An Alzheimer’s diagnosis can affect many different people throughout your life. Whether it’s your parent, grandparent or spouse who’s received that diagnosis, the disease is going to change how you interact with your loved one — and it’s also going to change how they’re able to interact with their children, grandchildren and friends.
Communication is key in all those relationships. While you may be worried about how friends and family will respond to the news, they’re probably already aware that something’s not quite right. Talking openly about your “secret” can often bring a huge sense of relief. In fact, family and friends will likely be eager to help once they understand the situation.
Here are some practical tips for explaining your loved one’s Alzheimer’s diagnosis to friends, family members, and the other important people in your life.
Start by sharing some basic facts about what Alzheimer’s disease is — and what it isn’t.
Simply telling a friend or family member that your loved one has Alzheimer’s can be the hardest part of the conversation. It can take a lot of courage to say those words aloud — but once you’ve said them, the real conversation can begin. Your friends and family will probably want to know how the disease will affect your loved one, and what they can do to help. They may also have a few common misconceptions you can clear up.
Depending on the other person’s knowledge level, it may be best to start with the basics: Alzheimer’s is a disease that causes brain cells to shrink and die. It’s a progressive disease, which means the symptoms will increase over time. But while memory loss is the most frequent symptom, that doesn’t mean your loved one will be unable to remember anything. Even as they become forgetful about recent events, they may continue to recognize familiar faces for years.
Many people believe Alzheimer’s and dementia are the same thing, so you may want to clear up that distinction. Dementia is a level of mental decline that seriously impairs daily functioning; and it can be caused by a variety of conditions, including late-stage Alzheimer’s. However, people in the early stages of Alzheimer’s don’t have dementia, and may continue to live and work independently for years — especially with the right diet, exercise, and an active social life.
Start by sharing some basic facts about what Alzheimer’s disease is — and what it isn’t.
Simply telling a friend or family member that your loved one has Alzheimer’s can be the hardest part of the conversation. It can take a lot of courage to say those words aloud — but once you’ve said them, the real conversation can begin. Your friends and family will probably want to know how the disease will affect your loved one, and what they can do to help. They may also have a few common misconceptions you can clear up.
Depending on the other person’s knowledge level, it may be best to start with the basics: Alzheimer’s is a disease that causes brain cells to shrink and die. It’s a progressive disease, which means the symptoms will increase over time. But while memory loss is the most frequent symptom, that doesn’t mean your loved one will be unable to remember anything. Even as they become forgetful about recent events, they may continue to recognize familiar faces for years.
Many people believe Alzheimer’s and dementia are the same thing, so you may want to clear up that distinction. Dementia is a level of mental decline that seriously impairs daily functioning; and it can be caused by a variety of conditions, including late-stage Alzheimer’s. However, people in the early stages of Alzheimer’s don’t have dementia, and may continue to live and work independently for years — especially with the right diet, exercise, and an active social life.
Provide a bit of guidance on how to interact with a person who has Alzheimer’s.
You may want to encourage friends and family to reintroduce themselves at the beginning of each visit, by making eye contact and briefly reminding your loved one who they are. However, it’s also a good idea to explain that a person with Alzheimer’s may reply with saving appearance responses (SARs) like, “Of course! I remember you,” even when they don’t. To reduce anxiety for your loved one, people should avoid asking direct questions about whether they remember something — or correcting them if they remember incorrectly.
It’s also important to point out that Alzheimer’s will affect more than just your loved one’s memory. A person with the disease will frequently have trouble concentrating, and may become easily confused and defensive as the disease progresses — which means it’s important to avoid overly complex or fast-paced conversations, and stay focused on familiar topics. Many people with Alzheimer’s enjoy reminiscing about their younger days, and may love talking about old family photos and singing along to music from their era.
And although this isn’t an easy topic to bring up, you may want to explain that some people with Alzheimer’s can experience surprising changes in mood and behavior. If that becomes a concern, it’s worth reminding friends and family that uncharacteristic anger and suspicion are simply symptoms of the disease. There’s no need to take them personally.
Explain how your loved one’s needs may change — and let people help when they offer.
As you describe the symptoms of Alzheimer’s, and offer recommendations for positive interactions, you may also want to explain that your loved one’s needs will change over time. In the disease’s early stages, the best therapy is simply to keep the person with Alzheimer’s involved in ordinary life as much as possible — by calling and visiting them, inviting them to social gatherings, and planning fun activities they can participate in.
However, as the disease progresses, your loved one will increasingly need help with basic tasks like bathing, dressing and eating. Nobody can provide 24/7 care all on their own, so remember that it’s okay to ask for help. Some of your friends and family members will probably ask how they can contribute, too. When people offer to help, let them know what you need — whether that’s housekeeping, errand-running, meal prep, or any other daily responsibilities. Many people in your life will be grateful for opportunities to pitch in.
Remember to include younger children and grandchildren in the conversation, too. Kids can be a great source of joy for a person with Alzheimer’s — although, depending on their age, they may not clearly grasp the situation. Still, you can help them understand by providing simple and honest explanations, such as, “Grandma has an illness that’s making her forget things.” You may also want to suggest activities they can share with the person who has Alzheimer’s, such as reading stories aloud or working on colorful craft projects.
While there’s no “right way” to talk to friends and family about Alzheimer’s, clear communication is the single most important ingredient. While you may feel that the details will upset and frighten the people close to you, the exact opposite is true: once your family and friends have an accurate understanding of what’s happening, they’ll be much better equipped to provide compassion and support, and offer useful help when you need it most.
If a friend or family member wants to learn more about the disease, or about what they can do, try pointing them to articles, websites and other sources of information that have been helpful to you. And if they ask any questions you’re unsure how to answer, remember that you’re always free to reach out to your doctor and ask. After all, the more you learn and understand about the disease, the more you can help your loved one — and enable others to help them, too.
