Patients with Alzheimer’s disease, the most common form of dementia, and their caregivers say the illness leaves them feeling isolated and apart from family, friends and life’s typical connections, a report shows.
About a quarter of people with dementia hide or conceal their diagnosis because of the stigma surrounding the disease and 40 percent say they are excluded from everyday life, according to the World Alzheimer Report 2012 released today by London-based Alzheimer’s Disease International.
About 36 million people worldwide are living with dementia and the numbers will more than triple to 115 million by 2050, according to the report. The global cost of the disease is estimated at $604 billion. More education is needed about dementia, especially as seemingly healthy people are diagnosed earlier with the disease, said Beth Kallmyer, vice president of constituent services at the Alzheimer’s Association in Chicago.
“People are getting diagnosed earlier and they are getting diagnosed early enough that people are shocked that they have Alzheimer’s disease,” Kallmyer said in a Sept. 18 telephone interview. “You want to feel support when you say you have a disease.”
Dementia affects a person’s memory, thinking, behavior and ability to perform everyday tasks. There is no cure. Drugs on the market now address only the symptoms, not the underlying cause, and none has been shown to slow progression of the disease.
This year in the U.S., the expense of caring for those with Alzheimer’s is estimated at $200 billion, mostly in costs to the government health insurance programs Medicare and Medicaid, according to the Alzheimer’s Association. That figure is expected to increase to $1.1 trillion by 2050.
This year the National Institutes of Health will provide about $500 million in research funding for Alzheimer’s compared with $5.45 billion for cancer, $4 billion for heart disease and $3.1 billion for HIV/AIDS, according to the Alzheimer’s Association.
Kallmyer said a diagnosis of cancer usually spurs follow-up calls by friends and family about the person’s health and requests to help. With Alzheimer’s, many people, including family, don’t know how to react, maybe because of fear or feelings of inadequacy, and the patient can become isolated, she said.
“There are parts of the disease where people are very much able to participate in daily life and they’ll tell you what they might need in terms of help if you just ask,” she said.
In today’s report, Alzheimer’s Disease International surveyed 2,500 people in 54 countries, including those with dementia and their caregivers. Two of three people who responded to the survey said there is little to no understanding of the disease in their countries. About 75 percent of those with dementia and 64 percent of caregivers said there were negative associations for people with the illness.
“We chose this topic because we feel that stigma is the main barrier to finding solutions for Alzheimer’s disease and dementia,” said Marc Wortmann, executive director of Alzheimer’s Disease International, in a Sept. 18 e-mail. “Despite the growing numbers and huge costs, there is still little response from governments in improving services and putting money into research. As long as people ignore the disease, that is not going to change and the ignorance is a result of stigma.”
In addition to greater education, the report recommended more programs to reduce the isolation of people with dementia, additional help for caregivers and an increase in research.