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The World Through the Eyes of a Person with Alzheimer's Disease
By Nancy Kennedy

What does it feel like to have Alzheimer's disease? What does a person with Alzheimer's disease or a related dementia feel as memory fades and the ability to communicate diminishes? How does this person think and express himself or herself? These questions matter greatly to those who love and care for persons with Alzheimer's and to those who are in the early stages of the disease.

To better understand the personal experience of Alzheimer's disease, one can best learn from the true experts: persons living with the condition, and their families. That is something that Carrie Chiusano has been doing for years as administrator of Woodside Place, the well-regarded Alzheimer's and dementia personal care community in Oakmont pioneered by Presbyterian SeniorCare, the region's largest elder care provider. At Woodside Place, the environment is calm and secure, and the care is compassionate, in contrast to some long term care settings, where dementia care is centered on control and restraint. "Alzheimer's disease is most difficult in the early stages, when the residents can exhibit behaviors that are hard to manage," Chuisano says. "It helps to keep in mind that persons with Alzheimer's or dementia can be afraid and struggling. In the early stages, the person is aware; they know that they've changed. Word finding is hard – they know what they want to say, but can't make the connection to the words; they use pronouns a lot instead of names, because they can't recall the names. They may become frustrated and express this in ways that were not typical of them in the past, such as swearing."

Covering up is a way that many persons with Alzheimer's disease try to cope, says Chuisano. "They try to hide their confusion and pull away, sometimes becoming withdrawn and depressed. It takes a lot of effort and energy to try to cover things up. This is so sad for the family, and terribly hard. The person with Alzheimer's and the family feel grief, anxiety and helplessness. Lucid days are not necessarily good days, because they're more aware of their deficits. Everyday things become a struggle, and they need help with their symptoms and ways to navigate daily life."

At Woodside Place, Chuisano and her team believe that human relationships are the key to caring for persons with Alzheimer's disease and other dementias. Consistent caregiver assignments enable the team to get to know them well, and the environment of care is "high touch, low tech - no bells and whistles." However, they use technology creatively. There is a system called "It's Never 2 Late" which teaches basic computer skills. The staff use iPods to calm residents with music, and Skype for communication with distant family members. Tom, a resident of Woodside Place who loves to garden, nurtures his vegetables with care, and holds up cherry tomatoes and cucumbers to the Skype camera to show them to his daughter.

In the 80's, Charles Pruitt, then the CEO of Presbyterian SeniorCare, realized that people with dementia were being subjected to physical or chemical restraint. He visited a place called Woodside in England and found an environment that was calm and relaxing. He saw care that was humane and respectful, and he brought that approach to Presbyterian SeniorCare, where the staff has embraced the Woodside Experience. Not only does Presbyterian SeniorCare offer Woodside Place, the specialized personal care community completely dedicated to Alzheimer's and dementia care, but it also offers the Woodside Experience via a dedicated wing at each of its skilled nursing communities. Today, the innovative Woodside Place model has been duplicated by more than 70 organizations nationally and internationally. In 2011, Chuisano was promoted from the director of recreation for the Oakmont campus of Presbyterian SeniorCare to administrator of Woodside Place. Prior to that, Chuisano worked her way up at Presbyterian SeniorCare, which she joined in 1984 right after high school. Subsequently, she acquired a psychology degree from Carlow University. "My heart is in Woodside Place," she says. "After 29 years, I still love what I do. We have an amazing team, they are so caring and are experts in their field. Our environment and philosophy of care are unique."

To learn more about Woodside Place, call (412) 828-5600; in Washington County, call (724) 222-4300. To learn more about Presbyterian Senior Care, visit www.SrCare.org. To learn more about Alzheimer's disease and dementia, visit www.alz.org.

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