DIMENSIONS Spring 2007

Strange New World: When Persons with Dementia Must Visit the Hospital

by Thomas Orton

This is Part Two of a two-part article. Part One appeared in the previous issue of DIMENSIONS (Winter 2007).

Dementia alone sometimes seems more than anyone should have to cope with. But as the person you care for ages, the day may come when a routine checkup reveals an unexpected problem – a dangerously clogged artery, a spot on an x-ray – a condition that results in a trip to the hospital. Part One of this article discussed some of the preliminaries in preparing for a hospital stay, and Part Two continues by examining issues to consider once the visit is underway.

A hospital stay can cause or increase disorientation. One Alzheimer’s sufferer, for example, was hospitalized for bypass surgery but believed she was still at home. Cheerfully she invited each of the hospital staff to stay the night, insisting, “We have plenty of clean towels.” It is more common that the person won’t recognize their surroundings or remember why they are there. They may become frightened and agitated. They may try to run away or become combative with staff providing care. Keep doctors and nurses apprised of any change in the level of confusion that you notice in the one you care for.

If a hospital trip is prompted by a long illness, the person in your care may already be weak and vulnerable, possibly in a wheelchair or bedridden. As check-in time approaches, watch for changes in mood, sleep habits, or appetite which could be signs of depression. If you suspect your family member is depressed, notify the doctor, so he or she can evaluate whether treatment with an anti-depressant might be appropriate.

Depression and disorientation are serious, but there is an even worse problem to consider. A hospital stay for dementia sufferers often results in delirium. Signs of delirium may even be apparent at admission, but they are easy to miss – even medical professionals don’t always recognize them. If the patient is taking powerful pain drugs, for instance, or is on a ventilator, he or she may not be able to communicate and the signs of the delirium might be overlooked. Or, the symptoms might simply be mistaken for those of dementia.

The seriousness of delirium can’t be overstated. Delirium can be caused by a serious medical problem or medication reaction. It can result in a longer hospital stay, transfer to a nursing home, and a decline in overall health. It can even hasten death. Tell someone in charge that you know the risks of delirium and are concerned. Because you know the patient best, the hospital staff may rely on you to warn them if the person you care for:

These symptoms usually come on suddenly over a period of days or even hours. If they do, remember that you are experiencing them for the first time too, and it may be a shock, especially if the person you care for is someone close to you. Prepare yourself for completely unexpected behavior. One man in his sixties, for example, experienced delirium after admission to the hospital for surgery. He grew frantic, begging his wife to save him from his doctors who, he was sure, were planning to murder him and bury him with other bodies he seemed to see in the x-ray room.

When it comes to delirium, it is important not to let down your guard, even when the procedures are completed and you are heading home. Many dementia sufferers who develop delirium end up back to the hospital within a month. This return trip is often tied directly to mental confusion caused by medications – particularly pain killers, anti-depressants, sleeping medications, and anti-anxiety drugs – that may have been started during the hospital stay. At checkout time, ask the physician if any of these can be discontinued, taken in a lower dose, or used only on an as-needed basis. Ask about non-drug alternatives. These have proven extremely effective and include the following:

Besides asking about medications at check-out time, be sure to find out about changing wound dressings and dietary restrictions. Ask what you can expect with regard to pain and recovery time, or if a temporary in-home nurse might be advisable. Make sure hospital staff understand what you and your relative can (or can’t) handle with regards to home care.

At home, without hospital staff, the burden of care shifts back to you. Share the responsibility by getting family and friends involved. Give yourself breaks – don’t be shy even about asking neighbors to sit while you go out. You’ll be surprised, not only at the generosity of others, but at how a brief indulgence of personal time will do wonders for your attitude and restore your inner resources.

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