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What can be learned from caring for residents with dementia

May 24, 2011
by Susan D. Gilster and Jennifer L. Dalessandro
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A reminder on what this work is all about

While most of what we hear in mainstream media about those who work in long-term care is not positive, what we have experienced is that employees who are supported and given a “voice” in their organization can make miracles happen. This is more than a vocation for most long-term care workers—they choose to care for those who no one else would or could. And they do so with no expectation of reward.

Individuals with dementia have no voice, no ability to advocate for themselves and must therefore be surrounded by employees who truly care about them. Despite the inherent differences between any given assisted living or long-term care facility, the people who work within them exist to serve every resident, family member, visitor, making all the difference in the Alzheimer’s experience. When this is the expectation for employee performance, the outcomes are uniquely different from the negative stories we too often see.

Staff members have shown us what is possible in the world of Alzheimer’s disease. Below are some points taken from our commentary for CNN.com’s iReport. They are excellent reminders for leaders in long-term care and for your staff as well. We all need the occasional reminder of why we do this important and rewarding work and care for those with dementia who can no longer care for themselves.

What we have learned:

As health professionals we must redefine success in this population—they will not get better and go home.

The “person” is still inside and there are always ways to reach and touch them.

While we as non-family members do not know who the residents were before their stay, we love and accept them for who they are now. We enjoy their warmth, compassion, knowledge, experiences, dry senses of humor and their unconditional love.

We must preserve their dignity when they can no longer do this for themselves. The disease affects everyone; university presidents, CEOs, professors, engineers, mothers, fathers—anyone, at any time.

People need people, and individuals with dementia do, too. They are very accepting of one another, in the “same boat” so to speak, thus a sense of belonging results, creating opportunities for success, happiness and joy.

We can help families continue to be part of the life of a person with dementia and that it is necessary to support them through all of the transitions their loved one will make.

Families must know that stepping away from caregiving periodically, or at any given time, does not mean that they love that person any less.

Sometimes the best thing we can do is just listen.

Employees see this work as a blessing in their life. Each day they learn something, get a hug, smile or friendly comment from a resident or family member. They know they are making a difference.

Serving others with patience can come as naturally as breathing.

No two days are alike and you may experience one of the happiest, saddest and funniest days all in one day.

Alzheimer’s is a progressive disease with continuous change that must be anticipated and expected—and it is important to appreciate and celebrate the smallest gain or joyful moment.

We have learned a great deal about not taking life for granted, making each day a little more special.

We have seen and experienced the true meaning of “unconditional love.”

As long-term care professionals, we really do get far more than we give, even though the rest of the world does not know it.

Susan Gilster, PhD, FACHCA, NHA, Fellow, developed the Alois Alzheimer Center, Cincinnati, Ohio, which opened in 1987 as the first freestanding dementia facility in the United States.

Jennifer L. Dalessandro, BS, NHA, is the Assistant Administrator and Research Coordinator of the Alois Alzheimer Center and has helped it evolve into a person-centered facility.

For more information, phone (513) 673-1239 or visit www.careleadership.com or www.alois.com.