Living Through Windows... Alzheimer's Disease Series

By Mike Bockoven
michael.bockoven@theindependent.com

The Need

"If you ask 10 people how many of them have a family member with Alzheimer's disease, four of them will raise their hands. If you ask how many people know someone with Alzheimer's disease, eight will raise their hands." -- Karen Noel, director of the Alzheimer's Association of the Great Plains.

Third Phillips holds 31 members at a time -- a number, derived from experience, that the administration is wise not to exceed. Most rooms are double occupancy, not that privacy is much of a concern in the later stages of Alzheimer's, and there is a list of eligible veterans afflicted by the disease waiting to get a spot on the ward.

Usually, a person comes to the ward when his or her behavior becomes too much for other wards to handle. Other times, Luther said, the family takes care of the deteriorating candidate as long as they can until a spot opens up or other arrangements are made.

"We've had a waiting list for a long time," she said. "From what's happening in the industry, it looks like we'll have a waiting list for a long time."

It's estimated that 4.5 million people in the United States are in some stage of Alzheimer's or a related debilitating dementia, and as with any issue regarding care of the elderly, numbers are expected to skyrocket. The Alzheimer's Association, which helps families and caregivers, said that number has doubled since 1980. The association also reports that, largely because of the cost, seven out of 10 people with Alzheimer's disease live at home or with a family member. The average cost of putting someone in a care facility is roughly $42,000 per year.

There are costs that aren't measured monetarily. Watson said a stigma still comes with putting someone in a home for Alzheimer's, almost like it's admitting to some sort of weakness. The opposite is the case.

"Families can be really conflicted," she said. "It takes a lot of courage to make the decision. It's hard to decide to do, and it's hard to find a place you think will be a fit."

There are no set criteria for being "a fit." Instead, it's more a feeling of comfort with your care provider, Watson said.

While comfort is a big part of finding the right facility, in Nebraska the situation is more of finding a care provider at all, especially in rural areas.

The Alzheimer's Association of the Great Plains estimates there are 40,000 people in Nebraska suffering from some stage of Alzheimer's disease, more than 70 percent of whom are cared for at home. Nebraska also has one of the highest rates in the country of people over the age of 85, and as many as half of those 85 and over may be suffering from the disease.

Karen Noel, executive director of the Alzheimer's Association of the Great Plains, said care options are limited for a large number of families, and more importantly, many families want to keep their loved ones at home. While the group has pursued a number of ideas on a state level to better care for people with the disease, Noel said, it can be difficult because no two situations that can be served in the same way.

"If you've met one person with Alzheimer's disease, you've met one person with Alzheimer's disease," she said. "It affects everyone differently, and it's different for every person and their situation."

The group has advocated a shift to more community-based programs such as adult day care and caregiver respite. If those who give care don't take care of themselves, they have trouble taking care of someone with a complicated and debilitating disease.

Many families are coming up against the dilemma, as the population of the United States and Nebraska gets older and older. Noel said Nebraska is one of the states with the oldest populations in the country, and more and more people will develop the disease over the next decade or so.

Because of this, she predicts what's available now is woefully inadequate compared to what will be needed in the near future.

Medically, the demand on a caregiver varies both with the person being cared for and the stage of the disease he or she is in. Watson said loved ones usually come to the conclusion that they need help when the afflicted person starts disregarding any sort of sleep schedule.

On Third Phillips, it's not uncommon to see all manner of activity in the middle of the night, and some ward members prefer the night to be active. This can, of course, be problematic for a caregiver trying to hold down a job or with a schedule.

Other problems come in later stages when patients are unable to communicate, have issues with using the toilet, wandering in areas with stairs or getting into something that might cause them harm.

Then, there are the emotional issues. In some cases, family members making the decision for their loved ones feel different about what to do. Sometimes, they come to terms and bond over the process. Sometimes, it splits them like an ax splits a piece of wood.

"It can be terribly divisive, though it doesn't have to be," Noel said. "A lot of times, a support group or thoroughly examining the care options can help families better understand what they're up against."

Windows :: Third Floor Phillips :: A Typical Day in an Atypical Place
The Caregivers :: The Members :: The Families :: The Need
Opening the Doors :: Seeing Through Windows