How to care for a loved one with dementia

Health and Medicine People and Community

By Barbara Gutierrez [email protected] 11-15-2024

A diagnosis of Alzheimer's disease or related dementias (ADRD) for an aging loved one can be devastating for a family.

In 2023, it was estimated that 6.7 million Americans of all ages had the diagnosis of Alzheimer's disease. More than 11 million people care for a loved one with Alzheimer's or a related dementia, according to the Centers for Disease Control and Prevention, and about 80 percent of those patients are cared for in the home.

Dr. Elizabeth Crocco is a geriatric psychiatrist and the medical director of the Memory Disorders Clinic Center for Cognitive Neuroscience and Aging at the University of Miami Miller School of Medicine. Over the course of her career, she has seen thousands of patients and their families. She reports that for some families, the diagnosis of ADRD can be helpful because it ultimately can explain that the illness is not just due to normal aging. For others, a diagnosis can be scary.

"It can be frightening because they know that it is irreversible and that it progresses," she said. "The idea that the person will lose part of who they are, not just cognitively, but part of their essential personality, brings up a lot of feelings."

Cognitive impairment is the hallmark feature of ADRD, but these illnesses can also have behavioral changes. These include agitation, irritability, depression, and anxiety. It is important for care providers to learn how to handle these situations while also maintaining their own mental health, she said.

In her clinic, Crocco and her team work with care providers so that they understand the condition and can better manage its symptoms. This includes how to communicate with the loved one.

"The memory issue is not the only problem that is making one's loved one suffer, and a family member can have a difficult time," she said. "It is the psychiatric and behavioral symptoms that are often the most difficult to deal with: depression, anxiety, anger issues, agitation, along with resistance to care and help." Medications, of course, can help, but effective and consistent caregiving is paramount in coping with a patient with ADRD.

Crocco offered some helpful tips that can make taking care of an individual with ADRD easier:

Establish a routine

Consistency is key. Chaotic home situations are not kind to people with cognitive impairment. Traveling is a change of routine that can lead to more behavioral problems and confusion. If they resist a task, try not to force them to do it. Wait an hour or more as their attitude may change later.

Keep calm

Keeping calm and composed is important when dealing with a loved one with ADRD. Also, remember that your reality might not be theirs, and you need to be respectful. Crocco's mother had dementia. She tells this story: "One time I was at my mother's house, and I had left a piece of pizza on the stove. My mother began screaming and cursing because there was a piece of pizza on the stove, and it upset her. I took the pizza off the stove, washed the area down, and I said: 'I am so sorry, Mom, that I upset you.' She calmed down immediately."

Sundowning

It can happen earlier than expected, in the late afternoon. During this time, for both biological and situational reasons, an ADRD individual may become more confused, disoriented, agitated, and paranoid, as well as anxious and fearful. It is important for loved ones to predict patterns to minimize problems behaviorally without always opting for medications.

Therapeutic fibbing

Cognitive decline often leaves the person with memories of the past. If a loved one has forgotten that someone is deceased, they may repeatedly ask about them. At times, it might be better to let them believe that they are still alive. "What is the alternative?" asked Crocco. "Letting them relive the death over and over again?"

Often arguing with a loved one with Alzheimer's is a losing proposition and only leads to agitation and discord. "You argue and you lose," said Crocco.

Use music and pets

Often introducing preferred music from the loved ones' era can assist in preventing behavioral problems and be very entertaining and enjoyable. Bringing in pets for ADRD individuals to interact with can also assist. It is well known that having animal or pet interactions can lower ones' stress level as well as blood pressure, said Crocco.

Seek help

An adult day care center is a good alternative to help a care provider with the help of a loved one with ADRD, said Crocco. Besides providing social interaction and dementia care during the day, it also affords the caretaker time to work or rest, said Crocco.

Learn more about the Memory Disorders Clinic at the University of Miami Health System.