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As a parent in my mid-40s, I often find that most conversations with peers revolve around two central themes: our children and our aging parents. While cherishing the moments with our kids can be a mixed bag of joy and sorrow, witnessing the decline of our parents can be particularly heart-wrenching—especially when they are battling dementia.
Dementia is a progressive condition that can stem from a variety of causes, including strokes, brain injuries, or Alzheimer’s disease. Currently, around 55 million people worldwide are living with dementia, a number that is projected to reach 78 million by 2030 and 139 million by 2050.
“Dementia strips millions of individuals of their memories, independence, and dignity, while also affecting those of us who love them,” stated Dr. Michael Roberts, director-general of the World Health Organization.
According to the Centers for Disease Control and Prevention (CDC), over 16 million Americans annually contribute more than 17 billion hours of unpaid care for family and friends suffering from Alzheimer’s disease and related dementias. The CDC notes that roughly two-thirds of dementia caregivers are women, and about one-quarter of these caregivers belong to the “sandwich generation,” caring for both aging parents and children under 18.
Given the vast number of individuals affected by dementia, there is an urgent need for change. As Dr. Roberts affirmed, “The world is failing those with dementia, and that impacts us all.”
One person striving to improve the care and love for those living with dementia is Linda Gray. Her popular TikTok videos, which provide practical tips and advice for caregivers, have garnered millions of views—highlighting the extensive reach of dementia’s impact.
Linda Gray, MS, OTR/L, FAOTA is an occupational therapist who focuses on dementia care and education. Her TikTok content ranges from clarifying the distinctions between dementia and Alzheimer’s to addressing why comments like “You don’t seem to have dementia” can be unhelpful. She also offers guidance on assisting individuals with dementia in daily tasks, including her innovative Hand-under-Hand® technique, which allows caregivers to provide support while empowering the individual.
This method involves positioning your hand beneath that of the person with dementia, allowing for gentle pressure without causing any discomfort. As Linda noted, this approach fosters a sense of agency for the person receiving care, making them feel like they are participating rather than being acted upon.
Having followed Gray’s videos closely, I often find myself nodding in agreement or fighting back tears. She created these videos to help others avoid mistakes that could lead to regret or harm. My father has been living with Alzheimer’s for several years, and I know I have made missteps. I am eager to learn and improve my interactions with him.
I was fortunate enough to ask Linda for advice that could benefit others caring for loved ones with dementia, particularly those of us in the sandwich generation. For parents with young children who also have relatives with dementia, she shared valuable insights on how to explain the situation to our kids and ease visits.
“The first step is to determine if the child has noticed any changes in the loved one,” she explained. “You don’t want to overwhelm them with information if they haven’t recognized any changes.” Instead, she suggests asking the child, “What have you noticed about Grandma lately?” If they acknowledge a change, validate their feelings and help them understand it through relatable experiences.
For instance, if a child notices a grandparent forgetting their name, you might explain, “Her brain is having a hard time remembering things, similar to when you forget to pick up your toys sometimes.” This way, you help the child understand that, despite these challenges, their grandparent still loves them.
When my dad mistakenly calls me by my mom’s name, I often hesitate about how to respond. Linda’s advice is to acknowledge the mistake playfully: “I look just like her, you’re absolutely right!” If the mix-up continues, she recommends letting it slide, as repeated corrections may only lead to frustration or hurt feelings.
Engaging with a loved one who has advanced dementia can be tricky. Linda suggests activities like listening to or clapping along with music they enjoy, taking walks outside, or reminiscing over familiar stories and photos. “Just as you would speak to a baby without expecting a response, you can interact with someone with advanced dementia using a deeper voice,” she advised.
As for caregivers, Linda emphasizes the importance of self-care. “You cannot be an effective caregiver if you are not taking care of yourself,” she explained. Ensuring adequate rest, nutrition, exercise, and personal time is crucial to maintaining the patience and energy needed for caregiving.
Linda also encourages building a support network early on. “It takes a village,” she stated, emphasizing that a care team of family, friends, and professionals is essential for both the caregiver and the person living with dementia.
Her most reassuring advice? “The journey is often a marathon, and it should never be faced alone.”
For more insights on this topic, check out our other blog posts on related themes at this link. For authoritative resources, visit Make a Mom and CCRM IVF Blog.
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Summary:
This article discusses the challenges and experiences of caring for loved ones with dementia, highlighting the insights of occupational therapist Linda Gray. Her practical advice focuses on effective communication techniques, engaging activities, and the importance of caregiver self-care and building a support network. The article serves as a valuable resource for those navigating the complexities of dementia care and offers encouragement for caregivers to prioritize their own well-being.