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Study: Caregivers of adults with developmental disabilities need more support, training

November 03, 2014
image of Tufts clinicians with patient
Receiving care: Tufts clinicians with a patient at the Tufts Dental Facilities for Persons with Special Needs. From left to right, Dr. Karen Chang, Jane Fitzgibbons, Michael Hancock, and Lori Lonchiadis.

Photo by Matthew Modoono, Tufts University
Boston —
To help improve the oral health of adults with developmental disabilities, policymakers need to provide adequate resources towards additional training and support for at-home caregivers, according to researchers from Tufts University's School of Medicine and School of Dental Medicine.

The researchers made this conclusion in their study, "At-Home Oral Care for Adults with Developmental Disabilities," published in the October issue of the Journal of the American Dental Association.

"The current policy focus on expanding access to care for adults with developmental disabilities will help to improve oral hygiene if it ensures access to regular dental cleanings," said principal investigator and co-author Paula M. Minihan, Ph.D.

"We believer, however, that a comprehensive policy approach to oral health that also improves support for caregivers is the optimal strategy," she added.

People with developmental disabilities have a high prevalence of cavities, gum disease and tooth loss. The caregivers provide assistance and support with brushing and flossing if a person with a developmental disability is unable to do so.

According to the study, which surveyed 808 caregivers who visited the Tufts Dental Facilities for Persons with Special Needs, 71.6 percent of paid caregivers received formal training in oral health care. That number drops to 6.4 percent when it came to family caregivers.

"It's a systems issue," Dr. Minihan said, "Family caregivers haven't received formal training in oral health care largely because they're not formally linked to the organized systems that provide this kind of training."

Each state administers an organized network of residential and day services for people with developmental disabilities. These networks typically support residences (group homes and apartments) with paid staff.

"I think it's fair to say that no one thought about the at-home oral care needs of individuals and their families," Dr. Minihan said.

Survey results include:

  • 85 percent of adults with developmental disabilities received assistance with teeth cleaning.
  • 79 percent brushed twice daily.
  • 22 percent flossed daily.
  • 45 percent never flossed.
  • 63 percent of caregivers report that behavioral problems interfered with oral health care routines — more than any other factor.

The authors acknowledge certain limitations in their study. The participants of the survey were visitors of the Tufts Dental Facilities for Persons with Special Needs, a network of clinics that provides comprehensive oral health care annually to more than 7,000 adults and children in Massachusetts, who have developmental disabilities.

Many of the patients and their caregivers have developed strong relationships with the dental professionals in these clinics, meaning the experiences of caregivers in the survey may not fully represent those of caregivers more broadly, according to the authors. In addition, because the survey relies on self-report, results may reflect participant responses of those particularly interested in at-home oral care.

Nonetheless, the results of the survey bring important information to policy discussions about the role and challenge of caregivers, the authors said.

At-home oral care, particularly flossing, presents substantial challenges for adults with developmental disabilities. Solutions must be tailored to address the different experiences and distinct needs of the family members and paid caregivers who assist these adults, according to the study.

Policymakers who appreciate the importance of family and paid caregiver training and support can call for and support programs that deliver on these needs, said co-author Aviva Must, Ph.D., professor and chair of the department of public health and community medicine at Tufts University School of Medicine.

"We expect that raising awareness and visibility of the multi-level training and support needs of caregivers in their role supporting at-home oral health care will lead to the development of programs and aids tailored to the needs of these caregivers and their clients," Dr. Must said.

Policymakers should consider establishing an organized system that provides caregivers, including family caregivers, with information and support, according to Dr. John Morgan, co-principal investigator in the study and an associate professor in the department of public health and community medicine at Tufts University School of Dental Medicine.

"We hope that this study contributes to the development of a multilevel approach to oral health care for adults with developmental disabilities — one that considers how at-home oral care can best complement oral care provided in the dental office," Dr. Morgan said.