JOAN’S WEEKEND BLOG – MAY 17/18, 2008- EARLY ONSET ALZHEIMER’S DISEASE (EOAD) – THE SILENT DISEASE – RAISING AWARENESS – DC Forum II

Mention “Alzheimer’s Disease”, and the picture that comes to the mind of most people is that of a frail, elderly  (75 years old+) grandfather/grandmother who is forgetting the names of their adult children and young grandchildren. No one who has not been a caregiver to a loved one with AD has the remotest inkling of the rest of it – the confusion, loss of comprehension, loss of self, rages, tantrums, personality change, incontinence, dismantling of the marital relationship, and the HUGE financial burden of providing care.

Now, if you think Alzheimer’s Disease in the elderly is misunderstood and underfunded, try talking about Early Onset Alzheimer’s Disease, which is defined as Alzheimer’s Disease under the age of 65. Unfortunately, as we have seen and heard on this website and the few stories that our readers and others have been generous enough to share with the media, Early Onset is striking those under 50 at alarming rates.

EOAD strikes in the prime of life – when the man or woman affected is at the top of their earning potential, in the midst of raising children, at the height of their sexuality, immersed in the joys, sorrows, plans for the future, and loving give and take of marriage.

Because no one is looking for Alzheimer’s Disease in someone 35-50, you often find the marriage deteriorating due to the abrupt, startling personality change of the affected spouse. You may find the family disintegrating due to the effects of the personality change and household stress on the children. When you finally decide that whatever is wrong needs the attention of the medical field, you end up in an unending maze of conflicting and contradictory diagnoses, wrong medications, and total frustration, because the doctors are not considering Alzheimer’s Disease in someone so young. Tony, our Message Board writer and DC delegate, whose young wife is a victim of EOAD, said that he was actually relieved when he was given a definitive diagnosis. At least he knew what he was dealing with, which was better than running into brick walls with no answers.

Besides the emotional toll EOAD takes on the children and spouses, the financial burden is enormous. If the affected spouse (male or female) is the primary financial provider, there is the loss of income and health insurancethat was tied to the job . If the person affected is providing a secondary income to the household, they are probably working because the money is NEEDED. Losing it presents another hardship. These younger AD patients fall through the cracks for almost every government assistance program because they are too young. Too young for Social Security; too young for Medicare; still have too much income for Medicaid. If they have worked enough, they may be eligible for Social Security Disability, but in the case of Tony’s wife, she became an “at home Mom” before she accumulated enough quarters for Social Security, so she is ineligible for SS Disability.

Lawmakers are mostly unaware of EOAD, so how could they know of its financial effects on young families? We are the only ones who can raise their awareness. Of course I know that you have more than enough to do – becoming politically active is most likely not on your radar screen when your children can’t cope with their young parent’s illness; when you can’t pay your bills; when you are overwhelmed with full time caregiving.

But the main lesson I learned in Washington this week is that nothing will get done without full scale media attention, and we are the only ones who can accomplish that. One way or another, every single person affected by EOAD has to get their story out. Letters to the editor; phone calls and letters to local TV and newspaper reporters; speaking at Town Hall meetings – whatever you are able to do to help raise awareness of EOAD will hopefully make those in government sit up and listen.

Please post comments under existing Message Board Topic: Who Speaks For EOAD

Feedback to joan@thealzheimerspouse.com