Caveat emptor. What I’m about to say isn’t politically correct, so reader, beware. The underlying assumption in many medical circles these days is that patients know best what they need to know and what they need to do to maintain their health. The Patient Centered Outcomes Research Institute (PCORI) research agenda—and PCORI, established by the Affordable Care Act, is one of the major sources of funding for medical research today—requires that patients participate in the design and implementation of research projects because, well because patients know best. Now I agree that we doctors need to do a better job listening to patients. I fully accept that patients are the only ones who can say what matters most to them, and that what they care about should shape what treatment they get for a medical problem. That’s why I argue repeatedly that it is for patients to figure out whether they are most concerned with life-prolongation, with daily functioning, or with comfort, assuming they have to make a trade-off—though I also claim that it is doctors and not patients who can figure out how to translate those goals into a treatment plan. But sometimes, perhaps fairly often, patients don’t know what they don’t know.

Last week I blogged about the new report, “Caregiving in the US,” which reported some interesting statistics on what kind of information caregivers said they’d like to have. The findings—that almost all of them expressed an interest in more information about something, with keeping their relative safe at home and managing stress at the head of their wish list—provide valuable information. 

But what’s striking to me is what the caregivers didn’t mention at all. They didn’t say anything about needing to know more about the medical diseases (apart from the behavioral manifestations of dementia) that afflict the people for whom they provide care. A new article in The Gerontologist very pointedly states that family caregivers need to know about delirium: what it is, how to prevent it, and what to do when it occurs. 

Developing acute confusion occurs commonly in older individuals, particularly those with underlying dementia. It is a potentially dangerous condition that is often incorrectly diagnosed. Typically triggered by any one of a variety of drugs, infections, or chemical imbalances (for example, sleeping pills, urinary tract infections, or dehydration), it can cause either agitation or excessive sleepiness and it is distressing to both patients and their caregivers. Moreover, delirium has been associated with longer hospital stays, decline in daily functioning, and even death. A systematic review of the literature carried out by the authors of the Gerontologist paper confirms that when caregivers discover that their charges are acutely agitated, they rarely realize what might be precipitating the change and are often slow in responding, sometimes resulting in the need for hospitalization (which itself can cause or exacerbate delirium). Failure to appropriately address delirium also heightens the caregiver’s sense of inadequacy and insecurity.

Despite the ample evidence that delirium has adverse effects on both caregivers and patients, there is a paucity of studies looking at the effect of the few available delirium-related educational tools on outcomes. One promising intervention taught caregivers to use the Family-Confusional Assessment Method (FAM-CAM) to identify delirium and another designed the Family-HELP program, in which hospital nurses trained family caregivers to manage delirium using one of several protocols.

The Gerontologist article reminds us that family caregivers play a critical role in the identification and treatment of medical problems in older individuals, particularly those with dementia. Having dementia does not protect patients against the other diseases of old age such as congestive heart failure and pneumonia. Whether caregivers realize it or not, they play a pivotal role in the medical management of their family members. It’s time to expand “caregiver support” and “caregiver education” to include a more in-depth understanding of the full range of diseases that affect older people.