Too often, physicians are reluctant to give patients a diagnosis of dementia, even when cognitive testing shows memory loss or other symptoms. And when doctors do provide a candid diagnosis, they may send their patients and their families home without any guidance for what to do next. No practical advice. No sense of hope. And too often, not even any empathy.
That needs to change. And to help improve the way doctors talk to patients and their families about dementia, a team at the University of Florida School of Medicine led by Dr. Melissa Armstrong have identified best practices for physicians to communicate a dementia diagnosis to patients and their families. Their results were published in the journal Neurology Clinical Practice (paywall), the medical journal of the American Academy of Neurology and accompanied by a largely supportive editorial (paywall).
For Any Physicians
The project included physicians, a person living with dementia, family caregivers, and advocates. The result was a set of specific, actionable recommendations. For now, these are only suggestions, and not formal clinal guidelines. But Armstrong says she and her research partners are looking to incorporate the ideas in training programs for medical residents and other young doctors.
Importantly, while the recommendations were published in a journal aimed at neurologists, they easily could be adopted by others, including primary care doctors, who often deliver an initial diagnosis of Alzheimer’s disease or other forms of dementia. Indeed, they could be used by any physician who diagnoses a serious illness.
What A Patient Wants
Among the project’s key recommendations:
Physicians should ask patients and their families how they want to talk about their diagnosis. Some patients will want to know everything and others may not. But physicians should not assume that patients themselves are unwilling to have, or incapable of, a candid discussion.
This may seem obvious. But fewer than half of patients with Alzheimer’s disease and barely one quarter of those with other forms of dementia say they ever received a formal diagnosis. Only one-third of primary care physicians and half of specialists say they routinely give patients with dementia a diagnosis, though they are far more likely to tell family members.
When patients do want to know about their diagnosis and prognosis, physicians should communicate the information in clear, non-medical, language. This also seems obvious. But too often physicians use highly technical jargon that patients can’t understand. Sometimes they do so in an effort to be precise. But often, they hide behind jargon to avoid an honest discussion about a difficult diagnosis.
They should deliver a diagnosis with compassion and empathy, something people living with dementia and their family members say often is lacking.
And they should provide patients and their families with realistic hope. Too often, physicians do little more than tell their patients to get their lives in order because their symptoms will only get worse. To address this problem, the authors suggest ways that doctors can learn about empathetic communication.
While dementia generally is progressive, many people can manage their disease for years. Interventions as simple as diet and exercise can help many maintain their best possible quality of life for long periods of time.
Doctors should provide patients and family caregivers access to resources such as education about their disease, practical advice about self-care and supports and services, and guides to local service providers for those living with dementia and their family members.
The bedrock philosophy behind these suggestions is the very sensible but sometimes-forgotten idea that people living with dementia and their family members often work as a team to manage a difficult disease.
Both need the respect and attention of physicians. While it is not helpful for doctors to talk past their patients, it also is counterproductive for physicians to ignore the needs and ideas of care partners.
The recommendations were developed by a diverse group of Floridians that included a person living with dementia, three family caregivers, two representatives from the state chapter of the Alzheimer’s Association, two neurologists, two neuropsychologists, two geriatric psychiatrists, two geriatricians, and a communications specialist.
Medicare May Pay
Overall, the suggestions seem practical and actionable. I wish the group had gone further and recommended that physicians provide access to care navigation services for people with dementia. Navigation supports are common for patients with conditions such as cancer and heart disease. And they should be routine for people with dementia.
Indeed, Medicare has begun a demonstration program called GUIDE that will pay physicians and others for providing navigation services for people with dementia. Perhaps that will encourage neurologists and others to adopt ideas such those recommended by the Florida group.
It may not be realistic to expect physicians to provide this information themselves. But a neurology practice that sees many patients with dementia could hire a care navigator or guide patients to a third party, such as a community-based non-profit, that provides this information.
A diagnosis of dementia is hard. And physicians making those diagnoses operate under real challenges. They have limited time with patients, they are not trained in empathetic communication, and they have often little knowledge of local social supports. But they need to do better, and these suggestions can help.