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Dementia doesn’t just affect your cognitive health — it affects your relationships and sense of self.
We discuss these effects on those with dementia and their loved ones on the Read. Talk. Grow. podcast episode “Mysteries and missing memories: Living with dementia.” Listen wherever you get your podcasts.
Episode summary
In mystery novels, the detective often has special abilities: an exacting eye for detail, a talent for getting people talking, or a mind for puzzles. In Emily Critchley’s book “One Puzzling Afternoon,” the protagonist trying to solve the murder has dementia. Emily and Mayo Clinic dementia expert Dr. Dixie Woolston join us to explore how Emily’s realistic portrayal of the disease helps illustrate the humanity, capabilities and challenges of those with cognitive decline.
In this episode, Dr. Millstine and her guests discussed:
- The desire for autonomy and agency. In the book, Edie wants to solve a mystery — partially to prove that she’s still a capable adult. People with dementia often struggle with losing independence, which is why activities such as driving can quickly turn into a contentious point between those with dementia and their loved ones.
- The ups and downs of dementia. Dementia is progressive, but it doesn’t progress in a straight line. We see Edie have good days and bad days — as do most people with dementia. This can be confusing and, at times, frustrating for their loved ones.
- The challenges of caregiving. Caregivers are often loving, patient and compassionate. But they’re not immune to frustration. Edie’s beloved granddaughter reaches this point when it’s all too much. It’s important to have compassion for caregivers, Dr. Woolston says. In her book, Emily shows the love and frustration from the people who know Edie best.
More resources:
- Listen to this Read. Talk. Grow. episode: “The weighty decisions around dementia and accompanied death”
- Learn about dementia on the Mayo Clinic website
- Read the Mayo Clinic Press book: Mayo Clinic on Alzheimer’s Disease and Other Dementias
- Read the Mayo Clinic Press book: Day to Day: Living with Dementia
Questions for discussion:
- If someone you know has dementia or cognitive decline, did you resonate with the episode, book or above points? Why or why not?
- If you’ve been a caregiver for someone with dementia, how did you balance their need for autonomy and respect while keeping them safe?
Share your thoughts, questions and opinions below!
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My husband was getting scammed by podcasts advertising expensive herbal capsules and locked our bank funds in for 5 years. POA was activated with the bank, and his credit cards needed to be turned over to me. However, we had a great discussion about the idea of buying him a prepaid credit card so it could fit within our budget but still give him autonomy. We agreed on a generous amount and the card was given to him for his own use to last two months. It was so he would have his own autonomy but within reasonable boundaries. His funds were all spent in 5 weeks. Now he needs to wait until December for a new one because that is all our budget can afford. He is a bit befuddled at how the card is empty, and I suggested he go on-line to be reminded of how he spent the money.
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2 Reactions@kayokay22, I can see that you are thinking creatively and want to honor your husband's autonomy. Did he go online to see how the money was spent? Did it help?
@bobbisedlmayr started a similar discussion in the Caregivers: Dementia support group here:
- How do you handle when husband fixated on credit cards https://connect.mayoclinic.org/discussion/bow-down-you-handle-when-husband-fixated-on-credit-cards/
No, Colleen he has not gone online to check what his expenditures were, and when I asked him why he had not looked he told me he did not know.