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13 Things People Affected By Alzheimer's Disease Want You to Learn

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With an estimated 5 million Americans or more living with Alzheimer’s disease, chances are you or someone you know is affected, yet many people don’t know what life with Alzheimer’s is truly like. It’s important for patients, families and caregivers to share the ways Alzheimer’s disease has had an impact on them, and the work we still have yet to do in treating the illness and researching for a cure.

We collaborated with the Alzheimer’s Prevention Initiative, led by Banner Alzheimer’s Institute, to ask our Facebook communities what they hope people learn about the disease. Their answers reveal how Alzheimer’s disease affects entire families, and above all, the importance of showing respect and love for the person behind the symptoms.

Here’s what they said:

1. “Alzheimer’s isn’t just being forgetful. It is a physical deterioration of nerves in the brain. The disease is painful for the patient and painful to watch loved ones go through. It affects so much more than just the patient’s memory.”

2. “Just because a [loved one] has it, it doesn’t mean [you] will lose their family member/friend altogether. It’s a struggle of course, but they’re still there.”

3. “It doesn’t only affect the elderly, and it’s not a black-and-white diagnosis. It comes in many forms.”

4. “Someone still lives inside the body of the mind that is overcome by Alzheimer’s. It may be a smile, a tear, a glare, a mumble, or a simple look… Don’t forget they are still there, and don’t let them alone thinking they don’t know or deserve your time.”

blurry hands holding with text that says someone still lives inside the body of the mind that is overcome by alzheimers

5. “They may not remember who you are or anything about their life, but they are still a person with real feelings and emotions.”

6. “As a clinician, it’s sad when family sometimes stop visiting because they feel there is nothing left of their loved one. It’s not true that there’s nothing left inside, we just need to find it.”

7. “Denial is the number one thing that can slow the process of a diagnosis. Don’t deny the signs.”

8.I want people to know how most of your friends seem to disappear! Maybe they feel uncomfortable and don’t know what to expect… He notices this and feels so bad for me because it affects my life, too. The spouse also [struggles with] this disease! Thank God for those special friends who have stuck with us!”

9. “I want people to understand how many different types of dementia [there are] and that not every case is the same.”

10. “When you lose a loved one to Alzheimer’s you mourn them twice: first when they are no longer the person you once knew and then when they actually pass away. It’s a brutal disease for everyone involved and it changes the way you view the world forever.”

11.Everyone asks the same question, ‘Does your dad still know who you are?’ I know the question comes from a place of love and curiosity, like it’s a gauge of some kind… I’d rather have people know what an amazing man my dad still is, so I focus on the good when I respond to the questions.”

12. “There is a lot of work to be done for those [who have] this terrible disease. At this point there is no cure, no hope, and very little resources and support for those living with Alzheimer’s and their caregivers. I hope in the very near future this changes.”

13.They don’t just fade away. They know something is wrong and [experience] shame they shouldn’t have to. Treat them with kindness and patience no matter what.”

Originally published: September 21, 2016
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