Introduction

Special care dentistry (SCD) was defined in 2003 by the British Society for Disability and Oral Health as:

That branch of Dentistry, which provides preventive and treatment oral care services for people who are unable to accept routine dental care because of some physical, intellectual, medical, emotional, sensory, mental or social impairment, or a combination of these factors. Special Care Dentistry is concerned with the improvement of oral health of individuals and groups in society who fall within these categories. It requires a holistic approach that is specialist led to meet the complex requirements of people with impairments.

SCD refers only to the treatment of adolescents and adults: children with special needs are the remit of paediatric dentistry

A wide range of patients with complex needs defines the speciality. The patterns of oral disease are similar to those of the general population, but people with special needs are less likely to receive restorative care and more likely to have extractions.

Practitioners will meet many patients with special needs who do not require referral to specialist services. Indeed, there are positive advantages for people with special needs to be treated in primary care with other members of their family close to home. The establishment of the speciality of Special Care Dentistry in 2008 lead to concerns that this may make primary care practitioners less likely to treat those with learning disabilities and encourage them to refer rather than treat. Such concerns were ill‐founded. The aim of this chapter is to encourage the dental team to provide care for this group, who may be challenging but are also rewarding to treat.

The philosophy of SCD is to treat patients as individuals and to view them holistically; dental problems may be only a small part of person’s healthcare needs. It may be necessary to work with a team of healthcare professionals to provide basic dental care. This can include medical and social care providers.

It is estimated that there are presently between 8.6 and 10.8 million people in the UK with a disability. With an ageing population, more of us will be affected by a disability or be caring for someone with an impairment. The Disability Partnership estimates this as ‘one in four of us’.

Definition

The World Health Organization (WHO) International classification of impairments, disabilities and handicaps defines impairment and disability as follows:

Any temporary or permanent loss or abnormality of a body structure or function, whether physiological or psychological. An impairment is a disturbance affecting functions that are essentially mental (memory, consciousness) or sensory, internal organs (heart, kidney), the head, the trunk or the limbs.

An alternative definition is: a restriction or inability to perform an activity in the manner or within the range considered normal for a human being, mostly resulting from impairment.

Access to Care

Access is often thought to be about just physical barriers, but should be considered in a wider perspective to include the attitudes of the dental team, communication difficulties and the health beliefs of the patient. Physical barriers and ways to overcome them are considered later in this chapter.

Attitudes

Attitudes of the dental team can be difficult to overcome. It has been shown that undergraduates who have experience with people with learning disabilities are more likely to feel comfortable treating them after graduation. Students who receive teaching in SCD can find it enjoyable, adding an extra dimension to their dental studies, allowing them to see patients as people not just a mouth. Teaching in SCD is also required for dental care professionals, allowing them to be more involved in providing oral health. Attitudes of the patient can be deeply held: they may have had bad experiences as a child or been made to feel unwelcome by previous dentists.

Assessment

In addition to the usual dental assessment considerations, the following factors are important for someone who requires SCD:

