Talking to Your Loved One About Alzheimer's
If you see potential signs of Alzheimer’s disease or related dementia, the best thing you can do is to start a conversation with your loved one, even if it feels scary or awkward to do. Alzheimer’s disease is progressive, which means the symptoms get worse over time. Talk to your loved one early so that you can both 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 common concerns.
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 may already be aware of the problem and worried what people will think or afraid about the future. Starting the conversation early is the best way to assure your loved one that you’re there for them and ready to help.
Step 2: Get Set
Once you know it’s time to talk, choose an appropriate time and place.
It is best to start the talk when you are alone together in a quiet setting.
Try to avoid talking when you or your loved one are feeling 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 both prepare for the future.
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?
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 how they’re feeling and what is important to them. Knowing their concerns and priorities can guide your actions at every stage.
It's important to keep the conversation simple and approach it in small pieces. People experiencing dementia symptoms can become overwhelmed with a lot of information.
Check in often, so talking about their condition becomes a normal part of your relationship.
Talking about dementia symptoms may trigger feelings of anger, fear, depression, or shame. These emotions often make people avoid discussing the topic with family or friends and it’s common to get resistance when you bring up symptoms of dementia. Don’t give up if this happens. Try again another day and keep trying as long as it takes.
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, then continues as time goes on and symptoms become more challenging.
As dementia progresses, it often gets more difficult to have conversations that your loved one can participate in fully. Talking early and often as issues come up helps you learn about what your loved one needs and make sure their wishes are followed as much as possible.
Here are some tips for how you can keep the conversation going as symptoms 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 with what matters most to your loved one and family.
Stay in touch with your own support network of family, friends, and community.
Avoid arguments. Confusion, memory loss and frustration may make your loved one behave irrationally, and you can't "argue" them out of it.
Remember that you’re doing your best as a caregiver. The Texas Department of State Health Services (DSHS) tips for caregivers, including the “Ten A’s for Alzheimer’s Care.”
For more in-depth guidance, check out the Institute for Healthcare Improvement’s Conversation Project.