guideline 5
Consider the whole person, not just the dementia.
Those with dementia are still people and they still have stories and they still have character and they’re all individuals and they’re all unique. And they just need to be interacted with on a human level.
Carey Mulligan
Oscar-nominated Actor
Throughout the course of dementia, each person’s level of functioning depends on the support system built into their care.
↪ Put yourself, once again, in the place of the person with dementia. Are you still a multi-faceted individual?
A person’s physical and mental status are only two aspects of what makes them tick. The roles they fill in life (child, sibling, friend, lover, parent, employee) help to make them who they are. The same is true for a person’s culture, ethics, spiritual beliefs, education, and the choices they made in life. They are all combined in one unique individual.
Common sense dementia care addresses needs of the person with dementia, not just the dementia in the person we care for.
↪ Think about the type of care you give to people with dementia right now. Do you see the person with dementia as an individual with the skills they currently possess, or do you focus on their illness and the abilities they may have lost? Is the woman in the room next to the nursing station Mrs. Martin, or the patient with vascular dementia?
Taking the time to find out about more about your patients helps you provide a higher level of care and a better quality of life for them.
Polly
A daycare center in Ohio did its part to help Mel when he called and asked about admitting his wife to their program. The center was designed to care for people with dementia in various stages of the disease and Mel believed his wife Polly would do well there.
Visiting the next day, he was impressed. Polly could stay at the center for the whole time he was at work, and professionals would make sure she was safe, had a good lunch, a nap if she needed one, and activities she would enjoy. It seemed like the ideal solution, and Mel thought it would allow him to remain employed for another year or two.
Polly, however, had other plans. She did not like the idea of a daycare center, and especially the people she imagined were staying there. She told Mel she was “not one of them.” She refused to consider it and decided she wanted to go back to work instead. She told Mel she needed to be around people, enjoy her job, and have things “like they used to be.”
Polly had worked as a secretary in a law office for almost twenty years. When she retired, still wanting to keep busy, she took a part-time job at a nursery school and volunteered at the local animal shelter. Polly described herself as a “people person.”
Not knowing what else to do, Mel called the daycare center for suggestions and they gave him an idea. That evening, Mel explained to Polly that her previous employer had hired another person. Her old job was gone, but if she was interested, he found another job for her. He told her he thought she would like it because she could be around a lot of other people.
The following day he took Polly to the daycare center. Mel explained that it was a place for people who had problems with their memory and they were looking for help. The director greeted them and told Polly they wanted to hire her because they needed someone to help the staff keep the people there happy and engaged in activities. Her job would include talking to them, helping to set the table for lunch, handing out snacks, accompanying others to activities, and helping with pet therapy.
Polly was given a tour of the center and was treated as if she were a prospective employee. On the tour she saw the attendees in various activities including group exercise, a reminiscence circle, and flower arranging. She also met the pet therapist, who was bringing in two beautiful dogs that Peggy admired.
Mel was pleased that the center had recognized Polly’s need to “work” and their willingness to use that to encourage her interest in attending the daycare program. Of course they knew that no real demands or expectations would be placed on Polly and that she would be encouraged to make friends and enjoy the activities. They waited to see what Polly’s decision would be.
Polly did decide to take the “job” at the center. For a few weeks, she managed to hang on to the idea that she was there to work with the other people who had dementia. But gradually Polly just enjoyed going to the center to see her “friends.”
People with dementia are just like you and me. The roles we fill help to define us. The staff at the dementia care center didn’t see Polly as another potential client, but saw her as an individual person whose job was important to her quality of life. By “hiring” Peggy, they helped her to enjoy something she valued while receiving the care she needed.
There are still other reasons to know about a person’s life and understand the joys and traumas they have experienced. Here is part of Rivka’s story to illustrate why this is important.
Rivka
Rivka’s moods went up and down a bit at first, but it didn’t seem unusual for someone newly admitted to a dementia unit. She also exhibited slight confusion and words frequently escaped her. Short-term memory loss was also a problem but overall Rivka was functional and seemed happy. We knew she had been born in Germany and had come to the United States as a child, but she would not talk about her childhood. She preferred, instead, to sing and dance to old Jewish songs. I can remember her dancing with a tablecloth wrapped around her like a skirt, so she could swirl it as she danced.
In a few weeks, however, things began to change. Rivka would become hysterical at times, hiding and crying in her room. We were concerned and made a record of it each time it happened to see if we could find a pattern. Eventually, we discovered it was happening most often right before the evening meal. Soon Rivka started saying that the Nazis were coming.
Piecing things together, we were able to figure out that Rivka was reacting to the noise the food carts made when they came over the threshold to enter the units. Apparently, it reminded her of the approaching tanks when the Nazis came to her town in Germany when she was a child. Almost every synagogue in Germany was damaged or destroyed during Kristallnacht (“Night of Broken Glass”). Rivka’s father was killed that night. These flashbacks terrified Rivka, and she stopped eating.
Here is an example of a terrifying incident occurring in childhood that Rivka seemed able to cope with to some extent until her dementia reached the point where her ability to do so was gone.
The pre-dementia life of an individual is a strong predictor of the problems that crop up during the person’s decline. Caregivers will be limited in their ability to provide the type of care that enhances quality of life and keeps their patients as functional as possible unless they make an effort to treat the whole person, not just the dementia.