For the first time in 18 years, the Food and Drug Administration on Monday approved a new drug for Alzheimer’s disease. In response, doctors’ offices and hospitals have been inundated with calls from friends and families of patients seeking access to the drug – despite strong concerns about its effectiveness. In fact, two outside panel members who recommended that the FDA not approve the drug because of its patchy results have resigned in protest after their advice went unheeded.
When patients avoid seeking help until symptoms are severe, researchers lose an important opportunity to enroll study participants at an early stage.
The outpouring shows how much people crave for effective treatments for Alzheimer’s disease. The expected explosion in diagnoses of the disease over the next few decades will only intensify the push. The National Institutes of Health is already expected to spend more than $ 3 billion on Alzheimer’s disease research this year.
Considering the need and the considerable investment of resources, why are effective treatments so difficult to develop? One of the reasons is stigma. I know this from the experience of my own family.
For over a decade, family members have whispered about my father’s failing memory. But it wasn’t until we got lost in a routine run that we finally found the courage to have it evaluated. We then watched my dad fail test after test – draw a clock, repeat the words in order, etc. I remember our family embrace in tears after the doctor confirmed her diagnosis and handed us a brochure about Alzheimer’s disease.
Why were we so afraid to face my father’s early struggles? Partly because we’ve all been conditioned to view an Alzheimer’s diagnosis as hopeless, so we avoid finding it out until it critically interferes with someone’s ability to function.
A national survey found that most people expect a person with even mild cognitive impairment to experience employment discrimination and excluded from care decisions. And nearly half expect medical records, brain imaging or genetic testing to affect their health insurance, even though the 2008 Genetic Information Non-Discrimination Act created some protections. With Alzheimer’s disease on both sides of my family, I avoided having a benchmark test for all of these reasons.
The consequences of this stigma can be serious, and they are similar to those surrounding other illnesses, such as mental illness, cancer and HIV / AIDS. The good news is that this shared history gives us a sense of how we can better cope with Alzheimer’s disease and the people who live with it.
For starters, stigma can delay the development of effective treatments and remedies. Longitudinal studies are an important part of disease research, but they require the participation of people with risk factors, especially before they develop significant symptoms. For example, the new Alzheimer’s disease drug, aducanumab, has been tested in people with mild cognitive impairment or early-stage dementia. When patients avoid seeking help until symptoms are severe, researchers lose an important opportunity to enroll study participants at an early stage.
Delaying the diagnosis will also mean that those who could have benefited from this new drug may miss out, as its effects on later stages of the disease are unknown. Additionally, this stigma also inhibits personal lifestyle changes that could delay or even potentially alleviate Alzheimer’s disease in people with genetic or other risk factors.
There is encouraging evidence, for example, that controlling blood pressure can improve the onset of the disease. Scientists also increasingly refer to Alzheimer’s disease as “type 3 diabetes” because of its involvement in insulin resistance in the brain. Diabetes prevention measures, such as weight and diet changes, could also be helpful here, but prospective patients should be willing to identify risk factors and seek help quickly. Overall, the earlier a patient is diagnosed, the more likely it is that behavioral interventions can make a difference in prognosis.
Then there is the personal and family toll. Once, on a day trip, an older man noticed my father’s hat logo and engaged him in a heated discussion about military history. Soon my father began to repeat himself. The man abruptly interrupted the discussion and apologized for leaving. This situation happened several times, and it often left my father to apologize or cry.
My family had been careful to reveal his diagnosis until it was obvious he was in cognitive decline – and we were right to be hesitant. Once we started telling people, their voices took on a pitiful tone, and they expressed their amazement that we allowed my dad to volunteer, run the yard, and drive. Alzheimer’s disease is expected to be an immediate one-way ticket to a memory care facility. My mother bore the brunt of the stigma, with few friends who are comfortable talking about her increasingly painful trip.
To reduce the stigma surrounding Alzheimer’s disease, we can learn from successful efforts to promote acceptance of other diseases and the importance of seeking care. A key strategy is to have more contact with those diagnosed. Country artist Glen Campbell revealed his diagnosis of Alzheimer’s disease in 2011, followed by a successful nationwide farewell tour. Fans witnessed his still strong musical talent and empathized with his momentary memory struggles.
We need to make it easier for others to talk about their diagnoses as early as possible, which will normalize the disease and help others understand that abilities don’t just disappear overnight.
The way we describe patients with Alzheimer’s disease also needs to change. So many families hide diagnoses, even after the death of a loved one. Positioning Alzheimer’s disease in this way makes it shameful. Focusing on a person’s strengths rather than their shortcomings can help reframe what people think about the condition. We should talk about “living with Alzheimer’s disease” and represent dynamic people who engage in regular activities, which will help to better understand the disease journey and reduce stigma.
The June summer solstice – the brightest day – has become associated with Alzheimer’s disease, encouraging the world to fight against the darkness of the disease. If we have any hope of preventing or curing this devastating disease, we must bring patients out of obscurity and bring them into a world of greater acceptance and understanding.