Journal of Intellectual Disability Research

45
VOLUME 44 PART 1 pp 45±52 FEBRUARY 2000

Needs for oral care among people with intellectual

disability not in contact with Community Dental Services
S. Cumella, N. Ransford, J. Lyons & H. Burnham
University of Birmingham School of Medicine, Division of Neuroscience, Social Science in Medicine Group, Queen Elizabeth
Psychiatric Hospital, Birmingham, UK

Abstract carers for decision-making and support with regard to

visiting the dentist and tooth-brushing. Carers requested
Previous research has found an unmet need for oral
training in oral care and the use of dental services, and
care among people with intellectual disability. The key
support in dealing with clients who have problems
factors which have been indicated are low expectations,
tolerating tooth-brushing. The subjects had experienced
fear of treatment, lack of awareness among carers and
a wide variation in the treatment provided by dentists,
problems in accessing dental services. The withdrawal of
but had not found it difficult to access a dentist despite
many general dental practitioners (GDPs) from the
recent reductions in the availability of NHS dental care.
National Health Service (NHS) may have exacerbated
They expressed a particular need for a good relationship
the latter problem in the UK. The aims of the present
with their dentist and for their dentist to have personal
study were: (1) to assess the extent of unmet clinical
skills in relating to people with an intellectual disability.
needs in a group of adults with intellectual disability
Dental screening checks and oral care training for carers
living in the community who were not in contact with
should be made easily available. Care plans should
the Community Dental Service (CDS); and (2) to
include tooth-brushing and dietary issues for all clients
explore their perceptions of teeth and contact with
who have their own natural teeth. There are significant
dentists to identify how oral care can be improved.
training issues for dentists in developing personal skills in
Interviews were completed with subjects and/or carers
total communication, disability awareness and attitudes
and a dental examination was completed. There were
which value people with intellectual disability.
higher levels of untreated caries (decay), and gingival or
periodontal (gum) problems among the sample than in Keywords access, Community Dental Services, fear
either the general population, or in a previous survey of of treatment, oral care
CDS users at day centres and residential facilities. The
subjects were largely unaware of dental problems, and
used the appearance and absence of pain to judge the Introduction
condition of their teeth. They depended greatly on their
Surveys of the dental health of adults with an
intellectual disability have consistently identified
Correspondence: Stuart Cumella, University of Birmingham
School of Medicine, Division of Neuroscience, Social Science in
problems such as poor oral and denture hygiene, a
Medicine Group, Queen Elizabeth Psychiatric Hospital, high prevalence of gingival disease and untreated
Birmingham B15 2QZ, UK. E-mail: S.Cumella@bham.ac.uk dental caries, a different treatment pattern with a

# 2000 Blackwell Science Ltd

 Journal of Intellectual Disability Research
46
S. Cumella et al . Oral care needs
higher proportion of missing and filled teeth, heavy
tooth wear as a result of bruxism (tooth grinding),
increased traumatic injuries to the teeth and mouth,
defects of tooth enamel, and delayed eruption of
teeth and retained primary teeth (Hogan & White
1982; Hinchcliffe et al. 1988; Shaw et al. 1990;
Francis et al. 1991; Kendall 1992b). These results
are comparable with those from studies of the
general health of people with an intellectual
disability, which have found a high prevalence of
common medical problems, many of which may be
unrecognized or inadequately managed (Kerr 1997;
Martin et al. 1997).
Adults with an intellectual disability are not a
homogenous group in terms of general or dental
health (Martin 1997; Kendall 1992a), and the extent
to which needs are met for a particular individual
depends on the expectations which they and their
carers have of health services, the degree of social
support which they receive, their ease of access to
services, and their ability to tolerate treatment. In
terms of access to dental care, an important factor
may be fear of pain, particularly among people who
have been residents of long-stay hospital and
experienced dental treatment under general
anaesthetic (Band 1997). Alternatively, some people
with an intellectual disability may manage their fear
by avoidance, reasoning that they would keep their
teeth longer if they left them to fall out, despite the
pain that they would experience along the way (Band
1997; Gordon et al. 1998). Few studies have
attempted to identify the views of people with an
intellectual disability on their teeth or contacts with
dentists, or learn from them how oral care and dental
treatment can be made a more positive experience.
