Sometimes when I need a break from my personal feelings, experiences, and thoughts I turn to processes and facts. As a result, this is Part 3 of my very unplanned three part series of “Things Your Mother Never Told You About Dementia”. Or “Deep (Moderate) Dive Into Dementia”. Or, “Dementia: Facts From the Internet Mixed With My Observations”. Your choice.
No matter what my 15 year old self thought, sixty-five is NOT old. In fact, many of us Baby Boomers (born 1946-1964) And Generation Xers (born 1965-1976) are nowhere near ready to retire and are definitely an integral and valued part of the workforce. Maybe you’re finally able to pursue the type of work YOU want to do or you’re interested in exploring other opportunities to begin your next chapter of life. Either way, we’re far from ready to call it a day. However, what if you are diagnosed with early onset Alzheimer’s or any other terminal disease? According to the Mayo Clinic's page on early onset Alzheimer's, “of all the people who have Alzheimer's disease, about 5 percent develop symptoms before age 65. So, if 4 million Americans have Alzheimer's, at least 200,000 people have the early-onset form of the disease”. In addition, “most people with early-onset Alzheimer’s develop symptoms of the disease in their 40s and 50s”. A diagnosis at any age is terrible, but for it to start at an age where you’re just hitting your stride is, in my imagination, devastating.
In just thinking about it, I can’t begin to imagine what that would be like knowing there is no cure and no hope for remission. It would simply and horribly be a new reality filled with care plans, specialists, and dread for what is to come, especially since I’ve seen it first hand. I’m not saying that everything joyful would come to an end, far from it. In fact, I’ve found that when faced with a future I didn’t plan I tend to appreciate the moments of calm and happiness a little more. Even so, I’m guessing that what is to come would always be in the back of my mind.
If you are younger than 65 and are having some symptoms that you and your family find worrisome and dementia is the cause, it could easily be years before you get the correct diagnosis. Most health care providers don’t necessarily look for dementia in someone that young; in addition, dementia isn’t easy to diagnose, especially when it is most likely far down on the list of possible issues, syndromes, or diseases. As I’ve written in a previous blog post, the early signs of dementia could easily be mistaken for symptoms of depression, stress, menopause, or anxiety all of which are fairly common in those of us in middle-age.
Let’s say, for instance, Tom is 55, employed, and is diagnosed with early onset dementia. If he has worked a certain amount of time and has paid social security taxes then he would be eligible for Social Security Disability Insurance benefits, or SSDI. But it’s not that easy. At 55, Tom may still have minor children at home, a mortgage, and all the costs that come along with middle age. If he is unable to work and he and his wife are relying on a second income, or he is the main income earner and he and his family are insured through his employer, day to day life has the potential to get very stressful and very expensive very fast.
Usually, to collect SSDI, a person must wait five months after the determination of disability before collecting benefits in the sixth month. This is to ensure that it is indeed a long term disability rather than a short term one. However, there is a list of disabilities, including early onset Alzheimer’s, that qualify for expedited consideration which is called a "Compassionate Allowance", meaning approval can be as early as ten days. In reality the process can still take months; many times these patient’s applications are initially denied benefits but then approved on appeal. It’s not an easy process to begin with and added to the stress of a life-changing diagnosis it can make the hurdle seem insurmountable unless you know where to ask for help. It’s understandable how people can fall through the cracks and never complete or even start the process to begin with.
A quick explanation of SSDI along with a checklist to make sure you have what you need to apply for SSDI can be found at The Alzheimer's Association's website. Included in the checklist are links to specific pages within Social Security’s website including this one on applying for disability along with online forms and links to your local Social Security office.
After a diagnosis there are a few other things to look into in addition to SSDI; there may be some kind of employer sponsored disability insurance available, the Family and Medical Leave Act (FMLA) could provide up to twelve weeks unpaid leave with continued medical insurance coverage, COBRA, Medicare (available for those with early onset Alzheimer’s under the age of 65 who have received SSDI benefits for 24 months), and retirement benefits (consult a certified financial planner to ensure you don’t take bigger tax hit than necessary). I’ll leave it at that since I am nowhere near an expert but would be remiss if I didn’t at least mention additional options.
I hope that none of us is ever faced with this or any other terminal disease but the odds are against that. We are our own best advocates; remember to take care of yourself and never stop learning, asking questions, and treating yourself as well as you treat those you love. Your health and your presence is the best gift you can give them.