Young Onset Alzheimer’s Disease (and let’s go ahead and include its nasty cousin Frontotemporal Dementia) is the atom bomb of devastating illnesses. Here’s why:
- It is insidious. Long before it is diagnosed in someone usually 40-60 years old, it has already contributed to marital problems, financial issues, depression, and substance abuse.
- It is severe. Once it is diagnosed, it removes one parent from the role of caregiver and provider, completely and permanently.
- It is hopeless- no chemotherapy, no radiation, no surgery. Cancer can be devastating too, but cancer and other diseases have more research dollars, more treatment options, more support, and more definitive timelines. There is no cure for FTD.
- It is under-resourced- Alzheimer’s Disease in people over 65 is also under-resourced compared to other, more popular degenerative or chronic diseases, but for the young, productive victims stricken in the prime of life, there is no practical assistance.
- It is every bit a crime against children- the disease process eradicates the family unit, causes roles to be reversed, and robs children of a primary parent. There are even fewer resources available for children living with a parent with YOAD.
- It is financially draining- Lots of diseases are. After a loss of employment, a fortune spent in diagnosis, a fortune lost in missed work, denial of insurance claims, costs of caregivers for the patient and the children, and home modifications, the remaining assets are spent down and retirement funds liquified to pay for long term care, which will be a certainty along the journey.
- It is a grieving process without closure. The remaining spouse can spend 15 to 20 years as a pseudo-widow.
YOAD is not going away. It is a disease that researchers can define only in terms of where the brain damage occurs and what kinds of protein are cluttering up the white matter. The only risk factor is having a family member with Alzheimer’s, and millions of people do.
So what can we do to lessen the impact of the disease or eradicate it all together?
- Advocate to law makers to commit research dollars to finding a treatment and a cure.
- Support families you know at the local level.
- Talk about it. Raise awareness and help de-stigmatize the label.
- Help the kids. Secure their futures.
- Raise money… a 5k, a bake sale, a donation campaign…. families need financial help.
Thought I’d share this video from HBO’s The Alzheimer’s Project. Although this family carries the gene for EOAD, many cases have no known genetic predisposition.