1. Oral Home care for adults with developmental disabilities: A survey of caregivers PM Minihan, JP Morgan, K Yantsides, C Nobles, A Park, M Finkelman, P Stark, A Must
National Institute of Dental and Craniofacial Research
Tufts University School of Medicine & School of Dental Medicine [NIDCR 1RC1DE020396]

2. ‘Silent Epidemic’
“What amounts to a ‘silent epidemic’ of oral diseases is affecting our most vulnerable citizens.” (US Surgeon General, 2000)
Oral disease disproportionately impacts people with disabilities, including developmental disabilities (DD) [National Reports: ‘00, ‘02, ‘02, ‘05, ’10]
People with DD face special challenges.
Individuals with DD are more likely to have periodontal disease, untreated dental caries and missing teeth than the general population (Morgan et al, 2012)
Lack of information impedes efforts to improve their oral health
Since 2000, 5 national reports have called attention to the disproportionate impact of oral disease on people with disabilities, including people with developmental disabiltiies. People with DD face special challenges. accessing dental services and performing daily oral home care. Many challenges are associated with the chronic medical and behavioral conditions as well as the physical and sensory impairments that often co-exist with DD. Although information is limited, individuals with DD have been found to have a higher prevalence of periodontal disease, untreated caries and missing than the general population. Lack of information about the complex issues involved in meeting the needs of this group was cited in each of the five national reports referenced above as a major impediment to efforts to improve their oral health.
Oral Health in America. David Satcher

3. Influences on the Oral Health of Adults with Developmental Disabilities
Federal & State Policies, Laws
State DD agencies, Medicaid
Organizations
Dental offices, professional societies, dental schools, advocacy groups
Interpersonal
Families, residential caregivers, friends, community supports
Adults with DD
Oral health status
This slide uses a social ecological framework to identify numerous spheres of influence on the oral health of adults with DD. At present, much of the concern about the poor oral health of adults with developmental disabilities is concentrated on their lack of access to dental services and this is an important issue. Many state Medicaid programs do not support dental care for adults, including adults with disabilities. In this survey, we turned our attention to the domain of interpersonal influences – specifically, the role of caregivers in residences in promoting oral health. Although widely assumed to be important to the oral health of adults with DD, there is limited information about the caregiver role. For this reason, we surveyed caregivers to better understand the role they play in promoting oral health. information is needed to develop preventive intervention strategies to improve the oral health of this group
The site of the research – a statewide system of safety net dental clinics – administered by Tufts Dental School and supported by the Commonwealth of Massachusetts, through the state Depts. of Developmental Services and Public Health and third-party revenues including MassHealth (Medicaid), demonstrates the influence of organizations and federal and state policies on the oral health of adults with DD.

4. Goal
To collect information from caregivers about their role in promoting the oral health of adults with developmental disabilities to use in developing preventive intervention strategies
Perceptions of the oral health needs and practices of the adults with DD in their care
Perceptions of the issues that promote and impede oral home care routines in residences
Opinions about resources to facilitate preventive home care

5. Tufts Dental Facilities for Persons with Special Needs
This research was sited at Tufts Dental Facilities for Persons with Special Needs, a statewide network of six clinics providing comprehensive and specialized services to approximately 7,000 people with developmental disabilities. The clinics were established in 1976 as part of a federal consent degree between the state Dept. of Mental Retardation and parents of children living in state institutions for people with mental retardation. The parents had charged the state with violating their children’s civil rights by allowing them to live in such horrific conditions. The TDF clinics were established as the Plan of Correction to ensure quality dental services for this group. Currently under a ‘carve-out’ provision, Medicaid funds four preventive dental visits a year for adults with developmental disabilities.
Statewide network of six safety net clinics serving 7,000 patients with DD.
Supported by the Commonwealth of Massachusetts. [MA DDS, DPH, MassHealth]
Established (1976) by federal consent decree to correct civil rights violations in state institutions for people with mental retardation.

