If you are caring for a person with Alzheimer’s disease then it’s likely that you spend a lot of time with them. This on-the-job training has taught you many things about the disease including how to interpret your loved one’s behaviors.
But when someone has never met a person with Alzheimer’s disease, they are clueless. And what they think they know is likely incorrect. As you know, until you spend time with a person with Alzheimer’s, the stigma clouds your understanding.
When people don’t understand something, anxiety builds and a fear of doing the wrong thing takes hold. People care but they don’t know what to expect, and therefore, they don’t know how to act. This may cause them to simply avoid the person or situation all together.
Even when they've overcome this initial fear, they are still nervous. They don’t realize that they should just relax and treat your loved one normally but with a little extra compassion and patience. Depending on the stage, many people with Alzheimer’s appear normal during brief visits. This confuses guests and may cause them to doubt that your loved one has dementia. This often results with them saying something that second guesses and annoys the caregiver.
As the day progresses, the guest may start to notice that your loved one repeats behaviors such as asking the same question or telling the same old story. At first they won’t realize that this is the disease. They may even start to quibble with your loved one. These situations are new to them and modifying their responses is a learned process. So a gentle reminder from the caregiver may be needed.
This holiday season remember that people care but they just don’t know how to act. They are afraid they will do something embarrassing. For the sake of your loved one, invite quests over anyway because isolation is deadly. But if possible, it’s always best to discuss your loved one’s unique behaviors prior to their visit. This will ease their apprehension and make for an enriched and loving time together.
About the Author: Mike Good is founder of http://togetherinthis.com/ an online resource helping family members caring for someone with Alzheimer’s.
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Add a Comment6 Comments
Good article because most of people don't understand the Alzheimer's patients mental conditions and some times very difficult situations arise when some one visit and interact these patients for the first time or after a long gap.
November 24, 2014 - 9:24pmThis Comment
You raise a good point regarding gaps in visits because a person's behaviors do change. Sometimes, they change on a daily basis other times it's the gradual decline. I heard of caregivers who send an email update to friends and family so they can stay aware of the changes in behavior.
November 25, 2014 - 9:32amThis Comment
Hi Mike, and thanks for your Share.
Finding out what a disease is actually like before visiting with a patient is great advice, not just for Alzheimer's but for other conditions as well.
As a cancer patient living with leukemia I have sometimes been appalled by rude and ignorant questions or behaviors I've encountered from people who mean well but who learned a lot of wrong things about leukemia from movies and TV shows. They often don't realize how little they know or even why they are so offensive when they think they are being "helpful" or sharing knowledge.
If you truly care about someone it should be worth taking some time to develop a basic understanding of the disease before visiting them, and to come prepared to offer unconditional support and encouragement.
Best,
Pat
November 20, 2014 - 6:30pmThis Comment
That is so true Pat. If people really care, they will take the time to self educate.I hope to help remove the stigmas that many people have about diseases. I wish we could start the educational process on how to help people with unique needs in elementary school but I know that's a stretch.
November 20, 2014 - 7:15pmThis Comment
Good idea to brief the guests in advance, so that they're not caught off guard. This simple conversation can alleviate any uncomfortable feelings and keep the gatherings positive for everyone!
November 20, 2014 - 4:45pmThis Comment
Yes, this is where the caregiver has to take a breath and remember that others are ignorant about their loved one's condition. You have to give the guest at least one chance to listen and learn - maybe 2 chances since Alzheimer's is so complex : )
November 20, 2014 - 7:17pmThis Comment