Heavy Meddle: How To Help A Friend With Dementia?

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Dear Steve,

First, let me say that my husband and I respect and appreciate the advice you give people in your column. You are straightforward and, very often, profound in the way you lay out a situation and then address it. We turn to you hoping for just that sort of clear thinking.

We have been friends with a person I will call "Ruth," and her husband, for nearly 30 years. My husband and I consider Ruth one of our closest friends; my husband also works in the same institution she does, though they do not work directly with each other.

Over the last six to eight months, we have noticed, both independently and together, that Ruth seems to have word-finding problems. It seems to come and go a bit, to worsen with alcohol, certainly, but is constant in one form or another at all times. In addition, we have noticed, over the course of several years, that she has withdrawn from certain aspects of her work and social life; she seems less engaged than she used to be. Most alarming to both of us is the way in which she tries to “cover” when she can’t find a word or remember something. We both have experience with parents who had dementia and are well aware of early stages in which the person fakes it — consciously or not.

Should we talk directly to Ruth? Should we take a wait-and-see approach?

Ruth has a fair amount of stress in her work and personal life and at first my husband and I assumed these issues were related to lack of sleep, too much on her plate, etc. And maybe all that is true. But it seems to be reaching a critical point and we concerned that a dementia process is at work. Oh, and I should mention that Ruth is not yet 60-years-old.

Of course we are very concerned about her. Here is our problem for you: We are not sure how to approach the topic. Should we talk with her husband and express our concern? Should we talk directly to Ruth? Should we take a wait-and-see approach? Neither of us feels the latter of these is really an option; It may be too late for her to receive treatment that could help if we do nothing.

We would value your thoughts on this.

Signed,
Worried about Ruth

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Dear Worried,

I wish I could tell you that I have no experience in this particular minefield. Alas, my beloved mother struggled with cognitive decline in the final years of her life. It’s tough to explain how sad and terrifying these ailments are unless you’ve seen them up close. Both of you have had the misfortune of seeing parents travel this path, which is no doubt why you are taking note of Ruth’s social and professional withdrawal, as well as her memory lapses.

You write that things “seem to be reaching a critical point.” I will trust this to mean that Ruth’s symptoms are growing worse. More critically, you write that you’re worried that it “will be too late for her to receive treatment” if you don’t intercede.

This is making two assumptions. First, that neither Ruth nor her husband is seeking adequate treatment. And, more fundamentally, that you know her condition well enough to recommend a rescuing course of treatment.

But you don’t know for a fact that Ruth is suffering from a degenerative cognitive ailment. All you know is that she’s presenting certain symptoms. It’s certainly true that these symptoms could indicate the incipient stages of cognitive decline. But it’s also true, for instance, that Ruth might be suffering from a long-term depression, or from a chronic lack of sleep, or from stress, or from the side effects of medications intended to combat one or more of these problems. In all likelihood, these various organic factors may be interacting.

For this reason, I think it would be unwise to speak to Ruth, or her husband, with any pre-conceived notions about her cognitive condition in mind. But there’s a more basic issue here, which is that Ruth and her husband are no doubt feeling frightened and self-conscious about her state of mind. You’ve noticed how she tries to cover for her memory lapses. In other words, whatever you’re picking up on, they’re living through. I’m sure you know this already, but the shame associated with cognitive ailments is crushing, especially for someone like Ruth, who has lived a life of intellectual and professional ambition.

The extent to which they welcome your involvement in the process is up to them.

I’m not suggesting that you should avoid the subject altogether, particularly if you suspect she’s not getting treatment that could help her. But if you choose to say something, it has to be in a way that puts their feelings before your own conjecture. Specifically, I would speak to Ruth’s husband first, and in a way that offers emotional support, rather than a potential diagnosis or treatment options.

I’d also let his reaction be your guide. If you sense that he’s willing to talk a bit more about what’s happening with his wife, great. Heck, he may even be relieved to have the opportunity to unburden himself and seek your counsel, especially given that both of you have experience with loved ones who suffered cognitive decline.

But if he’s not willing to talk about Ruth’s condition, or only to a limited extent, then you face a more difficult decision. You can decide that discretion is the better part of valor and back off. That is: Let him know that you care about him and Ruth, and want to be able to help in whatever way you can, and leave it at that.

Or you can be more overt in suggesting that his wife needs treatment, a course of action that runs the risk of:

1. Being imprecise or even wrong; and/or

2. Upsetting him and damaging your friendship

That may be a risk you feel is worth taking, given your own experiences.

Maybe the best way to think about all of this — one that explains your own sense of urgency here, I suspect — is to recall how both of you felt when your parents were afflicted with dementia. The situations aren’t identical, but it might help to consider how would you have felt if concerned friends had come forward. What, if anything, did you want to hear from them? What did you need to hear from?

You’re spot-on in observing that people dealing with cognitive decline often deny the situation, consciously and unconsciously. Very few people are totally upfront about what’s happening, because it’s simply unbearable. Friends can provide crucial support. It may be that your conscience demands you supply more than that. But ultimately the diagnosis and treatment of Ruth’s condition is up to Ruth, her husband, and their physicians. The extent to which they welcome your involvement in the process is up to them.

I feel so deeply for Ruth, her husband, and both of you.

Courage,
Steve

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Author's note: What a bruiser of a letter. The best outcome, it seems to me, is that some other factor explains Ruth’s behavior. But I suspect Worried About Ruth is right, which means it all gets much harder. What do you guys think? Post your feedback, and/or counsel, in the comments section below. Send along a letter to Heavy Meddle, if you haven’t. You can use this form, or send your questions via email. — S.A.

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Heavy Meddle with Steve Almond is Cognoscenti's advice column. Read more here.