Symp­toms of sun­down­ing syn­drome up­set­ting for care­givers

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ASK THE DOC­TORS By Eve Glazier, M.D., and El­iz­a­beth Ko, M.D.

Dear Doc­tor: My hus­band was in the hospi­tal re­cently, and at night he would get quite ag­i­tated. He yelled, took off his clothes and tried to pull out his IV. He had to be se­cured to his bed to keep him from leav­ing. But in the morn­ing, he’d be fine and couldn’t re­mem­ber any­thing from the night be­fore. What’s hap­pen­ing? How can I help?

Dear Reader: What you’ve de­scribed is a few of a group of be­hav­iors com­monly known as sun­down­ing, or sun­downer, syn­drome. It’s a de­scrip­tive term, not a psy­chi­atric di­ag­no­sis. How­ever, it’s broadly rec­og­nized as anx­i­ety, con­fu­sion or ag­i­ta­tion that is trig­gered by the on­set of wan­ing day­light. Sun­down­ing can be­gin any­where from late af­ter­noon to late evening, and usu­ally re­solves in the morn­ing, with the re­turn of day­light.

In ad­di­tion to the symp­toms that you men­tioned, peo­ple may have mood swings, be­come de­mand­ing, sus­pi­cious or even para­noid, hal­lu­ci­nate, hear voices, pace or be­come un­aware of time and place. While sun­down­ing is most com­monly ob­served in peo­ple with de­men­tia, im­paired cog­ni­tion and Alzheimer’s dis­ease, it can also af­fect in­di­vid­u­als who are in­sti­tu­tion­al­ized.

Ex­actly what causes th­ese be­hav­iors to de­velop isn’t yet known. How­ever, in ad­di­tion to the low light and emerg­ing shad­ows that give the syn­drome its name, trig­gers can in­clude fa­tigue, sleep­less­ness, lack of men­tal stim­u­la­tion, dis­rupted cir­ca­dian rhythms and the pres­ence of an in­fec­tion, such as a uri­nary tract in­fec­tion.

To see your loved one van­ish into the throes of sun­down­ing is up­set­ting and painful. But once an episode has be­gun, nei­ther logic nor coax­ing can help. Don’t try to talk or rea­son the per­son out of their fears. If they are hal­lu­ci­nat­ing, don’t try to bring them into the present. The best thing you can do is stay calm and be re­as­sur­ing.

Over the long term, ap­proaches to man­ag­ing this be­hav­ior in­clude:

— Set up a daily rou­tine with con­sis­tent wak­ing and bed times, and reg­u­lar meal­times. This will form a pre­dictable frame­work that can help the in­di­vid­ual feel safe.

— Sched­ule any tax­ing ac­tiv­i­ties for early in the day, when the per­son is at their best. Try not to do more than one or two sig­nif­i­cant ac­tiv­i­ties, like a doc­tor’s ap­point­ment, a shop­ping trip, or vis­its from friends or rel­a­tives, per day.

— Watch the diet for any pos­si­ble trig­gers. If it turns out that caf­feine and sugar cause problems, con­sider elim­i­nat­ing them, or limit them to ear­lier in the day.

— As day­light fades, turn on lots of lights and close the cur­tains. Lim­it­ing noise can also be help­ful.

— Check with your fam­ily doc­tor to see whether a sup­ple­ment like mela­tonin may help with sleep cy­cles.

We are keenly aware of the men­tal and emo­tional chal­lenges of be­ing the care­giver at a time like this. That’s why we think it’s so im­por­tant that you take time — make the time — to care for your­self as well. Take reg­u­lar breaks, en­list out­side help and see a coun­selor to help process what you’re go­ing through. It will bol­ster your own health and will help you to be an even more ef­fec­tive care­giver.

And if any of you read­ers have suc­cess­ful strate­gies we haven’t men­tioned that you’d like to share, we’d love to hear from you.

Eve Glazier, M.D., MBA, is an in­ternist and as­sis­tant pro­fes­sor of medicine at UCLA Health. El­iz­a­beth Ko, M.D., is an in­ternist and pri­mary care physi­cian at UCLA Health.

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