Q & A: 30 years in the fight against Alzheimer's

Cass Naugle
Cass Naugle

For three decades, Cass Naugle of Mount Airy has been at the forefront of Alzheimer's disease research and advocacy in Maryland.

In 1986, she became the first executive director, and first staff member, of the Alzheimer's Association, Baltimore/ Central Maryland Chapter. In 2002, she oversaw the merging of Alzheimer's Association chapters in Western and Central Maryland, as well as the Eastern Shore, forming the Greater Maryland Chapter. From a single chapter with a budget of $50,000 in 1986, Naugle has seen the organization grow to statewide nonprofit with a budget of more than $3 million today, funds used to support those diagnosed with the disease and their families, as well as pushing for more research.


And Naugle isn't done yet. She recently conducted an interview with the Times concerning her tenure at the Alzheimer's Association, its ongoing projects and her dream of a world without Alzheimer's disease.

Q: You've been the Executive Director of the Alzheimer's Association, Greater Maryland Chapter for 30 years, since 1986. How did you first come to this job and what has kept you in the field for three decades?


A: Before coming to the Alzheimer's Association, I spent my early career working as an activity director in several nursing homes. I was fascinated by people with dementia and enjoyed devising ways to make connections with them. At that time little was known about dementia, and best practices for care. In 1986 I applied for a job to be the first staff of a new organization founded in 1979 called the Alzheimer's Disease and Related Disorders Association. I was intrigued by the mission to offer services and promote research, and felt this was where I could make a difference.

I have enjoyed the opportunity and to build the organization and see it grow in every direction. It has been a stimulating work environment that has challenged all my skills. I have been privileged to work with hundreds of dedicated board members and volunteers who mentored me, and who each made their own positive impact on the organization. I am also motivated by the initiative and dedication of my staff members, and am so proud of the impact they have in the community.

Q: Although there is still not cure or even a treatment for Alzheimer's, our understanding of the disease has progressed a great deal since the 1980s. What are the changes you have seen in that time, both in terms of medical knowledge and how people with the disease, and their families, approach it?

A: When the chapter was started, there was very little printed information, health care professionals were not trained in dementia care and families facing this disease were pretty much on their own. Federal research funding was at about $4 million, a dollar for every person living with the disease.

Today we have offer a full range of services with many educational materials and programs for all stages of the disease. Due to the efforts of advocates led by the National Alzheimer's Association, federal research funding is now at $1 billion.

At the time I started with the Alzheimer's Association, the brain was pretty much an unexplored medical frontier. The only way to definitively diagnose the disease was at autopsy. There were a few experimental treatments, but there were insufficient tools for assessing if these treatments were having an impact on the disease, or even on symptoms of the disease.

Today, research on new strategies for earlier diagnosis is among the most active areas in Alzheimer's science. Researchers are investigating several promising biomarkers, including brain imaging, proteins in cerebrospinal fluid, proteins in blood and genetic risk profiling.

High levels of beta-amyloid in the brain increase the risk for developing Alzheimer's disease. Advances in neuro-imaging and special dyes, which identify amyloid in the brain, are now being used to evaluate the impact of experimental treatments on reducing amyloid. Researchers hope that early intervention in individuals at increased risk of developing Alzheimer's will prevent the cognitive decline of this devastating and ultimately fatal disease.

Q: You have personal experience caring for loved one's with Alzheimer's Disease. Can you tell us about your experience and how it has informed your professional life?

A: Although I had no family members with the disease when I started with the Association, my father's sister developed vascular dementia in the 1990s. My mother's younger brother developed Alzheimer's in his early 60s at about the same time. Then my father developed vascular dementia in the late 1990s and almost at the same time my mother developed Alzheimer's disease.

I was fortunate to have many connections in the aging field, but I quickly learned that when it came to this disease, I was just a daughter caring for her parents. It made me humble. Where I used to give advice pretty freely before the experience of caring for my parents, now I just say, "I understand."

Q: You're a Carroll County Resident, living in Mount Airy. How do you see the Alzheimer's Disease and related dementia affecting our population as it grows older?


A: Age is the greatest risk factor for Alzheimer's disease. Carroll County has a higher percent of people aged 65 plus almost 16 percent, compared to 14 percent for Maryland as a whole. From today to 2030, the State Department of Aging predicts an increase of 56.52 percent in Carroll County residents aged 60 plus, compared to 40 percent average increase for the State.

With aging of the baby boomers, there will be larger numbers of people with Alzheimer's disease and related disorders. There is a growing body of research about how good lifestyle habits may potentially reduce cognitive decline. What's good for your heart is good for your brain, so exercise, cutting smoking, learning new things and being socially engaged can all help to improve functioning. The Alzheimer's Association offers a brochure about 10 ways to love your brain, and we also have a training program on this topic. The association also has a 24-hour Helpline at 800-272-3900 with trained counselors available .

Q: What are some of the things the Alzheimer's Association has done that you are most proud of?

A: I am proud of the range of services we now offer for people living with dementia and their families including early stage engagement programs, 24/7 Helpline, care consultation, over 60 support groups, the Medic Alert+Safe Return program, emergency caregiver grants and many training programs for family caregivers.

We have seen many public policy accomplishments at the state level aimed at enhancing care, including mandated dementia training for staff in nursing homes, assisted living and adult day centers. We had legislation passed that created a state respite subsidy program for caregivers people with functional disabilities, including those with dementia. We now have a Maryland State Plan for Alzheimer's disease and related disorders, and a State Council overseeing the implementation of this plan.

I am proud that our annual gala, the Memory Ball, has grown to be one of the most prominent black-tie events in the area and that it has even been replicated by Alzheimer's Association chapters in other states.


I am pleased that our Walk to End Alzheimer's has grown from a single event in 1988 raising $25,000 to six walks throughout Maryland raising over $1 million annually.


I am proud of our partnership with local researchers, who give so generously of their time and expertise in educating families and professionals about this disease, and of our efforts to promote participation in studies to advance knowledge, and one day, effective treatments for this disease.

Q: What's the plan going forward? Both in terms of your tenure as Executive Director of the Alzheimer's Association and the association itself — are there any new projects you would like to undertake?

A: In spite the increased awareness of this disease, only 45 percent of those with Alzheimer's ever receive a diagnosis. Only half of that number are even told of their diagnosis. There is still a stigma with this disease, much like cancer in the 1960s, when the people spoke of it in whispers. I would like to see a day when those with Alzheimer's can go to their primary care provider, receive a timely diagnosis that is actually recorded in their medical record, and where family members are immediately referred to supportive services, as it is with diabetes and cancer. Often people are diagnosed late in the course of the disease, and families struggle with care on their own, unaware of available resources. This results in much poorer outcomes for both persons affected and their family caregivers.

We need federal research funding for Alzheimer's disease at $2 billion annually, the level scientists say is required to develop disease-modifying treatments and a means of prevention. Our country must invest now, or pay later for sky-rocketing costs of care as baby boomers age.

Q: After 30 years, what gets you excited to get out of bed in the morning?

A: I am inspired every day by the urgency of our mission and how the people and families of touched by Alzheimer's and related disorders confront their daily challenges with courage, dedication and love.



Recommended on Baltimore Sun