6. Methods Design Participants Data collection Data Analysis
Cross-sectional study
Participants
Caregivers (paid & family) of adults with DD (age 20+) with minimum of 6 months care- giving experience and direct involvement with oral home care
Recruited when accompanying adult with DD to clinic appointment
Convenience sample
Data collection
CAPI survey completed in clinics (Sept. 2011–May 2012) (English)
Data Analysis
Descriptive statistics assessed using chi-square for comparisons of proportions (p<=0.05)
Certified as exempt by Tufts IRB
$25 Walmart gift card

7. CAPI Survey Instrument
Sections
Practice questions/warm up
Characteristics of the adult with DD visiting the clinic and his/her oral health needs and oral home care routines
Factors that influence oral health activities in the residence (or home)
Characteristics and oral health routines of caregivers
Mounted on ‘netbook’ computers for completion in 1-hour window before/after appt. or while in operatory
Primarily closed-option multiple choice questions
CAPI design automatically routed paid and family caregivers to appropriate questions and facilitated other skip patterns
Practice questions/warm up
Confidence building if computer experience or skills lacking
Demographic, general health, functional level, level of assistance required, oral health status, needs and practices
Oral health activities in the residence (or home)
Oral health routines and challenges, availability and use of supplies, caregiver’s training, knowledge and attitudes about oral home care
WE WONT BE REPORTING ON THE CAREGIVERS OWN ORAL HEALTH PRACTICES TODAY.

8. Select Caregiver Characteristics
ON THE LEFT. Family caregivers older than paid caregivers and they were primarily parents.
ON THE RIGHT. Of note, the paid caregivers who participated were an experienced and knowledgeable group: three-quarters had 5 or more years of experience supporting adults with DD and just under half had 5 or more years of experience supporting the person they brought to the clinic.

9. Findings: Caregivers’ Perspectives on . . .
Adults with DD
Demographic, health and functional characteristics
Oral health care needs and practices
Residential Influences on oral health routines
Availability and use of dental products, oral home care challenges
Training, caregivers’ confidence levels, usefulness of instructional resources
WILL MAKE COLOR CODED

10. Oral Health Status of Adults with DD (as reported by caregivers)
* Dentate adults only (n=522)
† p<0.01

11. Issues Influencing Oral Health (as reported by caregivers)
Characteristic
DD Adults with paid caregivers
DD Adults with family caregivers
p-values
Assistance with oral home care
% reminded or supervised
% gets hand over hand guidance
% caregiver cleans teeth
37.5%
16.5%
46.0%
38.0%
10.0%
52.0%
0.26
% able to let caregivers know about dental problems
70.4%
72.2%
0.64
Cooperation with teeth cleaning
% very cooperative
% somewhat cooperative
% not at all cooperative
44.6%
45.4%
54.0%
39.0%
7.0%
0.25
% with aspiration problems
28.6%
22.6%
0.07
% able to rinse and spit
66.3%
64.3%
0.71
The level of assistance adults with DD need with respect to oral home care, their ability to let caregivers know in some way about dental problems, and their capacity to cooperate with teeth cleaning are important considerations. As you see here, approximately two-thirds required direct assistance – that is hand-over-hand guidance or having their teeth cleaned by the caregiver. Many but not all were able to let caregivers know in some way when they have dental problems. Just under a half were described as very cooperative with teeth cleaning. Most were able to rinse and spit which facilitates oral care. About one-quarter were at risk for aspiration problems. Any differences seen between adults cared for by paid caregivers vs. family caregivers were not statistically significant.

12. Dental Products Used by Adults with DD (as reported by caregivers)
The one product that was used by most adults with DD was over the counter toothpaste, followed by over the counter mouthwash although it was used by far fewer adults. Use of prescriptive toothpaste and prescription mouth rinse was very low despite some indication that these products would have value for such a high risk group. Adaptive devices – like enlarged brush handles, double and triple headed brushes - and mouth props are said to be helpful but were used by very few adults.

