Adopting a New Direction in Dementia Care

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.