Every year, Alzheimer’s disease affects a growing number of people. Currently, about 5.7 million Americans are living with the condition, according to the Alzheimer’s Association. By 2020, nearly 14 million are expected to have this progressive brain disorder, which destroys memory, thinking skills, and often the ability to carry out simple tasks.
Alzheimer’s disease not only affects those who have the disease, but it also poses challenges for family members and friends trying to help a loved one cope with its effects.
Often, the first challenge is having a conversation about signs of dementia you may have observed. But talking to a loved one about this sensitive subject can be difficult.
A Reluctance to Face the Issue, Survey Says
A recent Alzheimer’s Association survey of 1,000 individuals found that about three-quarters of Americans would be concerned about offending a family member or friend if they were to approach that person about observed signs of Alzheimer’s.
About 8 out of 10 respondents thought a confrontation on the topic would cause unnecessary worry, while 69 percent expressed concern that it could ruin their relationship.
Roughly 1 in 3 polled wouldn’t say anything at all to a family member or friend who they thought was displaying signs of Alzheimer’s. More than one-third would wait until the individual’s symptoms worsened before talking to him about the problem.
“I’m not surprised by the results,” says Ruth Drew, a licensed professional counselor and director of Family and Information Services at the Alzheimer’s Association in Chicago.
“A lot of us avoid conflict,” says Drew. “I loved the statistic in this survey that showed that almost 8 out of 10 Americans would shift responsibility of discussing observed signs of Alzheimer’s disease to another family member. We’d all rather that somebody else does the heavy lifting when it comes to these difficult conversations.”
7 Tips for Talking About Alzheimer’s
Drew stresses that although Alzheimer’s and Brain Awareness Month has just ended this June, we need to keep the conversation about Alzheimer’s going all year long and learn how to talk about the disease with family and friends.
Here are a few tips that can help people broach the subject of dementia with someone who may be developing the condition.
1. Recognize the Signs and Symptoms
Early signs of Alzheimer’s often involve short-term memory loss, according to Drew. A person may forget if they have had breakfast that morning or have taken a medication. She adds that a person with early Alzheimer’s may also struggle with basic arithmetic or withdraw from things they really enjoy.
“It affects people in different ways,” she says, “but if you observe changes that are affecting everyday life, it’s time to get them checked out.”
Gayatri Devi, MD, a neurologist specializing in memory disorders at Lenox Hill Hospital in New York City and author of The Spectrum of Hope: An Optimistic and New Approach to Alzheimer's Disease and other Dementias, says that she asks her patients to visit a doctor if they notice “a consistent change in memory, language, or other cognitive abilities over time, without a clear antecedent — like a stroke or head injury — to account for it.”
To learn more, check out the Alzheimer’s Association’s 10 Early Signs and Symptoms of Alzheimer’s.
2. Don’t Put Off the Conversation
Drew encourages families to have a talk about Alzheimer’s symptoms and plan for care as early as possible — even before a family member exhibits signs of the disease.
But even when someone is already in the early stages of Alzheimer’s, they may still be able to express their wishes and have a voice in their future care.
“I have never had a family come to me and say, ‘We’ve talked about this too soon,’” says Drew. “It’s always the reverse. They always wish they had done these things at the beginning instead of waiting. In some cases, families wait too long to put things in order and have conversations when a person is still well enough to let you know what his or her preferences are.”
Furthermore, the sooner people get medical advice about potential Alzheimer’s symptoms, the better.
“Early signs can indicate Alzheimer’s, or maybe it’s something different,” says Drew. “It may be something that is very treatable and curable.”
Although there are no treatments to cure Alzheimer’s or stop it from progressing, some medication can help decrease symptoms for a limited time.
“Some medications seem to work better the earlier people start them, so there is that benefit,” says Drew.
RELATED: How Alzheimer’s Disease Is Diagnosed
3. Pick a Comfortable Time and Setting
If you do sit down to talk to someone about possible signs of Alzheimer’s disease, choose a relaxed setting with few distractions. To help things go smoothly, you may also want to practice what you want to say in advance.
Drew says that the right time and place is different for different people, but if you know the person well, you may know what will work best for them.
One woman waited for a trip home at Thanksgiving to talk to her parents about the subject, according to Drew. The atmosphere at the holiday felt right for a loving and productive conversation.
“The woman asked her parents, if she ever saw any changes in them that made her worry, would they want her to tell them about her concerns?” says Drew. “That opened the door to a conversation at a time when nobody was upset or worried. It gave the parents a chance to say, ‘Yes! We would want you to tell us.’”
4. Keep Trying No Matter How Much Pushback You Get
Talking about Alzheimer’s is a sensitive subject. Often people don’t want to recognize that they may be exhibiting signs of dementia. They can be defensive and fearful. Making progress can take great patience.
“It’s common to deal with a parent who says, ‘That’s ridiculous. I don’t want to talk about that,’” says Drew. “They may say that they don’t have a problem; everyone else has the problem. Recognizing that a person has this progressive, incurable disease, that’s a big blow.”
Dr. Devi adds that people need to know that Alzheimer’s is a “spectrum” disorder with different levels of severity. “Just because you know someone in a nursing home with Alzheimer’s, that might not be where you are going to end up,” says Devi. “Most people with Alzheimer’s live in the community and are functioning well. “
When having a conversation about Alzheimer’s, be candid, but also show the person respect and listen. Ask them if they have noticed any problems with their memory or thinking, and tell them the signs you’ve noticed. While it’s important to be honest, try to avoid conflict that can lead to resistance.
Although a parent or friend may keep refusing to talk about the topic, Drew advises to not give up.
“You may have to back off and try another day, but keep trying,” she says.
RELATED: How to Persuade a Person With Signs of Dementia to Get Professional Help
5. Get Family and Healthcare Providers Involved
If you’re having difficulty communicating with a parent or other relative about Alzheimer’s, see if another family member or a close friend might be willing to try. Someone else may get better results.
If signs of early-stage Alzheimer’s are apparent, it’s also important to get the individual to see a doctor right away for a comprehensive evaluation for the disease.
6. Create a Concrete Plan
Developing a plan of action can help families cope as the disease progresses. Again, the sooner a plan is in place, the more likely the person who has Alzheimer’s can have a say in what should be done.
“When people wait until a crisis, oftentimes their options are very limited,” says Drew. “But when we plan ahead, we’re not caught off guard — we’re able to respond better. “
Having a plan in writing can be especially helpful. “A patient might say that he or she was never told about a plan — even though they were, but now they’ve forgotten,” says Devi.
A few of the elements that should be in a care plan include:
- Care Needs What level of care does the individual require? A round-the-clock attendant, or occasional help with activities? Who will be on the patient’s care team and what will be their responsibilities?
- Finances What is the person’s financial situation? How might care expenses be paid for? Who should be the one in charge of money and healthcare decisions?
- Transportation Is the person currently able to drive? What happens when it’s not safe for them to drive — how will they get around?
- Day-to-Day Organization What activities can the person handle and enjoy? How can you structure activities that continue to engage the individual?
For more information on developing a course of action, check out the advice from the Alzheimer’s Association.
7. Reach Out for Professional Help
No matter what your situation, Drew recommends exploring the resources that the Alzheimer’s Association has to offer.
“No one has to go through this alone and that’s where the Alzheimer’s Association comes in,” she says. “We have information about the disease progression, about getting a diagnosis, about the warning signs, about what good care looks like, and more. We can connect people to the information and resources they need.”
The Alzheimer’s Association is available 24 hours day at Alz.org or by calling 1-800-272-3900.