FEATURE | Posted June 8, 2018

When family caregivers don't get the whole picture, loved ones with dementia may suffer

UC Davis psychiatrist studies the disconnect between medical and behavioral treatments

Family caregivers of loved ones with Alzheimer’s or other kinds of dementia may be getting medical advice – and antipsychotic drugs for related symptoms such as aggression, delusions, hallucinations and sleep disturbances – from doctors. But they learn about other kinds of treatment approaches that may be beneficial from family, friends and community resources.

This lack of coordination and communication about symptom management can have negative consequences for patients. Use of antipsychotic drugs to treat behavioral and psychiatric symptoms in people with Alzheimer’s or other dementia, for example, can increase the risk of cardiac arrhythmias, cardiovascular disease, pneumonia and all-cause mortality. And while non-drug, behavioral interventions are considered first-line treatment for dementia-related neuropsychiatric symptoms, their use has not gained popularity.

Glen Xiong, a psychiatrist with the UC Davis Alzheimer’s Disease Center and Department of Psychiatry and Behavioral Sciences, set out to understand the gap with a study published recently in Primary Care Companion, CNS Disorders.

Xiong and his co-researchers recruited 13 primary family caregivers of Sacramento area residents with dementia. Each family caregiver was interviewed about their perspectives on the relationship between physician services and community resources for dementia-related behavior management.

The interviews touched on four areas:

  • Descriptions of the family member’s behavior problems and the caregiver’s understanding of the nature and seriousness of the symptoms
  • How the decision to either accept or decline treatment unfolded and the satisfaction with the discussions with the primary care provider
  • Understanding the risks and benefits of pharmacological treatment such as antipsychotic use
  • Caregiver description of the choices of therapy and how they perceived the outcomes of those therapies
“It's a heartbreaking disconnect,”

— Glen Xiong

What they learned from the interviews was that most discussion and communication about non-drug treatment took place with family and friends and community resources such as caretaking support groups, hired caregivers and other education resources. But the recommendations for pharmacological treatment came from physicians, who did not tend to recommend non-drug approaches or resources.

“It's a heartbreaking disconnect,” said Xiong. “If you are a caretaker you think the medical system can help to connect you to other resources, but we are not equipped, resourced or well-connected. The physician or neurologist is focused more on diagnosis and medical treatment of symptoms.”

Xiong envisions a system of care that would connect the two so that physicians can recommend evidence-based behavioral therapies as well as drug treatments. He also advocates training for family caregivers in behavioral interventions, such as reorientation and redirection when patients are aggravated, that may alleviate difficult symptoms and reduce reliance on antipsychotic medication.

“At some point in a value-based health system we should start taking a comprehensive approach with these complex disorders,” he said.