• Environment: dental surgeries can be intimidating for anxious patients. It may be better to take an initial history in the waiting room or in an office. For some patients, it may be easier to speak to the carers before attempting a dental examination. Alternatively, for someone with challenging behaviour, carry out an examination first, then allow the patient to leave. A history can then be taken and care planned with parents/carers without distractions.
• Technique: everyday techniques may be impossible to apply due to anxiety, challenging behaviour or physical impairment. Sometimes a toothbrush can be used rather than a mirror. Clinical holding may help to get a better look but sometimes a full examination and treatment planning can only take place under sedation or general anaesthesia.
• Radiographs: it may not be possible to gain cooperation for intraoral radiographs. Extraoral films such as lateral oblique views may be easier to obtain.
• Medical history: the medical history of patients requiring SCD may be complex. It may be helpful to provide a medical history form to be completed in advance. It can be useful to request that a list of medications is brought to appointments
• Other healthcare providers: it is important to find out about others involved in the patient’s care and to liaise with them for clarification regarding aspects of the medical history. As dentists, we rely on the information given to us by our patients. Some people may be reluctant to disclose information, either due to embarrassment, or just because they do not see the relevance to dentistry.
• Attendance at other clinics or hospitals: if the patient has a complex medical history, probably they will attend multiple clinics in different hospitals. For example, renal dialysis may involve attendance on 3 or 4 days a week, limiting the options for dental appointments.
• Method of transport: it is important to find out how the patient travels to appointments. Hospital transport is notoriously unreliable, with patients arriving too early or too late. Relying on others for lifts can limit when patients can attend and using taxis can be expensive for frequent visits.
• Best time to attend: some patients prefer dental care in the morning, others in the afternoon. Patients may be reluctant to attend for dental care if they attend a day centre.
• Other investigations: it may be possible to combine dental care with other medical procedures, for example blood tests or hearing investigations.
• Length of appointments: some patients cope better with short appointments, perhaps because they have difficult in remaining still or keeping their mouth open for more than a short period. Others prefer longer appointments, and attend for fewer visits, if they have long distances to travel. It is important to discuss this at the assessment.
• Carers: if a patient attends with a carer, find out who they are and how well they know their client. Paid carers may have a close relationship, or have never met their client before. People with learning disabilities often will have a key worker and their contact details are useful for making appointments and organising consent.

Assessing special care patients can bring challenges. It is important for the dental team to be flexible and respond to the needs of individuals (patient‐centred assessment).

Oral Health Promotion

Special care patients with physical and visual impairment may need additional support for oral hygiene procedures.

Prevention

Prevention is the key to good oral health. This can be achieved most effectively with a team approach involving the patient, dentist, the dental care professional and if appropriate, the carer

Recall

This should be individually tailored. The risk of developing oral diseases should be assessed. Consideration should be given to:

• The patient’s medical treatment and medications, some of which may cause xerostomia or gingival hyperplasia.
• The patient’s ability to maintain oral health.
• The use of fluoride supplements and oral hygiene aids.
• The patient’s diet and any parafunctional activities.

Individual factors such as saliva quality and quantity have an impact on the oral health of SCD patients.

Diet

The dental team should encourage SCD patients to fill out a diet sheet, recording what they eat and drink daily. This allows analysis of the time, amount and frequency of sugar intake. Some patients are prescribed high calorie energy drinks. For example, older patients with weight loss, patients with involuntary movement, and head and neck oncology patients might be prescribed such drinks to gain or maintain weight. A multidisciplinary approach involving the dietician can be beneficial to the patient. SCD patients, in common with all patients, should be advised to limit sugar intake to meal times.

Aids

• Toothpaste: the minimum recommended fluoride content of toothpaste for adults is 1450 ppm. The 2800 ppm and 5 000 ppm fluoride toothpastes can be prescribed for SCD patients at high risk of developing caries.
• Toothbrushes: toothbrushes may need to be modified, depending on the patient’s impairment. Power toothbrushes may be advantageous for patients with reduced dexterity and may be preferred by carers.
• Interdental brushes: SCD patients and carers may find interdental brushes and dental floss difficult to use, but they should be recommended wherever practical.
• Fluoride rinses: it is recommended that fluoride rinses should be alcohol free. Rinses can be prescribed daily (0.05–0.10%) or weekly (0.2%), according to individual needs and cooperation. Some patients with oromotor function or dysphagia may be unable to rinse.
• Fluoride varnish (2.26%) can be applied at each recall.
• Fluoride gel (0.4% stannous fluoride) may be a useful alternative to fluoride varnish.
• Chlorhexidine solution: patients with poor plaque control may benefit from the prescription of 0.2% chlorhexidine solution which may be applied, possibly daily, by swabbing, rinsing or brushing. This may be useful for patients who are unable to expectorate. The disadvantages include bitter taste, alteration of taste and staining of teeth.
• Disclosing tablet or solution: disclosing tablets may help both patients and carers to improve plaque removal.
• Finger shields or mouth props for carers.

