“That’s enough of this,” my occupational therapy client, MaryAnn tells me when we try to work on one of the 100 piece jigsaw puzzles that she has enjoyed doing for many years. Her words do not tell me but her expressions and demeanor does — she is frustrated that she can no longer do the puzzle. Due to the effects of her dementia, she would rather sit quietly in a chair than submit herself to activities that blatantly show how confused she is.
Inactivity for persons with dementia
Dementia impacts a person’s ability to engage in occupation or everyday activities, due to symptoms that include memory loss, difficulty planning and problem solving, and decreased initiative. They need to rely on others to create periods of engagement. Richard Taylor, PhD, a psychologist diagnosed with dementia and author of Alzheimer’s From the Inside Out, says persons with dementia “cannot by themselves redefine a new sense of purpose for themselves… They will need others to find [and] create activities of daily living that lead them to a sense of self-fulfillment or their sense of purpose… Persons withdraw prematurely because it is easier, safer, and they don’t know what else to do.”
Studies have shown nursing home residents with dementia spend 70 to 80 percent of their time with nothing to do. “I’m dying of boredom” was the statement made by a gentleman living in an Alzheimer’s care unit to Wendy Wood, head of the department of Occupational Therapy at Colorado State University.
According to research conducted by Wood and published in the American Journal of Occupational Therapy in May 2009, the remaining cognitive, social, and emotional capabilities of persons with dementia living in Alzheimer’s units were rarely tapped into. This promotes “excess disability” or disability beyond what is directly attributable to the disease itself. This could lead to a more rapid decline.
As concerns are raised about the use of certain medications to manage behaviors in persons with dementia, new approaches to care are being trialed. Activates such as music, dancing, art, and storytelling are all approaches that have been found effective in the care for persons with dementia.
The common element in all of them is engagement — or doing. Even routine tasks are beneficial for those afflicted. Having the person help with dressing, setting the table, getting the mail, or answering the door are all tasks that can be set-up and directed, even if it is the only part of the task.
Humans are occupational beings. We each choose to do things each day that make us who we are and that give meaning to our lives. Dementia disrupts this flow. For these people, it threatens their well-being and personhood. Targeted care that incorporates daily engagement is key and has many benefits.
Benefits of activity engagement, per numerous research studies, include cognitive stimulation, improved sleep, better social connections, reduced anxiety, increased quality of life and self-identity. Also, activity engagement decreases caregiver burden and may help to manage behaviors without medications.
How to engage persons with dementia
In order to prevent excess disability and reap the benefits that engaging in activity can afford, persons with dementia need caregivers to provide opportunities that tap into their abilities on a daily basis. This can be a challenge for the caregiver — which may be a family member, home health aide, or other facility staff. The caregiver may not know how to go about it or may have limited time to do so.
So here are three key elements you need to know. Remember, the “3 R’s” of education? Reading, ‘Riting, and ‘Rithmetic? Let’s replace those with these 3 R’s — Routine, Reduce, and Reassurance.
Persons with dementia do best with routine. To help bring some order to a confusing world of forgetfulness and disorientation, the person needs the same activities done in a typical order and timeline each day. What words best for you may not be what works best for that person. Usually, going with their flow will make the day easier for both of you.
Think of incorporating different types of activities into the typical day. For instance, try “self-cares,” such as dressing or bathing. Even if the person needs help, let them do the few steps that they can, like wash their face after you get them started with the motion. Also try something social, such as eating breakfast together, something physical, such as taking a walk, and something sensory, such as smelling the garden flowers or listening to music. Also, try to incorporate activities based on the person’s past interests.
Persons with dementia have short-circuits in the way their brain works. They need things to be reduced, so that they can work their way around short-circuits: reduction in the number of steps of the task; reduction in the directions given for the task; and reduction in the level of abstractness of the task. The level of reductions that need to be made will vary, depending upon the extent of the deficits or short-circuits that person has.
Examples of how to reduce include using multiple choice instead of open-ended questions, playing a game with only matching involved, and using short, simple sentences to direct the next step.
The person with dementia may at time be reluctant to participate when you ask them. This may be due to fear of failure, as mentioned above. A more reassuring way to ask him to do something is to ask for their help. This often is more successful.
Again, offer reassurance throughout the activity and after — “You are doing great! Thanks for your help!” — gives the person pride in that moment, a feeling that can last long after the activity.
As any good occupational therapist would do, I did not leave MaryAnn to sit in her chair, unengaged. I modified the activity to meet her needs. MaryAnn could do puzzles with less pieces and less detail in the picture, for example. She once again was able to enjoy what makes her who she is.
Monic Heltemes is a practicing occupational therapist at MindStart. This article first appeared in a 2011 issue of Minnesota Good Age. We may receive a commission via some links on this page – at no cost to you.