Additional factors determining poor dental health
among adults with an intellectual disability may
include the problems which they experience in
accessing general dental practitioners (GDPs)
willing to provide treatment. Extra time may be
required to treat these clients, which is not
compensated for by the current fee system. The
problem may have become more prominent in the
UK because of recent changes in the provision of
dental services. During the 1990s, many GDPs left
the National Heath Service (NHS) because of
changes in contractual arrangements and
remuneration. This has reduced the availability of
NHS dentistry generally and placed an increased
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VOLUME 44 PART 1 FEBRUARY 2000
demand on the limited number of dentists working
for the NHS on a salaried basis in the Community
Dental Service (CDS).
Little is known about the impact of these changes
on the dental health of people with an intellectual
disability, particularly those not in contact with the
CDS. It is notable that previous UK surveys have all
involved people attending day centres or training
establishments, which usually have regular contact
with the CDS, but there is also a population of
adults with an intellectual disability attending
colleges, in various forms of employment or
otherwise not in contact with day services who may
experience greater problems in receiving appropriate
dental treatment.
Subjects and methods
The aims of the present study are to assess the
extent of unmet clinical needs among adults with an
intellectual disability who are not already in contact
with the CDS, and to explore their perceptions of
their teeth and contact with dentists to identify how
oral care might be improved.
The sample was identified from the North
Warwickshire Special Needs Register (SNR),
Warwickshire, UK, which records all people with an
intellectual disability known to the health and social
services who are resident in a mixed urban and rural
area with a population of 180 000 (main towns:
Nuneaton &Bedworth). The SNR recorded 115
people aged 5 18 years living in the community and
not already in contact with the CDS. Twenty-nine
residents in a group of residential care homes were
also excluded from the sample because the head of
the home decided on behalf of the residents that
participation in the survey would infringe the
principle of normalization.
An interview schedule was developed following
two focus groups comprising people attending local
social education centres (SECs). These groups
identified the main issues relating to oral care as
their experiences of the dentist, looking after their
teeth and making choices. Individual questions were
developed with the assistance of a communication
therapist to reduce the complexity of the questions
without reducing the quality of the information
collected. The schedule was piloted at Nuneaton
SEC and subsequently modified.
 Journal of Intellectual Disability Research
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S. Cumella et al . Oral care needs
Four interviews were completed with members of
the sample alone, all of whom had skills in
expressing themselves verbally. All other interviews
were completed with a carer (i.e. family member or
keyworker) present. The problems in interviewing
people with an intellectual disability have been
identified in several studies (Smyly 1997). Most
respondents found it difficult to respond to
questions which asked them to give reasons or
express opinions. The high turnover of staff in some
residential homes presented problems because carers
were not informed about the respondent's dental
needs.
During the interview, each subject was offered a
dental examination. This was performed by a
member of the research team (J.L.), who is
calibrated to British Association for the Study of
Community Dentistry (BASCD) standards. The
examination was a standard dental epidemiological
examination, comprising a general oral examination,
a prosthetic examination for those with dentures and
a dental examination for those with teeth. The
criteria used for the examinations are those used
nationally. The local policy on cross-infection was
complied with at all times.
Interviews were completed for 60 people (52% of
the sample), while 27% refused, and 21% either
could not be contacted or did not respond to letters
and telephone calls. The response rate for the oral
examinations was lower, with 50 subjects taking part
(43% of the sample). These response rates are not
unusual for studies of this kind, and may possibly
reflect suspicion about surveys and the fear of dental
care among many people. There were no statistically
significant differences between responders and non-
responders with respect to sex, age, residential type
or area of residence. Nevertheless, the low response
rate means that caution is needed in generalizing
from the results of the present study to estimate the
extent of unmet need in other areas.
Results
Sample characteristics
The subjects included 33 men and 27 women. Most
respondents (54%) were aged between 25 and
44 years, inclusive, and few (6%) were of retirement
age. Almost half (49%) lived in their family home
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VOLUME 44 PART 1 FEBRUARY 2000
with their parents, while 38% lived in residential
care, 7% in their own home, 3% in lodgings and 3%
in nursing homes. It was possible to identify a main
carer for all but three subjects. Carers were almost
evenly divided between members of the immediate
family (45%) and residential care staff (43%), with
the remainder comprising two relatives and two
landlords. The mean length of contact by staff carer
with subjects was 4.2 years.
Condition of the teeth
The results of the oral examination indicated that
78% of subjects were dentate (had some natural
teeth), with 48% having 21 or more teeth. The mean
number of teeth for the dentate group was 21.1 and
the mean number of sound teeth/respondent was
10.6. Table 1 shows the mean numbers of decayed,
missing and filled teeth (DMFT) for the sample
examined. The mean DMFT was 16.3 and over half
the subjects (58%) had untreated caries.
