The complexity of Alzheimer’s and the non-uniformity of the disease from person to person have resulted in a gross misrepresentation of it. Society as a whole has significant misconceptions and expectations about what Alzheimer’s is and how it affects the individual and his or her family.
In our naiveté, we’ve been led to believe that cognitive impairments like Alzheimer’s disease are simply a part of aging. We imagine a senile grandma sitting in a rocking chair — innocent and cute. We see her family coming and going while Grams happily rocks away.
A Tough Road
Things couldn’t be further from the truth for the family who is living with Alzheimer’s. This innocent misconception has completely caught them off guard for the emotional, physical and financial toll this disease will have on them if they don’t remain positive and implement strategies to maximize quality of life every day.
In many ways, Alzheimer’s does start innocently enough — a forgotten name, a missed birthday or an extra turn on the way home from the grocery store. In fact, millions of people who are active in society are living with Alzheimer’s disease or another dementia. Some of them have been diagnosed, while others haven’t.
For fear of being judged and ostracized, individuals are reluctant to share their struggles.
For them, the disease is very gradually taking their confidence, and subsequently, their independence. It might be months or even years before co-workers or even their spouse realize that something is amiss.
Fighting the Stigma
Society’s misconceptions have unjustly created stigmas about dementia. For fear of being judged and ostracized, individuals are reluctant to share their struggles. Consequently, they often start to quietly slip away from family, friends and society.
Alzheimer’s isn’t just Grammy rocking away — it’s our neighbors, friends and family members who are becoming alienated as they fight a disease which is completely misunderstood by society. It’s the families who are struggling to find balance in a life that now involves helping a person with dementia maximize their well-being.
But once we start to learn and understand the disease, a new but also inaccurate picture is painted — one of only loss and sadness. For decades, the medical community has been painting a dreary and negative image of the person with Alzheimer’s disease.
Clinical models, which are used to track decline, focus on loss. These models have, unfortunately, become guides for family caregivers to perceive what lies ahead. But this often creates a self-fulfilling prophecy as families expect the worst while anticipating the next stage of decline.
These bad expectations obscure the family’s opportunity to embrace life together and defy the stereotypes and stigmas. While loss and grief are definitely ongoing aspects of the disease, they aren’t how Alzheimer’s should be portrayed.
Sure, it’s one of life’s biggest challenges. But as we know, a positive attitude is one of humankind’s best weapons against any adversary. As a society, we must reframe how we see and present Alzheimer’s disease to others.
People who overcome the initial wave of emotions are able to live positively with Alzheimer’s while remaining actively engaged in society for many years. And while people with more advanced dementia have more challenges, they still have feelings, desires and a yearning to be loved.
Also, neighbors and friends need to understand and have compassion for the family caring for a loved one with Alzheimer’s, because this family has lot more to handle than a small bout of senility.
If we continue to use negative terms and communicate a negative image of Alzheimer’s, the next generation will also unfairly fall victim to this misconception.
Reframing how society sees something takes generations. But it starts today with the language we use and how we convey our message to others.