Early Stage Alzheimer's Patients 'Don't Want to be Stigmatized'

According to an article by Mary Brophy Marcus in USA TODAY, being treated with dignity is a universal human need, and perhaps even more so if you have early Alzheimer's disease, a new report indicates.

After a year of listening to the thoughts of more than 300 people diagnosed with early-stage Alzheimer's disease, the Alzheimer's Association today releases "Voices of Alzheimer's Disease," which reveals many patients in the early stages of dementia feel they are prematurely perceived as debilitated — even by close friends and relatives.

Those who have early-stage Alzheimer's don't want to be defined by their memory loss or functional decline, says Peter Reed, senior director of programs at the Alzheimer's Association.

"We are seeing a growing trend of people in early Alzheimer's who really retain the capacity to contribute," Reed says. "They don't want to be stigmatized. They are saying, 'We are still vibrant contributing members of the community.' "

About half of the 5.2 million Americans estimated to be living with the disease — a form of dementia that slowly destroys memory and a person's ability to function independently — are in the early stage. The report says top concerns include:

• Frustration with how the stigma and misconceptions affect their relationships.

• Dissatisfaction with the medical community, including difficulties in getting the right diagnosis, treatment and follow-up care.

• A lack of knowledge about the availability of support services.

• The prospect of relying more on friends and family to meet daily needs as memory fails.

• The desire to stay involved.

"These are the voices of our mothers, fathers, sisters and brothers, husbands and wives, and they are telling us that Alzheimer's is a significant but not insurmountable problem," says Michelle Barclay, a gerontologist and vice president of programs at the Alzheimer's Association Minnesota/North Dakota chapter in Minneapolis.

Barclay says the feedback describes situations that communities and care systems can improve.

"Alzheimer's is like a monster under the bed. You have two choices: You can either look under the bed and scope out the monster and see what tools you have to fight him, or you can sit there and wait for him to come. There's so much you can do if you know early on."

Educating the public about early dementia will increase earlier diagnoses and could help boost participation in drug trials, says Samuel Gandy, associate director of the Alzheimer's Disease Research Center at Mount Sinai School of Medicine in New York. "It will almost certainly be these early-stage patients who will lead the way toward new drugs since they are poised to benefit from them."

The report, Reed says, is "a call on the part of people with early-stage Alzheimer's … to continue to treat them with respect and dignity and help them maintain their personhood and humanity."