The examination revealed wide variations in the
dental care received by subjects. A comparison with
the results from the UK Adult Dental Survey (Todd
& Lader 1991), also shown in Table 1, indicates that
the sample had a high proportion of missing teeth,
suggesting that they were more likely than the
general population to have experienced extractions
rather than fillings in response to caries. This is a
common finding in studies of the dental care of
people with an intellectual disability (Hinchcliffe
et al. 1988; Shaw et al. 1990; Francis et al. 1991;
Kendall 1992b). Over one-quarter (28%) of the
Table 1 Comparison of the mean numbers of decayed, missing
and filled teeth (DMFT) between the present sample of people with
an intellectual disability (sample) and adults in England (data from
Todd & Lader 1991)
Mean number of teeth
Sample (n ˆ 50)
Condition Mean SD Adults in England
Decayed 2.9 4.83 1.0
Missing 8.4 7.51 7.6
Filled 5.0 3.97 8.4
Total DMFT 16.3 9.27 17.0
 Journal of Intellectual Disability Research
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S. Cumella et al . Oral care needs
subjects had crowns fitted, with a mean of 2.1
crowned teeth per subject. Seven individuals had
five or more crowns, and in the case of two subjects,
the only restorations present were crowns. Although
there have been few reports published on the
number of traumatized teeth among similar groups,
these appear to be of great importance. In the
present study, 45% of subjects had one or more
traumatized teeth, with a mean of 1.3 per subject
affected.
Condition of the gingivae
The association between levels of oral hygiene
indicated by the dental plaque score and gingival
condition is well recognized. Using only visual criteria,
58% of subjects had poor oral hygiene. Just over one-
third (35%) had a healthy gingival condition, 40% had
a gingival condition reversible by tooth-brushing, and
25% required clinical intervention by a dentist or
hygienist. The low reported levels of severe gingivitis
suggest that many of the gingival problems in this
group could be resolved by attention to tooth-
brushing and basic forms of treatment such as scaling.
However, a minority required more extensive
treatment, and in some cases, the condition resulted
from some antiepileptic medications which cause
gingival hyperplasia (marked overgrowth of the gums).
The results of the examination confirmed those of
previous studies that plaque scores (indicating poor
oral hygiene) increase with the degree of intellectual
disability, with the most disabled having the poorest
oral hygiene and the greatest need for treatment for
gingival problems (Lyon 1997).
General oral condition
One-fifth (20%) of subjects had at least one distinct
lesion of the oral mucosa. Oral ulceration was the
most frequently observed lesion, occurring in 10%
of the sample. Just under one-quarter (23%) of the
sample were edentulous, which almost equals the
level reported in the UK Adult Dental Survey (Todd
& Lader 1991). Only 5% of edentulous subjects
wore complete dentures at the time of examination,
although a further 5% had dentures, but did not
wear them. There were several examples of poor
denture hygiene, with most partial or complete
dentures having debris covering most surfaces. This
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VOLUME 44 PART 1 FEBRUARY 2000
usually results in inflammation of the supporting
oral tissues and possible infection from Candida
albicans (oral thrush).
Awareness of dental problems
When asked in the interviews about the condition of
subjects' teeth, over half (57%) were reported to be
in a good condition, with 39% `fair' or `all right' and
only 4% `poor'. Teeth were said to be in good
condition because of the way these had been looked
after or the absence of pain. Subjects whose teeth
were deemed `poor' mentioned problems with eating
and shame at their personal appearance:
`(It) makes me look uglier. . . When my friends
see me, they run a mile They always say to
me, ``Don't you ever smile?'' and I say, ``I've
got nothing to smile about, and if I did, you
wouldn't like the state of my teeth anyway''. . .
I never smile.'
Eighteen per cent of subjects reported having
dental and gum problems during the past month,
including pain (9%), mouth ulcers (5%) and other
gum problems (5%). However, carers often found it
difficult to identify a dental problem. They were
aware when the subject was in discomfort, but were
only able to pinpoint the nature of the problem
through a process of elimination. Less than one-
quarter (23%) of the subjects reported being in need
of dental treatment.
Attitudes to dental care
Almost all (89%) subjects and/or carers said that
they regarded the condition of the subject's teeth as
important. The main reasons were the need to
maintain a good personal appearance, the trauma of
losing teeth/having teeth taken out and the
importance of eating properly. Examples of reports
by subjects include:
`(I) couldn't talk. . . Feel a bit embarrassed if I
didn't have nice teeth.'
`I don't want to lose my teeth. . . It's pride ± I
don't want to lose my pride. . . I'd go mad.'
`Cause if they all go bad you gotta have them
all out. . . I like me own teeth ± I don't want
false teeth. . . Probably make me sick.'
