The responsibility for both diagnosing and managing patients with dementia often falls largely on the primary care physician.
Managing dementia in older patients can be among the hardest things doctors face in ambulatory care, says Barak Gaster, MD, a primary care physician (PCP) and professor of medicine at the University of Washington in Seattle.
Incidence is high, especially in patients over 85. An estimated 6 million Americans have Alzheimer’s disease, the most common form of dementia, while another 12 million have mild cognitive impairment. As a result, PCPs are frequently confronted by dementia’s complexities and dilemmas, whether making a clear diagnosis or helping patients and their families adjust to the lifestyle changes it imposes.
“It is an emotionally fraught and time-consuming conversation for the PCP,” Gaster says. “There can be a lot of uncertainty involved, and a lot of fear when you’re talking about the slow progressive loss of what many people would consider as their central identity-their cognition.” Add to that, there aren’t enough dementia experts, neurologists, geriatricians, or geriatric psychiatrists, to collaborate with. So the responsibility for both diagnosing and managing patients with dementia often falls largely on the PCP.
Gaster trains internal medicine residents at UW. “My primary message in teaching about dementia is that we need to try to do a better job. Just go back to bedrock principles of primary care and make a commitment to the patient that you are going to be there for them and help them with whatever they are going to face medically,” he says.
Some patients, family members, and even physicians may be reluctant to acknowledge that dementia could be present, particularly at a time when there is no known cure. But failure to acknowledge the diagnosis can lead to poor care and miss opportunities to make important decisions for what lies ahead. Such decisions might include retiring from driving, completing an advance directive, appointing a trusted proxy for future health care decision making, considering other financial and legal needs, and incorporating memory aids and other tools.
“Perhaps the most important action for the PCP to take is to bring family members into the treatment planning process,” he adds. “Traditionally, patients come to PCP visits by themselves, but if they have gradually worsening dementia, it’s important to make sure family members are at the appointments. That way everybody hears the same thing from the doctor, and they can get involved in making good, caring decisions,” he says.
“One of the worst outcomes is stumbling into later stages of dementia without a diagnosis or family intervention. Families get angry because they don’t understand what’s happening to their loved ones or why they are forgetting things.”
Mary Ann Forciea, MD, an internist and geriatric specialist at the University of Pennsylvania, says the slow, gradual progression of dementia, with subtle changes in the early stages, is another challenge for the PCP. She recommends using Medicare’s annual wellness visit to screen for cognitive impairments.
The MiniCog, a screening tool for identifying cognitive impairments in older adults, takes only three or four minutes to administer. “If I suspect something is going on, a slightly longer screening tool is the Mini Mental State Examination,” Forciea says. Even the longer screening can be done in a doctor’s office. “But the problem for the doctor is time. This is a detection exercise, listening for subtle differences, trying to hear symptoms that are odd or new or different.”
Most people have an inkling
John Cullen, MD, president-elect of the American Association of Family Practice and a family practice physician at Valdez Medical Clinic, Valdez, Alaska, agrees that dementia can be one of the most challenging aspects of his job. It can be hard to distinguish dementia from other causes of cognitive loss, such as metabolic hypothyroidism or depression, which might be treatable.
“Mostly I see patients’ anxieties. I think most people (with dementia) have an inkling that something is wrong. If you don’t bring it up, they’re thinking about it anyway,” he says. Cullen tells his patients that the current Alzheimer’s treatments are not terribly effective, although they can try them if they wish. “At that point, we’re focusing more on the structures in their lives that will allow them to stay at home. The goal is to keep the patient at home for as long as possible.”
Forciea recommends encouraging patients to complete an advance directive, outlining their values and preferences for future medical care, while they are still able to participate. The PCP can advise the family to get an estate lawyer for financial planning and asset protections. Knowing that a plan is in place can offer some peace of mind.
In later stages, many patients can still remain in the home with the support of family caregivers, paid caregivers, neighbors, members of their religious community, and/or other support networks-although this may require significant coordination. Hospice care also plays a growing role in maintaining the dignity of patients with advanced dementia, Forciea says.
“Communicating about a dementia diagnosis in its early stages allows the doctor to impart a key message: This is not a death sentence,” Gaster concludes. “The disease can progress very slowly. People can stay themselves for many years, and they don’t need to be defined by their dementia. Living with memory loss is not easy, but there are ways to cope, to keep routines, to get exercise, to keep cognitive function longer and still find ways to enjoy life,” he adds.
“The PCP in many ways is well suited to take on this challenge. Primary care is the ideal model of a trust-building relationship.”
Other dementia management suggestions for PCPs