How Can We Better Reach People Who Struggle With Dementia?

In this first part of a two part interview, SevenPonds speaks with Stephanie Howard, Residence Service Director of Regency of Evergreen Valley in San Jose.  Recently, SevenPonds CEO Suzette Sherman heard Stephanie address professionals and family members about ways to reach patients who struggle with dementia. The expertise, energy, and compassion Stephanie conveyed compelled Suzette to invite her to talk with me today.

In her Army days Stephanie was responsible for the evacuation and care of wounded soldiers during the Vietnam War. She married and continued to serve until she became pregnant, making her (in those days) ineligible to serve. In 1976 her 5-year-old son Tucky was diagnosed with the United States’ first reported case of Reye’s Syndrome, a rare and often fatal virus disease that attacks the brain and liver. She has cared for him ever since.

With an interest in brain function inspired by Tucky’s illness, Stephanie began working with the elderly 15 years ago, serving as director at Regency of Evergreen Valley for the last 5 years. In 2013 she received the California Assisted Living Association (CALA) Outstanding Department Director award.

Editor’s note: This interview has been edited for length and clarity.

Laura Hayden: My mother suffered from frontal lobe dementia. When I finally found a facility that deliberately added a touch of quality to her day, that helped the both of us. How can caregivers improve the quality of their loved one’s day?

Stephanie Howard: All patients struggling with dementia care about is love, respect, dignity, and choice. You put those four things in place and they have a better life than us at times. Things are heavy duty “out there,” but they don’t need to be there. The world is smaller for them.

Laura: What do you mean by smaller? 

Stephanie: Just that all the things that they used to do — or that you think that they should  do — are more about you than the patient. I always tell caregivers that for the person struggling with dementia:

What was, was.

What is, is.

The ‘was’ is gone,

But there’s nothing wrong

with making the ‘is’

the best ‘is’ it ever was.

That’s the focus of our program — for the patients to live their lives the best that they can for the time that they’ve got –not to try to live it the way it used to be just because it once was like that. And we don’t put them in a Pull-Up (diaper), stick them in a chair and fill them with a bunch of medication.

Credit: California Assisted Living Association/youtube

Laura: How can we enter and participate in their smaller world?

Stephanie: Communication is the key to success with our residents. Sometimes their minds are going 100 mph and sometimes their minds are going very slow. So the ability to have a conversation with them means a lot. If they are having a catastrophic day,  we don’t pick that day to try to calm them down. That’s not where they are at. You may feel it’s your time to get that done, but it’s not their time to do that.

Laura: Are there better ways to communicate than others?

Stephanie: Let me tell you about the 12-inch window. If you want something from your husband, you give him the 12-inch window. If you want something from the baby or the puppy, you give them the 12-inch window. You move in close, look straight into their eyes, and speak to them.

Laura: And that’s the 12-inch window?

Stephanie: That’s the 12-inch window. You don’t holler 20 feet across the room, “Anne have you taken all your medication? And how are you feeling? How’s that new aide doing?” That just gets Anne looking around the room wondering where all that noise is coming from. And no one gets the answers they’re looking for. They just think Anne’s getting worse and decide to stuff her with more meds. That’s not what it’s all about.

Stephanie Howard with her son Tucky.
Credit: California Assisted Living
Association/youtube

Laura: It sounds as if your program at Regency emphasizes the respect and dignity afforded the patient you spoke of earlier.

Stephanie: I feel that way. But I want to say something to you. It’s not about a person. It’s about a team. I could do nothing without the staff. My average staffer has been here for 15 years. They know the resident’s rights. They like to be able to practice that.

And that’s one of my enforcements. Many years ago when I took over the building, I had a 295-pound lady who hadn’t gotten out of bed in two years. When I walked into the dementia ward at night the staff was taking chairs and putting them under the door knobs so that the residents wouldn’t come out at night. They were running it as a skilled nursing facility. I had to take it from 87 percent occupancy to 52 percent because the residents weren’t getting the care they needed. The staff was all task oriented. They weren’t into person-centered care.

Laura: How long did it take to achieve a person-centered care culture?

Stephanie: I struggled for a year and I worked very hard to get the stabilization of the staff we have to work with the program. And now I have a quiz that I give applicants that tells me before I hire them whether they have the ability to do this or not.

Be sure to join us next week for part two of our interview with Stephanie Howard as we continue to discuss how person-centered dementia care improves the life of the patient struggling with the disease.