 Journal of Intellectual Disability Research
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S. Cumella et al . Oral care needs
Carer involvement in oral care occurred in 22% of
cases because the subject was physically unable to
clean their own teeth or because some residential
care homes specified oral hygiene in a wider health
care plan managed by staff. In such cases, the hand-
over-hand technique was usually used to encourage
the subject to learn how to brush their own teeth.
Some carers used an electric toothbrush where
manual brushing had been unsuccessful and 18%
also used mouthwashes. Just over one-quarter (27%)
of subjects or carers reported that they had received
specific advice on dental care. Most carers
(particularly those employed in residential homes)
reported that they would welcome further advice.
Use of dentists
Subjects and/or their carers were asked about the
health services used by the subject. Table 2 shows
that almost all (96%) used their general practitioner
(GP), while the dentist was the next most frequently
used health professional. One-quarter or more
subjects were also in contact with an optician, a
community nurse and a dietician. The GP was also
regarded as the first point of call if something was
wrong, and many subjects were in regular contact
with their GP for the treatment of disorders such as
epilepsy and diabetes.
Two-thirds (66%) of subjects claimed to have
visited a dentist during the last 12 months, while the
remainder gave more distant dates for visits or could
not recollect when they had last seen a dentist.
Some subjects who had received recent treatment
for a toothache reported that they no longer `had a
dentist' because the practice had either closed or
become private. Others who had not been in contact
Table 2 Percentage use of health services
Service Percentage
General practitioner 96
Dentist 77
Optician 41
Chiropodist 38
Nurse 25
Dietician 25
Speech therapist 23
Other 10
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VOLUME 44 PART 1 FEBRUARY 2000
for over 18 months still regarded themselves as
`having a dentist' despite the requirement to visit
every 12 months to remain registered for NHS care.
For most (61%) of the subjects, a trip to the
dentist was in the company of a carer, some staying
with the subject during treatment. The carer's
support was also often a practical necessity in
making and keeping appointments because many
subjects were unable to tell the time or organize
their time to keep appointments. Carers were also
needed to help a subject who used a wheelchair, or
who had limited road or directional sense. Indeed, it
was clear that carers were often instrumental in
subjects going to the dentist. This was supported by
the finding that most of the 13 people with an
intellectual disability who reported that they did not
have a dentist lived with little or no carer support.
Approximately one-quarter (24%) of subjects were
reported to be `always' or `sometimes worried' when
visiting a dentist. This was sometimes related to
particular dental procedures or instruments, but
most respondents seemed to accept going to the
dentist as something they had to do. One or two saw
a visit to the dentist as an opportunity for an outing.
In most cases, the subject attended the same
dental practice as the rest of the household, usually
because there was no reason not to. Where a
different dentist was used, it was usually to maintain
continuity with a dental practice which was familiar
to the subject or which was judged to be sympathetic
to the needs of people with an intellectual disability.
The most important factors given for a choice of
dental practice were the relationship with the
dentist, the dentist's knowledge of the subject's
special needs and the accessibility of the practice.
Four dental practices in the area were well-known
locally to offer a better service for people with a
disability and these were used by most subjects.
Most subjects said that their dentist was
understanding and patient.
Only four carers reported problems in accessing
dental care, mainly because a few dentists were seen
as unwilling to treat people with an intellectual
disability. One subject was unable to access the
dentist because it was unsuitable for wheelchair
users, while problems of access to services because
of the closure or privatization of some dental
practices were also cited by a few carers. One carer
was unsure where she could find a dentist willing to
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S. Cumella et al . Oral care needs
treat people with an intellectual disability. The main
reason given by subjects themselves for non-
attendance was their experiences of pain:
`I don't like none of them (dentists). . . They
say they weren't going to hurt my teeth and
they do. . . That's what's made me scared.'
`The drill. . . Scared shitless every time I look
at it.'
`It just put me off. . . I thought this can't be
right, I shouldn't be getting any pain.'
Community Dental Services
Subjects and/or carers were asked if they knew of
other dental services which existed apart from local
high street family dentists. There was limited
knowledge of the CDS and the term `Community
Dental Service' was assumed to refer to `any dentist
working in the community'. Those who correctly
identified the CDS referred to the mobile units that
visit SECs and schools.
Preferences
Both subjects and carers were asked what would
make the `perfect or ideal dentist' and how dental
services could be improved. Common elements in
their responses were the avoidance of pain,
friendliness and familiarity with the needs of people
with an intellectual disability (usually expressed as
`tolerance' or `patience'). A need was expressed for
providing care in the home for the severely disabled
and wheelchair access to premises. In addition,
waiting room facilities were mentioned, particularly
having vending machines for drinks, television, and
books and magazines with a high pictorial content
(Hello was cited as ideal).
