Judy and Charles Stare are a retired couple, living out their lives in the countryside, just outside of Lancaster, Pa. 

Around four years ago, Charles went out one day and drove to the store. An hour later, Judy received a panicked phone call from him asking her how to get home because he had completely forgotten. In that moment, Judy became her husband’s caregiver and she has maintained that responsibility ever since. 

The story of Judy and Charles is just one of many others. 

According to the World Health Organization, there are 55 million cases of dementia worldwide. Along with that, another 41 million cases go undiagnosed, according to Alzheimer’s Disease International.

One reason people living with Alzhiemer's and other dementias go undiagnosed has to do with a lack of adequate training for primary physicians. A study done by the NCBI confirms this, stating that education and training done within the dementia workforce is poorly understood, and that dementia is rarely considered when creating new medical programs. 

A main underlying reason for this, is that there is a lack of general existing medical research regarding dementia, and a variety of results when studying it, according to the NCBI. As the research indicates, “Overall existing reviews consistently note the generally poor quality of existing research and variability in results.”

Although there is a lack of medical knowledge on dementia care options, there are benefits from dementia training and education resulting in noticeable changes like staff knowledge and overall attitudes. 

Diane Grumbine, a registered nurse and former staff development coordinator at a care facility, stated that she purchased training materials from author Teepa Snow to share with her fellow staff. “She had some videos that you could watch for free. Then I ended up ordering some of her material so that I could share it with the other staff.” When asked if she found these helpful, she said that, ”I truly believe that [my staff] benefited from the education.”

Like Diane, Amy Stoner is a care professional. She has been a manager in the Dementia Care Unit at the Country Meadows Retirement Community in Hershey, Pa., for a little more than 10 years. Her job is to oversee residents who are showing symptoms of early memory loss. She helps them structure their day, and in her role, she also helps to assess residents’ cognitive abilities to determine where they might be, condition wise, with their dementia.

Stoner does not believe there are enough resources to support family caregivers of people living with dementia (PLWD). “Families are really struggling,” she said. “Even as far as having family members help out.” 

Stoner emphasized the lack of affordable trained care providers to assist family caregivers. “Support prices range from $21-$24 an hour, and it can be really difficult to manage that,” she said. “Some people with dementia need 24-hour care and they just can’t get that.”

Beyond funding, Stoner sees the need for an increase in understanding about the nature of Alzheimer’s disease and other dementias. “I just feel there’s definitely a need for education,” she said. “Right away, for the patient to be diagnosed properly and early so that families would know to bring them in to start treatment. And so that families would know how to take care of them, along with [finding] resources.”

According to an employee for a large pharmaceutical company who would like to keep his identity private, dementia care is lacking because it is not well funded and resourced. “I think the issue is the resources,” he said. ”Who is going to do the work? Who is going to pay for it?”

Primary care physicians, he said, are not. Instead, he goes on to explain, physicians who specialize in Geriatrics (eldercare) are more adept. “They are better equipped, and they are more aware of the network that is out there to help the patients.” Right now, though, he said, “It falls on the state and local/county governments to do this work. They are understaffed, underfunded, and spread too thin.”

This source knows from personal experience the trouble with finding trained professionals to diagnose and support people with dementia. His 95-year-old mother has been in nursing care for more than five years. He has had to figure everything out himself. He stated that the only interaction that he's had with any medical agency was, ”concerning her ability to pay, and that she was paying what she could.” He continued that, ”It was all the wrangling around the dollars, but not so much about the care.” 

The Massachusetts General Hospital, based in Boston, Mass, recently started a program designed to  help doctors diagnose early signs of dementia. “Some people feel like there’s not much we can do for dementia,” said Dr. Erin E. Stevens, a geriatrician at MGH. As a result, she said, some doctors are nervous to officially give a diagnosis. Why diagnose when there are no effective treatments available?

But now due to a recently passed state law in Massachusetts, Bill H.4116, it is required that all physicians are to disclose a diagnosis of Alzheimer’s or other dementias to the patient or a member of their family.

The program at Mass General embeds a dementia-care team within the hospital’s primary care practices. The pilot program set up is simple: If a doctor suspects any signs of dementia from a patient, that doctor will then turn to a member of the dementia specialist team in the office. Then, the specialists will come in and help confirm the diagnosis. If the diagnosis is official, the doctor and the specialist will refer the patient to a social worker, who will then help the patient and their family members arrange the appropriate services and access to the right resources. 

Because this was a pilot study at Mass General, data about its success is not yet available. Doctors affiliated with the hospital are hopeful, though, that it will positively influence their patient care practices. 

Another reason it can be difficult for medical professionals to issue a diagnosis of cognitive impairment is because of the eventual and inevitable end-stage of the condition. While dementia is not fully confirmed to be a terminal illness, there are studies that indicate it should be. 

 

In Stoner’s professional opinion, Alzhiemer’s and other dementias are terminal. “It affects how they eat and swallow. They can have a hard time with their eyesight. Pneumonia, and even their organs can shut down,” she said. “It’s the sixth leading cause of death. It’s really sad.”

Stoner went on to say, “If you think of dementia as an umbrella, Alzheimer’s is the number one  leading dementia that is under it, and around 70 percent of people with dementia would have Alzheimer’s.” 

The CDC lists Alzheimer's and other forms of dementia as the sixth leading cause of death in the United States, resulting in the deaths of around 121,499 People in 2019.