Not As Uncommon As You May Think
According to the American Association of Caregiving Youth (AACY – American Association of Caregiving Youth) over 5 million young people aged 8-18 provide care to a disabled family member. I could not locate any numbers that specifically addressed youths caring for parents with dementia…but given the rising numbers of people being diagnosed with dementias that show up in late middle age (45-55 years of age)…even a conservative 10% of 5 million is 500,000 youths. These numbers are likely higher.
Caring for a Parent with Dementia is Harder than Caring for a Grandparent with Dementia
Young people caring for a parent with dementia are invisible. I’m sorry to say that. All of the resources I found for young people assumed they were caring for a grandparent. It’s different caring for a parent versus a grandparent. There is more stigma and feelings of being “different.” Caring for a grandparent with dementia is much more mainstream and children involved in the care of a grandparent are likely to have friends dealing with the same issues. But youths caring for a parent may feel isolated and different. Then there is the burden of care. A youth helping to care for a grandparent usually has at least a parent, hopefully extended family members like aunts, uncles, and cousins, who are involved in the care. But youths caring for a parent may have a much higher burden of care because the parent without dementia has to stay in the workforce to pay the bills and keep up the health insurance. Youths helping with the care of a grandparent with dementia have access to more services, because older people with dementia have access to more services. People living with dementia who are under the age of 65 may fewer resources and there is more effort involved with obtaining resources like Medicaid and disability.
I created this week’s podcast for youths caring for a parent with dementia. I geared the content for adolescents and teens, about 12 years and older. I am repeating the content in this blog. Please share with fellow support group members, youth ministers at your church, temple, or mosque. This is a real and growing problem.
Dementia and Alzheimer’s Disease
Knowing that there are precious few resources for youths who are parental caregivers, I offered this explanation about dementia and Alzheimer’s dementia:
Dementia refers to any type of long-term problems with memory—just like the word “dog” refers to any four-legged furry animal that barks and chases squirrels. There are many kinds of dogs. There are Labrador retrievers, Chihuahuas (I always think of the Taco Bell dog), beagles (like Snoopy) and great Danes—think Scooby Doo. I have no idea what type of dog Brian is on Family Guy. Probably a mutt. So dementia is a general word, like dog, and just like there are different breeds of dog, there are different types of dementia—Lewy body, frontotemporal, Alzheimer’s dementia, vascular dementia. I’m not going to get into the different types today, but if your parents are OK with you listening to Episode 1, I go through all of the different types of dementias.Episode 37: Teen Caregivers of Parents Living with Dementia
Best Verbal Approaches
I then focused on how to talk to a person living with dementia:
First, keep your sentences short and clear. Listen to these two sets of directions.
Before pointing to the ceiling, point to the door.
Point to the door. Point to the ceiling.
The first set of directions is complicated. The directions are given out of order. Your brain had to hold onto the “before pointing to the ceiling” part while you looked around for a door. Once you pointed to the door, you had to remember to point to the ceiling. But the second set of directions was very clear. There were no extra words. The directions were given in order.
That is the way to communicate with a person living with dementia. I like to call this way of communicating “short, sweet, and concrete.” Nothing fancy.
Why do you have to keep directions short and clear?
Think of your brain like a box that holds everything you ever had. A giant trunk. At the bottom are your baby toys. At the top are your books, iPad, smart phone, maybe your laptop. There are different compartments to keep everything organized. Some of those compartments are plastic boxes so that the small items don’t get mixed up and lost. If you want something that you had as a small child, you have to dig through the trunk and find that object. But if you want to use your iPad, it is right there and you easily get it.
The stuff right on top is like short-term memories. Memories about what we had for breakfast, or what someone told you 5 minutes ago. How many children do I have? If you answered “3”, then your short-term memory is working. If you could not remember, it was probably because you were not concentrating on the podcast because your mind was temporarily distracted. Maybe you got a text and you were responding to it. Or one of your siblings came into your room and asked you something.
