'Invisible' Purple Communities

People around the country are gearing up -- forming teams and finding supporters -- to make an Alzheimer's Association Walk to End Alzheimer's during early fall. These events, held in more than 600 communities, are meant to bring people together, not only to raise funds for research and for the support and care of those who suffer from the disease but also to raise awareness. The parades of people, mainly dressed in purple, make a statement as they wind through city centers, neighborhoods and urban shopping areas. Pay attention, they say to onlookers and cars passing slowly around the partitioned streets. Many of us, your neighbors and co-workers, are dealing with this disease. You can help.

Since 1989, Alzheimer's Association walks have raised more than $260 million -- money that would not have been donated without the people in purple, walking a couple of miles on a Saturday morning in September or October. And every dollar counts, even if every dollar seems like one drop in a gigantic bucket.

We recall National Institutes of Health Director Francis Collins testifying this past February at the Senate Appropriations Subcommittee on Labor, Health and Human Resources that the investment allocated to Alzheimer's research -- meant to translate, he said, from scientific studies into tangible help for patients and their loved ones -- pales next to the actual expense of the disease, estimated to be over $200 billion per year. Use of the word "staggering" to describe this expense has begun to seem like a cliché; unfortunately it is the only word that fits.

But as a nation of communities -- communities in which people coping with Alzheimer's disease and other dementias live and socialize -- we need to offer more than just money. At the February 26 hearing, actor Seth Rogen, in a speech peppered with self-deprecating jokes, made an earnest plea for an end to the stigma of dementia. I admired Rogen. Not many of us can see ourselves wringing laughter from a Senate budgetary committee, particularly on a subject so grim.

Rogan's use of the word stigma to describe societal reactions to his mother-in-law's Alzheimer's disease asks something specific of all of us. It implies one facet of this problem, dubbed the "silver tsunami," which we can fix, completely, without spending a dime. We can end the stigma of Alzheimer's disease. The upcoming regional walks urge financial support of Alzheimer's causes. They also remind us to be aware of what we can do freely to help.

Imagine this circumstance: Your partner of, say, forty years can no longer dress, or drive, or fix a simple meal independently. He or she depends on you, without remembering who you are, for a sense of security almost every minute of every day. You don't know what will happen if you take this person, who looks much the same as any other older adult but who may suddenly behave or speak oddly, to the grocery store, or to a restaurant or to a shopping mall, never mind the private difficulties of orchestrating such an outing.

I know a charming woman in mid-stage dementia, for example, who believes almost every person she encounters is a close friend. She throws her arms around waitresses and sales clerks. She climbs, smiling, into strangers' cars. Her beleaguered husband, tired of the drama, tired of explaining, and tired, period, finally pinned a conspicuous note to her clothing with the words I have Alzheimer's printed in bold letters.

One might question his action in the interest of the woman's dignity. The right to dignified treatment has nothing to do with intellect. It's a matter of basic humanity. The greater concern, however, is that we do not, often enough, recognize dementia for what it is and take the erratic behaviors and confusion in sympathetic stride. What a different world it would be for people whose lives have been upended by Alzheimer's disease if they felt the support of everyone, friends and strangers alike. If we all "invisibly" wore purple during our daily walks throughout the whole year. There would be no need for a note pinned to the blouse of an uncomprehending person, spelling out the problem in a tacit plea for understanding.

The Alzheimer's Association walks raise money, desperately needed, if the Association is to realize its overarching goal of bringing about an end to Alzheimer's. But walks are also about awareness and the need to make this awareness an integral influence in our everyday actions and attitudes. We can end the stigma of Alzheimer's disease without cost, as communities of people wearing "invisible" purple -- reacting helpfully when we see a patient or caregiver struggling and reaching out with compassion to those among us who have suffered such massive personal losses. Connection to others doesn't have to be among these losses.