Alzheimer’s disease is a difficult diagnosis for the person living with it and everyone who loves them. As the brain deteriorates, it becomes more difficult to recognize the “old self” of your loved one. It is as if the person you once knew and loved is no more, even though they are still physically present.
How do you maintain relationships with loved ones with Alzheimer’s? Learning the effects of Alzheimer’s disease on mental and emotional responses is the first step in changing your expectations of your loved one and adopting a new way of interacting with them.
it’s not you, it’s the disease
“It’s important to separate the illness from the person as soon as possible,” says Virginia Wadley Bradley, PhD, emeritus professor of medicine, gerontology, geriatrics, and palliative care at the University of Alabama at Birmingham. “By knowing what’s going on in the person’s brain and how it affects everything they do and say, you can provide empathy and support.”
Alzheimer’s disease can be divided into three basic stages: early, intermediate and late. In the early or mild stage, memory starts to weaken. Your loved one may forget to take their medicines or not take them as prescribed, have trouble remembering names, and lose things. The ability to handle money matters becomes blunted, making them overpay or forget to pay bills and vulnerable to financial scams.
As the disease slowly progresses to the middle and end stages, these symptoms get worse until the person you know and love is reacting to the world around them in a different way than before. It can be difficult for them to control their emotions. They may be extremely angry, sad or frustrated. Over time, they become unable to provide even the most basic care for themselves.
Obviously, these changes in behavior can be extremely distressing for the person with Alzheimer’s and the people who love and care for them. Bradley says, “There’s a grieving process when you realize that you can no longer be in the same relationship.” “The person you love is still there, but has lost a lot of potential.”
a new way to communicate
Accepting your loved one’s diagnosis is the first step toward starting a new relationship. As their personality changes, it’s important to accept that your relationship with your loved one has changed and will continue to change. This includes an approach to caring for your loved one called relationship-centred care, which acknowledges who they were and meets them where they are.
Bradley says doctors use relationship-centered care to match a person’s unique abilities and preferences as well as the family’s care. She says, “The therapist involves the family first in all decisions and focuses on ways to maintain respect and compassion for the person with Alzheimer’s disease, while benefiting from observation of the relationship between the patient and his or her caregivers.” “This is different from the physician-centered, one-size-fits-all approach.
On a daily basis, relationship-centered care relies on knowledge of the caregiver’s past relationships with the loved one. “Each day can be different and bring different challenges,” says Bradley. “There are patterns to decline, but each person with Alzheimer’s is unique. It depends on you how the person reacts.
Use these five relationship-centered caregiving ideas to keep relationships strong when your loved one has Alzheimer’s:
- recognize familiar sparks
Just because your loved one can’t participate in life the way he used to, doesn’t mean he won’t find purpose or enjoyment in the activities he previously enjoyed. “Recognize the spark in the person you knew was there, rather than focusing on aspects of their personality that weren’t present,” says Bradley.
For example, if your husband likes reggae music, playing Bob Marley might bring him joy. Or if Auntie Claire was an excellent baker, asking her to sift or knead dough might instill a sense of purpose and well-being.
If possible, keep familiar photos and other valuables in your loved one’s home or room. These objects can provide comfort and can be used to distract or redirect 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. People with Alzheimer’s disease are advised to maintain familiar daily routines. But if your loved one is having a bad day, then you have to be ready to change plans and expectations. By being in sync with your loved one’s reactions and moods, you can both maintain your emotional well-being.
- redefine expectations
It can be frustrating to learn that your loved one can no longer perform simple tasks or forgets basic information. But it’s best to put those expectations aside and keep a positive outlook. Do not correct and say, “Don’t you remember?” Subtract, distract, or change the subject instead of emphasizing the mistake.
Above all, try to maintain a positive attitude. “If you stay calm and happy, your loved one is more likely to stay calm and positive, too,” says Bradley. “People with middle-stage Alzheimer’s disease often become agitated and may mirror your feelings, so be aware that your frustration may increase their arousal.”
- keep close
It’s easy to feel isolated when you have Alzheimer’s or are caring for a loved one. Encourage family members and friends to stay connected with your loved one in a way that is comfortable for them.
For example, to celebrate your loved one’s birthday, ask family members to record a short video message that you loop together for your loved one to watch over and over again. Or ask family members to create a photo scrapbook with names, dates and locations.
- Take care of yourself
Caring for someone with Alzheimer’s disease is a marathon, not a sprint. As a carer, you need to make time for your own care in order to maintain your mental and physical well-being. By enrolling your loved one in adult daycare, asking other family members to visit occasionally, or hiring a caregiver, you can go out and have lunch with friends, or just relax.
Bradley believes that support groups are often helpful because they allow you to share your experience with others struggling with similar issues. “It’s not just about how you feel,” she says. “It’s about solving problems and coming up with ideas for new ways to connect with your loved one.”
Online communities offered through various organizations such as the National Institute on Aging can also provide support.
The progression of Alzheimer’s disease will change the way you relate to your loved one. But by understanding how Alzheimer’s symptoms affect behavior and using a relationship-centered approach, you can find new and creative ways to stay close to your loved one and cherish every interaction.
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