RESEARCH

IN BRIEF

The study revealed substantial problems in oral healthcare of people with mild learning disability
after their resettlement into the community.
Change from institutional living to community-based housing for such a group of adults with
learning disability may be associated with changes in dental attendance and treatment patterns.
In the community, people with such disability were less likely to receive regular dental
examinations and operative dental treatment.
Daily oral hygiene regimes were generally of a satisfactory frequency but only 37% of the clients
and/or their carers had received any oral health education from dental professionals while living
in the community.

Oral healthcare of clients with learning

disability: changes following relocation from
hospital to community
M. Stanfield,1,2 C. Scully,3 M. F. Davison4 and S. Porter5
Objective To investigate changes in the oral healthcare of adults with
learning disability after transference from long stay hospital care to
community-based care.
Subjects Adults with learning disability who were former residents of a
single long stay hospital and who had been resettled into the
community during the period April1995 to April 1998.
Design Structured questionnaire with a covering letter sent to
community-based carers. Hospital notes were reviewed to assess oral
healthcare received as in-patients.
Results There was a 68% response rate to the questionnaire from
community-based carers with details obtained from 106 out of a
possible 157 subjects. As residents in the hospital, all subjects were
examined regularly by a dentist yearly for edentulous and six-monthly
for dentate individuals. However, attendance patterns were less regular
as residents in the community. In the community, individuals were also
less likely to receive operative dental treatment. Although oral hygiene
regimes were generally on a daily basis only 37% of the subjects and/or
their carers had received oral health education from dental professionals
in the community.
Conclusion Changes from institutional living to community-based
housing for adults with learning disability may be associated with
changes in dental attendance and treatment patterns.

Despite having a similar caries experience as otherwise healthy

adults, people with learning disabilities often have more untreated
carious lesions, poorer oral hygiene and a higher number of missing to filled teeth than the general population.14 People who also
have a concomitant physical disability are more likely to have
poorer oral hygiene than those without such disability.56 Individuals with mild learning disabilities may have better oral hygiene
and less periodontal disease in comparison with individuals whose
1Research Student, 3*Professor, 4Nurse, 5Professor, Eastman Dental Institute for Oral

Health Care Sciences, UCL, University of London, 256 Grays Inn Road, London WC1X 8LD;
2Senior Dental Officer (Special Care), Northern Lincolnshire and Goole Hospitals NHS Trust

*Correspondence to: Professor Crispian Scully, Eastman Dental Institute for Oral Health
Care Sciences, University College, University of London, 256 Grays Inn Road, London
WC1X 8LD
Email: dean@eastman.ucl.ac.uk
Refereed Paper
Received 22.10.01; Accepted 5.11.02
British Dental Journal 2003; 194: 271277
BRITISH DENTAL JOURNAL VOLUME 194 NO. 5 MARCH 8 2003

disabilities are more severe.2,6,7 In addition people with mild learning disability are more likely to receive restorative dental care
rather than dental extractions compared with those individuals
with profound learning disability.2
Adults with learning disability resident in institutions can have
lower caries levels than those living in community-based or private housing4 despite the former group having poorer oral hygiene
and more periodontal disease4 and significantly poorer oral
hygiene than age-matched individuals who are non-institutionalised.8
In the United Kingdom in the past two decades, many patients
with learning disability have been relocated from long-stay hospital residence into the community, to allow such individuals to live
in more normal and less rigidly institutionalised surroundings.
There have, however, been concerns regarding the subsequent
degree of access to community-based services, including healthcare facilities.9,10 For, example, in one study 106 of 191 adults with
learning disabilities who had been living in the community were
examined and found to have at least one unattended but treatable
medical condition.11
Little is known of the effects of community-based living upon
oral health and the availability of dental services for those people
who have left long-stay institutions. Hence the present study has
examined the changes in oral healthcare of a substantial group of
adult people with learning disability after transference from longstay hospital care to community-based care.

