Dental care for people with developmental disabilities

Mary Otto

About Mary Otto

Mary Otto, a Washington, D.C.-based freelancer, is AHCJ's topic leader on oral health, curating related material at healthjournalism.org. She welcomes questions and suggestions on oral health resources at mary@healthjournalism.org.

Blog photo credit: Image by Anderson Mancini via flickr.

Image by Anderson Mancini via flickr.

Writing about the lives of developmentally disabled people and their caregivers? Don’t overlook the topic of dental care. Research indicates that disabled people, including those with developmental disabilities, experience more disease and are less likely to have access to professional dental services than people without disabilities.

The challenges that the 4.9 million Americans living with developmental disabilities may face in maintaining home dental hygiene routines have received little attention. In many cases, people living with conditions such as attention-deficit-hyperactivity disorder, autism, cerebral palsy and intellectual disabilities need help with tasks such as tooth brushing and flossing. The majority of these people live at home and providing this assistance can be challenging for caregivers, particularly family members, according to a unique large-scale study featured on the cover of the October issue of the Journal of the American Dental Association. Janice Neumann picked up on the study in a piece for Reuters Health  that ran Oct 2 in the Orlando Sentinel under the headline “Caregiver Training May Help Mentally Disabled Adults with Dental Care.”

“Helping adults with developmental disabilities brush and floss their teeth is often hard for paid and unpaid caregivers, but family members could be in extra need of training,” Neumann wrote. “Researchers found poor brushing and flossing habits and high rates of dental disease in a survey of disabled adults, and many caretakers lacked confidence in their ability to help their charges with daily dental care.”

As Neumann noted, people with disabilities have more cavities and periodontal disease than the general population, which can lead to loss of teeth and infection. “They also have cognitive, behavioral and physical challenges that can make brushing and flossing difficult,” she wrote. Maintaining oral health is “a critically important element to their quality of life,” Paula Minihan, lead author of the study, told Neumann.

To get a better understanding of the challenges, Minihan and other researchers from Tufts University School of Dental Medicine and Tufts University School of Medicine surveyed a total of 808 family and paid caregivers about the oral health of the disabled adults and their hygiene routines. Caregivers reported a high prevalence of oral health problems – they told researchers that nearly a quarter of the adults in their care had swollen or bleeding gums and more than a third had cavities or decayed teeth.

Yet 63 percent of the caregivers said that the behavior of the disabled adults they cared for interfered with their ability to help them with brushing and flossing. While a majority of the professional caregivers said they had attended formal group training sessions in assisting with home oral care, fewer than 7 percent of family caregivers had received such training, the researchers found. The caregivers reported that 85 percent of the disabled adults in their care needed help with brushing due to their disabilities. More than 13 percent needed “hand-over-hand guidance.”

In spite of the difficulties, nearly eight in ten of the disabled adults were reported to brush their teeth twice daily, meeting recommendations of the American Dental Association (ADA).

Flossing proved far more difficult. Only 21.5 percent flossed once per day as recommended by the ADA. Caregivers reported that close to 45 percent of the developmentally disabled adults never flossed.

Many more caregivers participating in the study reported that they felt confident in their tooth brushing skills compared to their flossing skills. Flossing the teeth of another person, particularly one coping with a disabling condition can be difficult, even frightening, at least in part because the process requires placing one’s hands into the mouth of someone else, researcher John P. Morgan, a member of the dental faculty at Tufts and study co-author says. “It’s a big challenge.”

The caregivers and patients who participated in the study were users of a specialized system of dental clinics designed to meet the needs of developmentally disabled people living in Massachusetts. The clinic system, which has been sustained through a long-term collaboration between Tufts School of Dental Medicine and the state government, offers access to professional care that is not available to disabled people in many other communities. Many studies focus on access to professional dental care to explain disparities, but the patients in Minihan’s study had access to professional care.

Access is just one requirement for maintaining oral health, Minihan says. Home care is also important. Yet in the case of the disabled, obtaining help with routine brushing and flossing care may depend upon a caregiver who has not received training that might help in addressing the task.

 

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