Changing the mind-set, changing the outcome
By Kerry Mills, MPA
When a caregiver for someone with dementia strives to control every situation and manage every event, the results will not be beneficial for the person with dementia. In addition, the stress level of the caregiver will escalate, creating an environment with lower-quality care overall. While some caregivers might believe that their management and control of all aspects of their loved one’s life reflect their dedication to the work, love for the person afflicted, and competency, the results of this approach are not positive.
When “caregivers” become “care partners,” outcomes are better for patients and caregivers alike. Shifting the approach to one of partnership results in a more fulfilled loved one and a happier and more relaxed caregiver. Using the care partner model allows for care of the caregiver, something that is usually overlooked using conventional methods of care. Furthermore this mind-set creates an avenue for the person with dementia to give, providing him or her with an opportunity to feel valued.
The approach is altogether different, requiring the care partner to adopt an alternate mind-set. This can occur only with education. The care partner must first learn about the disease, then he or she must allow the loved one to engage life as much as is reasonable, appropriate, and possible. This will take patience, creativity, and a significant understanding of the world in which the loved one now resides. His or her world is not too much different from our world. People with dementia still have feelings, ambitions, routines, a need for fulfillment and mobility, a desire for independence and companionship, and an expectation of joy and love.
While these similarities exist, it is also important to recognize that cognitive impairment causes the realization of these desires to be acquired through different processes. Consider the following scenario: It is a beautiful day outside. The person with dementia (Frank) has a natural desire to want to experience what a beautiful day provides and should not be denied this simple pleasure due to a cognitive issue. Obviously, you can’t just open the door and allow Frank to experience the day unsupervised. A primary goal must be established. In this case, allowing Frank to enjoy the day. And there’s no law that says the care partner (Laura) should not be allowed to enjoy the experience, too.
All that is required is for Laura to venture into Frank’s world instead of insisting that Frank acknowledge the reality of her world. If Frank thinks that the park he is sitting in is a place from his childhood, there is no need to correct him. Such an attempt serves no practical purpose and can only lead to confusion and resultant anxiety for Frank. A better plan would be to engage Frank where he is so that he can enjoy the moment to the fullest. There is nothing to be gained by short-circuiting the loved one’s reality for the sake of accuracy.
This may seem like an oversimplification, but we have been teaching this strategy of care for years and the results are nothing short of spectacular. Care partners who adopt this method of care in every applicable situation report success after success. It is our natural tendency when caring for people with cognitive impairment to want to correct their perception of things, as if this will improve their experience. But it is in fact anything but an improvement and serves only to create unmanageable situations.
It is one thing to correct a developing child regarding misperceptions about his or her environment, but to bring the same standard to bear for someone who has lived a full life and now has cognitive impairment can have tragic consequences for all concerned.
The following situation reflects this potential for harm: A dear little lady, Fran, was sitting in the hallway at the hospital. When her family came to visit, she insisted that she was not at the hospital but rather fishing with her brother (who passed away years earlier). The natural tendency for Fran’s children was to correct her, feeling bad that she did not know the truth. But ask yourself: if you were in Fran’s shoes, would you prefer to be fishing with your brother or sitting in a hospital and told to recall his death?
Instead of trying to convince Fran of the current reality, why not simply accept Fran’s perception of the event and ask her, “Did you catch anything?” In this way you neither lie to Fran nor get frustrated trying to convince her of something she is unable to accept. Instead you advance the relationship by enjoying the time together and sharing a happy memory.
Often families express that they lose something in the relationship when a loved one is diagnosed, but many also say that they gain things they would not have otherwise had. Although dementia is a painful experience for both the person and the care partner, adopting the appropriate strategy of care can lessen the pain dramatically and even create a different flavor of joy.
Kerry Mills, MPA, is an expert in best care practices for people with dementia both in the home and in healthcare residences and organizations. She is a consultant to numerous hospitals, assisted-living facilities, hospices, home care agencies, senior day care centers, and nursing homes. In her 12-year career in healthcare, she has served as executive director and regional manager for numerous long-term dementia facilities. She is an outspoken advocate for persons with dementia, lecturing in Hong Kong, Canada, China, Europe, and the United States. Her book, coauthored with Jennifer A. Brush, I Care (engagingalzheimers.com) is the 2014 Gold Award winner of the National Mature Media Awards.