13. Frequency of Tooth Brushing (as reported by caregivers)
The majority of adults with DD were brushing their teeth at least twice/day as recommended with fewer adults living with their families meeting the recommendation than those living with paid caregivers.

14. Frequency of Flossing (as reported by caregivers)
Only about one-third of adults with DD, however, were meeting the ADA recommendation that adults floss at least once/day. Of concern, close to 50% of adults with paid caregivers and just over one-third of adults with family caregivers flossed less than once/week.

15. Residential Influences on Oral Home Care Routines
Now we’re going to switch gears from reporting the caregivers perceptions of the oral needs and practices of the adults in their care to report on influences on oral home care within residences or homes.

16. Factors Interfering with Oral Home Care Routines
Families noted more constraints involving time and not enough help. Behavioral issues presented problems for both although more so for paid caregivers.

17. Behaviors Interfering with Oral Home Care (as reported by caregivers)

18. Caregivers’ Confidence about Oral Home Care Skills
% of caregivers reporting feeling ‘very confident’ about their skills to assist with:
CAN’T FIGURE OUT HOW TO FLIP ORDER SO THAT PAID IS TOP BAR (TRIED LOTS OF WAYS BUT NONE WORKED?)
Many more caregivers felt very confident to assist with toothbrushing than with flossing.

19. How Caregivers Learned to Assist with Oral Home Care . . .
Paid caregivers
Family caregivers

20. Instructional Resources: Caregivers’ Ratings of Usefulness
Resources Rated as ‘Very Useful’
Paid Caregivers
Family Caregivers
p-values
% Patient-specific verbal instructions from clinic
76.1%
54.5%
<.01
% Patient-specific written instructions from clinic
75.3%
55.4%
% Hands-on demonstrations of oral home care techniques
75.0%
56.2%
% Dental professionals visiting residences to support oral home care
59.1% NA
% Written materials
60.8%
47.5%
0.01
% Instructional DVDs
56.1%
31.7%
There were statistically sign differences between paid and family caregivers with respect to how useful they would find various instructional materials with families fidning every one far less useful than paid caregivers.

21. Conclusions
Caregivers find it difficult to support adults with DD with daily oral home care.
Toothbrushing occurred close to recommended frequencies.
Flossing occurred far less frequently than recommended.
Caregivers reported more confidence in their skills to assist with toothbrushing than flossing.
Supplies were not always available in residences.
Caregivers reported that behavioral issues prevented oral home care routines more than other factors.
Paid caregivers reported receiving more formal and diverse forms of instruction on how to assist with oral home care than families.
Family caregivers reported far more limited instruction and relied heavily on “trial and error.”
Patient-specific instructions at dental visits were deemed useful.

22. Limitations Caregiver sample may not be representative.
Caregivers represented adults with DD with access to specialized dental services on regular basis.
Caregivers who chose to participate may be particularly interested in oral home care.
Self-reports may be biased in favor of optimal and not actual oral health practices.
Reports of oral health problems represent caregivers’ perceptions and not diagnoses.
Focus was on the occurrence of oral home care practices and not necessarily on their quality.

23. Implications/Future Research Issues
Caregivers need additional support to assist with oral home care.
Paid caregivers are linked with public systems with the potential to increase instruction and support.
Special efforts must be made to reach out to families who lack access to instruction and information and are largely ‘on their own’.
Flossing presents a conundrum for the general population - and for this population. Preventing gum disease and tooth loss will require creative thinking re flossing & other preventive strategies.
Good oral health for patients with DD requires partnerships between patient, dentist & caregiver. Efforts to improve oral home care supports must occur hand-in-hand with efforts to secure access to dental services.
DD adults who lack access to routine dental care services are precluded from achieving optimal oral health despite receipt of quality oral home care.