What to Do When Dementia Symptoms Progress: A Caregiver’s Perspective on Neuropsychiatric Symptoms

David German and his wife, Linda, were a team. Linda was diagnosed with young-onset Alzheimer’s disease in 2014. When they left the doctor’s office after her diagnosis, David reminded her that whatever lay ahead, they would face it together as they always had. Neuropsychiatric symptoms were among the challenges they encountered during their seven-year journey. David hopes that sharing his story will help other caregivers know what to do when dementia symptoms progress.

“Early on, Linda started out with sundowning, which wasn’t too hard to handle. As the disease progressed, things became tougher,” German said. “She had trouble performing everyday activities like brushing her teeth or getting dressed and would get agitated whenever I tried to help her. There were times where she would get violent because she no longer understood what was going on. At the end stages, she would periodically just yell or scream out.”

The Germans’ experience is a familiar one for families affected by Alzheimer’s and other dementia-related illnesses. Approximately 90 percent of individuals with dementia will experience at least one of five major behavioral and psychological symptoms. According to Dr. Jeffrey Cummings, Director of the Chambers-Grundy Center for Transformative Neuroscience at the University of Nevada, Las Vegas, these include agitation, psychosis, depression, apathy, and sleep disturbance.

These are among the greatest challenges caregivers encounter. “With agitation, there is distress and fear about not knowing how to control the person, what they are going to do, or how to help them. With sleep disturbances, if the person is up during the night, the caregiver likely is, too,” said Cummings, an AFA Medical, Scientific, and Memory Screening Advisory Board member. “There are so many different demands of care that can add to a caregiver’s stress.”

Fortunately, there are a few things caregivers can to when dementia symptoms progress.

What can caregivers do when dementia symptoms progress?

REDIRECT

People living with dementia can become disoriented and irritable, or have a psychotic episode where they see something disturbing. When this happens, there’s a natural tendency for caregivers to try and insist that whatever the person is “seeing” isn’t there. Confronting them is usually ineffective, according to Cummings. He advises caregivers to accept the person’s reality rather than insist on their own.

“Telling the person their reality is wrong doesn’t change it. Instead, try to enter and work around their reality. Acknowledge it by saying something like ‘Yes, I see that’s distressing—let’s go over here and do something you like to do.’ Redirecting the person into something that’s more acceptable to them—like taking a walk or having a cup of tea—can help get them beyond that episode.”

The strategy worked well for David. “There would be times where Linda would say ‘I smell something terrible,’ so I would respond ‘OK, let’s go for a ride in the car, maybe there’s something wrong in the house,’ even though I knew there wasn’t. Switching the subject to something she enjoyed—she really loved car rides—brought her to a comfortable place whenever she was outside of reality or feeling depressed or anxious.”

“Entering her reality was a challenge, I don’t like to downplay it. But as challenging as it was, I really felt I was doing good for her,” added German.

SHOW AFFECTION

Cummings also encourages families to use affection. “I’ve found my patients could always distinguish, no matter how late in the disease progression, between familiar and unfamiliar. A husband holding a wife’s hand or hugging her feels different from someone else who didn’t have a lifetime with her doing the same thing. Even if they no longer remember their spouse’s name, that familiarity can still be extremely reassuring to the person in advanced stages.”

“Being a caregiver does change things, but it doesn’t change the love and doesn’t change how much you can do positively,” German said. “Even at the end, when Linda couldn’t remember who I was, I would get a smile or a response when I held her hand or hugged her. That made me feel I was accomplishing something.”

FORGIVE

Even while using these and other techniques, every caregiver will have stressful moments where they lose their composure. This is why Cummings reinforces the significance of self-forgiveness. “It’s an important aspect of caregiving because you cannot be perfect all the time. Things are going to happen, you’re going to get frustrated, and you may raise your voice in a way you never intended. Forgive yourself and get back on track because your loved one needs you.”

German knows firsthand that forgiveness can be hard but agrees it’s necessary. “My father had Alzheimer’s many years ago—long before we knew what we know today—and I yelled at him and felt terrible about it for a long time. But nobody can be a saint 24/7. You must be able to forgive yourself,” he said. Building off his past experiences, he used a constructive technique during challenging moments with Linda. “When I would get frustrated, I would leave the room so I could release my frustrations away from her, without her knowing,” said German. “I encourage everyone to try that.” Above all, remind yourself that you’re making a difference. “One of the things that helped me get through this was that I really felt I was making a difference, and that was really gratifying,” said German. “As difficult as life was for Linda, I was making it better than it could’ve been.”

Adapted from the AFA Fireside Chat series, Episode 4. View AFA Fireside Chat episodes at www.alzfdn.org/firesidechat