Most individuals who have a loved one with Alzheimer's dread the day when their loved one may no longer recognize them. Care partners may think that would be the most tragic situation possible. They consider it the disastrous end of their relationship.
When a loved one doesn't recognize his or her caregiver, the caregiver can experience unending, searing pain. Ultimately, however, the situation hurts the caregiver, but may not bother the person living with Alzheimer's. That should be what matters most.
Someone with Alzheimer's can still feel a bond with his caregiver even if he doesn't know precisely who that person is. But some caregivers are so upset when their loved ones don't recognize them, they don't see any reason to keep visiting. They figure it doesn't matter. However, there are several reasons why continuing to visit does matter:
1. The person may recognize the caregiver but may not be able to express it
It's always possible that the person with Alzheimer's does recognize the caregiver but cannot show it in ways that are easy to recognize.
I had a personal experience that demonstrates this. Doris was one of the ladies I was assigned to visit at the memory care facility where I volunteer. Doris was so frail and her condition so advanced that the most I could do was hold Doris's hand and speak to her softly. Doris never responded. Then one day as I was holding her hand, Doris put her other hand on my arm and began caressing it. I had the distinct feeling that Doris remembered me.
2. The person may remember how often he is visited even if he no longer remembers his relationship with the caregiver
I was speaking at an Alzheimer's family support group recently. A man there said that he visited his wife, who had advanced-stage Alzheimer's, nearly every day, even though she didn't recognize him. He learned early on, however, that she knew when he'd missed a day. She'd always say, "You didn't come yesterday."
3. The person may enjoy being visited, even if he or she doesn't recognize the individual who's visiting
I had another personal experience that led me to this conclusion. Ed, my soulmate of 30 years, had many visitors he didn't recognize. When these people were there he'd often hold hands with them--female or male--the whole time. And he'd have long, pleasant talks with them. It was perfectly obvious he was enjoying himself. One should pay attention and see if one's loved one is enjoying the visit. Again, that's what matters.
Daniel Potts, MD, FAAN, my co-author for the book Finding Joy in Alzheimer's, is the course director for a college class that pairs students in an art therapy experience with persons who have Alzheimer's disease. The students develop relationships with and empathy for those with the condition. It can be difficult for the students at first, because some of their partners do not remember them from week to week. However, once the students realize that the value of the experience lies in the joy they can offer people in the present moment and the improved quality of life that can result, the experience becomes meaningful to them.
4. The caregiver may feel gratified that he's given his loved one pleasure
Although the main focus of interactions should be the person with Alzheimer's, a caregiver might find there's an unexpected benefit for him or her, too. The person may initially feel hurt or frustrated that his loved one doesn't recognize him, but if that hurdle is surpassed and it's clear that the person with Alzheimer's enjoys the visit, the care partner will probably feel gratified that he is giving his loved one pleasure. Research has found that caregivers might remain in a good mood for some time after the visit.
It is difficult for people to accept the fact that their loved ones don't recognize them, and it may take a long time to reach such acceptance. Furthermore, some simply won't be able to achieve this, as hard as they may try, but if they can come to terms with the situation, their lives will most likely improve significantly.
5. The person may remain in a good mood long after the visit is over
People with advanced Alzheimer's may continue to experience the emotional effects of happy or sad experiences for hours after an event has passed. This, in turn, might promote a positive or negative emotional tone, depending on the tone of the visit.
For instance, if a person living with Alzheimer's is visited by someone who is cheerful and smiling, who sings familiar songs to them, and who is completely present with them in a compassionate interaction, the positive emotional tone of this visit may last for several hours.
Conversely, if the person encounters a caregiver who is gruff, demanding ("Go and get your bath!"), or demeaning ("I'll have to get you a bib because you are spilling your food!") then the experience may cause a negative emotional reaction. Challenging behaviors may result and make the person more difficult to care for.
Marie Marley is the award-winning author of Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, and the co-author of Finding Joy in Alzheimer's: New Hope for Caregivers. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer's caregivers.