Caregiver distress study

Caregivers experience distress from lack of information

Individuals caring for loved ones with dementia need more guidance from healthcare professionals to help manage patients’ pain

Individuals who care for family members and friends with dementia often lack support, education and communication from healthcare professionals, leading to caregiver distress and inadequate patient care, according to a new study led by University of Washington School of Nursing researchers.

The study, published in the American Journal of Alzheimer’s Disease & Other Dementias, found caregivers of hospice patients with dementia often had difficulty implementing pain management interventions. Caregivers also experienced physical and psychological distress due to lack of resources and information they needed to care for their loved ones.

“Patients with dementia often experience high levels of pain,” said George Demiris, PhD, FACMI, University of Washington alumni endowed professor in nursing and co-author on the study. “Informal caregivers play an essential role in helping patients manage their pain, but often lack the necessary tools to do an effective job.”

In 2014, more than 1.6 million people received hospice care in the United States. Of these, around 15 percent had dementia as their primary diagnosis, with many more having dementia in addition to other ailments.

The UW study analyzed audio-recorded interviews of 51 informal caregivers – family members or friends of hospice patients with dementia. The interviews were part of a larger clinical trial in which problem solving interventions for caregivers were tested.

Robin Tarter RN, BSN ’15, MS, participated in the study as part of her UW School of Nursing BSN Honors Program.

When researchers listened to the caregiver interviews, four major themes emerged:

  • Difficulty communicating with patients
  • Lack of consistent guidance from healthcare professionals
  • Uncertainty about the cause and source of patients’ pain
  • Secondary suffering of caregivers

“Communicating about pain can be extremely challenging for patients with advanced dementia,” said Robin Tarter RN, BSN ’15, MS, who participated in the study as part of her UW School of Nursing BSN Honors Program research mentored by Dr. Demiris. “We found that caregivers had so much difficulty communicating with patients, they often had to rely on non-verbal gestures, like squeezing a caregiver’s hand, to determine if the patient was in pain.”

Caregivers also cited a lack of guidance from healthcare professionals on what to anticipate during hospice care and poor communication related to pain prevention methods. The group reported being surprised by the severity of pain in their loved ones and stated that professionals rarely addressed pain in health assessments.

The comments most frequently referred to care received before patients were enrolled in hospice, but even after enrollment, many caregivers said hospice nurses, physicians and healthcare providers occasionally failed to give guidance on potential pain crises or prepare them for managing pain.

Tarter said the most surprising finding was how frequently caregivers were uncertain about the cause of patients’ pain and how that inhibited their ability to provide help with pain management.

“Many caregivers said they couldn’t differentiate between real and imagined pain in patients due to communication barriers and a lack of obvious physical causes,” she said.  “The modern clinical definition of pain is whatever the patient says it is. Clinicians are usually trained to treat pain symptoms even when they are unable to determine the cause, but laypersons have rarely been educated about this approach.”

Researchers also observed caregivers’ experience of secondary suffering, which describes the emotional and physical impact they experienced after prolonged periods of stress and fatigue. Symptoms included anxiety, exhaustion and a sense of resignation.

“Our findings show that caregivers of persons with dementia in hospice face numerous and significant challenges when it comes to managing their loved ones’ pain,” Tarter said. “Hopefully this study can inform training of hospice healthcare professionals so they can better provide effective and comprehensive support for caregivers and patients.”

The study was funded by the National Institute of Nursing Research, part of the National Institutes of Health. Two researchers from the University of Missouri’s School of Medicine also contributed to the study.