Long-term memories are memories about something that was learned years ago. People with dementia lose brain cells—brain cells die off because of the disease. Their brain shrinks. Think about your trunk holding all of your possessions. If that trunk started to shrink, all of the stuff on the top would fall out and there would be no room to store them. But you would be able to get to the items way on the bottom much easier.
The brains of people living with dementia do shrink. Their heads don’t shrink because the bony skull stays the same size. But the brains inside of the skull do shrink. As the brain shrinks, the parts of the brain that make and hold onto short-term memories go off-line first. This is why people living with dementia ask you the same questions over and over again. But like the shrinking box example, memories from long ago are still there because those parts of the brain are still working. Those parts of the brain are not shrinking.
It may be annoying when you are asked the same question 50 million times but your parent can tell you stories about the 1960s. They are not trying to be a pain. Their shrinking brains are the causing these memory problems. This is also why they may get lost in the house or get lost when driving somewhere familiar.Episode 37: Teen Caregivers of Parents Living with Dementia
Best Nonverbal Approaches
People living with dementia also tune into your facial expressions and your body language. That is why you need to take your time and not look upset or angry when caring for your parent. It may also be helpful to use gestures when you are trying to help them. If you are trying to help them brush their teeth, you can gesture like you are brushing your teeth. If you ever played the game charades, where people act out TV shows or movie titles while others try to guess, than you get it. You communicate using short sentences and charades.
If you need to help your parent living with dementia do things, and they are not happy about you helping them, here is a way that usually works. Ask them for their help. Here is how it works. Let’s say you are trying to help your mom put on a shirt. She wants no part of you helping her. Say to her, “Mom, I need your help” to get her attention. Then say, “Mom, please help me by putting on this shirt.” Once she does it, thank her—and mean it: “Mom, thank you so much. That was a big help.”
Maybe your mom is not cooperating because she needs you to break down “put on your shirt” into a couple of steps. This is how you do that:
“Mom, I need your help” to get her attention. Then say, “Mom, please put this arm (gently tap the arm you want) here (pointing to the sleeve).” You might feel really weird but your parent’s shrinking brain needs bite-sized directions.
Does your parent with dementia get angry with you when you are trying to help them? It is not your fault. They may forget a lot of things, but they never forget that they are an adult—even if they don’t act like one. Here is a suggestion. When you speak with your parent, make sure you aren’t talking to them like they are one of your younger sisters or brothers. Watch out for what I call “the bossy voice.” If you have an older brother or sister, you know what I’m talking about. Your older sibling can ask you to please pass the salt or toss you the TV remote. That is their normal voice. But sometimes, they use the bossy voice—the one that makes you feel like an idiot. “Hey, now don’t forget to feed the dog, OK?” And you are thinking to yourself, “No, I was going to let her starve to death while I watch Big Mouth.” If your parent living with dementia starts to get annoyed with you, check to make sure you aren’t using the bossy voice.
Don’t use sarcasm, either. That example I gave about the dog is definite sarcasm. It is OK to think sarcastic thoughts, but keep them inside the thought balloon. Sometimes, after caring for a parent living with dementia for a couple of hours, you want to say something sarcastic. It is not worth it.Episode 37: Teen Caregivers of Parents Living with Dementia
A Personal Message to My Young Listeners
It probably does not seem fair that you have to handle such a responsibility. It isn’t. But your parent without dementia does not have a lot of options. They need to work to pay the bills and to have medical insurance. They feel guilty leaving you there to help. Hiring people is very expensive and insurance does not cover the cost. However, you can google something called the Area Agency on Aging. There are offices all over the United States and some have programs that will send a caregiver into the home to help out part-time.
I would also recommend that you speak to a trusted adult, ideally a therapist or counselor. Perhaps a school counselor who can listen to you and help you deal with your emotions because you are handling some heavy stuff. My son’s football coaches were awesome, and my daughter had a favorite science teacher who was supportive during some rough times. Maybe a trusted adult at your church, temple, or mosque.Episode 37: Teen Caregivers of Parents Living with Dementia
My heart goes out to the youths and their parents, who find themselves in a place and situation that no one saw coming. Hope I helped in some small way.
Make Dementia Your B*tch is here!
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.