Improving dementia care requires a change in mindset
Editor’s Note: Last year, Paul Solman reported on artisanal entrepreneurs — individuals carving out their own careers, and, if you believe Harvard economist Lawrence Katz, saving the middle class along with them. Paul met the typical hipsters making their own chocolate and popsicles in Brooklyn. And then he met Kerry Mills, who got so creative with her career, she created a new profession. Mills is a dementia coach. “There’s a ton of jobs out there that you just have to go figure it out,” she told Making Sen$e last year. “You have to kind of craft it in your community.”
On Thursday, we revisited a part of their interview that didn’t make it into the piece: Paul shared some of his own frustrations as a caretaker for his parents near the end of their lives, and Kerry offered advice for how to talk to a loved one suffering from dementia.
In this essay, Mills shares more ideas for caretakers on how to better engage with patients who have dementia.
Dementia is a symptom or set of symptoms. It is not an actual disease, but a term used to describe a group of brain disorders that causes a loss in cognitive abilities such as memory, language, abstract reasoning, and judgment, to name a few. Alzheimer’s disease is the most common cause of dementia.
Since the term “brain disorder” is used in the definition of dementia, most people are very confused about how to help people with the condition. Some even become intimidated by the definition, furthering their negative reaction to the person diagnosed.
The phrase “brain disorder” also projects a sense that the person with dementia has lost his or her mind to one degree or another.
Because of this confusion, people with dementia, more often than not, do not receive appropriate care. In fact, some care techniques exacerbate the condition and cause the person to engage in problem behaviors.
Consider the case of Jane, who lives in a nursing home. Every time a staff member brought her to the shower, she screamed, yelled and was resistant to care. Jane’s obstinacy was, of course, considered a terrible “behavior.” However, two easily applied intervention techniques in her care have led to significant changes in her behavior. We did not use medications nor did anyone tell Jane to stop yelling and screaming, as is typically the case.
The first intervention was the manner in which Jane was brought to the shower room. It is common practice to undress nursing home residents while they are in their rooms, place them on a shower chair, cover them with a sheet and then wheel them from their bedroom to the shower room. Most of us would find this to be absolutely humiliating and embarrassing. Jane’s behavior told us that at the very least, she was not happy. Jane now walks (in her pajamas and bathrobe) to the shower room. This has minimized her resistance greatly because she is not upset for 10 minutes before getting to the shower. Since she is calmer, the staff is calmer.
This makes the second intervention work even better. The staff now talks with her about what is going to take place and includes her in the decision rather than dominating the situation and forcing her to do something that makes her uncomfortable. They turn on the water and then ask her if the temperature is to her liking. Next, they ask her to take off her PJs and offer to help her so she doesn’t get them wet. Once in the shower, they ask her to participate, and because she is calm, she is able to hear them, respond to them and participate in her own shower.
As you can see, two small interventions are not difficult, require no additional work or effort, and have a very high success rate. They do, however, require people to understand that a person with dementia is still a person. We shouldn’t be surprised that people with dementia react the same way we would if we were in their situation. The good news is that if we treat people with dementia the way we would want to be treated in the same situation, we will be more inclined to interact with them more appropriately.
Having cared for this unique population, in one capacity or another, for the past 14 years, I can assure you that people with dementia are not losing their minds or going crazy. They are the people they have always been, albeit with some expressive and memory-retrieval limitations. Let’s face it, we all have these limitations to some degree; the person with dementia just experiences them to a greater extent.
This is not to say that I am minimizing the condition. On the contrary, it is a frightening state to be in or to witness a loved one experiencing. The onset of dementia creates significant upheaval in the lives of all concerned. However, the upheaval can be minimized and managed through education.
We don’t achieve these changes in attitude by waving a magic wand. It takes a deliberate decision by the care partner to abandon familiar, but inappropriate, methods of care in exchange for new and effective approaches specifically designed for people with dementia. Change is difficult for all of us, but the positive results of dementia-specific care reinforce the need to change and increase the desire for more hands-on training; success is the best motivator. It’s a dynamic that is difficult to visualize – one has to experience the smiles and behavioral changes in a person with dementia to fully appreciate the new strategy.
Families must demand this quality of care for their loved ones and must be willing to familiarize themselves in best-care practices. When the health care industry discovers this shift in, might I say, consumer demand, they will respond accordingly.
The vast majority of professional caregivers I’ve known want to provide excellent services and see their charges enjoy life to the max. Many extended care organizations want to do likewise, but cost becomes a factor. I’m not oblivious to this consideration. However, cost can be mitigated with the implementation of an effective program that satisfies the unique needs of the memory-impaired, thereby establishing the organization as an attractive resource for families seeking an alternative to personally caring for their loved one or for those looking to create a care team for the person with dementia. This can be accomplished in a residence or engaging the services of a home-care agency.
Successfully caring for people with dementia requires a change in mindset for families, professionals and all the ancillary service providers. Only then can we hope to have an environment that reverses the tendency to maintain a one-size-fits-all approach for the care of our elderly. Such an environment is not out of reach.