Impairment

Worldwide there are around 650 million disabled adults.

• Of the people with a physical impairment, approximately 65 million are wheelchair users. Others have upper and lower limb impairment, altered manual dexterity or require the use of walking aids. Arthritis is one the most common acquired causes of physical impairment, affecting a staggering 8 million people in the UK alone.
• Visual impairment affects 314 million people, of whom 45 million are blind.
• Two hundred and seventy‐eight million people have moderate to profound hearing loss in both ears.
• Statistics on deafblind people are difficult to access worldwide. In the European Union, the deafblind population is estimated at 150 000.

Management

Good preparation allows for a smooth‐running clinic and can alleviate anxiety both for the patients and the dental team. Prior to the dental appointment:

• It is good practice to ask the individual or carer what their preferred method of communication is. Avoid jargon and allow sufficient time for communication.
• Ask the patients about their impairment and ways to improve their access to the surgery, which should comply with disability and health and safety regulations.
• Some people may require domiciliary dental care (see domiciliary section). Treatment in the primary setting is the ideal, but domiciliary care or referral to a secondary or tertiary setting might be necessary.
• Ensure clear access all the way to the surgery. This is important for the safety of the patients who use walking sticks and wheelchairs.
• Only staff trained in manual handling should assist patient transfer to the dental chair. Injuries can easily happen to staff and patients if you are not familiar with handling patients
• Patient handling aids may be necessary:
  • Cushions for posture support.
  • Patient transfer boards and turntables.
  • A hoist.
• Other useful equipment:
  • Wheelchair recliner for wheelchair users who cannot be transferred to the dental chair.
  • Break leg chair: this makes it easier for the patient to transfer from a wheelchair to a dental chair and easier for those who use walking aids
  • Bariatric chair: this can carry people <700 kg in weight. The normal break leg chair can carry a maximum weight of 250 kg.
• Before reclining the patient, their medical history must be considered. There may be breathing issues, spinal problems or a risk of aspiration so they may not be able to be treated in a supine position. Ask the patient if they can sleep flat as this would give an idea on how far to recline the chair.
• If the patient has involuntary movements caused by conditions such as cerebral palsy or dystonia, sedation may be required. This may be the safest option for the patients and the operator.

Visual Impairment

Partially sighted people are unable to tell how many fingers are being held up at 6 m or less, even with glasses. Blind people may have some degree of vision (residual vision) but are unable to tell how many fingers are being held up at 3 m or less, even with glasses. Prior to the dental appointment:

• Leave a voicemail to confirm appointment time. Ask the patient about their preferred method of communication.
• Consider what appointment time would be the most appropriate. A blind person with a guide dog might not wish to travel in the rush hour.

On the day of treatment:

• Offer to guide the patient by allowing them to take hold of your elbow. Some patients might prefer to be independent using a stick or other aid.
• Warn them if you are coming to any steps, tell them how many, and in which direction they run. This will help to reassure the patient, and reduced the risk of a stumble or falls.
• Be guide dog friendly. Ask the patient if they want the dog to come in to the surgery or to stay in the waiting room.
• Avoid bright backlighting as this interferes with residual vision.
• Information sheets should be in large print (font size >14). Ask the patient what font size they require.
• Some people might communicate via Braille and less commonly the Moon alphabet.

Hearing Impairment

There are four different levels of hearing impairment: mild, moderate, severe and profound. People with mild hearing impairment may have difficulty following speech, especially in noisy situations. If they have moderate hearing impairment, they will probably not be able to follow what you are saying without hearing aids. For people with severe hearing impairment and profound deafness, sign language is likely to be the preferred method of communication. Also, many people with hearing impairment can lip‐read effectively. Prior to the dental appointment:

• It is good practice to ask the individual or carer what their preferred method of communication is. Avoid jargon and allow sufficient time for communication, which might include teleprinter, textphone or minicom.
• Ascertain the need for a language service provider such as ‘Lipspeakers’ or sign language interpreter.
• Consider what appointment time would be the most appropriate. A profoundly deaf person with a hearing dog might not wish to travel in the rush hour.

