Mama's condition was deteriorating even though she insisted, "I don't think the Alzheimer's is as bad as everyone else thinks it is."
Her daughter didn't hold back. "I think it's much worse than you realize. You are in the Alzheimer's. We are outside of it, watching what it's doing." This whole situation was overwhelming to the family, but especially to the daughter who took over the primary caregiver duties when her father passed away. Her mother had been such a vibrant, warm woman with an active, clear mind. How could this have happened? And how did the firefights happen? One moment they were talking and the next there was an epic battle between them.
Alzheimer's Disease is a most devastating illness, more for the family, friends and neighbors who watch the progression of the disease in someone they know and love. It isn't easy to watch the decline and death of the brain of a loved one who used to be so alive, so sharp.
The person who has the disease insists it's not as bad as everyone thinks, but the caregivers know it is much worse than the person understands. And what damage can happen between family members because of the demands and stress of Alzheimer's in the family.
Midmonth, there was a meeting of the Advisory Council on Alzheimer's Research, Care and Services regarding the development of a National Alzheimer's Plan.
"With as many as 5.4 million Americans living with Alzheimer's and nearly 15 million friends and family members providing care for them, [there is] need to develop an 'urgent, achievable and accountable strategy," advises the advisory council.
Alzheimer's is the sixth leading cause of death and the only one of the top ten with no cure, no prevention, not even a means of slowing the disease.
The U.S. Department of Health and Human Services has a time table for the National Alzheimer's Plan. A first draft is to be ready by mid-February. The final plan is expected in late spring, said Robert Egge, vice president of public policy at the Alzheimer's Association. The plan includes funding for research, clinical care and long term services and support. You can read the draft framework at aspe.hhs.gov/daltcp/napa/Framework-Draft.pdf.
Essentially, they hope to be able to prevent and effectively treat AD by 2025. In May, the National Institute on Aging (NIA) will host a research summit to identify research priorities, study research collaborations (public and private) and form the plan. These proceedings will be open to the public.
The newest technologies have enabled health care providers to identify the onset of AD-beginning up to 10 years before symptoms become evident. This allows them to provide some earlier intervention, trying to slow or delay progression of the disease.
"Far too many people with Alzheimer's Disease are not diagnosed until their symptoms have become severe," the report notes. Why? Some are limited because of no access to health care coverage or the lack of the technology to diagnose earlier. Ten years ago the only way to diagnose Alzheimer's was to autopsy the brain after death.
Today's technology is much better, identifying the disease 10-15 years before symptoms appear, before the Alzheimer's does so much damage.
There is a long way to go in Alzheimer's research. A nationwide group of advocates will take the message to Congress in Washington, D.C. and fight for a future without Alzheimer's Disease April 23-25. To register visit alz.org/forum.
If the stress and demands of AD is affecting your family and you need assistance coping, contact Family Recovery Center for more information. FRC promotes the well being of individuals, families and communities. Our programs are funded, in part, by Ohio Department of Mental Health.