“You know,” she said to me, looking up from the papers she was filling out, “I’m the 4th generation in a family where the last 3 generations have gotten Alzheimer’s.” She was trying to sound casual, but there was a slight cloudiness in her voice. “Mom’s doctor told me there’s only a 50% chance that I’ll eventually get it, but in my family, it seems more like a sure thing. I’m probably doomed.”
I’m sure every family member of a person with Alzheimer’s thinks about it: what’s the chance they’ll have the same issues as their mom or dad with the disease? I’m not a doctor, and I can’t diagnose Alzheimer’s, but I can give you the numbers: children of those with the disease have about a 20% chance of inheriting it... while that number jumps to 50% of those whose parents had early-onset (diagnosed before age 65) dementia. Those are scary numbers.
Still, the question remains: are you doomed?
In my opinion, it’s all a matter of how you look at things. Alzheimer’s is a terrible disease that causes years of heartache to those with the diagnosis – as well as their family and friends. That being said, our approach to any disease is a choice that I often refer to as Privilege or Pain. We can decide how we want to look at things. Take, for example, the incredible work being done at www.ForMemory.org. This is a clear instance of people with Alzheimer’s who are refusing to let the disease define them for as long as possible. They are truly making a difference!
If you have a parent with Alzheimer’s, it is vital that you sit down with an attorney and make your wishes known for illness and end-of-life procedures (then again, take a look at Terry Schiavo... even if you don’t have a parent with the disease, you should make your wishes known... in writing!). You’ll want to talk to an Elder Law attorney to discuss your long-term care plans so that if you do get the disease, you’ll still have a choice about your care.
One of the most devastating results of this disease is when it creates an extreme financial burden and leaves the afflicted person out of money and out of options about their care. With good, advanced planning – legal, financial, medical, and nutritional - you can take charge of your life and prepare for the best. No matter what comes your way.
If you know you may have a predisposition to the disease, early detection is incredibly important. It’s in those early stages that the current medications work the best. Many early-onset patients make decisions in their own care and are actively opening many doors to make the disease more self-manageable.
Ultimately, with the road map you provide for your family and friends, even a diagnosis of Alzheimer’s can allow you to be empowered and to focus on your abilities - rather than disabilities. You can still find ways to enjoy the time you have together. They will accept the privilege of traveling this journey with you rather than feeling burdened with the tasks of care. Their anger and grief will be focused on the disease, and their love and concern will be focused on you.
People with Alzheimer’s disease still have so much to offer. It may not be astrophysics, but it’s the really important things in life. They may not necessarily inhabit the role they once did, but their life and liveliness is still there... in their ability to love, to appreciate, and to comfort even their caregivers. You can overcome the doom and fear with planning, prevention and privilege.
If you or a loved one is caring for someone with dementia, get a copy of our new report, A Guide to Alzheimer's Care, which includes more about my personal family experiences with Alzheimer’s and dementia and journey to Alzheimer’s and dementia planning, and sign up to attend our free online seminar: If the Diagnosis is Dementia: What It Means & What You Need To Know.
