Through dementia’s eyes
The number of people suffering from dementia is forecast to explode in the coming decades.
Anything new or different can be a challenge of extreme proportions. It doesn’t matter what it is: a telephone, clothing or personal care products. The smallest changes, the most minor things can cause confusion, anxiety and even fear. Having dementia doesn’t necessarily mean a person has lost their mind, many victims are aware of their struggles and that awareness makes life even more difficult. They can remember what life was like before. Perhaps only in flashes of memory, but they can remember that life was never this frustrating or so hard.
On June 19, Sun City Center Senior Living, a senior living and residential memory care facility, offered the family members of dementia victims a look through their loved one’s eyes. The Virtual Dementia Tour (VDT) is designed to provide very personal and hands-on insight into the challenges, fears and frustrations experienced by those who suffer from dementia. Second Wind Dreams of Marietta, Georgia, an organization dedicated to fulfilling the dreams of elderly people, created VDT. It has gained worldwide recognition as a proven training method for people caring for those with dementia. The tour includes a unique set of goggles, headphones, gloves and shoe inserts, all designed to simulate the loss of central and peripheral vision, the loss of hearing and increased confusion and the loss of sensory nerves and fine motor skills. It is a way for caregivers and family members to be in the shoes and to see through the eyes of patients and loved ones who suffer from dementia.
According to the Alzheimer’s Association, in the United States someone is diagnosed with that disease every 69 seconds. While Alzheimer’s victims make up the largest category, dementia comes in many forms. Currently 24 million people suffer from dementia. In the next few decades, the number suffering from some form of dementia is expected to reach 84 million or higher, which could create the largest crisis in the history of health care. Now is the time to learn more about dementia and according to Second Wind Dreams, “Learning to create a positive environment for those with dementia can only come from attempting to walk in their shoes.” At Sun City Center Senior Living, family members did just that.
On a bright June day, two women in the prime of their lives, wearing goggles, headphones and gloves, had to be walked hand-in-hand with a staff member down a hallway to a darkened apartment at the residential facility. They were instructed to perform simple tasks such as folding up and putting away towels, setting a table, filling a water glass and hanging up clothes.
One of the women uttered negative statements, talked to herself and ultimately had to ask for help. Both women wandered, a classic behavior of dementia in which the person is trying to find a familiar place or something they think they need to find. Neither were able to fully complete all of the simple tasks, tasks that would not warrant a second thought for someone who does not suffer from dementia. The women walked away with new insight into what it means to be impaired with dementia. Everything changes, from what you see and think about things to not being able to perform even the simplest task. Even something that might have been imperceptible previously can cause a sensory overload, making the person wander in the hopes of finding a refuge.
“We have to stimulate the minds of our residents,” said John Perkins, executive director of Sun City Center Senior Living, “but there’s a very fine line between not enough stimulation and too much. We have an activities program that is designed for those with dementia. Our staff is trained for this — for difficult situations or even difficult residents. We tailor the care and services to the needs of the residents.”
Sun City Center Senior Living currently has 130 residents, primarily in assisted living, with 46 residents in their memory care unit. One major difference between the two sides of the facility is in the level of care. Assisted living is largely independent while memory care is much more staff-intensive. Many more services are offered to those in need of memory care. If the projection for the increase in people suffering from dementia proves true, those services will be ever more in need.
The situation is serious enough to warrant federal action. On May 15, President Obama presented the National Plan to Fight Alzheimer’s Disease. The plan, which includes $100 million in the 2013 federal budget, is designed to optimize the quality of care, to expand support for people with Alzheimer’s and their families, to enhance public awareness and engagement, and to track ongoing progress and drive improvements in the plan and in treatment. The signature piece of the plan calls for preventing and effectively treating Alzheimer’s disease by 2025. If that comes to pass, a monumental health care crisis may well be averted.
At Sun City Center Senior Living, residents enter the memory care unit through a variety of means. In some cases, family members seek out solutions such as that offered by residential facilities. Family members care for the majority of people with dementia at home, but while that may seem to be the ideal solution to the growing problem, family members frequently do not have the time or the ability to provide the level of care needed by those who suffer from dementia. In other cases, residents transfer over from assisted living, perhaps alone, perhaps the husband or wife in a couple needs more care than a spouse can provide, even in an assisted living environment.
“In assisted living, residents are living independently, we help them with meals and so on,” Perkins said. “We provide them with services for things they can’t do for themselves. A difference between our assisted living side and the memory care side is the ratio of staff to residents. Much more care can be provided in memory care. A certain percentage of our residents will transition between assisted living and memory care. That transition can be abrupt or more gradual.”
On the current course, virtually no one will be untouched by the growing problem of dementia and the care required by the victims. Your spouse, your parents, and even you may only be looking at a matter of time before it comes to your doorstep. Planning and preparation is something almost everyone should consider. With the Virtual Dementia Tour, people can gain new insight and a great deal of empathy for what their loved ones experience day by day, minute by minute. And hopefully with each passing day, the resources to help those impacted by dementia will improve and increase.
“Because dementia affects so many people, we believe it’s important to do our part to promote a greater understanding of what it is like to live with this devastating and widely misunderstood disease, Perkins continued. “For families with loved ones who have dementia, a lot of people tell us they wished they had known about this place sooner. It takes a special person to be a caregiver for dementia. It takes a very strong person. For family members who are caregivers, reach out for help. There are a lot of resources out there.”
Perhaps the first step involves walking in the shoes and seeing through the eyes of a person with dementia. On June 19 in Sun City Center, a group of people in the prime of their lives did just that.
For information about the Virtual Dementia Tour, visit Second Wind Dreams at www.secondwind.org/vdt.
For information about the National Alzheimer’s Project Act, visit aspe.hhs.gov/daltcp/napa.
For information about Sun City Center Senior Living, visit www.pacificasuncity.com