**2. Disability and oral health**

This section will examine the disability from a UK perspective, the principles of providing healthcare for people with a learning disability and the challenges faced in doing so. Traditionally, it has been found that people with a disability or other impairment (such as a mental illness or a learning difficulty) may have worse oral health than those without such disabilities or impairments; not only can this cause physical problems, but it can potentially have a wider reaching impact as poor oral health can have a negative effect on self-esteem, quality of life and general health. Improving the levels of oral health in those with impairments or disabilities is, consequently, a major issue for the dental care services.

### **2.1 Disability in the UK**

At a global level, it is suggested that approximately 10% of the world's population, more than half a billion people, are disabled and it is predicted that this number will rise dramatically in the next quarter of a century (International Disability Foundation, 1998). It is estimated that between 1.3% and 3.5% of the population in the UK has a learning disability (Department of Health, 2007). The government strategy for people with a learning disability for the 21st century entitled 'Valuing People' defines learning disability as including the presence of:

Disability and Oral Health 345

the NHS was to "enable people with learning disabilities to access a health service designed around their individual needs, with fast and convenient care delivered to a high standard,

In addition to the Department of Health guidelines, dental practices in the UK are required to comply with the Disability Discrimination Act (Qureshi and Scambler, 2008). This Act was partly subsumed into the 2010 Equality Act which aims to protect disabled people and prevent discrimination and to provide legal protection in relation to education, employment, access to goods and services (UK Government, 2010); this requires dental practices as providers of healthcare to make 'reasonable adjustments to physical features'. In the context of the General Dental Service (Disability Rights Commission, 2003, Disability Rights Commission, 2004) physical features may be regarded as those 'structural/inanimate aspects' of a service which are used integrally as part of the service uptake and make the experience, or service, use acceptable. Such features may include: steps, stairways, kerbs, exterior surfaces, paving, parking bays, entrances and exits, internal doors, gates, toilets, washing facilities, public facilities (such as telephones, counters, service desks), lighting, ventilation, lifts and escalators. When combined with national guidelines, the Disability Discrimination and Equality Acts ensure that oral health care provision for disabled people

and with additional support where necessary." (Department of Health, 2001).

should be accessible, both physically and philosophically, and of a high quality.

There are three broad challenges associated with promoting oral health and the delivery of oral and dental healthcare; first, the challenge of preventing oral disease and maintaining oral health; second, the challenge of accessing appropriate dental care in a timely manner, and third, obtaining informed consent for care. Each of these topics will be dealt with in turn

As already outlined, good oral health contributes to general health and wellbeing. There is relatively little epidemiological research on the oral health needs of people with a learning disability. Children and adults with a learning disability suffer from the same common oral diseases and conditions as the rest of society (Fig 1); however, there is evidence that they experience poorer outcomes and the impact of oral disease on quality of life can be

Data on the oral health needs of adults with disabilities are limited. Overall within the UK oral health has improved considerably in the past three decades across the population; however, inequalities persist. Oral health surveys of adults with learning disabilities in the UK have found: poor oral hygiene and high prevalence of periodontal (gum) diseases; a wide range of prevalence estimates of tooth decay; more missing teeth than general population and more untreated disease for adults living in the community than those in

Even where needs are not significantly different across settings, an Australian survey demonstrated a number of important trends: higher odds of 'dental caries experience' were associated with age and having no oral hygiene assistance; higher odds of 'missing teeth' were associated with the type of disability, requiring a general anaesthetic for dental

profound as it impairs eating, speaking socialising and comfort.

institutions (British Society for Disability and Health et al., 2001).

**2.3 The challenges** 

starting with 'oral health'.

**2.3.1 Oral health** 


(Department of Health, 2001)

Estimates suggest that there are somewhere between 230,000 and 350,000 people with a severe learning disability and a further 0.58M to 1.75M with a mild to moderate learning disability in the UK alone (Department of Health, 2007). This means that learning disabilities are common; however, the nature and extent of disabilities vary widely. It is therefore important that adults with learning disabilities should not be viewed as a homogeneous group (British Society for Disability & Oral Health et al., 2001). Learning disabilities may be associated with a physical disability or medical condition which further adds to the complexity of their lives, and those of their carers (British Society for Disability & Oral Health et al., 2001). This has implications for the level of support that they require in daily living.

#### **2.2 The principles**

There is ongoing debate about how disability should be defined and the impact of definitions on the provision of care; whereby disability is defined either as 'functional limitations based on an impaired body' or 'oppression caused by a social world which is not made accessible to everyone regardless of impairment' (Scambler et al., 2011). The argument hinges on the extent to which disabled people are seen as tragic victims to be 'helped' (the medical model approach) or individuals who happen to have an impairment but have the same rights and needs as their non-disabled peers (the social model approach). Whilst much dental training adopts, often unconsciously, a medical model approach, there is a growing awareness of the need for a social, patient-centred approach as demonstrated in health policy and professional action.

