Community Views: What Do You Wish More People Knew About Living With Alzheimer’s?
Last updated: June 2023
To learn more about the experience of living with or caring for someone living with Alzheimer's disease, we reached out to our Facebook community on AlzheimersDisease.net and asked: "What do you wish more people knew about living with Alzheimer's?"
More than 230 people in the community responded. Here is some of what was said.
Go with the flow and have patience
The importance of having patience with your loved one was a sentiment that was shared over and over. Patience does not come easily and can waver from day to day, but it is often key to getting through.
"Have patience as the caregiver...hardest thing in the world was taking care of my Daddy for 8 yrs around the clock and watching him deteriorate...but the world has changed for them so much you sometimes have to go along with whatever they think they see or hear...love them completely!""Patience. It's a hard road to be on.""They need to be patient, loving, and understanding. Never correct, speak angrily or condescending. Read the 7 stages of the disease and take advantage of the resources available. Learn all you can."
Caregivers need support too
Caring for a loved one is not a job that you can call in sick to when you are feeling tired and overwhelmed. Those living with Alzheimer's, depending on the stage, often need around-the-clock care. Check in on caregivers, ask what they need, and follow through.
"How UNDERAPPRECIATED most familial caregivers are.""That those of us who take care of them often need a break.""People need to realize that the caregiver needs help! I'm exhausted from trying to take care of my Mom. Here are some ways that friends and family can help...Call them; Visit; Watch/Babysit them...Anything helps."
Keep the patient's perspective in mind
Remember that those who are living with Alzheimer's disease are still living. Keep their perspective in mind while practicing patience and understanding.
"Maybe we are having a hard time versus you thinking we are giving you a hard time.""That we live moment to moment. Some are better than others."
Find joy in the little things
As one of our patient leaders recently said, "We count the cost, but let's not forget to count the benefits. There is a lot of life after diagnosis - let's make the most of it!" Find the joy where you can.
"You get to remind them who they are! You can tell them the same joke over and over. They can still remember songs.""I found out music really helps with their care. My mom and I sang together as she was losing her battle, but the music kept her happy.""I think the most important thing is to remember not to take things so seriously! If things happen, don’t make a big deal of it, they won’t either! Learn to laugh with them! It's gradual and progressive, not always debilitating right away. Keeping a routine helps the patient and can enrich your life, too!"
Get on their page!
Your reality is not necessarily their reality. Community members shared again and again that it is important to meet those living with Alzheimer's where they are.
"Enter their world and agree to the things they talk about. Don't correct them.""Play along. Alzheimer's patients may not know who you are. They may think you're someone else. Don't disagree with them... It's frustrating and embarrassing to them to think they don't know what they are talking about.""That your reality is not theirs....they are living in another world in their minds. And you need to indulge that to some extent."
Please keep visiting those who are living with Alzheimer's. It is beneficial not only to them but also to their caregivers. Just having your presence can be helpful.
"Please don't talk about them. Talk to them.""People, especially old friends, should know how important their visits are. Their friend may not be able to share memories any longer or talk about sports and the news, but they will always enjoy and appreciate the smiles and kind words shared over a coffee or ice cream.""Please do not walk away. You are my friend too. You walk away because you are scared. You are not the only one."
Dignified care and communication
How we talk to (not at) someone living with Alzheimer's means a lot. They understand much more than people generally give credit for. Love and communication can go a long way.
"Talk to the person slowly and have eye contact. You can tell a lot by their expression. You can tell if you answered wrongly, even if you just guessed what the question was. Never try to take something by force out of their hands. Talk gently and smile and take it slowly while changing to any other subject...They understand so much more than we think!!""It's not contagious. They still need you, and they are the same person; they just work on a different level. They still need acceptance and love."
Just how devastating it is!
"How horrible it is!!!""Your loved one may not remember you from one minute to the next. There may be sleepless nights when your loved one may need you because they're frightened of the dark (nonstop yelling). It's a heart-wrenching disease.""Remember she/others with this horrifying disease have no control of their character, actions, and decisions."
Understanding people living with Alzheimer's and their caregivers
All of your thoughts and feelings are valid and have a place to be expressed here, including your anxiety and fears of the unknowns with Alzheimer's disease. We want to say thank you to the community for such a candid conversation about a vulnerable topic.
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