MATERIALS AND METHODS

The study group comprised 106 adults with mild learning disabilities living in community-based residential homes but who had
previously lived in a single long-stay hospital, which served
clients from North London and the surrounding Home Counties.
The names and addresses of these former long stay residents of the
hospital who had been resettled into community-based housing
during the period of April 1995 to April 1998 were obtained from
the Resettlement Office. Local ethical approval had been obtained.
Carers in the community were asked to complete a questionnaire
(Figs 1a,1b,1c), formulated to determine the level of oral healthcare
received by these individuals since their move into the community.
The questionnaire was made up of 16 questions designed to evaluate the details of any dental treatment received together with
aspects of oral health behaviour such as oral hygiene regimes.
271

RESEARCH

Figure 1a Page 1 of the questionnaire sent to community-based carers

1.

How long has your client been living under your care?

2.

Since living under your care how many times

has your client seen a dentist?

3.

When was your client last seen by a dentist?

What were the reasons for the last dental visit?

Check up
Toothache/emergency
Problems with dentures
Treatment
Others (please specify)

5.

Who requested the visit?

You
Client
Client's family/friends
Dentist
Others (please specify)

6.

What types of treatment did your client receive

during the last course of dental treatment?

Examination
Cleaning of teeth
Filling (s)
Extraction (s)
Denture treatment
Others (please specify)

7.

Where was the treatment carried out?

In a local dental surgery

In a dental surgery within a health centre
At home
In an oral surgery unit within a local hospital
In a dental hospital
Others (please specify)

8.

How was this treatment carried out?

Without the need for anaesthesia

Using local anaesthesia
Using sedation
(eg injection into a vein or gas via the nose)
Using general anaesthesia

The questionnaires were mailed together with a letter to the

managers/senior carers of the community residential homes
explaining the aims of the study. A stamped, self-addressed envelope was included for easy return of the completed questionnaires.
Follow-up questionnaires were posted to non-respondents a
month after the initial mailing.
The data was coded and analysed using the statistical package
SPSS.

RESULTS
During the period April 1995 until April 1998, 217 clients from
the hospital had been resettled into the community. Of these, 49
had died, returned to the hospital or had moved from their original resettlement address so that their whereabouts were
unknown. In addition a further 11 people had only been living
in the community for less than 6 months. Thus the final intended study group comprised 157 former hospital residents who
had been living in community-based housing for at least 6
months.
After the first mailing, 90 questionnaires were returned,
increasing to 106 with the follow-up mailing, a good final
response rate of 68%. Of these responses concerning 106 individu272

als, 56 (53%) were males and 50 (47%) females, ages ranging 27 to

90 years with a mean of 53.3 years. The duration of their residencies at the hospital had ranged from 5 to 65 years with a mean of
36 years.

Oral healthcare received at the hospital and dental health status

prior to community resettlement
Retrospective review of the dental care provided to the 106 clients
while resident in hospital revealed that all had been regularly
examined by the attending dentist, dentate individuals having had
clinical reviews at least at six monthly intervals, edentulous
patients receiving oral examinations at least annually (Table 1).
Table 1 Summary of dental treatment received by the 106 subjects during
their residency at the hospital (Total n = 106)
Types of dental treatment

Number (% of group)

Regular hygiene visits

Restorative treatment using LA*
Extractions using LA*
Prosthetic treatment
General anaesthesia

74
34
37
16
73

(70)
(32)
(35)
(15)
(69)

*LA = local analgesia

BRITISH DENTAL JOURNAL VOLUME 194 NO. 5 MARCH 8 2003

RESEARCH

Figure 1b Page 2 of the questionnaire sent to community-based carers

No need
At the request of family or friends
Difficulty in finding an NHS dentist
willing to care for your client
Client's fears and anxieties about
dental treatment
Transport difficulties
The local dental surgeries have poor
physical access (eg steps)
Concerns about obtaining consent
from your client for dental treatment
Client's ill health
Others (please specify)

9.

If your client has not seen a dentist in the

past year or more, what were the
reasons for this?

10.

Who brushes your client's teeth?

11.

How often are your client's teeth brushed?

12.

