Dispelling Dementia Myths

This post was written by Mardoche Sidor, M.D., member of the Committee for Systems Innovation and Transformation at the Group for the Advancement of Psychiatry.

Margaret is an 83-year-old widow who lives alone. She felt her mind was “slowing down” and told her doctor she was worried that this was the inevitable beginning of dementia. After a thorough examination and some gentle questioning, Dr. Anderson began to piece together Margaret’s story. It wasn’t dementia slowing her down; it was a combination of other factors that had begun to add up.

Margaret struggled to fall asleep and woke frequently during the night. Her hearing had waned, and she’d isolated herself because it was hard to be in conversations with more than one person or in noisy settings. Then she began to feel depression cast a shadow.

What is dementia?

An individual with dementia is fully alert but has declined in one or more mental functions they once possessed, such as the capacity to retain new information, navigate familiar city streets, perform mental calculations, engage in fluent conversations, empathize with others, or display socially appropriate behavior.

Dementia can stem from a variety of different diseases, and Alzheimer’s disease is just one of these underlying conditions. Nevertheless, all forms of dementia significantly affect a person’s daily life and can have far-reaching effects on an individual’s family members. Knowledge of dementia is often clouded by myths, including the following eight below. Dispelling them may help speed progress in prevention, diagnosis, and treatment efforts, hopefully improving outcomes for individuals, families, and communities grappling with dementia’s impact.

Myth 1: Aging inevitably leads to dementia and memory loss

Some changes in the normal working of the brain do occur with age, but these don’t disrupt daily life in any substantial way. Normal aging does generally bring with it slower learning, such as more difficulty with the absorption of new information.

Normal aging also may include word retrieval difficulty—occasionally having trouble trying to find a specific word to express oneself. This most commonly occurs at moments when trying to recall a specific name (for instance, the titles of books or the name of a store or street), but later, the names spontaneously pop to mind.

In contrast, significant memory loss does disrupt normal life. Not knowing, for example, the year, season, or the city one is in isn’t part of normal aging. Not being able to recall what one had for breakfast, who won the ballgame, or what was said in an earlier conversation on the phone is very disruptive and not part of normal aging.

In other words, aging does not inevitably lead to dementia and memory loss. Studies show only 3 percent of individuals aged 70-74 develop dementia. While the risk for dementia does increase with age, the chance of having dementia is 22 percent for people between ages 85-89 and 33 percent for those 90 years old and above. Dementia is not a certainty.

Myth 2: Dementia is the same as Alzheimer’s disease

Dementia may be caused by many different diseases, Alzheimer’s disease being one common cause. Other types of dementia include vascular dementia, Lewy body dementia, and frontotemporal dementia. Mixed dementias, in which an individual has more than one type of disease contributing to their dementia symptoms, are very common, for example, Alzheimer’s disease and vascular dementia.

Importantly, there are also treatable causes of dementia, such as Vitamin B12 deficiency, HIV/AIDS dementia, and accumulation of blood between the brain and its outermost layer. Different diagnoses call for different approaches to care. Equating all dementias with Alzheimer’s disease may delay identifying other diagnoses and may affect initiating effective interventions.

Myth 3: Early dementia symptoms are obvious

Initial symptoms of dementia vary from person to person. Dementia’s early manifestations may be subtle and look like depression, the effects of stress, poor sleep, or normal aging.

There are several ways to help differentiate between normal aging and early dementia. They may include:

• Severity of memory loss
• Changes in the ability to understand language or express oneself
• Behavior that is entirely out of character for the individual

Diagnosing early dementia is complex and may require expert opinion or special neuropsychological testing. It is important for people who think they might have early signs of dementia to seek an evaluation from a competent medical or mental health professional.

Myth 4: Dementia is not preventable

While not all cases of dementia can be prevented, scientific evidence supports the idea that lifestyle changes can make a difference between those who develop dementia and those who do not.

Research shows that about a third of cases of dementia are linked to risk factors that one may have control over, such as physical inactivity, sleep, smoking, and high blood pressure. Studies further suggest that lifestyle changes, including engaging in regular physical activity, maintaining a balanced diet, staying mentally active, having a strong social network, and actively managing health conditions, can lower the risk of dementia. Education also appears to offer some protection.

Although age and genetics play crucial roles in determining someone’s risk for developing dementia, a combination of preventive actions does hold promise for reducing the global dementia epidemic. Indeed, there is already evidence suggesting dementia rates have declined, likely because of changes physicians have made in lowering their patients’ blood pressure and decreasing their cholesterol.

Myth 5: Dementia only affects older people

It’s a widespread myth that dementia, including Alzheimer’s disease, exclusively strikes older individuals. Although the risk of dementia does rise with age, dementia can affect people of various ages, including those who are relatively young—in their 40s, 50s, and even younger.

Dementia occurring before the age of 65 is often referred to as “young-onset dementia.” While less common than dementia in older individuals, young-onset dementia introduces distinct challenges as it affects individuals during their prime years when they are working and maybe raising young children

One type of dementia occurring in younger individuals is frontotemporal dementia. This type of dementia can cause apathy, lack of empathy, and changes in personality, including socially inappropriate behavior. Conditions affecting cerebral blood vessels, like strokes, can also lead to young-onset vascular dementia. Additionally, specific genetic mutations can predispose individuals to developing early-onset dementia.

Myth 6: A family member with dementia guarantees offspring with dementia

While genetics do contribute to the risk of developing some types of dementia, family history alone doesn’t determine dementia risk. Research shows that genetics is not the primary factor for many individuals; only 5 percent of Alzheimer’s cases are due to heredity.

Dispelling this myth highlights how genetic inheritance is only one factor and that one’s environment, including general health and lifestyle factors, is extremely important. The 2020 Lancet Commission Report identified modifiable risk factors that can prevent 40 percent of dementia cases. It has been shown that even individuals with a high genetic risk might benefit from targeted prevention.

Myth 7: Dementia can’t be diagnosed while the patient is alive

While it used to be true that Alzheimer’s disease could not be accurately diagnosed in living individuals, this is no longer the case. Definitive diagnostic methods now include brain imaging such as MRI and PET scans. Other types of dementia can also be diagnosed.

Dispelling this myth is vital for timely intervention and care. Encouraging medical evaluation for individuals who have cognitive changes will help ensure timely support and intervention, enhancing quality of life.

Myth 8: There are no treatments for dementia

Contrary to this belief, treatments for dementia do exist. While dementia isn’t curable, it is treatable. Medical advances have led to interventions that can improve the quality of life for those with dementia.

Non-pharmacological approaches like cognitive rehabilitation, speech therapy, physical therapy, music and art therapy, and behavioral therapy help individuals cope and function better. Support is also available for caregivers through group counseling. Medications can be used to enhance mental functioning and, in some cases, slow symptom progression.

Notably, in July 2023, the FDA approved a new Alzheimer’s disease treatment, lecanemab, that shows promise in slowing cognitive decline. Research is continuing, and more treatments and interventions for dementia are expected.

In the case of the example above, Dr. Anderson took steps to address Margaret’s sleep difficulties. She prescribed hearing aids and encouraged exercise. Margaret joined a senior center, where she learned to paint with watercolors. She began to walk regularly and see her old friends. She felt her spirit rekindled.

After several weeks, Margaret’s sense of clarity returned. Although she was 93, she felt “more alive than she had in years.” It wasn’t dementia with which she had struggled; it was the circumstances that had kept her away from living life’s beautiful experiences.

In the golden years of her life, Margaret learned that it is never too late to chase away the shadows of despair, that there’s always a path back to the light, and that the colors of life can bloom anew, even at age 83.