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When Alzheimer's disease strikes, it leaves a double blow. Once for losing someone to the disease and then once again when losing him or her to death. For the patient, it means losing something precious: your mind and memories, and eventually your life.

“It is like having the rug pulled out from under you,” Ruth Drew, director of family and information services at the Alzheimer's Association, explained. “Your memory, your mind, that which you have relied on your whole life, doesn’t work anymore. You see the world differently. The familiar places can seem unfamiliar. Familiar people can seem unfamiliar. So it can be very frightening for the person, particularly in the early- and mid-stages. For the family member, it is the grief of losing a person one bit at a time.”

Alzheimer’s is the sixth leading cause of death in the United States today. Not only does the disease affect the 5.4 million Americans living with it, it affects the nearly 15 million unpaid caregivers. These caregivers provide $17 billion hours of unpaid care, sandwiching their own lives – jobs, family, social endeavors – in-between caring for their loved one with ever-increasing duties.

“It affects not just memory and personality, but a person’s ability to do everything,” Drew said. “So over time, a person goes from having some personality changes, maybe some behavior changes, difficulty with problem-solving and abstract thought, remembering things, to over time needed more and more help and support, and eventually needing total care.”

Considering that Alzheimer's patients can live on average four to eight years before passing away – a very high figure versus many diseases – the strain and sacrifice can be incredible. Moreover, many caregivers are oftentimes aging and battling health conditions of their own.

“The cost to families, to individuals and to our country across the board is just incredible … This prolonged duration often places increasingly intensive care demands on family members. I don’t think people recognize the magnitude of the disease,” Drew said.

The cause of the disease has yet to be determined, although genetics and age are known risk factors.
This is reflected in the statistics: One in every eight adults aged 65 have Alzheimer’s, whereas of adults aged 85, one in two have the condition. Combined with the large numbers of baby boomers aging, the association predicts we are facing a crisis.

“This is a disease the can cripple our county, and cripple our health system,” Drew declared. “Without more research, without better treatment, and ultimately a cure, this is not something that our systems of care can sustain.”

While the organization provides support and education, there is one thing it cannot provide: curative medicines or disease-modifying pills. Alzheimer’s is the only cause of death in the United States’ top ten that doesn’t have a way to prevent it or cure it.

“There are medications that help with symptoms and help with quality of life, but nothing that slows the disease or stops it in its tracks,” Drew said. “And that is what is needed. So with the growing numbers of people with this disease, with the growing numbers of aging baby boomers, we strongly believe, the Alzheimer’s Association, the time is now to increasing awareness and increasing funding to fight this disease.”

While there is no easy cure, there is help. The Alzheimer's Association provides a 1-800 number (800.272.3900) that accepts calls across the country 365 days a year, connecting people with counselors, social workers or just a sympathetic ear.

Early detection is key, to know what you are dealing with and allow patients to have a voice in and a plan for their future. The Alzheimer's Association publishes a free online brochure on knowing the 10 signs of Alzheimer's disease, as well as a variety of medical information for families.

The charity also provides a network of 70 local chapters, which offer education and support groups. It might be something simple; for example, a man caring for his 99-year-old mother received volunteer assistance so he could get an occasional break and care for her better. These little efforts can make all the difference.

“What we’re learning is no one can do this alone. We know this about caregiving,” Drew said. “You couldn’t do it if you were at the top of your physical capacity. You couldn’t do everything that needs to be done to care for someone for the years and years of intensifying care that is needed. Nobody can do this alone. But when people have support, they are able to do so much more and do it in a way that provides some satisfaction.”

Today is the perfect time to spread that awareness. Today is Alzheimer’s Action Day. The public can help celebrate by wearing purple in a show of support or donate much-needed funds. The nonprofit even offers a way to turn your Facebook profile picture purple.

“It starts with you, it starts with me, it starts with all of us. And that’s the message we want to convey, that people can’t help if they don’t know about Alzheimer’s if they don’t know what is going on. So we can all have a part in raising awareness,” Drew said.

For more information, visit www.alz.org.

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