On the day of treatment:

• Be hearing dog friendly. Ask the patient if they wish the dog to come in to the surgery or to stay in the waiting room.
• Have paper and pen available. This may be the preferred method of communication.
• Before commencing treatment inform the patient what the treatment will entail. The dental equipment might interfere with hearing aids and cause high‐pitched whistling. Therefore, the patient may wish to turn off hearing aids
• When discussing the treatment sit in the front of the patient and do not wear a mask or a visor. When treating the patient wear a visor only. This will make it easier for the patient to lip‐read.
• Minimise the background noise. For those with partial hearing this allows for clearer communication.
• Lower the pitch of your voice. Low tones can be heard more readily.
• Use gestures, for example thumbs up for asking if your patient is OK.
• If a sign language interpreter is present:
  • Ensure that you address the patient and not the interpreter.
  • Do not breach patient confidentiality.
  • Ask the patient’s permission to discuss medical history and treatment details.

Deafblindness

Deafblind people have a combined sight and hearing impairment to varying degrees and may carry a white and red cane. People who are deafblind may use different modes of communication such as a deafblind interpreter, the deafblind manual alphabet (for example Evans) and the block alphabet. Apply the procedures for individuals with hearing and visual impairment in the management of these patients.

Learning Disability

Learning disability is a significant impairment of intelligence and social functioning acquired in childhood. The World Health Organization defines learning disabilities as: ‘A state of arrested or incomplete development of mind’. Learning disability is a diagnosis, but it is not a disease, nor is it a physical or mental illness. It can be acquired or have a genetic or congenital cause. Learning disability affects as many as 2.5% of a population; there are likely to be 1.5–2 million people with a learning disability in the UK. Males are more likely to be affected than females.

There are three criteria which need to be met before learning disabilities can be identified:

• Intellectual impairment.
• Social or adaptive dysfunction.
• Early onset – identified from birth; not occurring later because of injury or disease.

One way of measuring learning disability is using IQ (intelligence quotient). The average IQ in the general population is 100.

50–70 mild learning disability:

• Able to communicate.
• Limited written and reading skills.
• Can manage own self‐care including toothbrushing.

35–50 moderate learning disability:

• Limited verbal communication.
• Unable to read or write.
• Needs assistance with self‐care.

20–35 severe learning disability:

• Uses gestures/single words to communicate.
• Depends on others for self‐care.

Below 20 profound learning disability:

• Dependent on others for all needs.

This assessment does not consider social functioning and the changes that can occur with maturity. It is important to assess the individual in their social context. For example, a person with a mild learning disability may be able to travel alone on public transport but if the train breaks down may not be able to find an alternative route home.

Causes of Learning Disability

Among people who have a mild learning disability, in 50% of cases no cause has been identified. In people with severe or profound learning disabilities, chromosomal abnormalities account for about 40% of cases, genetic factors account for 15% and acquired conditions a further 10%. Cases which are of unknown cause are fewer, but still high at around 25%.

Chromosomal and Genetic Causes

Fragile X Syndrome is the most common cause of inherited learning disability occurring in 1 in 4000 males and 1 in 6–8000 females. Boys are more severely affected and more likely to have significant learning disabilities than girls and a third of males are likely to be autistic.

Down’s Syndrome is caused by a genetic abnormality: most commonly trisomy of chromosome 21. It results in a characteristic appearance with associated medical problems. The most significant of these is cardiac abnormalities, which can require surgery early in childhood.

Velo‐Cardio‐Facial Syndrome affects an estimated 1 in 3000–4000 births with a population prevalence of 1:2000. It is caused by small part of chromosome 22 missing at the q11 region. As the name suggests it is associated with cleft palate, congenital heart disease and a characteristic facial appearance, in addition to intellectual impairment.