Discussion
While the present results have to be interpreted with
caution because of the low response rate, these
confirm earlier research findings of higher rates of
gingival problems and untreated dental caries among
people with an intellectual disability than among the
general population. A comparison of the DMFT of
the present sample with that of the general
population of adults in England (Todd & Lader
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VOLUME 44 PART 1 FEBRUARY 2000
1991) shows a distinct treatment pattern, with a
higher proportion of missing to filled teeth, and
more untreated caries. Similarly wide variations in
dental treatment found in the present study, ranging
from subjects with many carious untreated teeth to
those with extensive restoration of their teeth with
crowns, confirm Kendall's (1992a) observation that
people with an intellectual disability are not a
homogeneous group with respect to dental health
and treatment.
In contrast to the dentist's clinical assessment, the
subjects' self-ratings of the condition of their teeth
appeared to be good, attitudes to their teeth positive
and a strong need for healthy teeth was expressed.
At the same time, the respondents were largely
unaware of the presence of caries and gingival
problems in their mouths, and relied on appearance
and the absence of pain to judge the condition of
their teeth. The finding that many carers had
difficulty in knowing whether a client was in pain
and that many subjects were unable to articulate this
suggests that dental problems are often undetected
and untreated in this group. These results are
supported by other studies which have found under-
diagnosis of common medical problems in people
with an intellectual disability (Martin et al. 1997).
This indicates a need to raise awareness of oral
health problems, and to ensure that oral screening
checks are easily available and that there is easy
access to a dentist when there is a suspicion that a
client may be in pain.
It was notable that the appearance of the teeth
took on particular significance in the present study
because of issues of social acceptability. A significant
proportion of the people with an intellectual
disability were very aware of how they looked and
how other people perceived them. Many carers were
also conscious of the way people with an intellectual
disability are perceived by the general public and
eager to remove any additional barriers to
acceptance. In this respect, `nice clean teeth' were
mentioned alongside things like fashionable and
clean clothes, hair, and good general personal
hygiene.
The present results suggest two main ways in
which carers played a central role in the day-to-day
lives of most people in the study. The `gatekeeper
role' included being a point of contact with the
client and making decisions on their behalf,
 Journal of Intellectual Disability Research
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S. Cumella et al . Oral care needs
including whether the client would be involved in
the survey and which dentist s/he used. The
`supporting role' involved help with tooth-brushing
and making visits to the dentist. The finding that
few carers had received any training on oral care
suggests an unmet need, and most said they would
welcome training on use of dental services and
practical ways of supporting clients who have
problems tolerating tooth-brushing. The finding that
carers were very often instrumental in whether their
clients went to the dentist or not concurs with the
results from the Access to Health study (Band
1997).
Therefore, the oral health of many people with an
intellectual disability depends largely on their carer's
knowledge, attitudes and practices about looking
after teeth and going to the dentist. Many carers
were very positive about this, but negative aspects
also came up. Some carers expressed dislikes about
tooth-brushing and fears about dental visits, which
could have made them reluctant to deal with the
dental needs of their clients or support them about
going to the dentist. Also, the strong views expressed
in one organization about normalization effectively
resulted in clients being denied the choice of
whether to take part in a survey about their health.
Therefore, there is a need for dentists and carers to
develop shared approaches to these issues (Davies &
Whittle 1990).
The level of use of dentists was similar to other
studies and people interviewed in the present survey
had not found it difficult to access a dentist despite
recent reductions in the availability of NHS dental
care. However, the finding that subjects and their
carers were unaware of the CDS and confused about
its role suggests that the CDS should review its
name and provide more information about its work,
particularly through GPs, who usually provided the
first point of contact for most subjects.
The need expressed for subjects to have a good
relationship with their dentist concurs with other
research on clients' expectations of dentists (Finch
et al. 1988; Ransford 1990). For such a relationship
to develop, a combination of the dentist's personal
skills, attitude and time were found important. The
key personal skills included the ability to
communicate with people with an intellectual
disability and having a full awareness of the special
needs of this group. The key attitudes identified
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VOLUME 44 PART 1 FEBRUARY 2000
were valuing someone with an intellectual disability
as a human being and being willing to work with
them. Time and continuity with the same staff were
needed to give to build a relationship. Therefore,
these results indicate significant training issues for
dentists in the areas of total communication and
disability awareness.
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