Suppose you are a spouse or adult child of a loved one with dementia. In that case, you may be considering how to inform others about your loved one's diagnosis of dementia.
Determining when and how to tell friends and family about a dementia diagnosis can be challenging. This blog post addresses this situation. You may be worried that letting others know about a dementia diagnosis could potentially change the way people interact with your loved one.
Dementia is hard to keep secret.
Just as you noticed something was wrong, family and friends may be sensing the same thoughts.
It is normal to have many thoughts when considering sharing a loved one's diagnosis of dementia.
You may be thinking
Are others noticing something is wrong?
Would my loved one want their diagnosis discussed with family and friends?
I am afraid what might happen if others learn that my loved one has dementia?
Would others treat my loved one differently if they found out?
Would family and friends understand?
Am I embarrassed to tell others?
Would others find out if I keep this a secret?
Could informing others create more problems?
As your loved one's disease progresses, keeping their diagnosis a secret will become even more challenging. Being honest and using the opportunity to educate friends and family can positively impact the long run. When you are ready to talk to family and friends, you may consider the following strategies.
Tell friends and family about your loved one's dementia diagnosis and how it has affected them.
Sharing web resources such as GeriAcademy blog posts, information from the Alzheimer's Association, the National Institute of Health, and books can be helpful.
When family and friends learn about your loved one's dementia diagnosis, they will want to know more, and often, they will want to help.
Give them more information about how the disease has directly impacted your loved one.
Help them understand that dementia has stages and know what your loved one can still do and their limitations.
Help them understand that communication is different with a person who has dementia, and provide suggestions on how to better communicate with your loved one. You can consider referring them to the GeriAcademy blog post on better communicating with a loved one who has dementia.
Help them understand that correcting your loved one when they make mistakes can cause frustration, and avoid doing so.
Tell them how they can help. As a caretaker, you will need breaks. Friends and family can help give you breaks by planning activities and keeping your loved one company.
When discussing a dementia diagnosis with children and teenager
Helping children understand dementia can also be challenging. Consider the child's age and level of understanding when discussing the diagnosis of dementia.
Answer the child's questions honestly and in a way that they may understand. Let them know that dementia is a disease that causes memory changes; no one did anything to cause the disease. Let them know that it is normal to feel sad and angry.
"Grandpa/Grandma has an illness that makes it hard to remember things."
"Sometimes Grandpa/Grandma may say things that they do not mean because of their memory illness."
"Grandma/Grandpa still love you, but their disease makes it hard to express their feelings."
When children live in the same house as a loved one with dementia, a caretaker may have more difficulty caring for both the child and the loved one. Being mindful of this is essential.
Make sure the child has time for their own interests, including social life with friends, school activities, and homework.
A child should not be expected to help take care of a loved one with dementia.
Set aside time to spend with the child, ensure they have all of your attention during this time.
Consider routine feeling check, ask the child how they are feeling and address those thoughts.
Sometimes children want to get involved. A child can play music, arts, singing, crafts, and reading to the loved one with dementia.
If the child is a teenager, recognize that their feelings may be very different. As well as feeling sad and angry, they may also feel embarrassed and not want to be around the person with dementia. Don't force teenagers to spent time with a person with dementia if they don't want to.
As your loved one's disease progresses, family, friends, and children may find it more challenging to interact with your loved one, and this is entirely normal. Continuing to communicate with friends and family can ensure that they better understand how to interact with your loved one and better help you.
I hope that this post was informative and helpful. Please read other blog posts on GeriAcademy on dementia and other aging-related topics.
This post was written by Geriatrician, Dr. Golnosh Sharafsaleh MD, MS, AGSF, FAAFP, creator of GeriAcademy.