See the Signs. Start a Conversation.
Even though it may feel scary or awkward to start a conversation about Alzheimer’s disease, it’s the best thing you can do. Alzheimer’s disease is progressive, which means the symptoms get worse over time. The earlier you begin talking, the better you can prepare and respond to changes that may come. You may be your loved one’s best hope for a better quality of life.
Think about your conversation as having four steps.
Step 1: Get Ready.
It’s hard to bring up sensitive topics, especially with a parent or spouse. You may wonder, What if he doesn’t think he has a problem? What if she refuses to discuss it? What if he gets mad? What will I say? Would it be better to wait? These are natural concerns to have.
However, once you notice problems that are not normal signs of aging it’s time to bring up the subject in a gentle and supportive manner. Your loved one is probably aware of the problem and may be worried what people will think or be afraid about the future. In a recent survey, 9 out of 10 people said they would want a friend or family member to say something if they notice memory or behavior problems.1
Beginning the conversation early is the best way to assure your loved one that you’re there for them and want to help. For many people that starts with finding out what is causing the symptoms so you can get the right diagnosis and treatment, community support resources, and plan for the future. If it is Alzheimer’s disease or another type of dementia, it may mean planning for care when symptoms get worse.
Step 2: Get Set.
Once you know it’s time to talk, choose an appropriate setting. It is best to open the conversation when you are alone together in a calm environment, such as eating breakfast or another quiet setting. Try to avoid talking when either one of you is stressed. Have a goal in mind, such as scheduling a doctor’s appointment to find out what is causing the symptoms. Getting a medical evaluation and a treatment plan will help you prepare for the future.
Step 3: Go.
How you approach the topic may be more important than the words you use. Be sympathetic and ready to listen. Ask your loved one about their feelings and priorities. For example, some people want to know all the medical information while others are focused on quality of life. Some people have strong feelings about where they want to live or who should make medical decisions. Knowing their concerns and priorities can guide your decisions at every stage.
Keep in mind that talking about Alzheimer’s disease may trigger feelings of anger, fear, depression, shame, or failure. These emotions often make people avoid discussing the topic with family or friends.
It’s common to get resistance when you bring up symptoms of Alzheimer’s disease. Don’t give up if this happens. Try again another day and keep trying as long as it takes.
Expect to have this conversation in small bites. People experiencing memory and thinking problems may get overwhelmed quickly and may not be able to participate for long. Check in with your loved one often so that talking about their condition becomes a normal part of your relationship.
It’s also important to talk with other trusted family members or friends. Get help for yourself so you can help your loved one.
Step 4: Keep Going.
Talking about Alzheimer’s disease is an ongoing process that begins with discussing early symptoms and seeing a doctor, and then continues as time goes on and symptoms become more challenging. You should expect the things you talk about to change over time. It’s best to address issues early to help maintain a good quality of life and make sure your loved one’s wishes are followed as much as possible. It gets more difficult to have good conversations as the symptoms get worse and eventually make it less likely for your loved one to participate. Talking early and often also helps you learn about what your loved one needs and explain your loved one’s wishes to family members and health care providers.
Here are some tips for how you can keep the conversation going as the symptoms of Alzheimer’s disease change.
- Let your loved one know you support them and will stand by them.
- Share your loved one’s wishes with family members and health care providers.
- Ask for help for what matters most to your loved one and family.
- Stay in touch with your own support network of family, friends and community, and remember that you’re doing your best as a caregiver.
Tips on Effective Conversations
Have the conversation as early as possible.
Have a conversation when you first notice memory and thinking problems so that you don’t lose the chance to plan with your loved one.
Think about who should lead the conversation.
Is there a certain family member or close friend who can positively influence your loved one?
Be prepared that the conversation may not go as planned.
You have good intentions, but your loved one may be angry or defensive. Don’t force the conversation. Take a break and plan to revisit the conversation later.
Plan specific ways to start the conversation.
Write down conversation starters, such as:
- I’ve been thinking through my own long-term care plans lately, and I was wondering if you have any advanced planning tips for me?
- I was wondering if you’ve noticed the same changes in your behavior that I’ve noticed?
- Would you want to know if I noticed any concerning changes in your behavior?
- What can I do to help?
Challenges You May Encounter
Arguments make matters worse.
Confusion, memory loss and frustration may make your loved one behave irrationally, and you can't "argue" them out of it.
Start a conversation when you are calm and not stressed.
Being stressed leads to added frustration, impatience and arguments, none of which will help your loved one or you.
Be patient with the process.
Remember, this is unlikely to be a one-time conversation. You may get resistance. Be prepared to keep having the conversation.
Adapted from The Conversation Project, a project of the Institute for Healthcare Improvement.
1 Alzheimer’s Association survey.