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Talking to a teen about a family member diagnosed with dementia can be incredibly difficult for caregivers. The approach taken when you have this conversation can help your teen cope effectively with the news and empower them to preserve a meaningful connection with their loved one. 

When to Tell a Teen About a Loved One Diagnosed with Dementia

For most teens, the family member with dementia will be a grandparent or older family member, but for some it may be a parent.  Even if, at some level, a teen had some awareness that the diagnosis was coming, hearing it spoken aloud is a hard-hitting reality. It’s imperative to have the conversation as soon as possible after a diagnosis of dementia is confirmed, so that your teen does not find out “accidentally” from someone else in (or outside) the family; this would compound stress for all and may feel like a breach of trust to the teen.

Beginning the Conversation about Dementia with Your Teen 

Be prepared for the fact that your teen will experience a jumble of emotions from shock and anger to grief and even shame. Many teens feel they can’t talk to their peers about such devastating news. It’s also not uncommon for them to feel like they can’t go to other adults in the family whom they may see as struggling to cope with their own emotions while trying to plan for the family member’s medical care. 

First, plan ahead for when and where you will have the conversation. If at all possible, avoid having the conversation with your teen when they’ve had a lousy day at school, work, or practice. Give them some space at home to recover from their day and then invite them to sit down for a chat.

Second, manage your own emotions. Begin the conversation about a family member with dementia when you feel as centered as possible. Your teen will need your guidance and support; they should not feel like they have to support you. You want to create a safe space for them to experience whatever emotions come-up for them.

Third, be prepared to provide support. Make sure you have resources ready to share with your teen, should they need them. Of course, they can lean on you; also, be able to recommend other family members, community resources, or support groups. The teen probably won’t want this at that very moment, but you can tell them you have these resources ready for them, should they be interested.

What to Say to a Teen about a Loved One with Dementia

When you do speak share the news with your teen, be honest and open from the start. If a rapid decline is expected, let them know this. Be forthcoming with whatever knowledge you have about the family member’s diagnosis. And, remember:

• Keep information simple; don’t use complicated medical terms. Explain treatment plans in concise terms so the teen knows what to expect going forward.
• Give only the information you know; don’t speculate. 
• Be realistic; don’t encourage false hope. There is no way to reverse dementia.
• Accept your teen’s feelings. They will move through many different ‘feeling states’ during the course of a loved one’s struggle with dementia. 
• Help the teen to understand changes in behavior, thought process, and personality that can occur in their loved one with dementia.
• Encourage your teen to utilize appropriate resources to help them learn how to respond as their loved one changes and so they can effectively process their own feelings as these changes occur. 

Some teens will understand more about dementia than others. They may dive into researching information to better understand how their loved one will be affected. Others may not want to know any details about the diagnosis. These are both coping strategies. For most teens, it may be helpful to have a family meeting with the medical providers or medial support staff who can answer questions and provide more specific advice to help you teen cope.

What Can Your Teen Do Once They Learn of a Family Member with Dementia?

In the days and weeks that follow the news about a family member having a diagnosis of dementia, your teen may wonder how they should act around this person. What should they—or shouldn’t they—say or do? 

Teens often will be concerned about how their own behavior may affect the family member with dementia. Additionally, the teen will be concerned about the safety and quality of life of the family member with dementia. This is a lot for a teen to think about on top of all the usual excitement and stress that comes with being a young person on the verge of adulthood. 

Help Teens Stay Connected with a Family Member with Dementia 

There are quite a few things that your teen can do to help them maintain meaningful interaction with their loved one who has dementia include:

• Continue with usual routines, such as a weekly visit, with the family member with dementia.
• Play simple games such as cards, puzzles or even rolling a ball back and forth
• Bake cookies or muffins.
• Play with molding clay or even Play-dough.
• Enjoy time outdoors by taking a walk or sitting in the park.
• Look at photos or create a memory box or scrapbook.
• Watch re-runs of their favorite TV show.

If the teen does not live near the family member, these approaches can help them maintain connection:

• Write letters to the family member with dementia. Letters can be read by, or to the adult with dementia. It creates a more meaningful connection than email or text. If the family member can use technology, it’s okay to text or email as long as it is medically prudent to do so. 
• Call and leave a voice message. Frequent calls and voice message can be appropriate ways to let a loved one know they are in your thoughts. Video calls are another good option. 
• Send a care package. Everyone loves to receive goodies in the mail. Include art or and photos or other personalized items that the teen creates, if desired. Be sure to check with medical providers for items that should not be sent.
• Plan a visit. It is really hard to know for sure how quickly a person will decline with dementia. Don’t delay in planning an in-person visit. 

There are many other activities that a person with dementia can continue, depending upon the degree to which the illness is affecting them. Be sure to check with your family member’s medical support team for specific suggestions.

As you and your teen navigate the care of a family member with dementia, encourage your teen to talk or journal about their experiences and emotions. When necessary, meet with a grief counselor as a family. And remember, as you demonstrate healthy emotions and model ways of maintaining connection, you will help your teen work through their own concerns and feelings about how dementia will affect their loved one.

Everbrook Senior Living Helps Families Cope with a Dementia Diagnosis

When it comes to the support a family needs to cope with dementia diagnosis, the staff at Everbrook Senior Living go above and beyond to provide resources and support for all. We, too, are son and daughters, nieces and nephews, of person’s who have been placed in long term care due to dementia. We are available and approachable – often giving out our cell phone numbers as we help families navigate challenges that come with declining health due to dementia. You can trust in our healthcare experience; you can count on our compassion. Learn more about our Memory Care services and our EGIS program.

Resources 

Parent Guide to Helping Children and Teens Understand Alzheimer’s Disease

https://www.alz.org/documents/national/brochure_childrenteens.pdf 

Alzheimer Society. Helping Teens Understand Dementia

https://alzheimer.ca/en/help-support/i-have-friend-or-family-member-who-lives-dementia/helping-teens-understand-dementia 

When a Friend or Family Member Has Dementia: Resources for Kids and Teens

https://www.alz.org/help-support/resources/kids-teens