Life hasn’t been the same for Regina McRae since her 84-year-old mother was hospitalized nearly a year ago and subsequently moved into a nursing home.
"When I talk to her, she’s in a different world,” explains McRae, a cake artist, whose business keeps her in New York City while her mother is in a facility in upstate New York. “She thinks she lives in Brooklyn and that she’s 90. I’m not sure if it’s hallucinations or a process of dementia.”
That confusion is common among caregivers like McRae. What’s also common is a person with Alzheimer’s or dementia developing hallucinations in the middle and latter stages of the disease. According to the Alzheimer’s Association of America, hallucinations occur in about 25 percent of cases.
The Alzheimer’s Association website defines hallucinations in people with dementia as “false perceptions of objects or events” involving the senses that are caused by the changes in the brain that result from the disease. A person suffering from hallucinations may see a friend or spouse in the room with them and engage in conversation with the imagined person. Or they may see insects in their bed that are not there.
Getting the proper diagnosis is key, says Dr. Kevin Henning,M.D., chief medical director with Amedisys Home Health Care. As many as one in ten dementia patients suffer from what’s known as Lewy Body Dementia. This form of dementia has many characteristics of Alzheimer’s disease since the Lewy body cells inhibit areas of the brain such as the cortext, which is responsible for thoughts. But when the Lewy Body cells imbed in the region of the brain that impacts movement and motor skills, Parkinson’s disease develops. Think of Lewy Body Dementia as a cross between Alzheimer’s and Parkinson’s.
How does this relate to hallucinations? It’s quite common for people with Alzheimer’s to suffer hallucinations in the latter stages of the disease. However, with Lewy Body Dementia, hallucinations occur at a much earlier stage. In fact, hallucinations can be one of the first signs of this form of dementia.
Whether your loved one has dementia, Alzheimer’s or Lewy Body Dementia, caring for them “takes patience and gentle reassurance,” says Dr. Henning. The Alzheimer’s Association offers these suggestions for managing hallucinations:
- Reassure the loved one in a supportive manner that you are there for them. You might say, “I’m here. I’ll protect you.”
- Acknowledge the hallucination and try to find out what it means to your loved one by asking something like, “I understand you’re worried.”
- Give a gentle pat to turn their attention to you and reduce the hallucination.
- Distract the patient by offering to take them for a walk, engage them in another activity they enjoy (such as playing the piano) or move them into a different room. Hallucinations may subside when the patient is in a well-lit room with other people.
- Modify your loved one’s environment by covering mirrors if they believe there are strangers in their room. Also check for sounds (from an air conditioner, heater, etc.) that could be misinterpreted, and look for lighting that casts shadows.
“Remember, sometimes hallucinations aren’t bothersome to the patient,” adds Dr. Henning. “They bother the caregiver more.” Some hallucinations can be wrapped up in memories – seeing a deceased spouse or other relative, for instance – and can actually be comforting.
But, Dr. Henning adds, “Sometimes hallucinations get so bad; and coupled with a person's inability to care for themselves caregivers feel as if they have no choice but to place their loved one in a nursing home or memory care facility for a higher level of care." When Alzheimer’s or dementia progresses to a certain point, a loved one needs 24-hour-a-day medical care– more than a single caregiver can provide. “Know you are doing the best thing for your loved one by choosing an appropriate level of care. Don’t feel guilty.”
That was the situation McRae found herself in. Her mother is frequently sedated because of her condition. McRae says she’s thankful that her mother usually recognizes her when she visits, but longs for the days when she could turn to her mom for conversation and advice.
“I’ve had to realize the relationship I used to have with her doesn't exist,” she admits. “The greatest lesson is to understand that they’re not going to come back into our world so you have to delve into theirs.”