It is easy to think of a person with a dementia diagnosis as being “child-like.” After all, many of the behaviors associated with dementia – mood swings, tantrums, irrationality, forgetfulness, and vocabulary problems, for example – are similar to behaviors exhibited by young children. These surface-level similarities lead many caregivers of people with dementia to unconsciously treat their loved one like a child, which may exacerbate behavior problems and rob the person with dementia of dignity.
Dealing with dementia requires the caregiver to completely reconsider how the dementia patient’s brain functions. It’s not just that a person with dementia has suffered a single substantial setback in cognitive reasoning and acquired knowledge; rather, the person with dementia is continually experiencing these “setbacks,” and over time he or she will continue to regress. Every day, several times throughout the day, it’s as if someone is pressing a “delete” key and obliterating newly-acquired knowledge. Over time, the amount of information being deleted expands further and further back into the person’s memory.
This constant erasure of information means that a person with dementia may have absolutely no recollection of conversations that happened only moments in the past. They are living in an alternate reality. In their reality, they have not been told by their daughter not to go outside just five minutes before. In their reality, the caregiver hired a month ago is a complete stranger. In their reality, their childhood home is still their home, even though they moved away forty years ago. But at least one thing holds true in both versions of reality: in their own mind and in the “real world,” the person with dementia is an adult deserving of respect and dignity. Therefore, the way that person is treated matters to them and will likely have a direct influence on their mood and behavior. Here are some tips to help caregivers avoid some common missteps:
Don’t Argue or Reason.
Family members may try arguing or reasoning to accomplish a goal like convincing the elder with dementia to take a bath. Or they may become exasperated and say, “I’ve already told you three times…” But arguing with a person who has no memory of what they have been told is pointless and will only aggravate both people. And any new information designed to persuade them – “But you need to take a bath because your sister is coming to visit!” – will quickly be forgotten. It can be tempting to try to reason with the person, but it’s important to keep in mind that they are missing some of the puzzle pieces that support your argument. Furthermore, even though that person may rapidly forget all the details of conversations, he or she will often remember the “feelings” of the last interaction with another person. Those feelings will color subsequent interactions. So rather than treating the person like a belligerent child, causing them to feel frustrated and helpless, it’s best to either walk away or reframe the conversation.
Don’t Use Childish Language.
In this article on respectful caregiving for dementia patients, A Place for Mom offers some examples of childish language that people sometimes use when speaking to someone who has dementia. Using words like “diaper,” “bib,” and “potty” rather than adult language (“underwear,” “apron,” and “bathroom”) sounds condescending to someone with dementia. Regulating tone of voice is also important. Just because the person’s memory is incomplete does not mean they are unaware when someone is acting condescending toward them. The person is still an adult and deserves to be spoken to as such.
Don’t Dictate All Activities.
People with dementia generally do best in familiar, structured environments with predictable routines. That said, a caregiver’s opinion of “appropriate” activities for their loved one may differ significantly from the activities that person wants to do. This article by a caregiving daughter, “Don’t Treat an Adult with Alzheimer’s Like a Child,” describes the daughter’s experience of learning to reframe her thinking about her mother’s disease. Like the author’s mom, many people with dementia may want to continue leading active lives rather than finger painting and watching TV. If denied the opportunity to do the things they love, the person with dementia may exhibit negative behaviors. Like any adult, the patient wants to make his or her own decisions about what to do and when to do it. As this daughter puts it, “The caregiver’s main responsibility is to be sure that any activity they choose is safe.” Of course, if they want to drive a car, the caregiver may have to draw the line – but there may be opportunities to compromise, like offering to take them wherever they want to go.
Don’t Expect Progress.
While there are treatments and therapies that can slow the progression of dementia symptoms and/or improve life for dementia patients by addressing isolation, depression, and other “side effects” of the disease, dementia patients cannot recover their ability to make new connections or retain new knowledge. Some caregivers become frustrated because “Mom just isn’t getting it,” which of course she cannot do because new information is perpetually deleted from her mental hard drive. Unlike children, whose brains are developing and can therefore build new knowledge, dementia patients are perpetually losing more and more information. Sometimes it is easier to be patient with children because every negative experience can be framed as a building block of their development. However, this strategy won’t work for the person with dementia and his or her caregiver. Rather than aiming for a goal that cannot be achieved, the caregiver should focus efforts on learning strategies for defusing tantrums, re-directing conversations that are confusing or stressful, and creating a respectful and loving environment for the person with dementia.