It’s often said that family members are the “second victims” of dementia, Alzheimer’s disease or another form of memory impairment. Since the disease doesn’t affect just the individual but the relationships and lives of the entire family, there will come a time when you need to explain to children and teenagers what’s happening to Grandma or Grandpa.
“It can be challenging for parents and other families to know how much to explain to their children,” says Barbara Harrison, Executive Director of Bridges® by EPOCH at Pembroke, a memory care assisted living community in Pembroke, MA. “The natural reaction, of course, is to protect them or not share too much – that just comes with being a parent. However, children are part of the family as well, and it’s important for them to receive age-appropriate explanations about the shift in their loved one’s life.”
There are a variety of reasons why this is important, says Harrison. “Children are aware of more than we give them credit for, and they can tell when the grown-ups around them are experiencing tension and stress. That can be scary for them. By finding out what’s going on, they may be less fearful and be reassured since they now know what the problem is.” It can also have the effect of helping children understand that their loved one’s behavior is not directed towards them and is instead an aspect of the disease.
“Finally, by letting kids know what’s happening, it helps them become a part of the acceptance journey. Although it’s distressing, it could be more distressing if they were to find out later on that everyone knew about it except them. That can make it very hard for them to trust in the future that grown-ups around them are telling the truth.”
Before you have the discussion with your child, you’ll want to get a sense for how much information they’ll be able to cope with. Teenagers should receive more information than children, but might not be equipped to handle all the nitty-gritty details (nor should they). When crafting your discussion, think about your child’s relationship with the individual with dementia, how close they are and where the person lives. You may need to take a different approach for a grandparent they see weekly versus their great-aunt who lives across the country.
Tips on Having the Conversation
Here are some tips from the Alzheimer’s Association® that you can use to help kids in your family better cope and understand the effects of dementia.
- Be open and honest. Offer clear, age-appropriate explanations honestly and as openly as possible (“You know that Grandma has been acting a little differently recently, and that’s because there’s something going on in her brain”). You’ll want to explain what the disease is, as well as how it is affecting your loved one. You’ll also want to prepare them for the fact that their loved one isn’t going to get “well,” and that there will be more changes in the future. However, be sure to not alarm your kids by going into too much detail – they don’t need to know about late-stage dementia yet if your loved one is exhibiting only mild symptoms.
- Allow them to ask questions. Kids are curious, and by asking questions, they’re able to begin wrapping their heads around a new reality. Answer the questions as honestly as you can, and if you don’t know the answer, it’s okay to say that. Two questions you’ll probably get are: “How do you get dementia?” and “Can I get sick from dementia, too?”
- Reassure and comfort them. Your child may be confused, upset and possibly even afraid by the news. Be sure to let them know that what they’re feeling is natural and okay. You can even share that you, yourself, share similar feelings about the situation. With younger children, it’s possible that the news might not “stick” right away, so you may not get questions or immediate reactions.
- Let kids know how they can help. Kids enjoy helping and feeling useful. Encourage that by giving them ideas of tasks they can do – it doesn’t have to be household chores, but it could be writing letters to their loved one, visiting with them or even raising money for dementia research.
How to Help Children
After the initial conversation, your child may react in different ways as dementia becomes a part of life. They could be:
- Confused about why their loved one is acting differently
- Sad about how the person is changing
- Frustrated by the new things it’s necessary to do, like repeating phrases or words
- Resentful for how much time and effort is required
- Jealous of the attention their loved one is getting
- Guilty for feeling resentful
- Afraid of how their loved one behaves
- Unsure how to behave around the person
- Worried that they or another family member will develop dementia
- Embarrassed to have visitors over if the loved one lives with them
As with everything related to dementia, you’ll want to remain honest, open and encourage discussion. Here are two things you can do to help your child adjust to the new normal:
- Let them know it’s not their fault. Individuals with dementia can become confused, frustrated, angry or agitated due to a number of factors. If that anger or other emotion is directed towards your child, they may feel like they “caused” their loved one to act that way. Let them know that, no matter how their loved one reacts, it is because of the disease – it is not the child’s fault.
- Be a role model. The best way to teach your child how to interact, cope and understand the person with dementia is to show them. Teach your kid how to react to the changes and model good behavior.
If you would like to learn more about how to explain dementia to kids or if you’d like more resources for caregivers, please call us at 781.754.4500.
Compassionate Care for All Stages of Memory Loss
Bridges® by EPOCH at Pembroke provides assisted living memory care that is comfortable, positive, safe and engaging. Exclusively dedicated to caring for those with Alzheimer’s disease and other forms of dementia or memory impairment, we’ve created a wellness-focused lifestyle that promotes dignity and individual preferences. Our memory care professionals receive specialized and ongoing training designed to help residents maximize their independence in a secure, calm environment – making a truly positive impact on the lives of our residents each and every day.
Dedicated Memory Care
The team of compassionate dementia-care experts at Bridges® by EPOCH at Pembroke delivers 24-hour assistance and inspiring programs that exercise physical and cognitive abilities – all in a supportive, purposefully designed environment. For added peace of mind, we offer simple, all-inclusive pricing options that help make the process a little easier for families.
Community Amenities
Characterized by a beautiful residential design, Bridges® by EPOCH at Pembroke provides everything residents with memory loss need to enjoy comfort, familiarity and security. Soft colors, directional cues, aromatherapy and interactive life stations create a peaceful and secure environment where residents feel at home.
Call us today at 781.754.4500 to learn more about Bridges® by EPOCH at Pembroke or to schedule a personal tour.