Science & Education
How The U.S Healthcare System Fails its Dementia Patients
Dementia is an often misunderstood and stigmatized disease affecting close to 7 million people in the United States alone. While many assume that dementia is a singular affliction for the elderly, it is actually a general term used to describe symptoms of a variety of diseases that cause a loss of cognitive ability, including memory, language, and problem-solving skills. The most common form of dementia is Alzheimer’s, which accounts for 60-80% of cases. However, there are other forms, including but not limited to vascular, Lewy body, and frontotemporal dementia.
Because dementia can take many forms, it is difficult to provide a blanket treatment plan for all those living with dementia. It is a common saying that, “When you meet a person living with dementia, you have only met one person living with dementia.” This complexity underscores the need for a more tailored approach within our healthcare system, which currently struggles to adequately meet the diverse needs of dementia patients.
Our healthcare system falls short in accommodating patients with dementia, particularly in the areas of healthcare worker training, early diagnosis, and avoiding unnecessary interventions. It is crucial to make sure that services and support are available and effective for every group in our society in order to achieve health equity.
Fighting The Dementia Stigma
Stigmatizing beliefs surrounding dementia and Alzheimer’s create significant barriers to receiving adequate healthcare with dignity and respect. According to the World Health Organization, stigma against older people with dementia is widespread, with far-reaching consequences.
Those diagnosed with dementia often feel marginalized and regarded as “less than” by society. The cognitive decline and memory loss associated with the disease are inherently isolating, but the negative social response to these symptoms further erodes their sense of dignity and quality of life.
Ageist attitudes also contribute to poor practices among healthcare professionals. Many view dementia as an inevitable part of aging that cannot be treated, an attitude that can often lead to neglect, inadequate care, and premature institutionalization.
Ageism can also lead to missed diagnosis of Alzheimer’s and dementia in older adults because symptoms such as memory loss are seen as a normal part of aging. These symptoms that would be checked right away in younger patients are often ignored. The Alzheimer’s Association recognizes that doctors and patients aren’t discussing memory loss as often as they should. Instead, most primary care doctors wait for the patient or a family member to bring it up before addressing the issue.
Access to Healthcare
Access to healthcare is a critical issue for patients with dementia, who often face significant hurdles to receiving timely and effective care. From delayed diagnoses to a lack of specialists and a fragmented healthcare system, these challenges contribute to poor outcomes and increased stress on patients and their families.
Delayed Diagnosis
Missed and late diagnosis of dementia is one of the biggest reasons that patients with dementia do not receive proper health care. When dementia is caught early, cognitive decline can be slowed, functional abilities can be maintained, and admission to institutional care is delayed. Many new treatments for Alzheimer’s and dementia are tested in mild disease, so early diagnosis can also maximize patients’ access to these new treatments.
Unfortunately, according to a recent study that evaluated participants for dementia, 62% of people with dementia have not received a dementia diagnosis from their healthcare provider. Diagnostic delay is even more common with non-English speakers, African-Americans, and those who suffer from other health issues.
Lack of Specialists
Once diagnosed, patients with dementia face another obstacle to their care: dementia neurology deserts. A neurology desert is an area that has too few neurology specialists relative to its growing population of individuals with Alzheimer’s and dementia. Within the United States, 20 states have been labeled dementia neurology deserts.
Because of this lack of specialists, it is crucial that primary care providers are armed with the proper training, education, and resources to correctly diagnose and treat those with Alzheimer’s and dementia.
Disconnected System Infrastructure
The healthcare system that dementia patients must navigate consists of many different care providers. These providers can consist of primary care, specialists, home care, and community agencies.
Although each of these providers is committed to delivering quality care within their respective fields, a 2020 study of North American dementia care revealed that there is a significant lack of collaboration between them.
This lack of communication results in dementia patients and their caregivers having to navigate the system on their own, repeat information for each new visit, and receive fragmented care that isn’t well-coordinated with other services they are receiving. This disconnected system is exacerbated by remote geographical locations where access to services and collaboration between service providers is even harder to come by.
The Treatment of Dementia Patients with Comorbidities
People with dementia often have more chronic conditions than people without dementia. The existence of more than one medical condition or disease is known as comorbidity. The Centers for Medicare & Medicaid Service reported that over 95% of Americans with dementia have another comorbidity, and over 50% have five or more comorbidities. Some of the most common chronic conditions of people with dementia include diabetes, hypertension, depression, stroke, and vision impairment.
When comparing the treatment and outcomes of these comorbidities in people with dementia versus those without, there is a clear disparity. For example, more than 50% of patients in the United States with moderately severe dementia who are admitted to the hospital with a hip fracture die within six months, compared to just 12% of patients without dementia. Of dementia patients admitted to the hospital with pneumonia, 53% die within six months, compared to 13% for cognitively intact patients.
