Although Marcia Gay Harden’s mother was diagnosed with Alzheimer’s disease eight years ago, she started spotting changes before that.
“I noticed symptoms, but I don’t think I really understood what they were because it looks a lot like old age or distraction,” she told SheKnows.
The importance of identifying the early stages of AD is what drew Harden — best known for her roles in Pollock, Mystic River, Angels in America, The Newsroom, Law & Order SVU and currently, the medical drama Code Black — to the Notes to Remember campaign, which focuses on helping people recognize the early signs and symptoms of the disease.
“I started by excusing things [signs and symptoms of AD in her mother] and this campaign struck me because it’s really all about those first steps,” she noted. “Once someone is diagnosed, the experience is very specific with their doctor and how the family goes through it. But the first steps and awareness is what is universal and we all face that together.”
The key is opening your mind to being aware of the early signs, including repetitive forgetting and when forgetfulness gets in the way of everyday activities, Harden explained, noting that if you recognize any of these symptoms in yourself, “we gently, bravely encourage you to go see a doctor.”
It’s also important to keep in mind that there is not one single, tangible symptom of AD, but rather, noticing changes in patterns of behavior over time.
“For me it wasn’t one penny that dropped — it was several moments, an accumulation of moments where several pennies dropped until I said that this needs attention,” Harden said.
But given the degenerative nature of AD, why would someone want to identify it early? Is there a case to be made for “ignorance is bliss” is this situation?
According to Harden, no.
“I can say firsthand there’s a thousand reasons why you’d want to know,” she explained. “Being in charge of your future and giving your children the gift of you being in charge of your future is so important. This is not a singular disease — it affects the whole family.”
Harden also emphasized the benefits and necessity of having a cohesive, involved family — which is another positive outcome of early diagnosis.
“When AD is detected early, you can be in charge of creating the cohesive family behavior you want,” she noted. “It’s already a field that is going to be emotionally fraught because it’s your parent or other loved one. It’s also degenerative, gradual cognitive decline. No one can picture what it looks like until it’s happening. Having a cohesive, supportive family unit and ongoing conversation is part of the caregiving.”
So what do you do if you notice the early signs or symptoms in a parent or loved one? While it’s a difficult conversation to initiate, it’s also a very important one, ensuring that you’re able to carry out their wishes.
For tips on how to make this conversation a little easier, Harden suggested turning to one of the several AD advocacy organizations, or resources including Notes to Remember.
“Why this campaign is important to me is that it’s all about the first step, which is awareness,” she said. “If a person is aware of the early signs and symptoms, that’s going to prompt other research and questions, along with a basic level of conversation. You’re giving yourself and your family the gift of time, power and knowledge.”
Harden also recommends writing things down — both for the person with AD and their loved ones. This goes beyond someone leaving themselves notes around the house to remember their keys or to turn off the lights, but keeping a record of the memories important to you to keep that aspect of the person’s life present.
“What the Alzheimer’s patient has is the moment they’re in,” Harden said. “They don’t have two minutes ago because they forgot. They don’t have five minutes in the future because they can’t imagine it. But they have the moment that they’re in — so the grace and wit and charm and compassion that we can bring to each moment is incredibly important.”