Acquired Causes

Foetal alcohol syndrome: consumption of alcohol by pregnant women causes damage to the developing baby. This can result in stunted growth, characteristic facial features and delayed cognitive development.

Rubella infection in the first trimester of pregnancy can damage the foetus causing problems including deafness or even death. If the baby survives, it is likely to have retinopathy, cardiac malformations and learning disability. The incidence of infection has fallen dramatically in the UK due to an extensive vaccination programme.

Management

Communication

This is perhaps the biggest challenge: on first meeting, it is difficult to determine how much the patient can understand. It is better to overestimate someone’s abilities than underestimate.

About 60% of people with learning disabilities have some skills in symbolic communication using pictures, signs or symbols. About 20% have no verbal communication skills but do demonstrate a willingness to communicate, expecting a response. For example, greet the patient with a smile – even if they are non‐verbal they will recognise welcoming body language. When taking a history from the parent/carer position yourself so you can maintain eye contact with the patient.

Communication Aids

Different people use different communication systems depending on the professional who has worked with them. Makaton, Signalong (signing and symbols use) and Widgit software (symbols for writing) are used by people with mild learning disabilities. People with more severe and complex needs may not be able to use any of the recognised means of communicating and will be dependent on others to interpret their needs and choices through observing and responding to their communicative behaviour.

Some health authorities have developed ‘hospital passports’ which are completed by the patient with their carers. This document sets out their likes, dislikes, preferred routines and communication method. The passports are probably more relevant to hospital admission but may provide some useful background information. For example, if the patient has a particular interest, this can be a starting point for conversation.

Associated Medical Conditions

• Epilepsy: this condition is more likely to occur in someone with a learning disability than in the general population. Its treatment and management are the same as in someone without a learning disability.
• Congenital heart disease: this is more common due to the association with Down’s Syndrome and Velo‐Cardio‐Facial Syndrome. In the past, corrective cardiac surgery was less likely to be carried out on a person with a learning disability. Although this is no longer the case, heart disease is still the second most common cause of mortality as it is in the general population.
• Respiratory disease: respiratory disease has a much higher incidence in people with a learning disability than in the general population. This may be due to feeding, breathing and swallowing difficulties, epilepsy regurgitation and gastroesophageal reflux.
• Cancer: the incidence of death from cancer amongst people with a learning disability is lower than the general population. It is increasing rapidly as people with a learning disability live longer.
• Sensory impairments: around one‐third of people with a learning disability experience visual impairment of vision and 40% have difficulties with hearing. Hearing problems may be due to impacted ear wax which can easily be treated and sight problems due to the difficulties in cooperating with sight tests.
• Mental health: reported rates of people with a learning disability who also have mental health problems vary widely, ranging from 10 to 39%, depending on the type of study and the methods used. Some conditions may be more prevalent than others in people with a learning disability, for example schizophrenia (between 1.3 and 3.7%), affective disorders (between 1.2 and 6%) and anxiety‐related neurotic disorders (around 16.4%). Mental health problems can be due to a combination of biological, psychological, developmental and social factors.

Consent

This is covered in more detail in Chapter 5. An important principle is that no adult can consent on behalf of another adult and the ability to consent should be presumed.

Autistic Spectrum Disorder

Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterised by:

• Social impairment.
• Verbal and non‐verbal language impairment.
• Repetitive/stereotyped activities.

Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form (known as Asperger Syndrome), childhood disintegrative disorder and pervasive developmental disorder. Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group. The estimated incidence is 6:1000. Males are four times more likely to have an ASD than females. Only 30% of affected individuals with have an associated learning disability but all will have difficulty interacting with people around them.

