The breakthrough means that the course of Alzheimer’s disease can be changed—the earlier the diagnosis, the earlier the treatment

My mother was healthy and active in her early fifties when she began to show signs of mental retardation. Within a few years, Alzheimer’s disease robbed him of his joy of cooking, his love of music, and the ability to see his grandchildren.

My father, my sisters, and I share caregiving duties, watch over him carefully, and balance the new energy in our family. I found myself sleeping in my mother’s room so she wouldn’t wander around at night. We were a private family and did not discuss my mother’s illness much outside of our gatherings. When we cared for him, our world became smaller, our schedule focused on keeping him safe. My sister and I asked ourselves, Are we going to follow?

It would be different if the mother was available today. Almost twenty years later, we know a lot about this disease. Advances in detection, diagnosis, and medication offer new hope for slowing its progression.

Research has confirmed that we have a greater chance of affecting this disease in its early stages, when some people may show only subtle changes in memory and thinking that are different from normal aging. People with this condition, usually with mild cognitive impairment, may experience fewer challenges in everyday life, and may be younger and appear healthier than society has portrayed.

New diagnostic methods are now able to identify the pathology of the underlying disease—clumps of amyloid plaques in the brain. And emerging blood tests promise to speed up and simplify diagnosis with incredible accuracy. A few years ago, for patients like my mother, a confirmed diagnosis was impossible even after death.

Changing perceptions of Alzheimer’s disease

Moving forward, it will require all of us—people with Alzheimer’s disease, caregivers, and families—to change the way we view the disease and the way we treat it.

More people need to be aware of the importance of early detection of symptoms, often in the primary care setting, and to reduce the stigma surrounding this disease so that more people can be diagnosed. Today it can take on average more than two years to diagnose Alzheimer’s after the first symptom is detected. We require health care providers to incorporate cognitive testing and advanced diagnostics into their clinical practice when Alzheimer’s disease is suspected. Also, we must promote access to and reimbursement for diagnostic testing and treatment.

We need greater equality across disease states, races, genders, and generations. Promoting available and affordable options across geographic and socioeconomic boundaries and enabling care closer to home should be a priority. As a new generation of caregivers begins to shoulder the burden of mothers, fathers, and families, we must ensure that these newly adopted individuals are supported early in their illness.

The progress we are seeing now will lead to more investment and research into Alzheimer’s which will unlock more understanding and open the door to tackling other neurodegenerative conditions. This period will be a catalyst for further progress in understanding diseases such as ALS, Parkinson’s, and multiple sclerosis. We can do all of this: What was a breakthrough in the science and care of cancer and heart disease decades ago is now the norm in how we treat these patients today. The same can be true for neurodegenerative disease.

When I look back on my mother’s experience, I am always deeply grateful that she continued to take care of my father, my sisters and me at the end of her life. As I held her hand and looked into her eyes as she passed away, I was comforted knowing that she was not seeing a stranger, but a loving daughter who had felt loved and cared for all her life.

Scientific breakthroughs came too late for my mother. but it’s never too late for people diagnosed today. The story of Alzheimer’s is now being rewritten. We have an opportunity to truly change the course of this disease for many people, and we need to act quickly to help them and their loved ones. I would have given a lot to have more time with my mother, and I am very happy that many families now have that opportunity for more time.

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