Picture this: Nine residents of a memory care community are sitting around the kitchen table, holding conversations, laughing here and there, munching on finger sandwiches they just made.
“Cucumbers, yuck!” “Mine doesn’t taste like cucumbers. It tastes like tomatoes.” “I don’t know what you’re talking about.” “Well, I don’t like cucumbers or cream cheese!” “This is the best sandwich I’ve ever had.” “I think it’s peanut butter. But it’s sweet, too.” “Well, you better not eat any more or you’ll spoil your dinner!”
These same residents sit in proximity of each other for every meal every day and hardly say a word.
What’s the difference between now and lunch earlier? They are experiencing rementia now, returning to full personhood as a result of meaningful engagement—otherwise known as an “activity.
The word rementia is not common in the United States, though it is used in a sense akin to “rehabilitated” in the United Kingdom. Thomas Kitwood, PhD, uses it throughout his masterpiece, “Dementia Reconsidered: The Person Comes First.
Purposeful Engagement
With two kinds of bread and sandwich ingredients such as peanut butter, jelly, cream cheese, tomato, and cucumber, the participants are free to choose sandwich content.
“Remember, food handler regulations require that we all wear gloves,” says the Alzheimer’s care consultant. “If you don’t wear gloves, you touch it, you eat it. You are volunteering to make sandwiches for others in the community who didn’t leave their rooms at lunch, and maybe they didn’t eat enough. Some people here need more calories. This is a nutrition program. And, you can eat some of what you make, but not until after we finish!”
Heads nod, a few comment, and one or two look slightly at a loss. The jar of peanut butter and bread are in front of Ruth, who asks, “What do you want me to do?” “Looks like you have the ingredients to make sandwiches,” the consultant says. “Oh, right.” She doesn’t need any further direction and hits it like an assembly line worker. Next to her, the only male volunteer is slathering on the jam. Letting them figure it out, and watching them match their halves, is a sweet, sweet sight.
At another seat, a woman cuts the sandwiches into quarters. It doesn’t matter that some sandwiches are half raisin bread and half whole wheat or oddly arranged. The point of engagement isn’t to achieve perfect results.
Breaking and Revisiting Habits
As the care assistants observe the activity, they are gently reminded not to jump in, especially during clean-up. “Let the residents do as much as possible,” they are told. They step back and continue to watch, peripheral to the recreation, not in control. Throughout the hour, hand gestures are used to remind the caregivers of Summer House at Wesley Palms Retirement Community in San Diego, Calif., who are learning how to do rementia engagement, not to fix, interfere, or exclaim “Oh, no!” or “Not like that, like this.” Those are hard habits to break. The caregivers at this planned recreational session are being trained on progressive approaches that require rewiring the urge to correct unless someone is truly in harm’s way.
Resident Dorothy, who has emerged as the natural leader of the project, starts to gather the empty ingredient bowls: “Should I throw these away?” Now is the time to offer a little guidance. “There’s the trash bin,” says a caregiver as she points toward a waste can. This caregiver is getting the hang of this new method.
Following Dorothy’s actions, others begin to gather the miscellaneous items on the table. The knives, yes knives, are coated with cream cheese, peanut butter, and jams.
“Ugh, washing those utensils is going to be a pain.” “Wipe them off with a napkin first,” says resident Nel as she demonstrates, “then you don’t have to dirty all of the dishwater.” Common sense from her long-term memory.
A Carry-Over Effect
The importance of purposeful activities has been terribly underrated in organized care settings. A difference exists between activities and engagement: During the former, actions are being done toward or at residents, while with the latter, residents are contributing with an objective. When residents are given the opportunity to use skills still intact, their met psychosocial needs have a carry-over effect. Difficult “behaviors” are reduced, staff members experience greater satisfaction, and the overall environment is elevated. The outcomes can be astounding.
Measurable results show up in a reduction of reportable incidences and decrease in 911 calls due to “harm to self or others.” Most importantly, many residents who are consumed with wanting to go home become comfortable in their new communities.
The shift comes from education that emphasizes a new form of interaction between caregiver and care receiver. The biggest component is resident choice, free will, and accountability.
Rementia Defined
The word dementia, broken into syllables, literally means “out of the mind.” Not many people take that description as a compliment. Rementia, on the other hand, is to be “returned to the mind.” The only condition in which someone’s living essence is factually away from the mind is postmortem.
The goal of rementia is not to cure Alzheimer’s disease or restore a person to his or her level of function prior to the onset. Rementia care restores personhood and recreates a person’s experience of life.
For someone who is lost, confused, and searching for what has been lost, rementia care reinforces a person as whole and complete as they are today, where they are today. For rementia to evolve, residents must have a sense of purpose where they live. Caregivers who incorporate methods from Kitwood’s book, such as recognition; negotiation; collaboration; play; stimulation; celebration; relaxation; holding; and, most important of all, validation, will find their responsibilities become less strenuous and more satisfying.
Revisiting Validation
The concept of validation was brought to the forefront in Naomi Feil’s groundbreaking book, “The Validation Breakthrough.” Validation is a huge component of rementia care training that requires an acute shift in caregiver communication.
In class, validation statements are practiced through role playing. “I want to go home,” requires an acknowledgement of the feeling, not the response, “You are home,” or “You can’t go home,” or “You live here now.”
An example of the validation technique is, “You must miss your home. Tell me about that house. Where is it?” Now caregivers are exploring personhood, the history aspect of one’s life, and having a meaningful conversation rather than doing battle. Often, just reminiscing about that home brings a sense of comfort.
Talk about feelings, and don’t argue the facts. For seasoned readers of this article, this is not a new idea. But even the most experienced and educated can fall into the trap of attempting to distract before connecting to the emotion behind the outward expression.
Beware of Malcaregiving
Kitwood also describes malcaregiving, equally important to expose and reprogram. Caregivers do not intentionally provide bad care. Poor habits such as interruption, objectification, disempowerment, infantilization, outpacing, ignoring, imposition, and invalidation come about from the overburdening, overwhelming expectations placed on direct caregivers. Actions such as outpacing stem from the need to be efficient.
Unfortunately, the lack of attention to the emotional well-being of residents, that is, ignoring, leads to increased resistance with activities of daily living care, weight loss, outbursts, and searching episodes, also known as wandering or attempting to elope.
Meaningful engagement, which requires residents to participate in the process, is the cornerstone of rementia care. Experimentation, exploration, flexibility, creativity, and a willingness to branch out into unexplored territory will create new pathways in resident lives.
The paradigm shift necessary to achieve stellar results simply stated is: Dementia says, “HE CANNOT!” Rementia says, “HE CAN!”
Kassandra A. King, BA, NHA, RCFE, is owner of Alzheimer’s Connection, http://alzconnectlamesa.com/, a care consulting/placement company in San Diego, Calif., that also offers Alzheimer’s disease education for professional staff, family members, and the general public. She is the author of “Getting REAL About Alzheimer’s: Rementia through Engagement, Assistance, and Love,” Plain View Press, Austin, Texas, September 2014. King can be contacted at (619) 777-0724 or kakingalzconnect@gmail.com.