Can People Find Joy Living with Alzheimer’s Disease? A Growing Number of Patients and Families are Learning How
Alzheimer’s disease is on the rise in the U.S. We’ve shared the statistics before: today about 6 million Americans live with dementia, mostly Alzheimer’s, and by 2050 that number will soar to more than 14 million. The typical narrative describes Alzheimer’s disease using familiar adjectives, such as devastating, tragic, catastrophic. But who would ever describe the journey of dementia as “joyful”?
Joy in Alzheimer’s Means Changing the “Tragedy Narrative”
It turns out, based on what we discovered in this inspiring article we recently read in the Washington Post, that some patients and their spouses and families are determined to approach Alzheimer’s disease differently. “Changing ‘the Tragedy Narrative’” said the title of the article which grabbed our attention immediately: “Why a growing camp is promoting a more joyful approach to Alzheimer’s.” The Post article spotlights a Manassas, Virginia couple who have been traveling this road for seven years, ever since husband Tom, now 64, was diagnosed with Alzheimer’s disease. Tom and his wife Peggy even gave the disease a name – Ollie. “Ollie is their nickname for Alzheimer’s,” says the article. “Ollie is a third presence in the house, one they never invited in. But since he’s here, they’re making room for him. And though it might seem counterintuitive, they are even trying to have fun with him.”
“That’s Ollie talking,” says Tom after he says something forgetful or nonsensical. This kind of response – giving the illness its own nickname – is just one example, according to the Washington Post, of “a growing camp of people determined to approach dementia care differently, coming at it with a sense of openness, playfulness and even wonder.” This idea stands “in stark contrast to earlier generations of Alzheimer’s patients and their caregivers, who saw the disease as something to be hidden,” the Post reports. A report done in 2015 by the Alzheimer’s Association revealed surprisingly that fewer than half of Alzheimer’s patients are ever even told of their diagnosis. Surveys have repeatedly shown that Alzheimer’s has surpassed cancer as the disease Americans fear most.
Joy in Alzheimer’s Means Adapting to a New Reality
“It has been swathed in shame,” says the article, “stuck in what Bill Thomas, a geriatrician who is working to change attitudes about old age, calls ‘the tragedy narrative.’” Thomas told the Washington Post that American families have only been given one frame of reference: that Alzheimer’s disease is “a terrible, destructive ride all the way down and then you die.” He adds, “While factually true, that is extremely unhelpful to families and elders.” According to the article, “Thomas and others are promoting a more adaptive approach, which they say can help caregivers and patients alike. It involves a lot of flexibility and willingness to expand one’s ideas of how things are supposed to be — even, crazy though it might sound, to see Alzheimer’s as a kind of gift.”
The Post article makes it clear that this doesn’t mean families have to pretend dealing with Alzheimer’s disease is easy: it’s terribly difficult, especially as the illness progresses. But dwelling entirely on the pain and disruption – “medicalizing” the disease, says one dementia expert – doesn’t help. “Dementia is enormously painful,” said New Yorker Mary Fridley, who has written about caring for her Alzheimer’s-stricken mother. But, she added, “I truly believe it is an opportunity, if people so choose, to be improvisational, to be silly, to play, to free ourselves from the constraints of truth and knowing and assumptions.” A Florida man living with Alzheimer’s told the Washington Post, “I get enough of the stigma of people saying I don’t look like I have Alzheimer’s. But it’s the people who are really my friends who will stick with me and joke and say, ‘Hey, do you have the 20 bucks you owe me?’ And then I have to stop and think, and they’ll start laughing.”
Joy in Alzheimer’s Means Going With the Flow
There were several good suggestions included in the Post article for families dealing with the effects of Alzheimer’s. For example, as the illness progresses, instead of constantly trying to correct your loved one, it’s okay to play along and see where the conversation leads. Don’t deny, disagree or argue. “Flowing, rather than resisting, is the key to fruitful interactions,” said one expert. Stop worrying about how things are “supposed” to be – laying aside these expectations can reduce some of the sadness. “We think it’s not normal so we want them to stop. If someone’s sitting at the table ripping up napkins and they’re getting joy out of it, why not let them do it? Just because it’s not our idea of normal?”
Joy in Retirement Means Planning for the Future
If you’re a caregiver for someone with dementia, or if you know someone who is, we suggest this helpful article. We also echo the recommendation that caregivers seek help and advice from the local chapter of the Alzheimer’s Association or the Alzheimer’s Foundation of America. Remember, when it comes to dealing with issues related to dementia, caregivers need to know they’re not alone – and they can find joy even in the midst of dementia.
Here at AgingOptions we want you to know that you’re not alone on your retirement planning journey. We offer a full range of services to help you. One of the best ways to discover a truly comprehensive approach to planning for your senior years is to attend one of our LifePlanning Seminars, offered at no cost and with no obligation whatsoever. You’ll learn valuable information about how to make sure every aspect of your retirement plan is addressed, including housing choices, medical needs, legal affairs, financial security and family communications. With a LifePlan in place, you’ll have the solid, strong retirement blueprint you need to build the retirement you’ve dreamed about.
Click on the Live Events tab on this website for dates, times and locations, and for online registration. You can also contact our office any business day and we’ll be glad to answer your questions. We’ll look forward to serving you.
(originally reported at www.washingtonpost.com)