How do those signs of dementia-linked financial problems present themselves?
That’s a challenging aspect of this work – it’s different for every patient.
It can start small. Some people will forget to pay bills, mortgage and rent payments. But at the other end, it could be forgetting a budget and out-of-control spending. There can be a new impulsivity that comes with some of the cognitive changes, such as people buying multiple vehicles online. In either case, these impacts will start to pile up and often become major problems before people take notice.
What do you look for in your research?
We are trying to detect reliable signals of dementia-linked financial problems so that patients, families, and financial institutions can take action more quickly to prevent irreversible financial losses due to dementia.
Dementia obviously makes it very difficult to make your own health and financial decisions, and often one of the first recommendations requires bringing in an advanced directive and naming a surrogate.
Our area of research has looked at: Do advanced directives and surrogates help? Do they reduce overall personal resource use for terminal conditions such as dementia? Are the wishes of those experiencing dementia being followed?
We know a lot of really invasive physical treatments – such as the placement of a feeding tube – can be controversial. Having to make that decision proves to be complicated.
What did your research show for adherence to advanced directives and surrogate decision making?
One takeaway we found was how important the preferences of the person you are selecting to be your surrogate are for your treatment outcomes.
There has been a growing movement to encourage use of advanced directives. We've continued to look at that over time and with more and more robust survey methods. And we saw that quite frequently – and our data matched what you see in the real world – advanced directives were ignored. In our surveys – some of which were asked in hypothetical scenarios – maybe only 20% of those would say, "It's my duty to choose what the patient wants." The common thinking is, if you prepare an advanced directive, people will follow it. We found in our work that is often not necessarily true.
This was especially true when the decision makers' own preferences were different from what the patient wanted. Additionally, it was especially pronounced for patients who had dementia but had expressed preferences to receive all care possible. And surrogates were often overruling those preferences.
We’ve found that being in agreement with who will be acting on your behalf is at least as important as preparing the legal documents themselves. A lot of people will either name someone a surrogate or write a living will, but not have any conversations about what they want. So, surrogates can be unprepared.
Then do advanced directives benefit those experiencing cognitive decline?
They can be useful for getting your thoughts together and finding people who share them. I still recommend having it in your planning toolkit.
At the same time, I would think of it more as the jumping-off point for discussions about preferences and making sure that the person who gets selected as a decision maker for you shares similar traits and is likely to pick what you want.- simply documenting preferences may not be enough.
Have you and your collaborators dug into what sort of mechanisms need to be put in place for folks to provide some financial shielding around dementia?
We've started to think about what policy changes could be helpful for protecting older adults from financial fraud and these dementia-linked financial losses. Nationally, we currently have very little public policy that can prevent those losses.
If you call your bank and say, "Oh, I met this wonderful person at the supermarket. We got married. I put them on all of my accounts." And that new person comes in and cleans your account, that's it. That money is not coming back.
And this is where there is a heightened risk of loss at a time when you need that money more than ever; you're not going to go back to work and earn it back. The banking system doesn't currently really have the capacity to assess whether you have dementia.
But we could put some policy changes in place. Banks have encouraged people to name an emergency contact that could be contacted when there is irregular activity, but that’s not really binding and not a lot of people have done that yet.
Are there still challenges, given how vulnerable these patients and populations are, even with changes?
Yes, it can be very frustrating, because we don't have strong recommendations of what you can do to prevent this fully. We’ll say, "Well, you can do these things to make yourself less vulnerable: You can share information with trusted friends and family members. You can make sure you have alternative contacts. You can put some of your investments in annuities so you can't lose everything all at once.”
But none of these are perfect solutions. You can't just recommend that people have trusted family members. That may not be a reality for some.
Are there additional stressors when discussing the economically disadvantaged or marginalized communities?
Yes. Educational attainment is protective against dementia in terms of financial resources. In less-educated communities, we see even higher rates of these financial symptoms of dementia that start eight years ahead of a diagnosis instead of six. It’s a more pronounced problem.
One of the papers we plan to write is a prescription for financial management that could come much earlier, well before a time of diagnosis, such as when a person is signing up for Medicare.
This interview was edited for length and clarity.
