Alzheimer’s disease is a difficult diagnosis for the person with the disease as well as for all those who love them. As the brain becomes weaker, it becomes harder to recognize your loved one’s “old self.” It is as though the person you once knew and loved is gone even when they are physically still present.
How can you maintain your relationship with loved ones with Alzheimer’s? Learning the effects Alzheimer’s disease has on mental and emotional responses is the first step toward shifting expectations of your loved one and adapting to a new way of relating with them.
It’s Not You, It’s the Disease
“It’s important to distinguish the disease from the person as early as possible,” says Virginia Wadley Bradley, PhD, a professor emeritus of medicine, gerontology, geriatrics, and palliative care at the University of Alabama at Birmingham. “Having the knowledge of what’s happening to the person’s brain and how it affects everything they do and say helps you provide empathy and support.”
Alzheimer’s disease can be broken down into three basic stages: early, middle, and late. In the early or mild stage, memory begins to fail. Your loved one may forget to take their medications or not take them as prescribed, have trouble remembering names, and misplace things. The ability to handle money matters gets fuzzy, causing them to overpay or forget to pay bills and become vulnerable to financial scams.
As the disease slowly moves into the middle and late stages, these symptoms get worse until the person you knew and loved responds to the world around them in different ways than they once did. It may be harder for them to control their emotions. They might get overly angry, sad, or frustrated. In time, they are not able to do even the most basic care for themselves.
Understandably, these behavior changes can greatly upset the person with Alzheimer’s and those who love and care for them. “There is a grieving process as you realize you cannot have the same relationship you once had,” Bradley says. “The person you love is still there but has lost so many abilities.”
A New Way to Relate
Coming to peace with your loved one’s diagnosis is the first step in allowing a new relationship to form. As their personality shifts, accepting that your relationship with your loved one has and will continue to change is key. This involves an approach to caring for your loved one called relationship-centered care that embraces who they were and meets them where they are.
Bradley says doctors use relationship-centered care to tailor care to a person’s unique abilities and preferences, as well as those of the family. “The doctor involves the family early on in all decisions and focuses on ways to preserve dignity and compassion for the person with Alzheimer’s disease while capitalizing on observations of the relationship between the patient and his or her family caregiver(s),” she says. “This differs from the physician-centered, ‘one-size-fits-all’ approach.
On a day-to-day basis, relationship-centered care relies on the caregiver’s knowledge of the past relationship with the loved one. “Each day may be different and bring different challenges,” Bradley says. “There are patterns of decline, but each person with Alzheimer’s is unique. It’s up to you to judge how the person is reacting.”
Use these five ideas for relationship-centered care to keep relationships strong when your loved one has Alzheimer’s:
- Recognize the familiar sparks
Just because your loved one can’t take part in life as they once did, it doesn’t mean they won’t find purpose or pleasure in the activities they once loved. “Recognize the sparks of the person you knew are there rather than focus on the aspects of their personality that are not there,” Bradley says.
For example, if your husband loved Reggae music, playing Bob Marley might bring joy to him. Or if Aunt Claire was an excellent baker, asking her to sift flour or knead dough may create a sense of purpose and well-being.
When possible, keep familiar photos and other well-loved things in your loved one’s home or room. These items may bring comfort and can be used to distract or refocus your loved one if they become confused or agitated.
- Roll with it
Alzheimer’s symptoms can be a moving target. What helps your loved one today may not work tomorrow. Keeping a familiar daily routine is recommended for people with Alzheimer’s. But you should be ready to change plans and expectations if your loved one is having a bad day. Adapting to your loved one’s responses and moods can help you both maintain your emotional well-being.
- Redefine expectations
It can be frustrating to find out that your loved one can no longer perform simple tasks or forgets basic information. But it’s best to set aside those expectations and try to keep a positive attitude. Don’t correct or say, “Don’t you remember?” Instead of emphasizing the error, redirect, distract, or change the subject.
Above all, try to keep a positive attitude. “If you remain calm and upbeat, your loved one is more likely to be calm and positive, too,” Bradley says. “People in the mid-stage of Alzheimer’s often become agitated and may mirror your emotions, so be mindful that your frustration could trigger their agitation.”
- Keep closeness
It’s easy to feel isolated when you have Alzheimer’s or are caring for a loved one with it. Encourage family members and friends to stay connected to your loved one in ways that are comfortable for them.
For example, to celebrate your loved one’s birthday, ask family members to record a short video message that you compile into a loop for your loved one to watch again and again. Or ask family members to create a scrapbook of photos with names, dates, and locations.
- Take care of yourself
Caring for someone with Alzheimer’s disease is a marathon, not a short race. As a caregiver, you need to make time to take care of yourself to keep up your own mental and physical wellness. Enrolling your loved one in an adult day care, asking other family members to step in every now and then, or hiring a caregiver allows you to get out and have lunch with friends, or just relax.
Bradley finds support groups are often helpful because they let you share your experiences with others who are going through similar challenges “It’s not just talking about how you feel,” she says. “It’s about problem-solving and getting ideas about new ways to relate to your loved one.”
Online communities offered through various organizations, such as the National Institute on Aging, can provide support as well.
The progression of Alzheimer’s disease will bring changes in how you relate to your loved one. But by understanding how Alzheimer’s symptoms affect behavior and using a relationship-centered approach, you may discover new and creative ways to stay close to your loved one and cherish every interaction.