A recently released report from the Alzheimer’s Association says that over the last five years, there’s been a 10 percent increase in the number of Americans living with Alzheimer’s disease, characterized mostly by non-reversible dementia that stresses families first emotionally and then financially. Among the many benefits to living longer through the fights against cancer, heart disease and other diseases, this is the down side.
Five million Americans are currently afflicted. With age the biggest risk factor, the imminent onslaught of the Baby Boomer generation into retirement age will increase the current statistics of 1 in 8 people 65 and older afflicted with the mind-destroying illness and 1 in 2 people older than 85. We expect 7.7 million to be afflicted by the year 2030.
By 2050, 16 million.
This announcement coincides with my mother’s news this morning that my uncle, institutionalized with Alzheimer’s for the last decade, is close to death after a 15-year battle. Finally, release for him and relief for her, as she was the primary caregiver after caring for my grandfather, also afflicted, for the 10 years before we detected my uncle’s onset.
As our nation debates health care costs, this is a train barreling down the tracks, and we need to pay attention. The financial costs are extraordinary. The report shows patient care paid by MediCare for dementia care is nearly three times for the average beneficiary – $13,207 per year vs. $4,454. The amount of money spent by MediCare on dementia-related care is expected to double by 2015.
Alzheimer’s is a cruel disease, as family members descend into a period of dysfunction as the subtlety of the symptoms of once-robust loved ones decrease. Family members either step up to the plate, or reveal their limitations by not doing so.
My grandmother’s lack of acceptance was as much of a challenge to our family’s ability to cope as the growing debilitation. And that’s one of the things Alzheimer’s families go through. At first, everyone is thrown off their game, as people have varying degrees of acknowledgement of the symptoms and their severity. It doesn’t help that the afflicted ones go in and out of lucidity at unpredictable times and intervals. Because of that, you never have a time of closure, a time when you can say goodbye.
My mother, who was the primary caregiver for them through these decades, is a walking encyclopedia of medications, treatments and therapies, MediCare and private insurance regulations and local supportive resources she found the hard way. She is on alert to her own symptoms in case there is a genetic predisposition, and exercises her brain with crossword puzzles and a variety of cultural stimuli.
It would be nice if she didn’t worry. Age, not genetics, is the primary risk factor, researchers have found. Also, Diabetes in mid-life has been linked to dementia decades later in life. This has implications for South County and Latinos, which have a high prevalence of Type 2 Diabetes.
Steps for prevention? Heart disease and diabetes prevention, such as eating a healthy diet and exercising regularly help. Controlling stress levels, too.
Fortunately, there’s been a growth in supportive resources that can help families navigate through this most confusing disease and all of the painful decisions that must be made as it progresses. South County is lucky to have a local branch of the Alzheimer’s Association. Gilroy resident Dale Thielges and a contingent of fabulous volunteers are available through a 24-hour help line. Conversations and written materials are also available in Spanish at 1-800-272-3900.
In the year preceding my uncle’s institutionalization, he allowed only me and my brother to enter his home and bring him food. I calmed his agitation while I shaved his face and assured him “that man who stole his razor” – or name that misplaced item – was gone and wouldn’t hurt him. I took him on outings to the park with my preschool children after cajoling him into the car.
Of all my partings when we left for Texas, the one from him was the most painful. He clearly didn’t understand I was his beloved niece across the street in suburban East San Jose; he thought I was a neighbor who owned “the dairy down the road.” I started to cry, and thanked him for helping raise me. Abashed, he tried to comfort me, saying “don’t worry; you’ll be fine. We’ll miss you and your cows.”
And to this day, I miss him.
Columnist Dina Campeau is a wife, mother of two teens and a resident of Morgan Hill. Her work for the last seven years has focused on affordable housing and homeless issues in Santa Clara County. Her column is published every Friday. Reach her at
dc******@*****er.net.
