patient has met the work requirements, though that requirement is often a challenge for homemakers.
If you have a brain, you can get Alzheimer’s. The month of June is Alzheimer’s Brain Awareness Month and I hope you will pay attention to news reports on how to take care of your body as well as your brain. If you have a heart, however, you can make a huge difference in the life of all caregivers by offering support, by recognizing their efforts, by making contributions to help fight the disease and educate about the disease, and by joining us on the Longest Day or at upcoming walks in Philadelphia and Wilmington.
There’s no cure for this terrible disease, and those of us who have cared for loved ones living with the disease hope that there will never be another new patient. Until then, I hope you will help by sharing this message and supporting our efforts on brain health and recognizing caregivers.