Cape Alzheimer’s patients now have better access to clinical trials

One of the goals of the new Memory Care Center at Neurologists of Cape Cod in Hyannis is for every patient on the Cape over the age of 65 to be screened for dementia, just as they are routinely screened for hypertension, cholesterol and glucose levels. Early detection allows for better treatment options and the opportunity to plan for the future.

It also could mean a better chance for a cure.

Clinical trials hold the promise of better treatment for Alzheimer’s disease, but getting patients into research earlier in the disease’s progression is imperative. In order to create better access to trials for patients on Cape Cod, the team at Neurologists of Cape Cod has recently joined in collaboration with the Center for Alzheimer Research and Treatment (CART) in Boston, which is part of the Alzheimer’s Center at Brigham & Women’s Hospital and also affiliated with the Massachusetts Alzheimer’s Disease Research Center.

So far, all of the clinical trials for Alzheimer’s disease have failed to find a cure. The reason is simple Dorene Rentz, PsyD, a clinical neuropsychologist and co-director of CART told a gathering of about 100 people at the recent Memory Health Symposium in West Dennis recently.

“The problem is that we’ve been treating people too late. We’ve been treating people at the stage of the disease when it’s impossible to do anything about it,” Dr. Rentz said.

If a cure for Alzheimer’s is to be found, clinical research holds the key, she said. And getting patients into clinical trials earlier in their disease is crucial, she added. Dr. Rentz spoke from both professional and personal experience. She helped care for her mother-in-law when she fell victim to the disease and, when her husband was diagnosed with Alzheimer’s disease, they agreed he should take part in a disease-modifying clinical trial.

“I helped enroll him in a clinical research study because I want him to be one of the first people cured of Alzheimer’s disease and those people will be someone who is enrolled in a trial,” she said. “My husband and I made the choice that we wanted to go into a trial because we didn’t want to watch the disease take over and do nothing, the way we did with his mother. We really wanted to be proactive.”

The desire for a cure for oneself is only one of the many reasons to participate in a trial, Dr. Rentz said. Most people participate because they want to help others. They also want to help find a cure before the disease is inherited by their children or grandchildren.

Dr. Rentz is hoping more patients from the Cape decide to participate in clinical trials and is even offering free transportation for those who sign up.

Streamlining Access and Care

An important aspect of the Memory Care Center is streamlining the clinical trials process for as many Cape patients as possible, said nurse practitioner Tara Hart, NP, of Neurologists of Cape Cod who also spoke to the Memory Health Symposium at The Lighthouse Inn.

“The involvement of clinical research is crucial to patients with Alzheimer’s and dementia,” Hart said. “It truly is the only way we have to find more effective medication and other modalities of treatment for our patients who are living with cognitive impairment and dementia.”

Another focus at the Memory Care Center is to streamline care for the patients. Doctors and nurse practitioners provide screening, evaluation, treatment and case management for those with cognitive impairment and dementia, said neurologist Sean Horrigan, DO. They help determine whether a patient is still capable of driving and they coordinate with other care providers like primary care physicians.

They also connect families to community resources, like the Alzheimer’s Family Support Center, which runs free programs in every town on the Cape.

The Memory Care Center was launched about a year ago after Dr. Horrigan and his colleagues at the neurology practice on North Street found they were devoting more and more of their time to patients with dementia and Alzheimer’s. Cape Cod Healthcare devoted the resources necessary to start the Center and help people with Alzheimer’s on Cape Cod and the families taking care of them.

“There are over 5 million people in the United States living with Alzheimer’s. We know for a fact that about 13,000 people are living with some form of dementia here on Cape Cod,” Dr. Horrigan told the Symposium group.

The neurologists met with a primary care task force last fall to create guidelines for primary care physicians to screen for cognitive decline, since better screening and diagnosis of people with cognitive impairment is imperative, he added. The Memory Care Center also works with patients to make sure they have a medical care team in place.

Quality of Life Connection

Another important thing the Memory Care Center team has done is work in partnership with Cape Cod Healthcare’s Quality of Life Task Force to bring awareness to advanced care planning and end of life goals to the Cape Cod community. Currently every patient discharged from Cape Cod Hospital and Falmouth Hospital is asked to fill out a healthcare proxy and a Medical Orders for Life-Sustaining Treatment form, also known as a MOLST form, with their end of life wishes spelled out.

“This is particularly important for our patients with Alzheimer’s and dementia,” Hart said. “It’s important to open the conversation about end of life goals and advanced care directives while a patient is still able to be involved in the decision-making and planning for the future as the disease progresses.”

Creating more research opportunities on Cape Cod is another goal of the Memory Care Center, Dr. Horrigan said.

Two of the speakers at the event are currently living with Alzheimer’s disease, including Patty Barbato of Falmouth, who serves as a research ambassador for the Massachusetts Alzheimer’s Disease Research Center. Barbato travels to Boston to participate in one of the research trials once a month. Each trip takes about six to eight hours, including travel and the time necessary for the infusion.

“To me, it’s a no brainer,” she said. “You have to make the time to do what you need to do for your health and your family.”

Journalist and author Greg O’Brien of Brewster was diagnosed with early onset Alzheimer’s in 2009. His grandfather, mother, father and uncle all died from Alzheimer’s disease, so he is intimately aware of what is in store for him. He spoke about the history of the disease and how devastating it can be to individuals and families.

He ended on an inspirational note.

“One thing about this disease is you have to learn to fight it with faith, hope and humor,” he told the audience.