It was a big word for a 4-year-old. Her ability to recall the word and use it correctly was impressive.
At 4, this little girl may make more decisions and verbalize more about her emotions than many seniors with Alzheimer’s disease. For example, she most likely gets to choose what book she wants to read, what she wants for breakfast, what television program she wants to watch and what play activity she enjoys.
“Want” is the operative word here. In this child’s daily routine she is given choices that allow her to express her autonomy and independence. In turn, whether she knows it or not, she receives joy and satisfaction.
One of the main challenges in caring for a person with early to mid-stage Alzheimer’s is allowing the person’s “wants” to be verbalized and fulfilled. When we choose a person’s clothes, their meals, the activities they engage in, we are making decisions for them. As a result, choices are taken away from them.
Sometimes this is warranted; sometimes it is not.
In institutions, there has been a growing philosophy of person-centered care, which doesn’t follow the Golden Rule of treating others as you wish to be treated, but rather the Platinum Rule of treating others the way they want to be treated.
In the case of my 4-year-old neighbor, the people caring for her (her mother and father) know her as a person—her likes and dislikes, her wishes and expectations, and the things she holds dear.
riends and family caring for someone with Alzheimer’s may not know the preferences held by the person in their current state. Confusion, forgetfulness, impaired decision making skills and just trying to cope with changes in their lives may contribute to a person with the disease not being able to articulate the way they want to be treated.
Eighty percent of those with Alzheimer’s live in a community, cared for by friends and family. The demands and stress of caregiving can sometimes result in caregivers trying to simplify daily living by making choices for the person—understandable, of course, but not necessarily in the best interests of the loved one with Alzheimer’s disease.
Engaging with an individual with Alzheimer’s as a new person to be discovered can sustain that person’s well-being by encouraging them to do what they want, choose what they want to be involved in and with whom they want to associate, bringing about feelings of autonomy and independence.
In her presentations, bioethicist Viki Kind talks about the fact that her father’s Alzheimer’s significantly impaired his decision-making skills. In spite of his disability, Kind always found some choice her father could make.
It might be as simple as chocolate or vanilla ice cream or as complex as room A versus room B when he was moving into a memory care facility.
Finding out what matters in life to a person with Alzheimer’s can bring them joy and satisfaction. Depending on your loved one’s abilities, asking them to fill in the blank might help to get the dialogue started.
“I hope that . . .”
“One place I’d like to go is . . .”
“I think I would feel much better if . . .”
“I can help people by . . .”
“What matters to me most now is . . .”
All of us are human beings with feelings and needs. Often the personality of the person with Alzheimer’s is concealed and needs to be drawn out.
In response to the need for a tool to help deliver personcentered care to loved ones, I have developed a set of cards that pose 51 questions about an individual’s wishes and values.
To learn more, go to www.thecardsivebeendealt.com . Each set of cards purchased includes a donation to Senior Concerns.