What toothpaste is typically used?

13.

Are any of the following used to keep

your client's teeth clean?

Dental floss
Mouth washes (please specify which type)
Fluoride supplements

14.

Has your client and/or staff received any

advice on oral health (eg diet counselling,
toothbrush techniques)?

Yes
No

If so what has this involved and who

was responsible for the advice given?

15.

Does your client wear dentures?

Yes
No

What type of dentures are these?

Full (replacing all teeth)

Partial (replacing some teeth)

How are these dentures cleaned?

16.

Has your client any current problems

with his/her mouth?

Yes
No

Please specify
Are these problems being dealt with
by a dentist?

The details of the last course of dental treatment received by

the 106 residents of the hospital are summarised in Table 2. One
hundred and three (97%) had been deemed to be dentally fit
before leaving long-term hospital care. This was defined as no
detectable carious lesions, no spontaneous gingival bleeding
and no mucosal disease on clinical examination in the dental
chair with standard lighting. One person had active caries present and two required extractions of teeth that were loose
because of chronic periodontitis; these individuals left the hospital with these dental problems unresolved.

Dental care received in the community

The 106 subjects were all resettled between April 1995 and April
1998. In the 12 months prior to the completion of the questionnaires by the carers, significantly fewer (P < 0.05) patients (82,
BRITISH DENTAL JOURNAL VOLUME 194 NO. 5 MARCH 8 2003

Yes
No

77%) had been examined by a dentist whilst in the community,

compared with a similar period of hospital residency. FurtherTable 2 Dental treatment received at the dental unit in the hospital prior
to resettlement into the community (Total n = 106)
Dental treatment

Examination
Professional cleaning
Restorative treatment with LA*
Extractions with LA*
Prosthetics
General anaesthesia
Sedation
*LA = local analgesia

Number (% of group)

106
66
19
16
4
3
1

(100)
(62)
(17)
(15)
(4)
(3)
(1)

273

RESEARCH

Figure 1c Page 3 of the questionnaire sent to community-based carers

Good
effect

No
effect

Bad
effect

a) What effect does your client's oral health have on their eating or enjoyment of food?

b) What effect does your client's oral health have on their appearance?

c) What effect does your client's oral health have on their speech?

d) What effect does your client's oral health have on their general health or
general well being?

e) What effect does your client's oral health have on their sleep or ability to relax?

f) What effect does your client's oral health have on their social life?

g) What effect does your client's oral health have on their romantic relationships?

h) What effect does your client's oral health have on their smiling or laughing?

i) What effect does your client oral health have on their confidence (lack of embarrassment)?

j) What effect does your client's oral health have on their carefree manner (lack of worry)?

k) What effect does your client's oral health have on their mood or happiness?

l) What effect does your client's oral health have on their work or ability to do usual jobs?

m) What effect does your client's oral health have on their finances?

n) What effect does your client's oral health have on their personality?

o) What effect does your client's oral health have on their comfort (lack of pain/discomfort)

p) What effect does your client's oral health have on their breath?

more, within the 6 months previous to the date of completion of

the questionnaire only 60 of the 106 patients (57%) had been
examined by a dentist in the community in contrast to the 77
(73%) individuals who had received a dental examination within
their past 6 months of residency at the hospital (P < 0.05).
Once living in the community 31 clients (29%) had been seen by
a dentist at home, 23 (26%) in a health centre-based dental surgery, 20 (22%) in a general dental practice, 12 (14%) in a district
general hospital, 2 (2%) in a dental hospital and 1 (1%) in a day
centre.
At their most recent dental visit, 69 (65%) were seen initially for
routine dental examinations, 10 (9%) for continuation of operative
treatment, 6 (6%) because of dental pain, and 4 (4%) had reported
denture problems. Most appointments were at the request of carers
(63, 60%) with only 5 (5%) of the people with learning disability
themselves requesting dental care. Twenty-one (20%) people had
274

received appointments at the request of the dentist. A summary of

the dental care received by the patients at their last course of dental treatment in the community is shown in Table 3.
Table 3 Summary of the last course of dental treatment while resident in
the community (Total n = 106)
Dental treatment

