As a parent in my mid-40s, it seems like most conversations with people my age focus on two things – our kids and our aging parents. While watching our children grow up can be bittersweet, watching our parents grow older can sometimes be particularly distressing. Especially when a parent or loved one is living with dementia.
Dementia is a progressive condition that can be caused by stroke, brain injury, or Alzheimer’s disease. Currently, 55 million people worldwide are living with dementia, with that number expected to rise to 78 million by 2030 and 139 million by 2050.
“Dementia robs millions of people of their memories, independence and dignity, but it also robs the rest of us of the people we know and love,” said Tedros Adhanom Ghebreyesus, WHO director-general.
According to the CDC, each year, more than 16 million Americans provide more than 17 billion hours – that’s billion with a B – of unpaid care for family and friends with Alzheimer’s disease and related dementias. The CDC also reports that approximately two-thirds of dementia caregivers are women, with approximately one-quarter of dementia caregivers in the “sandwich generation” – caring not only for an aging parent, but also for children under age 18.
With so many people living with dementia, or caring for or loving someone with dementia, something needs to change. As WHO director-general Tedros Adhanom Ghebreyesus said, “The world is failing people with dementia, and that hurts all of us.”
One person trying to change the way we care for and love people living with dementia is Teepa Snow. Her wildly popular TikTok videos offering tips and advice for people who care for or love someone with dementia are being watching by millions – a testament to just how many people are deeply impacted by dementia.
Teepa Snow, MS, OTR/L, FAOTA is an occupational therapist who specializes in dementia care and dementia education. Her TikTok videos run the gamut from explaining the difference between dementia and Alzheimer’s, to why saying things like “you don’t look like you have dementia” isn’t particularly helpful for anyone, to how to help a person with dementia clean up after an accident.
Her TikTok account covers really challenging situations like how her “Snow Approach” can help someone get dressed when they don’t want to be touched.
And this advice on helping dementia patients stay hydrated is truly life-changing if you care from someone with dementia.
She also has a truly ingenious (and trademarked!) method for helping people living with dementia with daily tasks.
“The Hand-under-Hand® position involves rotating your hand from a traditional handshake into a position where your thumbs are intertwined,” she explained to Scary Mommy. “Your hand should be on the bottom of the hand of the person who is living with dementia, providing support. In this position, you can squeeze their hand to provide calming pressure without causing pain or injury. You are also able to use your fingers for fine motor skills while bringing their hand along.”
She added that this allows the person with dementia to feel empowered, like they are doing the motion themselves with some help, instead of having something done to them against their will. She said the Hand-under-Hand technique is helpful for providing support while walking, transitioning between sitting and standing, helping with eating or getting dressing, assisting with personal hygiene, and many other situations.
I have been gobbling up Snow’s videos, sometimes nodding my head along and sometimes fighting back tears as I watch them. Snow explained in one of her videos that she made them because “she saw people make mistakes that they regret and that cause harm to themselves or to people living with dementia.” My dad has been living with Alzheimers for several years, and I know I’ve made mistakes. I haven’t always known how to respond or handle a situation. I sometimes struggle to connect with and interact with him. But I want to learn. Know better, do better, right?
I was grateful to be able to ask Snow a few questions that might help others who care for or love someone with dementia, especially those of us in the “sandwich generation.” For parents of young children who also have loved ones living with dementia, Snow has some great advice on how to explain the situation to our children and make visits easier for everyone.
“The first step is to try to determine if the child has noticed any changes in the loved one,” she told Scary Mommy. “There is no need to overload them with information if they haven’t even yet noticed any changes. So, you might say, ‘Tell me what you’ve noticed about Nana lately.’ If the child expresses that they have noticed a change, validate their feelings and then help them to understand by relating it to something they have experienced.”
For instance, she suggests that if a child notices that a grandparent is forgetting their name, you can explain that the grandparent’s brain is having hard time remember things. “You could respond with, ‘Yeah, you’ve noticed that she forgets sometimes, and that’s sort of surprising, huh? Her brain is having a really hard time remembering things. You know how sometimes you have trouble remembering, too, like when we ask you to pick up your toys and you forget? Even though Nana’s brain is having trouble remembering, she still loves you very much.’”
By helping relate the brain changes caused by dementia to something familiar to the child’s experiences, she says that we can make the change less scary.
I’ll admit, I’m often unsure of how to respond when my dad calls me by my mom’s name. Do I remind him of my name, or just let it go? Snow had some great advice for these situations, as well.
“When he calls you by your mom’s name, I would suggest responding with, ‘I look just like her, you’re exactly right!’ This may help them to remember that you are actually not your mother.” If the person continues to call you by the wrong name, Snow suggests letting it go; repeated corrections won’t help them remember your name because they are no longer able to hold that information. Even worse, repeated corrections could hurt the relationship. She also suggests reminding the person of your name in a playful way, such as entering a room by saying, “Knock, knock! Hey, it’s Christie!”
Isn’t that genius?!
This video explains why talking louder won’t help…
When engaging with a loved one who has advanced dementia, Snow suggests listening to or clapping along with music together (especially music from their youth), listening to wind chimes, hand or foot massages with their favorite scents, walking outside, telling stories that are familiar to them, or looking at books or pictures together.
“Just as you would talk to a baby or a very young child without expecting a response or a conversation, you can talk with someone with advanced dementia even if they don’t always have the words to respond,” she told Scary Mommy. “The main difference is that it is best to use a deeper-pitched voice when communicating with someone living with dementia, while with young children you often naturally use a higher-pitched voice. Another difference is that, unlike a child, the individual living with dementia has a lifetime of experiences, interests, and favorites for you to use during interactions.”
When it comes to advice for the caregivers themselves, Snow relies on that age-old advice that you can’t pour from an empty cup.
“Quite simply, you cannot be an effective caregiver if you are not taking care of yourself and are burned out,” she said. “Getting adequate sleep, eating healthy foods, exercising regularly, and taking time to do things you enjoy is essential so that you can have the patience and stamina required to care for others. If this feels impossible, take baby steps.”
She also reminds us that it takes a village. “It is never too early to start to build your care team.” The care team can include family members, friends, paid care staff, volunteers, health care providers, and others. The care team is necessary not only so that the caregiver has support, but also so that the person living with dementia gets used to the presence of others who are able to help. She recommends making an honest assessment of what you are truly able to contribute financially, emotionally, and physically and what parts of caregiving you are willing to let go.
Perhaps one of her most reassuring pieces of advice is this: “The journey is often a marathon, and is not something that should be done alone.”
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