Independence Radio: Nettie Harper: Living with Dementia

how to live with dementia, whether you are a person diagnosed with the condition or are that person’s caregiver or aideIn the latest episode of ICS Independence Radio, host Stephanie Wallace talks with Nettie Harper, director of ICS’s Dementia Program, about how to live with dementia, whether you are a person diagnosed with the condition or are that person’s caregiver or aide. You can listen to the episode here.

For most people, dementia is a frightening or depressing topic. It can represent aging, loss, incapacity or worse. But Nettie has an unusual, even hopeful take on living with the condition. Many conditions that resemble dementia are actually reversible, Nettie says. Even those that are not, such as the kind associated with Alzheimer’s disease frontal-temporal dementia, or dementia with Lewy body’s, are not death sentences, and people who are diagnosed with dementia are still people—the very same people we’ve known and loved all along—to the very end. They can be reached, Nettie says, and it’s important to know how.

Alzheimer’s or Dementia?

“Dementia is a just a general term for a loss of memory and some other mental abilities, such as problems with communicating, difficulty with concentration,” says Nettie, when asked about the difference between dementia and Alzheimer’s. “There also may be some changes in mood…. There may be some decreased reasoning skills, possibly a lack of judgment, at times some socially inappropriate behavior. However, it has to be severe enough to interfere with activities of daily life, and… these symptoms are occurring because of what’s happening in the brain.

“Now, Alzheimer’s disease is actually a diagnosis, and it falls under the umbrella of dementia” she continues, noting that Alzheimer’s is just one of over a hundred forms of dementia. “With Alzheimer’s disease, there are key enzymes in the brain that are malfunctioning, and it’s causing the buildup of plaques and tangles.” Nettie compares the brain with Alzheimer’s to a dysfunctional subway system. “Maybe we’re riding the 2 train, and that breaks down, and all of a sudden we have to find a different neural pathway to get to our destination.”

Even though the brain of a person with Alzheimer’s disease can lose up to 40 percent of its function, Nettie points out that 60 percent of normal function remains. “What that means for us at ICS is, we need to figure out what are still those strengths. They can still make connections with us clear to the end of the disease process. And that’s the part we still need to focus on: how do we make those connections?”

Reversible Conditions

Before a person with any of the symptoms like Alzheimer’s disease gets a diagnosis, Nettie says, a good geriatrician (a doctor specializing in aging) will rule out a number of other possible causes for the behavior.

A key to some of these can be found by looking at the acronym DEMENTIA, Nettie says. “Start with D: if people are having Drug interactions, they can appear to have a memory loss because it’s affecting the brain…. So we look at the drug interactions, we clear [those] up, and then that person can return to baseline.”

Other possible causes of dementia-like symptoms include:

  • Emotional disorders, such as depression, which can be addressed with medications or socialization
  • Metabolic disorders like hyperthyroidism, also addressed by medications
  • Ear or Eye problems, which can be fixed by such simple remedies as cleaning the individual’s glasses or providing hearing aide
  • Nutritional disorders, fixed by improving the person’s diet
  • Tumors of the brain, which can be removed surgically
  • Infections like pneumonia or urinary tract infections, treatable with antibiotics
  • Arteriosclerosis or congestive heart failure, which may be treated with drugs or surgery

“If you go to a really good geriatrician, they will look at all that,” Nettie says. “We have to be careful about not rushing into the diagnosis of, ‘There’s memory loss,’ so they’re going to be labeled with Alzheimer’s disease…. A good geriatrician will do some PET scans and MRIs on the brain to figure out what’s going on there as well. The hardest thing to rule out would be the depression.”


Making Connections

Nettie tells Stephanie that she got her start in treating dementia while doing volunteer work with a geriatric care agency before graduate school. She loved the work so much, she applied for a full-time job and became a case manager with the agency. “I went into people’s homes and I coordinated their care. I also worked alongside a woman named Ethel who was a home health aide. She was 66 years old and to this day, she is probably my best mentor.” Nettie helped Ethel with bathing and providing personal care for each client for two hours, then recreation therapy for two hours. They saw three clients each day.

Nettie learned invaluable knowledge about how to engage people with dementia. For example, Nettie advises caregivers and aides to take their time with a person with dementia. “What I always try to tell families is – when asking a question, pause. Thirty seconds may seem like a really long time but you may be amazed to find that [your loved one] can answer your question….

Stephanie asks Nettie how a family member can keep a person with dementia engaged. Nettie replies with a story illustrating the key concept of connection:

“I was at a member’s house the other day where the spouse said, ‘He doesn’t recognize anyone in the family anymore. He doesn’t even recognize the grandchildren.’ It so happened that the grandchildren lived upstairs, so I said, ‘Would you mind if they come down? I’d like to witness this interaction.’ As soon as they came in, he lit up.

“Now, is it important that he knows each of their names? No. But it is important that they keep coming because he does recognize them in some capacity, and it brings him joy. And it’s important to remember that he is making a connection and it’s important that we continue those connections. At the same time we need to make sure the children know what’s going on. He may not call them by the right name, but Papa is so happy in that moment.”

“Ask people with dementia their opinions,” Nettie advises. “They have so much wisdom, and we want to hear their stories.”

To hear all of this fascinating conversation, be sure to visit ICS Independence Radio on Or if you prefer, now you can subscribe to ICS Independence Radio on iTunes.


Tags: dementia, Alzheimer’s, Nettie Harper, Stephanie Wallace, Independence Radio, recreation therapy, health care, health, aging, older adults

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