Those caring for a loved one who is showing signs of Alzheimer’s disease have first-hand knowledge of the level of devastation that can occur when that person’s medical diagnosis becomes their defining label. The stigma surrounding Alzheimer’s can make even the most stalwart friends and family members withdraw, leaving a caregiver and their loved one isolated.
Choosing to pursue a dementia diagnosis is, “a leap of faith thing—you’re hoping that it won’t be used against you,” says Teepa Snow, M.S., an occupational therapist and dementia education expert. But, outside judgment and internal emotions can quickly turn that leap of faith into an uncontrollable free fall full of painful feelings and life-changing consequences.
Caregivers can play a vital role in helping their loved ones cope with the possibility (and reality) of a diagnosis. Here are some general tips to keep in mind while discussing Alzheimer’s with your loved ones:
- Check your judgment at the door. Due to its controversial nature, pretty much any discussion of Alzheimer’s has the potential to become what Snow calls, “us versus them.” It can be the elder versus the rest of the family, it can be sibling versus sibling, or it can be caregiver versus doctor—the combinations for conflict are practically endless. It is vital to be able to let go of your judgment and temporarily suspend your feelings so you can listen to your loved one. Always seek their opinion first. Ask them, “What are your thoughts on how you’d like to be cared for in the future?” or “How do you feel about your ability to continue to live on your own?” Only after they have stated their views, preferences, and feelings, should you even consider offering your own.
Ideally, your concerns and their concerns will coincide and you can work together on a comprehensive plan of care. If you disagree, then at least you have a better grasp of their position, which may help you plan for future discussions on the topic. Snow says that it may even be beneficial to seek the assistance of a third party who can help you and your loved one reach a compromise and minimize strain on your relationship. - Be a supportive advisor. It’s important for a caregiver to attempt to shelve their own fear and misgivings so that they can help their loved one logically think through any major decisions involving Alzheimer’s. This is challenging because, as Snow points out, “dementia is a pretty scary word.” According to her, there are three main things a person should take into account when deciding whether or not to pursue a possible Alzheimer’s diagnosis: How at risk am I of being taken advantage of? Who around me could help me think through this? Who do I want to make decisions for me?
A caregiver should be ready to offer support and help their loved one work through the answers to each of these questions. Snow also mentions that many seniors fear being viewed as alarmist or whiny. They may be hesitant to bring up concerns about dementia to their family or their doctor. A caregiver who cultivates a relationship of mutual trust and respect with their loved one can help ease fears and create a safe space for discussing tough decisions. - Keep your cool. No matter how a discussion evolves, a caregiver should remain calm and patient. Depending on the temperament of your loved one and fellow family members, this can be difficult. But, as Snow points out, if your loved one begins to get angry, they may start to close off and not be very open to anything you have to say. She adds that the declaration, “I told you so,” should always be avoided, even if you’ve been telling your loved one to get tested for ages. You may feel justified in saying it, and it might feel cathartic at the time, but this statement will do nothing but polarize the conversation.
- Don’t make promises you can’t keep. According to Snow, one of the biggest mistakes family members make when discussing a diagnosis and future care options is making pledges that are either impractical or flat-out impossible. “Instead of saying, ‘I promise to never put you in a nursing home,’ you should say, ‘I promise I will do what I can to make the best decisions for you in the moment,’ ” Snow recommends. It can be tempting to swear that you will give hands-on care for your loved one no matter what, but such a vow likely sets the stage for future disagreement and heartache.
- In the event of a positive diagnosis, don’t rush. A popular way of approaching an undesirable situation is to get the bad news out of the way and immediately seek out factors that can be controlled and remedied. But, if your loved one has just been diagnosed with Alzheimer’s, Snow recommends temporarily putting on the brakes. “You can’t hear that you have a terminal illness and then start discussing the future,” she points out. Give your loved one and other family members some time to digest the news before starting to make plans for the future. She also suggests preparing for the potential of a positive diagnosis by searching for sources of support for you and your loved one before going to see a doctor.
Caregivers not only have the potential to be a source of encouragement and advice for an elder, they can also act as a liaison between their loved one and the rest of the family. While this may be a heavy burden, a level-headed, well-prepared caregiver may be able to prevent their family from becoming divided over the difficult issues presented by Alzheimer’s disease.