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In his recent First Opinion, “The long, exhausting reach of dementia care,” Jason Karlawish, a geriatric physician and co-director of the Penn Memory Center, wrote about how the coronavirus pandemic has led more Americans to realize how all-consuming life as a full-time caretaker can be. As many spouses and adult children of Alzheimer’s patients have long known, it’s often an isolating, arduous, and expensive experience.

To learn more about the implications of dementia, both individual and systemic, STAT’s Patrick Skerrett spoke with Karlawish and Richard Bartholomew, who was the caregiver for his late wife while she was living with Alzheimer’s.  

This conversation has been lightly edited and condensed for clarity.

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Jason, you’ve written that financial issues are often an early sign of Alzheimer’s. How does that work?  

Jason: I like to say that the banking and financial services industries are on the front line of America’s effort to detect and diagnose disabling cognitive impairments.  These are diseases of what’s called “higher cortical function,” namely our brain’s ability to think, decide, take in new information, and use social cognition appropriately. The hardest tasks are the ones that are affected earliest. This isn’t just anecdote, but multiple well-done studies following hundreds of people for years have shown this. So even before the stages of mild cognitive impairment, you will see folks having trouble doing financial tasks, making mistakes, being victims of fraud and exploitation. Once upon a time when everything was on paper, it was sort of hidden in plain sight. But now that everything’s electronic, financial firms are seeing this.

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But nobody’s really monitoring that except the individual and her or his family?  

Jason: Yes and no. Some firms have been proactive and make efforts when a suspicious transaction occurs. Some firms have stepped in and offered the ability for trusted caregivers and contacts to monitor accounts without having access to the actual funds. There are even companies that have developed software so they can monitor someone’s account. But I think the point you’re getting at is: those things are not normative in the industry. That has not become a standard practice. That’s something that’s exceptional, which I think needs to change. I just think it’s unacceptable. It’s like cars without seatbelts.

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In the United States, it’s up to families to provide care for loved ones with Alzheimer’s and other forms of dementia and pay for it. What kind of services are you able to recommend to patients and their caregivers?

Richard: One thing I didn’t understand as a caregiver, that Dr. Karlawish explained to me, was the origin of Medicare-based hospice and how difficult it is for doctors who are working with Alzheimer’s patients to know when they are really in the terminal stages, and can justify hospice care.  

Jason: That’s right. The hospice benefit was designed for cancer. With persons living with dementia, arriving at a prognostic estimate that they have a prognosis of six month or less (the requirement for hospice care) is very difficult. And I think it’s one of several barriers to accessing the services and supports of hospice. Quite frankly, I think what hospice provided your wife she needed for a while, even if we weren’t thinking she was dying.

The other kind of care I often recommend is an adult day activity program, also called adult day care. And Richard, you witnessed the paucity of the programs and the quality of them. And it’s not because the programs are bad. It’s because they’re so profoundly under-resourced. And so I remember you would come back and say, ‘I found a great one, but it’s in a basement somewhere with no windows.’ 

In principle, adult-day programs should work. But they have struggled and many sadly shut down because of Covid. So they live on the economic margins. America doesn’t have an organized social insurance program, so they struggle to make ends meet. It’s an indictment of our health care system.

The Centers for Disease Control and Prevention and others project that the number of people with Alzheimer’s and other forms of dementia is going to double in the next three to four decades. That means the number of family caregivers will also double. Richard, having been a long term and loving family caregiver, do you have any advice to offer people who someday will be doing what you’ve done? 

Richard: I think we were extremely lucky. I did take a caregiver course at the Memory Center, I think before we started seeing Dr. Karlawish. So I heard in this small group of probably 10 people — all of us were caregivers — stories about what it’s like for other people with spouses with some form of dementia. And I was very lucky in that respect.

Jason: Yes, it’s the support that we were able to give you, Richard, included that caregiving class, our social work team, and others. And what’s interesting is that those supports that we provide have been made possible by a generous philanthropic gift from the Kaplan Family Foundation. If we had relied on billing through usual routes, of clinical billing through Medicare, we couldn’t pay the salaries of the people who run these programs. We couldn’t have provided that class. 

And it’s only going to get worse because will be more people who need care and fewer people who can care for them. We’re going to face the Alzheimer’s crisis. We already are in it, I would argue. And much of it is a crisis of our inability to organize a health care system to take care of people who are disabled from diseases like Alzheimer’s.

We should expect and hope for better treatments that slow the disease. But without treatments that slow each and every cause of the disease, we’re going to have to learn how to live with some degree of cognitive disability that needs care. So we really need to start a national conversation about how we’re going to organize a system of care for people like Richard Bartholomew and his wife, Julia Converse. 

And I am cautiously optimistic that the events of the last 12 months have woken us to caregiving, have made us realize how essential this very human activity is. And maybe, going forward, policymakers will listen.