During World Alzheimer’s Month, as we spread awareness and information about Alzheimer’s and other related dementias, it is a good time to ponder how we are discussing dementia with our younger generation.
Are we talking with them about it?
How are we?
What do they want — and need — to know?
How can we improve the interactions between children of all ages and those with dementia?
Stigma of the Diagnosis
Stigma is real and can lead to isolation and reduced quality of life for those with dementia.
Many people continue to believe Alzheimer’s and dementia are a part of aging, but that is not the case. Just getting older doesn’t cause Alzheimer’s.
People diagnosed with Alzheimer’s and their families often feel that, due to a true lack of understanding and awareness of the cause and course of the disease, there is mistreatment in the community of those with the disease.
Stigma can lead to a fear of seeking medical care and even a diagnosis. Some don’t want their family members to know in case they will treat their senior loved one differently.
What They Don’t Know CAN Hurt Them
Not getting diagnosed early makes planning for the future a bit more cumbersome and harder to benefit from potential treatment to slow the damage caused by protein buildup in the brain.
When seniors wait to get evaluated and treatment begun, more damage to brain cells can occur which won’t be able to be overcome as it might if treated earlier.
Not informing the family can also mean that loved ones are not able to participate as fully as they would want in caregiving.
Those who hide their secret from the family are also leaving out the children. This doesn’t give them a chance at understanding the disease or how it is impacting their loved one.
Who knows, one of these bright young minds touched by dementia in their lives may be spurred into finding a cure!
Children, especially younger ones, may not understand about the disease and its effects without being included.
Naturally, the discussion needs to be age appropriate and explained in a way that they can understand.
Family caregivers need to let them know what to expect when they visit their senior loved one.
Family caregivers should explain how to respond to repetitive questions.
It is vital to let them know that their grandparents or other family members still love them as they did before but may not be able to express it anymore.
Specific behaviors such as wandering, labile emotions, confusion, anger or other changes will be difficult for children to understand unless you help them through it.
Family members, especially the parents, should expect their child to experience emotions such as sadness, grief, guilt, resentment, worry, confusion and embarrassment. Parents may need to help them find ways to cope with these new emotions.
Prepare for Children’s Reactions
They may wonder if something similar will happen to their own parents, family members or themselves. They need reassurance that any anger or misbehavior in their loved ones is not directed at them or something that they caused to happen.
Children may think that they themselves have misbehaved or irritated their loved ones to make them act as they do and should be made aware it is the disease causing certain behaviors and not anything they have done.
They may feel a bit jealous of the additional time family caregivers spend away from the family unit. They may not be getting as much attention as they were in the past and may feel a bit ignored.
Parents of children whose family is facing dementia need to keep communication open and free-flowing. You will need to be honest and explain as much as possible to help them understand and process the new situation.
Helping Children Cope
Family caregivers and parents of children affected by dementia should be given opportunities to express their emotions and ask questions about what they are observing.
They can feel tension in the family and should be told as much about the situation as possible to help them cope.
Equipping children to understand, empathize and handle all the changes happening to the people that they love will help the entire family avoid treating senior loved ones with dementia differently.
If they have questions about the disease or the behaviors they see in your senior loved one, give them the place to ask about their concerns. Answer them as honestly as possible.
Give your children support and provide them with comfort when things aren’t the same as they were before.
Create ways for them to reminisce and remember their older loved ones. Create photo albums with old photos either on paper or digitally.
Involve the Kids
Encourage them to find ways to make memories with their senior while they can.
Get them a journal where they can express their thoughts in a private place only they will see. This will help them work through their thoughts and emotions.
Help them to learn as much about the disease and its progression as they can understand so that they will be ready for the next step.
Find ways to make the time they spend with the person with dementia as enjoyable as possible. Plan activities that they will both enjoy doing together.
Get them involved in community events to help with fundraising or get support so that they can feel like they are making a difference in this disease.
Don’t put a child in a position of responsibility, such as “supervision,” without an adult present. They can help care for the person with dementia but shouldn’t be a primary caregiver, as this could lead to problems for all involved.
Things to Help Them Learn
Everyone in the family is affected when someone has dementia, including the children.
There are many different types of resources that you can make available to your children and teens to help them learn more about the person with dementia, the disease itself and how they can help.
There are numerous informational, and even humorous, books for different age groups that help to describe how their loved ones with dementia are changing. These books will help them realize that they aren’t alone in the way their lives are changing.
There are also books to help parents navigate the journey of dementia and explain it to their children.
Perhaps reading some blog articles that will provide more information about whatever topic your family is currently dealing with as dementia progresses will be helpful.
There are organizations to which you can reach out about the disease and support groups to help the family cope and learn.
You can find online virtual tours that you can all participate in that will take you through what it is like to have dementia that may make it easier for kids and teens to understand. Technology like this may help everyone in the family.
Dementia caregiving can last a long time, so being sure everyone in the family is aware and understanding of the disease will help you all manage the journey for the best quality of life for your senior loved one.