Examination
Professional cleaning
Restoration using LA*
Extractions using LA*
Prosthetics
General anaesthesia
Sedation
*LA = local analgesia

Number (% of group)

89 (84)
35 (33)
9 (8)
10 (9)
3 (3)
7 (7)
4 (4)

BRITISH DENTAL JOURNAL VOLUME 194 NO. 5 MARCH 8 2003

RESEARCH
While living in the community 52 (49%) individuals had
received some form of operative dental care (including scaling)
during their last course of dental treatment, while when the
same individuals were living at hospital, 72 (68%) had operative treatment in their last course of care (P < 0.01). In particular, only 35 (33%) people had their teeth professionally cleaned
in the community compared with 66 (62%) in the hospital
(P < 0.01).
Despite having lived in the community for at least a year, 17
(16%) people had received no dental examination since resettlement. A further seven patients who had received a dental
examination in the community had not been re-examined by a
dentist for more than a further year. Thus a total of 24 (23%)
people had received no dental examination in the previous 12
months or more whilst living in the community. The perceived
reasons for these findings, as reported by the care staff comprised no need (5 patients, 5%), few or no teeth (11, 10%),
patient anxiety/fear (6, 6%) and lack of patient co-operation
(2, 2%), as shown in Table 4.

Oral health behaviour

As detailed in Table 5 just over half of the 70 dentate people
(37, 53%) relied upon the care staff to undertake the cleaning
of their teeth, 25 (36%) cleaned their own teeth, and 8 (11%)
shared the responsibility with care staff. All but one cleaned or
had their teeth cleaned on an at least once-daily basis. Over
90% of the patients were using adult fluoride toothpaste; the
remainder used chlorhexidine gel (3), childrens toothpaste (1)
or a non-fluoride based toothpaste (3).
The carers reported that 32 (30%) of their clients were using
mouthwashes on a regular basis, including 4 patients who were
edentulous, although few reported any specific type. Also 6 (6%)
dentate individuals used fluoride supplements regularly. No
client undertook or received interdental cleaning.
Only 39 (37%) subjects and/or their carers had received some
oral health education from dental professionals.
Denture wearing
According to their carers, only 6 (6%) of people wore dentures;
2 wore partial dentures and 4 full dentures. However, at the hospital, 16 (15%) of them had been provided with dentures.
Current oral and dental problems
According to the carers, 15 (14%) individuals had oral health
problems (Table 6). Seven (7%) were reported to have bleeding
gums, 2 (2%) halitosis, 2 (2%) mouth ulcers and 1 (1%) patient
each was reported to have problems related to dentures, broken
teeth, mobile teeth and frequent regurgitation of gastric contents into the mouth.
DISCUSSION
This study has shown that a change from institutional living to
community-based housing for a group of adults with learning
disability is associated with changes in dental attendance and
treatment patterns. In particular, in the community, adults with
learning disability (who were now living in a variety of settings)
were less likely to receive regular dental examinations and operative dental treatment than they previously received when in
long-term hospital residency. In addition although the daily oral
hygiene regimes were generally satisfactory, only 37% of the
clients and/or their carers had received any oral health education
from dental professionals while living in the community. This
was not a problem that related to only a limited number of community residences.
The high response rate of the present survey (68%), compares
favourably with those of other similar studies of healthcare proviBRITISH DENTAL JOURNAL VOLUME 194 NO. 5 MARCH 8 2003

