November is National Alzheimer’s Disease Awareness Month and an opportunity to reflect on ways we can support those with an Alzheimer’s disease diagnosis, and measures we can take to reduce the chances of developing Alzheimer’s ourselves.

Many people we’ve spoken with say that once they mention they have Alzheimer’s disease, people respond with an expression of pity. People want to help, but often distance themselves from the person who has the disease, as well as from the family member giving them care, leaving both feeling isolated.

We know that this type of distancing is not done maliciously, but out of discomfort and fear of the unknown and fear of being a burden to a challenging disease process. The irony is that the person with Alzheimer’s—their friend or family member who they’ve known for years or decades—has already had Alzheimer’s for five to 20 years ahead of their recent diagnosis.

Alzheimer’s disease is broken into five phases, they are:

Preclinical: No symptoms but possible biological changes in the brain.

Mild cognitive impairment: Very mild symptoms that may not interfere with everyday activities.

Mild dementia: Symptoms interfere with some everyday activities.

Moderate dementia: Symptoms interfere with many everyday activities.

Severe dementia: Symptoms interfere with most everyday activities.

Why are these stages important to know? In the U.S. an estimated 60% or more of Americans go undiagnosed. Many will receive a diagnosis when they’re in the last two phases of the disease, and generally when they’re in crisis.

There are many reasons why people choose not to get checked or diagnosed: the overall negative stigma around the disease, lack of knowledge and understanding about the signs and symptoms, absence of testing or resources in the areas they live, and the sense of worry about the potential outcome of a diagnosis.

The stigma around Alzheimer's disease has always been prevalent as many people see this type of diagnosis as being only for elderly, those who are sick, or as the absolute worst thing that can happen to a person.

According to an article from the National Institute of Health, “The perception is that (Alzheimer’s disease) patients have little to no quality of life, due to their disease, which may lead to a loss of independence and dignity.” Other common stereotypes include being burdensome, incompetence, and not being able to contribute to society. 

Society's view on an Alzheimer's diagnosis is a harmful one, due to many people not understanding the cause or progression of the disease, but it is not just the common population that holds this view. Many people within the healthcare field also perceive the disease this way. A survey of primary care providers reported that “Nearly 2 in 5 (39%) of physicians report that they are ‘never’ or only ‘sometimes comfortable’ making a diagnosis of Alzheimer's or other dementia.”

It’s not all negative, though. There are many resources and opportunities that can help people with an Alzheimer’s diagnosis improve their quality of life. A few examples of things they and their loved ones can do include, staying connected and communicating regularly, maintaining a healthy diet, staying active and exercising regularly, staying social, and living in a safe and calm environment. 

Resources:

• November is National Alzheimer’s Disease Awareness Month. Read the proclamation.
• DHW resources for Alzheimer’s disease and related dementias.

Tiffany Robb is health program manager for the Alzheimer’s Disease and Related Dementias Program in the Division of Public Health at DHW. A self-described compassionate extrovert, she’s had a diverse career that’s included personal training, business ownership and management, teaching, research, and project management. Tiffany finds working on brain health, Alzheimer’s, and dementia an honor and a tribute to family members who have been impacted by dementia.

Brooke Zander is an intern working with the Alzheimer’s Disease and Related Dementias program in the Division of Public Health at DHW. She’ a student at Boise State University working on a Bachelor of Health Science degree, with expected graduation in December 2023.

The Idaho Department of Health and Welfare is dedicated to strengthening Idahoans' health, safety, and independence. Learn more at healthandwelfare.idaho.gov.