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Dementia Affects the Whole Family

Carrie Steckl earned her Ph.D. in Counseling Psychology with a Minor in Gerontology from Indiana University – Bloomington in 2001. She has spent over ...Read More

I recently had the pleasure of speaking to a group of high school seniors about dementia. These were no ordinary students – they were all members of an advanced placement psychology class taught by one of my favorite teachers when I was in high school. I knew they were already well-versed in basic psychology and brain anatomy, but I wasn’t sure how much they had discussed dementia, either in class or at home.

What in the world would teenagers want to know about dementia? And perhaps most importantly, why should they care? Granted, I knew darn well that they should care about dementia – the challenge was making this truth relevant and meaningful to them.

It’s easy to see why society as a whole should care about dementia. According to the Alzheimer’s Association’s 2013 Facts and Figures Report, an American develops Alzheimer’s disease every 68 seconds, and more than 5 million Americans are living with Alzheimer’s disease right now. One in three older adults dies with Alzheimer’s disease or another dementia, and Alzheimer’s disease is the 6th leading cause of death in the United States. This year alone, Alzheimer’s disease will cost the United States $203 billion; that number is expected to rise to $1.2 trillion by 2050 if a cure is not found.

These numbers are stark and pack a scary punch, but they still don’t really bring the disease close to home. So I decided to talk to the students about what it’s like to be a teen who is dealing with dementia in his or her family. Really, four areas of life are deeply affected.

Family

Dementia impacts the whole family, not just the person with the disease. A teenager’s parents or grandparents might be caregivers for the family member with dementia, and in many cases, the teenager becomes a caregiver too. More than 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high, while more than one-third report symptoms of depression. And due to the physical and emotional toll of caregiving, caregivers incurred $9.1 billion in additional health care costs of their own in 2012.

Friends

As a teen, it can be difficult to talk to friends about a family member with dementia. On the flipside, teens who know friends who are dealing with dementia in their families may be at a loss for how to help or what to say. Teenagers with a family member who has dementia may not be able to spend as much time with friends or may be reluctant to bring friends to the house if the family member lives there.

School

When a teen’s family is coping with dementia, it may be more difficult to focus on school. The student may not be able to participate in as many activities as before because of caregiving responsibilities at home. The teenager’s parents may not be able to be as involved in their children’s activities if they are caregivers or if they have dementia.

Emotions

Dementia can be confusing for teens, and it can be difficult or scary to watch a family member change due to dementia. Teenagers might feel like they did something wrong or that they caused the dementia, even though neither is true. Feelings of anger, sadness, confusion, fear, or anxiety about the dementia are normal, but it’s important for teens to reach out when they are having these feelings.

If you know a teenager whose family is coping with dementia, tell them about the Kids & Teens Page at alz.org. This valuable resource includes four free videos just for teens that cover topics such as the basics of Alzheimer’s disease, what to expect, how to cope, and how to get involved in the Alzheimer’s movement or seek more information and support.

I provided this resource to the students in my audience too. If there were teenagers that day who were dealing with dementia in their families, I sincerely hope that they check out this resource as a way to help them cope well and still be teenagers, even in the midst of a difficult situation.

Keep Reading By Author Carrie Steckl, Ph.D.
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