sion of people with learning disabilities,1214 thus suggesting that

the trends observed in this study are real.
It is known that the medical care of people with learning disabilities resident in the community may not be optimal.15 Such
individuals may have undiagnosed systemic disease,9,11 be
infrequently reviewed by their general medical practitioners9
and possibly be prescribed inappropriate medication.9 One US
study even found that the mortality rates of individuals with
developmental disabilities increased following transfer from
state hospital institutions to community care.16
Nevertheless people with disabilities do benefit when being
transferred from long-stay hospitals to the community. There can
be a substantial improvement in quality of life with respect to
living environment and leisure following resettlement in the
community.17 Individuals can be less depressed, happier and
more independent following transfer.18 It is thus evident that
while appropriate medical or dental care may not always be recommended or forthcoming, many individuals do enjoy overall
greater benefits in living in the community than a long-stay hospital.
A number of barriers to receiving dental care for these groups
is well recognised. Access to routine dental care will clearly
influence the oral health of community-based patients with
learning disabilities. Other barriers include some dentists
unwillingness to care for such individuals due to behavioural
problems,12,18,19 financial disincentives,18,2022 limited physical
access to dental surgeries 20,23,24 and (supposed) inadequate
equipment.12,18,21 Recently, Gordon and co-workers25 raised the
issue of the clients fear and anxiety as a major barrier for adults
with learning disability receiving dental care.
A potentially significant problem with regard to the provision of dental care for people with learning disability is an
actual or perceived lack of relevant experience and knowledge
on behalf of the clinician.18,2022 Russell and Kinirons26 surveyed community dental officers in Northern Ireland and
demonstrated that, even among these dentists, lack of experience and knowledge were common reasons given by them for
not offering comprehensive dental care for special needs
patients including those with learning disability. A survey by
Bickley27 investigating dental hygienists attitudes towards
treating people with learning disability demonstrated that
73.5% of the respondents considered their basic training to be
inadequate for such work.
Although other studies have investigated the provision of
community-based dental care for adults with learning disabilities 12,14,28,29 none have directly examined access to, and quality of, dental care provided in long-term hospital care compared
with that in the community. The results of the present study
reveal that such clients may not receive as frequent oral examinations when resident in the community as they did when they
were in long-stay hospital residency. The principal reason for
this would seem to reflect the opinions of the attending carers,
although a small number of patients may have been reluctant
to attend a general dental practitioner despite previously
receiving dental care whilst in hospital. It is already known that
only about 60% to 70% of people with learning disability will
be regularly examined by a dentist.29,30 It is, however, concernTable 4 Reasons for lack of dental attendance in the preceding 12 months
of residence in the community (Total n = 106)
Carer perceived reason

No need
Client edentulous/has few teeth
Patient's fears/anxieties
Patient unco-operative

Number (% of group)

5 (5)
11 (10)
6 (6)
2 (2)

275

RESEARCH

Table 5 Person responsible for daily cleaning of the dentate client's teeth
residing in the community (Total n = 70*)
Responsible person

Care staff
Patient
Patient with help from staff
*Only 70 of the 106 patients were fully or partially dentate

Number (% of group)

37 (53)
25 (36)
8 (11)

Table 6 Summary of the carer-reported current oral health problems

(Total n = 106)
Current carer-reported oral health problems

Bleeding gums
Bad breath
Mouth ulcers
Problems with denture
Broken teeth
Loose teeth
Acid regurgitation from stomach

Number (% of group)

7
2
2
1
1
1
1

(7)
(2)
(2)
(1)
(1)
(1)
(1)

ing that 24% of the present group of patients had not received a
dental examination within the previous year of communitybased living, despite knowledge that they might have been able
to cope with a dental examination, as they had all had dental
care when hospitalised. There is controversy as to the recommended frequency of dental examinations, but at least one
expert has recommended annual examination31 and there is no
reason to suggest it should be carried out less frequently in a
group of individuals who are acknowledged to suffer from dental disease more than the general population.
In the present study the most common reason for an individual not receiving dental care while living in the community possibly reflected a lack of perceived need on behalf of the carers,
particularly if their client had few or no teeth. This observation
tallies with those of other similar studies that indicate that care
staff often do not appreciate the importance of oral health19,32
and/or are unaware of the oral healthcare needs of their
clients.18 In agreement with studies of patients with learning
disabilities resident in the community in the UK14 and Australia29 the present group of patients received dental care from a
general dental practitioner or professional staff of the community dental service, although it is unclear if the choice of dental
clinician reflected the opinions of the carer, degree of physical
disability2,30 or the access or facilities of the clinic. While the
majority of the present group of clients were managed in a clinic, 35% were treated in their homes. The precise reasons for this
high rate of home-based examinations is not evident, but may
reflect patient physical disability and/or limited co-operation,
limited physical access to dental surgeries 20,23,24 or remuneration. However, in contrast to previous relevant studies, as the
majority of patients did at least receive a dental examination it
seems likely that dentists were willing to provide at least some
care for such people.8,12,33
Unsurprisingly the type of treatment provided was influenced
by location. Operative treatments such as scaling, restorations
and extractions were fairly equally prescribed to patients attending local dental surgeries and the health centres. In contrast only
oral examinations and scaling were prescribed to patients during
home visits, although one subject did receive prosthetic treatment
at home. Two people each received sedation in hospital or a health
centre clinic. All general anaesthesia was undertaken in hospital
except for one patient who was treated in a local dental surgery.
276

