Our Common Enemy: the Thief of the Mind

Then you started to forget

and I swore I would remember for both of us

But I was young

and as the years inched by the memories slowly began to fade

. . . One day, I’ll be sitting beside you again,

and you’ll tell me those stories all over again

And we’ll both remember

*

This poem was written by Denise Ricks of Los Angeles, whose grandmother suffered with Alzheimer’s disease. Denise was one of 1 million family caregivers--sons and daughters, husbands and wives, friends and families--who care for the more than 150,000 people in the Los Angeles metropolitan area suffering a form of Alzheimer’s. The life of a caregiver is a marathon of tasks relating to the care of their loved one.

Alzheimer’s is an equal-opportunity disease. Aside from age, it knows no distinction of race, gender or ethnic background. Ten percent of people over 65 years of age have Alzheimer’s, and more than 47% of those over age 85, the fastest growing portion of the population.

As the executive director of the Los Angeles Alzheimer’s Assn., the largest of more than 200 chapters in the country, I am responsible for the coordination of our association’s direct services as well as our education and outreach programs for people with Alzheimer’s, caregivers and the medical community.

The Alzheimer’s Assn., a national voluntary health agency, also supports research that we hope will lead to treatment, a cure and prevention. For millions of people who wonder “Will I get it?” the Alzheimer’s Assn. is where they can turn.

The association’s pledge is to stand with the family through the ravages of this disease, through, as Nancy Reagan so aptly shared with our nation, “the long goodbye.”

To illustrate some of the association’s services, let me tell you about one man, John S., who came to us for help, which changed his life and that of his mother.

John was a doting son and caregiver for his elderly mother. Upon calling the Los Angeles Alzheimer’s Assn. help line, he learned of a meeting for caregivers.

That meeting led John to join one of the 80 support groups the L.A. association sponsors for adult children, spouses, people in the early stages of the disease and others. Working with a psychologist from our Family Connections Program who directed him through the bureaucratic maze of the health-care system, John was able to enroll his mother in an association-funded adult day care center where she was cared for during the day while he worked.

He also found out about our Safe Return Wanderers Bracelet program, which provides identification of people with Alzheimer’s, 50% of whom wander and sometimes become lost or even die as a result.

Upon learning of the Family Leave Act at a meeting of our Public Policy Committee, John took five months of unpaid leave to develop a care plan for his mother. Eventually, John’s dedication to providing a comfortable life for his mother and himself paid off. His mother lived her final years in relative comfort, and John was able to see to it that they were both well cared for.

The Los Angeles Alzheimer’s Assn. provides many additional services: Our professional training programs provide ongoing education to those who offer professional care for people with Alzheimer’s as well as for family caregivers; through our Adult Day Services Institute, we have funded, trained and encouraged the growth of adult day care centers for people with Alzheimer’s; our education and outreach efforts are directed at the diverse population of our Los Angeles basin through specially targeted programs--that are language specific and culturally appropriate--in Latino, African American, and Asian-Pacific Islander communities; our educational programs for caregivers and the general public take place in cooperation with more than 350 institutions in the Los Angeles area, all in partnership with the Alzheimer’s Assn. And our HMO / Alzheimer’s program is on its way to becoming a national model to help managed care organizations provide the kind of care that Alzheimer’s families need and deserve.

We look to our federal government, to our state and county and to local municipalities to share with us the responsibility for our citizens who have worked hard all their lives, fought for their country in wars and paid taxes.

Alzheimer’s disease costs our society $100 billion per year, and family members caring for their loved ones carry an enormous financial burden. In a time of competing issues, with limited dollars, the care of those with Alzheimer’s disease and the research for its cure must be a priority. If we cannot care for those who raised us and loved us, we have lost the moral footing that has made our country great.

Alzheimer’s disease is a silent health care crisis, facing both the public and private sector, and it must be a priority in our community.

The Los Angeles Alzheimer’s Assn. has built a reputation over the past eight years for providing a wide range of services, which are privately funded and depend upon the local community for support. As treatments are developed to slow down the onset of Alzheimer’s, as people live longer and their conditions are diagnosed earlier, as our society continues to age, as the baby boomer generation stares into the eyes of parents whose memories are fading, the role and responsibility of the Alzheimer’s Assn. will continue to grow. We have reached more than 37,000 people in Los Angeles through direct services, education and outreach this year.

As this thief of the mind touches those we have loved and who have loved us, let us dedicate ourselves to making a difference. The Alzheimer’s Assn.’s motto is “Someone to stand by you.” Let us stand together.

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Where to Call for Help

For more information, please call the following:

* Alzheimer’s Assn. of Los Angeles: (800) 660-1993.

* Alzheimer’s Assn. of Orange County: (800) 660-1993.

* John Douglas French Alzheimer’s Foundation: (310) 445-4650.

* UCLA Alzheimer’s Disease Center: (310) 206-5238.

* USC Alzheimer’s Disease Research Center: (213) 740-7777.