Alzheimer's disease: Alone but Not Forgotten

Alzheimer's Association
Friday, 13 July 2001

Experts at the 10th National Alzheimer's Disease Education Conference called for community involvement to help identify and assist the estimated 800,000 Americans who currently live alone with dementia.

"People with dementia who live alone should not be forgotten," said Barbara Newhouse, MS, LBSW, executive director of the Alzheimer's Association Big Sioux Chapter in Sioux City, IA. "This is a growing issue and we all must realize that some of our friends, neighbors and customers are alone and can be hurt or taken advantage of unless we step in, identify them, and immediately provide assistance."

Although their numbers are increasing at an alarming rate, older Americans who live alone are an often-forgotten group, and they are particularly vulnerable when faced with a chronic illness such as Alzheimer's disease. These individuals can forget to take their medicines, eat, drink, bathe or regularly visit their health care provider. They could wander, accidentally start a home fire, succumb to hypothermia, or become easy prey for dishonest people.

Newhouse cautioned that though the estimate represents about one-fifth of Americans with some form of dementia, there is little exact research about this population. Yet research by Glenn E. Smith, PhD, of the Mayo Clinic's Alzheimer's Disease Research Center in Rochester, MN suggests that at the time of diagnosis, as many as 40 percent of people with dementia are living alone.

These "live-alones" represent a broad array of individuals who fall into three general categories:

- Individuals with dementia who live alone but receive support from relatives living nearby.

- Individuals with dementia who live alone with support from "long-distance" caregivers–usually adult children or siblings.

- Individuals with dementia who have no close family members to provide monitoring or assistance. This last group is the most vulnerable of live alones.

In addition, many more individuals with dementia who do live with a family caregiver may be at risk of becoming live-alones on a temporary or permanent basis, as family caregivers can themselves be worn out by advanced age or the increased health risks associated with caregiver stress.

"One major challenge we face is keeping individuals with dementia safe while maintaining their dignity and independence," said. "In many cases, these are individuals who have lived through the Depression, World War II and many other life-changing events. They are rightfully proud and cherish their freedom."

At the conference, Dr. Smith and Ms. Newhouse presented the results of two different projects that looked into the challenges of assisting the live-alone population with dementia. The first project researched the effects and feasibility of televideo monitoring of live alones with dementia. The research featured six individuals with mild cognitive impairment—three were monitored, three were not for a period of time. It found that the individuals with mild dementia could be monitored without technical difficulty or an extreme invasion of privacy. The three who were monitored had no difficulty taking their medications, while the non-monitored individuals had an only 33 percent medication compliance rate.

The conference presentation also featured one Iowa community's mobilization of diverse service providers and other community stakeholders to develop and implement a successful plan to identify and assist local live-alones with dementia. The project included different approaches for rural and urban individuals and involved private non-profits as well as public entities such as city housing and law enforcement agencies. The plan is currently being replicated in Iowa under a federal Alzheimer's demonstration grant and served as the model for a national project for the Alzheimer's Association, which developed a video, "Alone But Not Forgotten," and an accompanying manual for its chapter network to use in communities nationwide.

Despite this good news, identifying live alones with dementia presents a significant obstacle to assisting them. While agencies may exist to provide a variety of both health care and dementia-related services to those who live alone, these agencies need help finding such individuals because they are not in the healthcare system. When properly trained in what to look for, gatekeepers can play an indispensable role in identifying live alones at risk.

Based on their research, the presenters encourage family members, neighbors and "gatekeepers" to bring a person who is living alone with dementia to the attention of community service providers such as the Alzheimer's Association or an area Agency on Aging. The term "gatekeeper" refers to the diverse group of individuals who are most likely to encounter individuals living alone with dementia, at home or in the community, during the normal course of the day. These could include law enforcement or safety personnel, letter carriers, delivery services, members of the clergy, bank tellers, meter readers, accountants, and apartment managers.

For more information, or to contact Alzheimer's Association, see their website at: www.alz.org