Of concern, however, was the significant change in the type

of dental care provided to the individuals when they transferred
from the hospital to the community. They received significantly
less operative dental care in the community compared with their
care as inpatients. Compared with hospital residency, oral
hygiene care in the community was much less likely to involve
professional oral cleaning and was almost wholly reliant upon
carers. In particular 62% of the individuals had had their teeth
professionally cleaned at their last dental attendance in the hospital compared with 35 (33%) when living in the community.
Nevertheless, as perhaps required,13 about 64% did receive
assistance with their tooth cleaning by carers. But it is known
that carer knowledge of oral hygiene measures influences the
degree of appropriate oral care provided to their clients34 hence
the poorer oral hygiene care provided to the present group of
clients might reflect lack of relevant knowledge by the carers,
and may account for some of the gingival bleeding and/or oral
malodour reported by the carers.
The poorer oral care being provided in the community compared with the hospital is perhaps further suggested by the fall in
the frequency of restorative procedures and dental extractions carried out under local anaesthesia when they were transferred to the
community. If the oral hygiene care is genuinely worsened in the
community (and access to confectionary possibly higher) it might
be expected that clients would require more restorative care under
local analgesia.
While not statistically significant, the increased frequency
of dental treatment requiring general anaesthesia or sedation in
the community-based than hospital based dental care, does
raise the possibility that community-based dentists in this
locality may have wished to employ general anaesthesia as
opposed to local analgesia to circumvent any real or perceived
behavioural difficulties. Clearly some clients resident in the
community did have, although generally minor, oral problems.
Nevertheless, despite being known to the carer, appropriate
treatment was not being sought, and at least with respect to the
gingival bleeding and oral malodour, may have been secondary
to variable oral hygiene care, possibly being provided by the
carers. Of note, six clients still had minor oral problems, despite
them attending a dentist.
This study has shown that a change from institutional living to
community-based housing for a group of adults with learning
disability may be associated with changes in dental attendance
and treatment patterns. In particular, in the community they were
less likely to receive regular dental examinations and operative
dental treatment. It is of course possible that there was a degree of
overprescribing in the hospital setting. In addition although the
daily oral hygiene regimes were generally of a satisfactory frequency only 37% of the clients and/or their carers had received
any oral health education from dental professionals while living
in the community. The limitations of this study include the fact
that the records during the hospital stay were retrospectively
examined, and no dental examination was possible in the community. The study related to one particular group of individuals
only and the results might not apply to the thousands of other
patients resettled in the community. Further work clearly needs to
be done to confirm or refute these worrying findings.
In developing dental services for people with learning disabilities issues of access to care must be addressed. This may mean that
discharge protocols should be established in long-stay hospitals to
ensure seamless care into the community; that carers should be
trained in oral health needs and care; and that oral health needs
should feature clearly in the individuals healthcare plan. Clearly,
the dental team should be pro-active in their out-reach to such
individuals and ensure that carers are offered suitable training to
improve their perception of the oral healthcare for their clients.
BRITISH DENTAL JOURNAL VOLUME 194 NO. 5 MARCH 8 2003

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