I applaud the Herald on its inclusion of the series of articles on dementia by Vicki Finch.
Currently, it is estimated that there are approximately 5.9 million cases of Alzheimer’s dementia in the United States (Alzheimer’s Association, 2018). Over the past few decades there appears to have been a percentage decline in general dementia cases, with the exception of Alzheimer’s disease. It is estimated, as folks live longer, that by the year 2050 the total number of Alzheimer’s dementia incidents will more than double to approximately 13.8 million (American Speech-Language-Hearing Association [ASHSA]: Hebert, et. al., 2013). Unfortunately, current with this seeming decline in the percentage of most kinds of dementia cases “the incidence of neurodegenerative diseases such as Parkinsons…early onset Alzheimer’s [etc.]…is going up (ALZFORUM, April 2018: Rocca, Mayo Clinic, March 2018).”
While dementia health costs were estimated to be $277 billion for 2018, $60 billion of the total costs is out-of-pocket expense. There is no accounting for unreported expenses for purchases made to accommodate the patient or to rearrange the home of the patient or care giver. In addition, the Alzheimer’s Association reports that more than 16 million people provide unpaid care for dementia patients at the rate of 18.5 billion hours and at an estimated cost of $234 billion. Today “one in three seniors dies with” a dementia. “Twice as many care givers of patients with dementia” as opposed to those who provide care for other reasons “indicate substantial emotional, financial, and physical difficulties (Alzheimer’s 2019 Annual Report on Facts and Figures).”
As indicated the seriousness of dementia takes its toll on both the patient and care giver. Although dementia is a sad completion to a productive and gratifying life there are still many opportunities to continue to enjoy living. It is just that almost daily change is eminent and decline is certain.
My wife, a special education teacher of 30 years, an outstanding soloist, a youth camp counselor, long time Sunday School teacher, and women’s motivational speaker, spent the last few years of her life dealing with Alzheimer’s disease. She continued to live in her home and in addition to normal household duties I learned to do her makeup, and fix her hair. Even to the very near the end she was conscious of her appearance and some the bumps in the curve on my road to learning how to do these more “girly” things for her were quite funny and we learned to laugh more. When she was unable to carry on more highly organized conversation, we relied on the non-verbal communication we had developed over 51 years of marriage.
We still went to church, took drives in the countryside, and grocery shopped together. I learned to push a full grocery cart with one hand and her wheel chair with the other. Folks would laugh and so did we. A people person and teacher, she wanted me to stop so she could get the attention of “small fry” along the way and both she and they seemed to really enjoy the experience. We would often laugh as when we got to the checkout lane her new found small friends would guide their Moms to our aisle or the one beside us so they could continue their interaction with her. The Moms appeared amused as well.
Rather than structure each circumstance we learned to “go with the flow” and this seemed to provide a greater number of pleasurable times and we made some outstanding memories. She always enjoyed the coming of home health care providers and later hospice personnel. She looked forward to the coming of Barbara Lancaster and her sister-in-law, Diane Bain, to do her nails and give her a pedicure. I never did learn to do this. Maybe it was just too much astray from being more manly. Without these folks it would have been hard, not that it was not still a challenging experience, so I was most appreciative when folks tried to make things a little more pleasant during those times. Being in her own home seemed to promote much greater satisfaction and a longer period of competency and she went to the eternal home for which she had begun preparing as an eight-year-old from her own living room still smiling to the very end…or rather the beginning.
Thank you, Vicki. Even though I am no longer a caregiver, I really enjoyed your article today. Were it not for folks like you our journey would have been far more difficult.
Milton Fields, Ph.D.
See complete story in the Pickens County Herald.