By, Nicole Ruggiano, PhD, MSW
When caregivers tell me how much their loved one's dementia symptoms upset them, they are most upset when their spouse or parent does not recognize them anymore. I understand this first hand. When my grandmother's dementia became severe, she would become scared and upset when I visited her. She didn't know who I was anymore. To her, I was a stranger who entered her home uninvited. There was nothing I could say to make her understand that I was her granddaughter. I even pointed to photographs of me that were hanging in her apartment to show that she did, in fact, know me. However, this didn't help and she remained agitated and scared. While this was an emotional process for me, it is a common symptom for people with dementia and is a result of the changes to the brain caused by Alzheimer's disease or other type of dementia.
Recognizing Someone is a Complex Mental Process
For those of us without dementia, recognizing a friend or family member seems really simple because we do it without thinking about it. It's unconscious. For example, when I return home from work and see my husband, I instantly know who he is without explanation or thought. The truth is, though, that recognizing someone requires remembering several pieces of information about another person. For instance, consider that the following are all separate memories that need to be pieced together to recognize a person. It requires:
When Memory Fails
Even for people without dementia, this process of recognizing someone we know fails. For instance, have you even experienced the following scenarios:
Take Lisa's* experience. Lisa is a caregiver living in Tuskegee who cares for her father, who has dementia. During an interview for one of our projects, Lisa explained how her father no longer recognized her as his daughter. However, sometimes when she would visit him, he would tell her stories about his daughter, named Lisa. This confused Lisa, because she knew her father remembered having her as a daughter, but does not recognize her as his daughter today. The stories he would tell her were about Lisa when she was a little girl. In this case, memories related to facial recognition may have been failing, though her father's long-term memories from years ago were still in-tact. He didn't understand that the person he was talking with and his daughter, Lisa, were the same person.
In other cases, people with dementia are confused about their relationship with people they know. For example, we once interviewed Victoria*, a woman in Birmingham who lived with her father as she cared for him due to his dementia. Victoria explained that her father often confused Victoria with her mother, who passed away several years ago. In this case, her father didn't think that Victoria was a stranger, but his memory of how they were related was damaged.
Coping With Your Loved One's Memory Loss
Even though it is common for people with dementia to forget who their loved one's are, it is one of the most upsetting of dementia symptoms. Many caregivers report hurt feelings when their spouse or parent doesn't recognize them anymore. It's also common for caregivers to feel unappreciated or resentment when the person they provide care for doesn't recognize them or maybe even recognizes other family members, but not them. There are ways to cope.
Accept what you can't control.
It's hard when your loved one doesn't recognize you. It can be shocking the first time it happens. However, accepting the fact that this is part of the dementia progression can help caregivers adjust their expectations when we interact with them. While we still may grieve the loss in relationship, it can help us not take the memory loss personal and find ways to make the best of future interactions.
Resist the urge to correct them.
When we accept that memory loss is part of their medical condition, it's easier to acknowledge that we cannot force someone with dementia to remember who we are. Some caregivers, out of frustration, will try to correct the person with dementia or argue with them when they incorrectly identify people. However, people with dementia do not recognize that they have memory loss. So, such efforts can result in the person with dementia becoming confused, agitated or upset.
Focus on what the person does remember.
Many caregivers report that their interactions with their loved one improved once they go along with what their loved one's new reality is. For instance, I once had a caregiver, named Jane*, who stated that her mother began confusing her with her mother's twin sister. This resulted in several interactions that ended up with both women being upset. I suggested, "What if the next time you visit, you went along with it and let her think that you're her sister?" Jane later reported that this helped improve her visits with her mother tremendously. Jane started to bring family photos during her visits to help jog her mother's memory. The caregiver even reported that she learned so many interesting and funny stories about her mother and aunt from when they were young women. For Jane, the stories were new, but for her mother, she was reminiscing with her sister.
Even with acceptance, these changes in your loved one can be distressing and depressing. Many caregivers feel isolated and report that no one can understand their experiences. For these caregivers, joining a support group may help cope with negative feelings and learn ways of improving their caregiving experiences. Research has demonstrated the effectiveness of caregiver support groups on improving mental health. If you aren't sure if there are any support groups in your community, contact your local Area Agency on Aging to learn more about programs in your area.
Dealing with dementia is difficult. Learning more about why our loved one's behaviors are changing can help in coping with the challenges of caregiving. It also provides opportunities to learn more from one anther. If you have strategies that were effective at dealing with your loved one's memory loss, feel free to share them with others so we can educate and support one another.
*Names of caregivers have been changed to protect their privacy.
The Caregiving 101 is a resource for caregivers in Alabama who want to learn more about caregiving and dementia.
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