As a parent in my mid-40s, I often find that discussions with peers revolve around two primary topics—our children and our aging parents. While it’s a bittersweet experience to watch our kids grow, observing our parents age can be particularly challenging, especially when a loved one faces dementia.
Dementia is a degenerative condition that may arise from various factors, including strokes, brain injuries, or Alzheimer’s disease. Currently, an estimated 55 million individuals worldwide are living with dementia, a figure projected to increase to 78 million by 2030 and 139 million by 2050. “Dementia robs millions of people of their memories, independence, and dignity, but it also impacts those who love them,” remarked the director-general of the WHO, Dr. Tedros Adhanom Ghebreyesus.
According to the CDC, over 16 million Americans contribute more than 17 billion hours of unpaid care annually for family and friends afflicted with Alzheimer’s and related dementias. Notably, about two-thirds of these caregivers are women, with many belonging to the “sandwich generation,” juggling responsibilities for both aging parents and children under 18.
Given the widespread impact of dementia, significant changes are needed in how we care for those affected. Dr. Ghebreyesus emphasized that “the world is failing people with dementia, and that hurts all of us.” One individual striving to improve dementia care is Sarah Thompson, an occupational therapist and dementia educator whose popular TikTok videos offer invaluable advice for caregivers.
Her content spans a range of topics, from clarifying the distinctions between dementia and Alzheimer’s to addressing the challenges of communication. For example, Thompson discusses the importance of avoiding phrases like “you don’t look like you have dementia,” which can be unhelpful. She provides practical solutions, such as her “Thompson Technique” for assisting individuals with dressing when they resist physical contact.
One of her remarkable methods is the Hand-under-Hand® approach, which involves positioning your hand beneath the caregiver’s hand to offer support. “This technique allows for gentle guidance while empowering the person with dementia to feel like they are participating actively,” she explained in an interview. This approach is beneficial for daily tasks such as eating, personal hygiene, and mobility.
I find myself captivated by Thompson’s videos, often nodding in agreement or holding back tears. She created her content after witnessing caregivers make regrettable mistakes that could harm both themselves and their loved ones with dementia. My father has been living with Alzheimer’s for several years, and I’ve made my share of errors while navigating our interactions. I recognize the need to improve—knowing better leads to doing better, right?
In a recent discussion with Thompson, I inquired about how to explain dementia to children, particularly for those of us in the sandwich generation. She advised starting by asking children if they’ve noticed any changes in their loved one without overwhelming them with too much information. By validating their observations, caregivers can help children understand the situation in relatable terms.
For instance, if a child observes that a grandparent forgets their name, a caregiver might say, “Yes, Nana has a hard time remembering sometimes, just like when you forget to put your toys away.” This comparison can help ease the child’s fears.
When it comes to managing moments when a loved one calls you by the wrong name, Thompson suggests embracing the humor in the situation. Responding with, “You’re right! I do look like her!” can reinforce your identity without causing distress. If the mistake persists, she recommends letting it go, as constant corrections can harm the relationship.
Engaging with someone who has advanced dementia can also be enriched by simple activities such as listening to music from their youth or sharing familiar stories. “Talk to them as you would a young child, without expecting a conversation,” she shared. Using a deeper voice while interacting can be more effective and comforting.
For caregivers, Thompson emphasizes the importance of self-care: “You cannot effectively care for others if you’re not well yourself.” Prioritizing sleep, nutrition, and personal enjoyment is crucial for maintaining the stamina needed for caregiving. She encourages building a support network early on, reminding us that caring for someone with dementia is a long journey that doesn’t have to be faced alone.
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In summary, navigating the complexities of caring for someone with dementia can be overwhelming, but the right guidance and support can make a significant difference. With techniques like the Hand-under-Hand approach and strategies for communication, caregivers can foster a more compassionate and understanding environment for their loved ones. As we embark on this journey, let’s remember the importance of self-care and building a supportive community around us.
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