Communicating with a confused patient holds special challenges. Specific techniques can help health care providers to talk with patients and caregivers about a diagnosis.
"You mentioned having trouble with your memory."
Jonathan Jones had always been a meticulously organized man. His bills were paid on time; his car gas tank was always at least half full. He could be counted on to arrive slightly early for every appointment. Dr. Ross knew all this because he'd been taking care of the Jones family for nearly 30 years. So when Mr. Jones missed two appointments in a row, Dr. Ross knew something was not right and called him at home. The phone rang for quite a while before Mr. Jones answered, "Yes? Hello, Dr. Ross. Why are you calling? I don't have an appointment scheduled with you." The conversation added to Dr. Ross's concerns. The doctor made a note on the chart—it was time to broach the subject of memory loss with Mr. Jones. After so many years, this was going to be a hard discussion.
Aging itself can cause deficits in cognition that vary from person to person. While some older people show little or no decrease in cognitive function, others may be very worried about their memory and may fear dementing disorders such as Alzheimer's disease (AD). But, not all cognitive problems are caused by AD. Various illnesses, both physical and mental, can cause temporary, reversible cognitive impairment. Certain drug combinations can also cause a problem.
Identifying and working with older adults who have cognitive impairment are important for their safety and for the safety of others. Older patients with cognitive impairment can develop difficulties in remembering and correctly adhering to instructions about medications for their other health problems. In addition, activities such as cooking and driving can become dangerous.
Many patients with cognitive impairments experience behavioral changes. For instance, they may withdraw from or lose interest in activities, grow irritable or uncharacteristically angry when frustrated or tired, or become insensitive to other people's feelings. During more advanced stages of cognitive impairment, people may behave inappropriately—kicking, hitting, screaming, or cursing. Depending on the stage of the disease, you can suggest activities that your patient might still enjoy—for example, listening to music and perhaps dancing, playing games, gardening, or spending time with pets.
Some of your older patients may have a specific condition called mild cognitive impairment (MCI). People with MCI have ongoing memory problems but do not have other losses associated with AD such as confusion, attention problems, or difficulty with language. Some people's cognitive problems may not get worse for many years. Some people with MCI may convert to AD over time. Research is ongoing to determine better which people with MCI will develop AD.
The suggestions in this section of the booklet pertain specifically to effective communication with patients with cognitive impairments.
Accurate diagnosis of AD or other cognitive problems can help your older patient and his or her family to plan for the future. Early diagnosis offers the best chance to treat the symptoms of the disease, when possible, and to discuss ways of positively coping with the condition, including discussing care options. A relatively early diagnosis allows patients to make financial plans, prepare advance directives, and express informed consent for research. Yet data suggest that only a small fraction of people with AD are ever diagnosed.
When patients are only mildly impaired, they can be adept at covering up what is happening to them. However, giving a few straightforward tests, using a medical history, and taking a family history from another family member can often tell you if there are persistent or worsening problems. It is best to conduct tests or interviews with the patient alone so that family members or companions cannot prompt the patient. Information can also 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 or following the visit are also a source of information, but keep in mind patient privacy concerns.
Although assessing an older person's cognitive function is important, formal testing of mental status tends to provoke anxiety. 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 appointment—either between the history and the physical examination or after the examination—or to refer the patient to a neuropsychologist for more detailed assessment of cognition. If you administer a cognitive status test, try to present it 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. The most commonly used screen is the Mini-Mental State Examination. This test can be used to screen patients for cognitive impairment and can be administered in the primary care setting in about 10 minutes. A positive finding suggests the need for referral to a neurologist or neuropsychologist for a more detailed diagnosis.
Cognitive impairment may reflect a variety of conditions, some reversible. In particular, it is important to review your patient's medications to check for anticholinergic or other potentially inappropriate medications. 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 other conditions or issues.
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 and keep his or her name in your notes for future reference. Make these arrangements early, and check that the patient has given you formal authorization to include the helper in the conversation about your patient's care.
Communicating With a Confused Patient
Some patients may prefer a cautious, reserved explanation. You might consider saying something like, "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. Now is probably a good time for you to start making financial and legal plans before your memory and thinking get worse." Some patients may prefer more precise language and appreciate it when a doctor uses specific words like Alzheimer's disease. If possible, schedule additional time for the appointment so that you can listen and respond to the patient's or caregiver's concerns. Also, if possible, offer to have a follow-up appointment to further discuss what to expect from the diagnosis.
Regardless of how you present the diagnosis, providing written materials can make a big difference in helping your patient and his or her family know what to expect. The NIA's Alzheimer's Disease Education and Referral (ADEAR) Center has free publications you can include in a patient/caregiver information packet. You might want to refer your patient to a neurologist or neuropsychologist for testing. The Alzheimer's Association or other supportive organizations can provide assistance in planning, social services, and care.
Informing family members or others that the patient may have Alzheimer's disease or any cognitive impairment may be 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 you will continue to be available for care, information, guidance, and support. If you are unable to provide all of these services, it would make a tremendous difference if you could refer the patient and family to a service organization.
All family caregivers face challenges, but these challenges are compounded for people caring for patients with Alzheimer's disease and other dementias. The patient usually 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:
For more information on Alzheimer's disease, contact:
This national voluntary health organization supports Alzheimer's disease research and care and offers information and support to patients and families. It has local chapters with community information including referrals, support groups, and safety services.
Alzheimer's Disease Education and Referral (ADEAR) Center
A service of NIA, ADEAR provides information, publications, referrals, a health information database, and a clinical trials database for the public and for health care professionals.
For updated Alzheimer's disease diagnostic guidelines:
Alzheimer's Foundation of America
The Foundation brings together groups around the country, including assisted living organizations, community services agencies, State agencies, and others, to collaborate on education, resources, and program design and implementation for people with AD, their caregivers, and families.