Additionally, patients with dementia often find it harder to communicate things like pain and are often medicated incorrectly. When dealing with hip fractures, patients with dementia were only prescribed one-third of the pain medication that patients without dementia were prescribed.
People with Alzheimer’s dementia are more likely to be hospitalized, have longer hospital stays, and require more post-acute skilled nursing care and home health services compared to similar adults without dementia.
Healthcare professionals outside of mental health often don’t fully understand the needs of people with dementia. As a result, their care is often inadequate, with issues like duplicated services, delays in identifying problems, and unnecessary treatments.
There is no “one-size-fits-all” treatment plan for those with dementia experiencing comorbidity, but healthcare workers must be well-equipped to treat all dementia patients just as effectively as they treat those without dementia. Unfortunately, little training or research has been done into what “good practice” looks like for dementia patients living with comorbidities.
Cost of Care
Dementia care in the United States presents yet another challenge for patients and their families. The rising costs of care, combined with limited support from public programs, create financial stress that will only increase in the coming decades.
Financial Burden
The cost of dementia care can be a huge financial burden on individuals with dementia and their caregivers. For the United States, medical and caregiving costs for dementia patients 65 and older in 2020 were estimated to have exceeded 305 billion, with 67% of that paid by Medicare and Medicaid. In 2050, that number is expected to exceed 1.6 trillion.
The system currently depends largely on informal, unpaid care for patients with Alzheimer’s and dementia. In the United States, unpaid care partners account for an estimated 16 billion hours of unpaid labor each year. Dementia caregivers also face nearly double the out-of-pocket costs of non-dementia caregivers, averaging $12,388 compared to $6,667.
Limitations of Medicare and Medicaid
While Medicare and Medicaid do cover many aspects of dementia care, the coverage is fragmented between the two programs. Medicare provides coverage primarily for those 65 and older, regardless of their income. While the Medicare program does cover things like inpatient stays, prescriptions, and hospice, it does not cover long-term custodial care which is a considerable need for many dementia patients.
Medicaid does cover long-term care in nursing homes, but qualification is income-based, requiring patients and their families to spend down their assets before they can qualify. With the average nursing home costing $95,000 to $108,405 per year, patients and their families are likely to face significant out-of-pocket expenses for long-term care services until the Medicare beneficiary becomes eligible for Medicaid.
Future Directions
The U.S. healthcare system is currently failing those living with Alzheimer’s and dementia. Patients and their caregivers are forced to navigate a fragmented system with little guidance, pay exorbitant out-of-pocket fees, and receive care that is not accommodating to the complexities of their disease.
We Must Prioritize Early Diagnosis
Research suggests that early diagnosis of Alzheimer’s and dementia can help to ease many of the issues that patients face. An early diagnosis allows access to services and healthcare that may be less effective or unavailable with a later diagnosis. Because of these benefits, the U.S. has codified the objective to provide “timely and accurate diagnosis” in the U.S. National Plan to Address Alzheimer’s Disease.
In order to ensure timely and accurate diagnosis, there are a few things that need to change in our healthcare system. Firstly, we must fight the stigma against dementia. The negative connotations and stigma of this disease prevent people from seeking a diagnosis in the first place and create hesitation from doctors providing the diagnosis.
Secondly, with a scarcity of neurologists creating dementia neurology deserts, primary healthcare workers must be armed with the training and education they need to successfully diagnose and treat dementia patients on their own.
The Importance of Education and Training
Once diagnosed, dementia patients face shortages of healthcare providers who are uniquely trained to care for them. If the benefit of early diagnosis is the earlier access to dementia specialists and treatments, our healthcare system must have these clinicians available.
Currently, half of primary care physicians report that they do not feel adequately prepared to care for those with dementia and Alzheimers. This number must change if our country is going to provide care for the rapidly growing dementia population.
Additionally, healthcare workers without a background in mental health are often unprepared to manage the comorbidities of dementia patients. These workers also need additional training to adapt their services to better accommodate their patients with dementia.
Finally, it’s essential to better educate the community about dementia and the needs of those living with the condition. A lack of understanding about Alzheimer’s and dementia leads to community resources being underutilized by those who need them. By educating the public and community leaders, we can reduce stigma, clarify the needs of dementia patients, and encourage greater collaboration among service providers.
In the face of a healthcare system that struggles to meet the complex needs of dementia patients, it’s clear that significant changes are necessary. By prioritizing early diagnosis, enhancing education and training for healthcare providers, and fostering a more informed and supportive community, we can begin to fill the gaps in our healthcare system and provide equal and equitable care for those living with Alzheimer’s and related dementias.