Chapter 10: Talking to Patients About Cognitive Problems

"You mentioned having trouble with your memory."

Jonathan Jones was a meticulously organized man. His bills were paid on time; his car gas tank always at least half full. He could be counted on to arrive slightly early for every appointment. After retirement he still kept a day calendar. Dr. Ross knew all this because he’d been taking care of the Jones family for nearly 30 years. A few years earlier, after Mrs. Jones passed away, Dr. Ross had tried to get Mr. Jones to loosen up a bit, but the reply was a friendly, “Don’t know what I’d do with myself if I didn’t have a schedule.” So, when Mr. Jones missed two appointments in a row, Dr. Ross knew something was up and called him at home. The phone rang for quite a while before being answered with a confused, “Yes? Hello? Who’s that? I didn’t have an appointment with you!” The conversation added to Dr. Ross’s concerns. Why, the older man hadn’t realized he’d missed two appointments and didn’t recognize Dr. Ross’s name. The doctor made a note on the chart—it was time to contact Mr. Jones’s son and broach the subject of memory loss—after so many years this was going to be a hard discussion, one Dr. Ross was not looking forward to.

Although the majority of older people show little or no decrease in cognitive function, dementing disorders such as Alzheimer’s disease are more common with age. You are likely to see more and more patients with these disorders. In later life, various illnesses, both physical and mental, can cause temporary, reversible cognitive impairment.

When patients are only mildly impaired, they can be adept at covering up what is happening to them. However, giving a few simple tests and taking a family history from another family member will reveal if there are persistent or worsening cognitive problems. It is best to conduct these tests or interviews with the patient alone so that the family member cannot prompt the patient.

If your patient does have mild-to-moderate cognitive impairment you might ask if there is someone who helps when he or she has trouble remembering. If your patient says yes, you could also ask if it would be a good idea for you to discuss the patient’s treatment plans with the helper. You might keep this name in your notes for future reference.

The general measures presented throughout this Handbook can aid in working with cognitively impaired older people and their caregivers. The following suggestions pertain specifically to the confused patient.

Assessing Mental Status
Although assessing an older person’s cognitive function is important, formal testing of mental status tends to provoke anxiety. Often, information about the patient’s mental state is revealed during the medical history. Information can be gleaned from the patient’s behavior on arrival in your office or from telephone interactions with staff. Family members who may contact you in advance of the visit are also a source of information.

If you are concerned about a patient’s cognition, it might be best to leave any formal testing of mental status until the latter part of the session—either between the history and the physical examination or after the examination. Try to present testing in the context of concerns the patient has expressed. Providing support and encouragement during the testing can decrease stress.

There are limitations to any mental status test—for example, the test results can reflect level of education or the results may appear normal early in the disease. Some clinicians find simple tests such as the Mini-Mental State Examination (Folstein, Folstein, McHugh, J Psychiatric Res.,1975) helpful. This test will accurately screen patients for cognitive impairment and can be administered in the primary care setting in about 10 minutes.

Conveying Findings
Often, assessment of mental status shows no significant impairment. Yet, patients may voice concern about mental functioning. You may reduce their concerns by offering reassurances about their cognitive abilities. Emphasize that occasional trouble remembering information such as names is fairly common among older people and does not mean there is a serious impairment. Encourage the use of notes or reminders.

Cognitive impairment may reflect a variety of conditions, some reversible. However, since patients or caregivers may assume that the cause is Alzheimer’s disease, you may need to explain the need for a careful history, laboratory tests, and physical examination to search for reversible conditions.

If Alzheimer’s disease appears to be present, the question arises of what to tell the patient. The answer depends on what the patient wants to know and how well the patient’s mind is working. You might consider, “You have a memory disorder, and I believe it will get worse as time goes on. It’s not your fault. It may not help for you to try harder. You need to go ahead and make whatever plans are necessary before your memory gets worse.”

Receiving a diagnosis relatively early, while cognition is still fairly intact, can allow a patient to make financial plans, prepare advance directives, and express informed consent for research. Sometimes the patient is relieved to know the nature of his or her problem. Disadvantages of telling a patient the diagnosis include potential stigmatization and the possibility of adverse emotional reactions.

Informing family members or others that the patient may have Alzheimer’s disease is best done in a family conference or group meeting, which should be arranged with the consent of the patient. In some situations, a series of short visits may be more suitable. You should make clear your ongoing availability for care, information, guidance, and support.

Working with Family Caregivers
All family caregivers face real challenges, but these challenges are compounded for people caring for patients with Alzheimer’s and other dementias. The patient declines slowly, over the course of several years. This is an exhausting and disturbing experience for everyone. The following suggestions are especially useful for family caregivers in these situations:

• Explain that much can be done to improve the patient’s quality of life. Various measures—such as modifications in daily routine, adapting the environment, reassurance, appropriate cues, and medications for anxiety, depression, or sleep—may help control symptoms.
• Let the caregivers know there is time to adapt. Decline is rarely rapid. Provide information about the consumer resources and support services available from groups like NIA’s Alzheimer’s Disease Education and Referral (ADEAR) Center and from local chapters of the Alzheimer’s Association.
• Help caregivers plan for the possibility that eventually they may need more help at home or may have to look into residential care.
• Persuade caregivers to get respite regularly, especially when patients require constant attention. Ask if the caregiver, who is at considerable risk for stress-related disorders, is receiving adequate health care.

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