An estimated 6.2 million Americans age 65 and older are living with Alzheimer’s disease, and it’s estimated that by 2050 the number will reach 12.7 million. The fight for prevention and a cure endures. While that fight is a necessary one, it isn’t the only fight.
The battle I’m speaking of is about making a shift in how people with Alzheimer’s disease and related dementias are viewed and then ultimately treated, cared for and integrated into our communities. When a person living with dementia becomes “stigmatized,” it’s difficult for him or her to be perceived as anything but a stereotype. This can lead to experiences of isolation, despair and hopelessness. Pushing back against the stigmas related to dementia is critical, and people with dementia are speaking out.
People living with dementia have demonstrated that having dementia is about the continuation of living life to the fullest, of maintaining a sense of meaning and purpose, and of fulfilling needs that are at the core of who they (and all of us) are.
People living with dementia teach that everyone is mortal, and that living life is about experiences and relationships — that never changes.
Yet, many see a person with Alzheimer’s disease or a related dementia as someone “less than” and as someone who can no longer contribute. For instance, current approaches to care often exclude people living with dementia from decision-making.
That’s in part because one symptom of dementia is a change in verbal communication skills; society often marginalizes those who can’t communicate or who communicate differently. People with dementia are often perceived as incapable of communicating their experiences, and thus unable to make meaningful contributions to their own lives and the lives of others.
Similarly, behavioral expressions from a person living with dementia, such as anger or agitation, cause that person to be labeled as “bad,” “challenging” or “diseased” instead of as simply frustrated at being unable to communicate effectively or adapt to a confusing environment.
As an example, it’s not uncommon for a person living with advanced Alzheimer’s to repeatedly cry out, “Help me, help me.” A nurse or staff person may respond to this by assessing whether the person is hungry, wet, in pain or has any number of physical conditions. If all these conditions fail to uncover a possible cause, the person may be labeled as difficult or attention seeking. As a result, nothing is done to address the underlying problem, and consequently the cries may get louder.
For people with dementia, the cries may be the only way they have of communicating. “What are they trying to communicate?” you might ask. I would strongly suspect they’re seeking a reassuring human connection.
As a society, we tend to focus on the loss in cognitive powers that affects people living with dementia, but we fail to remember that the need for connection and the capacity to experience and feel as all human beings do is largely unaffected.
There’s some good news, however. A cultural shift is unfolding. I’ve seen progress, but there are still have many obstacles to overcome.
The first step is to dispute dementia-related stigmas and start seeing a person living with dementia as a full and complete human being. Another shift will take place when people living with dementia are embraced and immersed into society in a way that accommodates instead of isolates. And someday, we will come to a place I believe where people living with dementia are no longer defined by their diagnosis; they will simply be.
Angela Lunde, M.A.
Angela Lunde, M.A., has worked in dementia care for nearly 20 years and is the co-medical editor of the Mayo Clinic on Alzheimer’s Disease and Other Dementias. She serves as co-investigator of the Outreach, Recruitment and Education Core in the Mayo Clinic Alzheimer’s Disease Research Center, where she focuses on the emotional well-being and quality of life of those living with dementia and their care partners.