Management

Prior to the dental appointment:

• It can be helpful if the dental team contacts the family/carers to find out more about the patient and their likes and dislikes. It may be helpful for them to visit the surgery before the first appointment to familiarise themselves with the setting and staff when no treatment is planned.
• The first appointment of the day is best to reduce stress. It is important not to keep the patient waiting.
• Visual supports: the parent/carer might want to take photographs of the surgery and the dental team. This can be made into book so the person knows the stages of going to the dentist: what’s coming next and when they will end.

During treatment:

• Routine is important: ideally the person should be seen by the same staff at the same time in the same room.
• Reduce background noise as this can be distracting or sound very loud to the patient. Only one person should speak at a time and you must warn the patient before you touch them.
• Use direct language: people with autism have a literal understanding. For example, do not say ‘would you like to come into the surgery’: they may answer no. Use short sentences and simple language.
• Time indicators allow the patient to know that there is a time limit on treatment: visual or auditory timers (e.g. sand timers, buzzers, watch alarms) allow them to monitor the length of the experience.

Treatment Options

With time and patience, it may be possible to provide dental care under local anesthesia. More severely affected people will require sedation or general anesthesia.

Clinical Holding

Clinical holding is ‘the use of physical holds (clinical holding), to assist or support a patient to receive dental care or treatment in situations where their behaviour may limit the ability of the dental team to effectively deliver treatment, or where the patient’s behaviour may present a safety risk to themselves, members of the dental team or other accompanying persons’ (British Society for Disability and Oral Health, 2009).

• Clinical holding can be used in several circumstances if assessment or a course of treatment cannot be carried out effectively or safely because of the behaviour of the patient.
• Clinical holding may be necessary in managing patients with learning disabilities, autistic spectrum disorder, dementia, mental health, neurodegenerative disease, involuntary movements and brain injuries.
• Clinical holding has been shown to allow the safe use of local anaesthetics and conscious sedation rather than resorting to general anaesthesia to carry out dental treatment for some patients.
• Clinical holding is not designed to enforce dental treatment but to aid it in certain circumstances.
• Clinical holding should be used as infrequently as possible; it should always be in the best interests of the patient.
• All members of the dental team should be trained in the effective and safe delivery of clinical holding.

Clinical holding should be discontinued:

• When the patient withdraws consent unless this would endanger them or others.
• In circumstances where patients show extreme distress and when a hold is causing pain or discomfort.
• In cases of respiratory or circulatory compromise, vomiting and seizures.

If the use of clinical holding is required, then:

• The method should be appropriate to the age, size, physical condition and sex of the patient.
• The minimum amount of force should be applied, for the shortest possible duration.
• Adequate numbers of trained and experienced staff should be present.
• No restrictive measures involving neck compression should be used.
• The patient’s airway and head should be protected from obstruction and/or injury.

Consent

• A person with capacity to consent may require clinical holding to allow for safe and effective dental treatment. The process must be discussed in full. The patient has the right to withdraw their consent to clinical holding at any time.
• When an individual lacks the capacity to consent, clinical holding can be used if it is felt to be in the best interests of the patient and the least restrictive and detrimental course of action. All treatment should be carried out in accordance with the Mental Capacity Act Code of Practice.
• It is reasonable under common law to use clinical holding as an emergency measure, where the patient’s behaviour represents an immediate or significant risk to themselves or others.
• Any decision to use clinical holding must be documented in the patient notes, including the length of time of the hold.

Cancer

Cancer describes malignant disease. Its impact is very wide ranging depending on site, disease progression and treatment.

• Annual incidence in the UK (2014) is over 356 000 and increasing (Table 20.1).
• It is predominantly a disease of older people.
• One in three people in the UK will have cancer at some stage.
• In the UK, breast, lung, colorectal and prostate cancer account for 50% of cancers.
• Oral cancer is the most common cancer in men in Sri Lanka, India, Pakistan and Bangladesh. In the UK, it is 3%.
• With an older population and improved survival there are more people living with cancer.

Cancers of the head and neck are particularly relevant for the dentist for early recognition and the side effects of treatment (Table 20.2).