Does Raising Dementia Awareness Improve Patient Outcomes?

Dementia, now formally referred to as (MND), is typically framed as a progressive, debilitating medical condition. It is seen as a disorder with many potential causes, not all of which are known, and is generally considered incurable. Despite this, treatment to slow the progression of dementia is possible in many cases, and 3.8 billion dollars are spent on dementia research each year in the United States alone.

MND was not always considered a medical condition in the same way it is today, and the substantial gains in treatment options, dedication to research, and community acceptance are due in large part to advocacy groups working to promote an understanding of the condition. This article will explore how increased dementia awareness can improve the quality of life for those with the condition and their loved ones. 

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Defining the term major neurocognitive disorder

Major neurocognitive disorder (MND) encompasses a , including those due to vascular problems, frontotemporal disturbances, and traumatic brain injury. Until fairly recently, the term “Alzheimer’s” was used synonymously with “dementia,” but MND can include dementias other than those caused by the pathophysiology noted in Alzheimer’s disease. Because of this, MND is typically diagnosed as a specific subtype (such as MND due to Alzheimer’s disease or MND with Lewy bodies). 

Common features and subtypes of MND

MND subtypes have common features that form the main diagnostic criteria of the disorder. To be diagnosed with MND, a person must demonstrate significant cognitive decline in one or more cognitive domains, such as executive function, learning and memory, language, or complex attention. The cognitive deficits may interfere with the person’s ability to function independently and complete everyday activities. The cognitive decline observed in MND tends to be characteristic of all dementias, with the subtype generally describing the physiological cause of the decline. 

The term “Alzheimer’s disease” (AD) is still commonly used because it is widely recognized and accounts for 60% to 80% of all MND cases. 

A brief history of major neurocognitive disorder and dementia awareness in medical science

The term “dementia” was first used in the 13th century, but it wasn’t until the 19th century that individuals with the condition were recognized as medical patients. Some experts believe cases of MND were significantly lower throughout history than they are today. One study that examined ancient Greek and Roman civilizations found that physicians of the time rarely, if ever, reported patients with symptoms that would align with MND or Alzheimer’s disease. Across all preserved historical data, researchers could only identify four cases of severe cognitive decline that might represent MND.

Dementia as a brain disease

Once MND was recognized as a specific pathology in the early 19th century, researchers worked to explain its cause and identify appropriate treatments. It was first framed as a brain illness, a theory spurred forward by the discovery that a syphilis infection can cause severe disruptions within the brain, then termed “syphilitic insanity.” In many cases, the cognitive impacts of syphilis could be reversed with appropriate treatment, which gave researchers of the time hope that MND could be similarly prevented or reversed. 

The theory that MND was due to physiological shifts within the brain remained prevalent until the mid-20th century. From the early 1900s to the 1950s, those with apparent MND were often classified as insane and placed into state-funded hospitals. By the 1930s, people with dementia symptoms were among the most prominent groups admitted to those hospitals. Because their condition was seen as resistant to treatment and incurable, hospitals with large populations of patients with a dementia diagnosis were in danger of being seen as custodial facilities rather than institutions that provided active treatment. 

Psychosocial theories and dementia awareness

As hospitalizations of those living with dementia continued to increase, research suggested that a psychosocial cause, rather than a physiological one, might be responsible for the features of MND. Social gerontologists in the 1940s and 50s theorized that MND was due to a failure to adequately adjust to the aging process. According to their theory, a person who couldn’t adjust to the social demands of aging was likely to experience senile mental deterioration. However, if programs and policies were developed that kept elderly people engaged, they believed that deterioration might be postponed or avoided. 

Psychosocial theories of dementias were largely an indictment of society’s failure to meet the needs of the elderly. One advocate for social programs for the elderly, Jerome Kaplan, described elderly people with MND signs as “those whose minds are allowed to die before their bodies.” Framing MND as a psychosocial problem was a primary factor that prompted policy changes that supported the elderly, such as the Medicare program and the Older Americans Act of 1965. 

Return to biological foundations and early advocacy

In the 1970s, major advancements in neuroscience prompted a shift in perspective regarding the origins of MND back to a biological cause. Rather than seeing dementia as an age-associated condition (commonly described as “senility”), researchers proposed that cognitive decline in the elderly was due to pathophysiology within the brain. One paper, published in 1976, nearly 70 years after Alois Alzheimer’s famous discoveries, argued that two conditions, Alzheimer’s presenile dementia and senile dementia, ought to be combined into one condition: Alzheimer’s disease. 

By 1980, Alzheimer’s had become a household term, referring to all types of dementias, many of which had yet to be discovered. The Alzheimer’s Association, an organization dedicated to spreading knowledge and promoting research of what is now called MND, was founded the same year and still operates as an advocacy group representing people living with MND as well as their caregivers and loved ones. 

How advocacy helps people living with dementia and Alzheimer’s disease

Being aware of early diagnosis of MND for improved health outcomes

Innovations in brain-scanning technology and symptom identification, as well as a better understanding of the biological origins of the early stages of MND, have led to diagnostic tests that detect it earlier than was previously possible. Researchers hope that if Alzheimer’s and other forms of MND can be diagnosed early, future treatments may be able to target the condition before brain damage has occurred. 

Medical treatment

The first medications to treat MND appeared in the 1990s, and although they have limited effect, some medications have demonstrated utility in MND. Although no medication can reverse or halt the condition’s progression, it’s now possible to give those diagnosed more time before cognitive decline becomes severe.

Behavioral and psychosocial treatment

Research into non-pharmacological treatments for MND led to the development of memory care facilities, which are residential centers that provide care to those affected by MND and other forms of memory impairment. Memory care center staff typically receive extensive training on how to support those with memory impairments. The infrastructure is often designed to support those experiencing cognitive decline, and there are typically higher levels of security to prevent wandering. 

Prevention 

Currently, there is no known way to prevent MND definitively, but research suggests that it may soon be possible for those at high risk of developing the condition to take proactive steps to reduce the likelihood of MND emerging. 

Better support for caregivers of those living with dementia and Alzheimer's disease

The work of advocacy groups has likely substantially reduced the stigma surrounding Alzheimer’s and other MND subtypes. Most people with the condition are cared for by their inner circle, typically friends and family. Today,  for those affected by a loved one’s MND are commonplace. Emotional and practical support is more available than ever before, and many families can use those tools to improve their loved one’s quality of life. 

Staying aware: Seeking additional support after an MND diagnosis

If MND impacts you or a loved one, it can often be helpful to seek help managing the complex stressors and emotions that can arise. Reaching out to friends and loved ones is often helpful, but it is also sometimes beneficial to speak with a third party, such as a therapist or counselor. An increasingly popular way to obtain support is through online therapy, wherein you and a therapist meet virtually online. 

Health benefits of online therapy

Online therapy offers several benefits over traditional therapy, chiefly the ability to attend therapy from home or another location, removing the need to travel to a physical office. Online therapy is also often more affordable than in-person therapy without insurance and may offer a larger pool of therapists than are available in your local area. 

Online therapy for MND support

Online therapists practice using the same  as traditional therapists. They are qualified to help with many challenging situations that may arise when helping someone with MND, such as anxiety, excess stress, and grief. While some have raised concerns about whether online therapy is as effective as in-person therapy, recent research suggests that, in most cases, online therapy is just as effective as in-office therapy.