Following on from the general strategic document 'Valuing People', the Department of Health (2007) published 'Valuing Oral Health: a good practice guide for improving the oral health of disabled children and adults'. This placed great importance on 'choice, rights and inclusion' for disabled people in relation to health care. The report recommended that:


(Department of Health, 2007)

The ethos behind these principles is a social approach, with acknowledgement that disabled people have the same rights in relation to their oral health care as their non-disabled peers. This echoes the earlier strategy on 'Valuing People' which stated that the main objective for

• A significantly reduced ability to understand new or complex information, to learn new

Estimates suggest that there are somewhere between 230,000 and 350,000 people with a severe learning disability and a further 0.58M to 1.75M with a mild to moderate learning disability in the UK alone (Department of Health, 2007). This means that learning disabilities are common; however, the nature and extent of disabilities vary widely. It is therefore important that adults with learning disabilities should not be viewed as a homogeneous group (British Society for Disability & Oral Health et al., 2001). Learning disabilities may be associated with a physical disability or medical condition which further adds to the complexity of their lives, and those of their carers (British Society for Disability & Oral Health et al., 2001). This has implications for the level of support that they require in daily

There is ongoing debate about how disability should be defined and the impact of definitions on the provision of care; whereby disability is defined either as 'functional limitations based on an impaired body' or 'oppression caused by a social world which is not made accessible to everyone regardless of impairment' (Scambler et al., 2011). The argument hinges on the extent to which disabled people are seen as tragic victims to be 'helped' (the medical model approach) or individuals who happen to have an impairment but have the same rights and needs as their non-disabled peers (the social model approach). Whilst much dental training adopts, often unconsciously, a medical model approach, there is a growing awareness of the need for a social, patient-centred approach as demonstrated in health

Following on from the general strategic document 'Valuing People', the Department of Health (2007) published 'Valuing Oral Health: a good practice guide for improving the oral health of disabled children and adults'. This placed great importance on 'choice, rights and inclusion' for disabled people in relation to health care. The report recommended that:

2. Disabled people should be enabled to access and make use of health information to

3. Disabled people have the same right to good quality health care as all other groups in

4. Disabled people have an equal right to oral healthcare that is responsive to their specific

5. Oral Healthcare should be an integral part of holistic care packages for disabled people.

The ethos behind these principles is a social approach, with acknowledgement that disabled people have the same rights in relation to their oral health care as their non-disabled peers. This echoes the earlier strategy on 'Valuing People' which stated that the main objective for

1. Primary care should be the main provider of oral care for disabled people.

• A reduced ability to cope independently (impaired social functioning); • Which started before adulthood, with a lasting effect on development.

skills (impaired intelligence) with;

(Department of Health, 2001)

living.

**2.2 The principles** 

policy and professional action.

promote choice and inclusion.

the population.

(Department of Health, 2007)

needs.

the NHS was to "enable people with learning disabilities to access a health service designed around their individual needs, with fast and convenient care delivered to a high standard, and with additional support where necessary." (Department of Health, 2001).

In addition to the Department of Health guidelines, dental practices in the UK are required to comply with the Disability Discrimination Act (Qureshi and Scambler, 2008). This Act was partly subsumed into the 2010 Equality Act which aims to protect disabled people and prevent discrimination and to provide legal protection in relation to education, employment, access to goods and services (UK Government, 2010); this requires dental practices as providers of healthcare to make 'reasonable adjustments to physical features'. In the context of the General Dental Service (Disability Rights Commission, 2003, Disability Rights Commission, 2004) physical features may be regarded as those 'structural/inanimate aspects' of a service which are used integrally as part of the service uptake and make the experience, or service, use acceptable. Such features may include: steps, stairways, kerbs, exterior surfaces, paving, parking bays, entrances and exits, internal doors, gates, toilets, washing facilities, public facilities (such as telephones, counters, service desks), lighting, ventilation, lifts and escalators. When combined with national guidelines, the Disability Discrimination and Equality Acts ensure that oral health care provision for disabled people should be accessible, both physically and philosophically, and of a high quality.

## **2.3 The challenges**

There are three broad challenges associated with promoting oral health and the delivery of oral and dental healthcare; first, the challenge of preventing oral disease and maintaining oral health; second, the challenge of accessing appropriate dental care in a timely manner, and third, obtaining informed consent for care. Each of these topics will be dealt with in turn starting with 'oral health'.

## **2.3.1 Oral health**

As already outlined, good oral health contributes to general health and wellbeing. There is relatively little epidemiological research on the oral health needs of people with a learning disability. Children and adults with a learning disability suffer from the same common oral diseases and conditions as the rest of society (Fig 1); however, there is evidence that they experience poorer outcomes and the impact of oral disease on quality of life can be profound as it impairs eating, speaking socialising and comfort.

Data on the oral health needs of adults with disabilities are limited. Overall within the UK oral health has improved considerably in the past three decades across the population; however, inequalities persist. Oral health surveys of adults with learning disabilities in the UK have found: poor oral hygiene and high prevalence of periodontal (gum) diseases; a wide range of prevalence estimates of tooth decay; more missing teeth than general population and more untreated disease for adults living in the community than those in institutions (British Society for Disability and Health et al., 2001).

Even where needs are not significantly different across settings, an Australian survey demonstrated a number of important trends: higher odds of 'dental caries experience' were associated with age and having no oral hygiene assistance; higher odds of 'missing teeth' were associated with the type of disability, requiring a general anaesthetic for dental

Disability and Oral Health 347

Individual barriers include a lack of perception of need by individuals (Halberg & Klingberg 2004) or their carers (Cumella el al. 2001); difficulty following instructions (Bollard 2002); and access problems (Dougall & Fiske 2008). Barriers relating to the dental profession include a lack of training (Gallagher and Fiske, 2007, Scambler et al., 2011); poor communication skills (Sentell 2007); high staff turnover (Pratelli and Gelbier, 1998) (Scambler et al., 2011) and a lack of time and resources (Scambler et al., 2011). Societal barriers include a general lack of awareness of the importance of oral healthcare, and a lack of positive attitudes towards oral health promotion (Owens et al., 2011). Finally, governmental barriers include a lack of resources for oral health services (Dougall and Fiske, 2008a). This suggests that whilst the oral health needs of people with learning disabilities are broadly similar to their non-disabled peers, there are significantly more barriers to

In addition to the barriers listed above, there is the issue of 'capacity to consent' to treatment to consider (Dougall and Fiske, 2008c). The Mental Capacity Act (UK Parliament, 2005) introduced a broad *diagnostic* threshold to determine whether a person has capacity to make a particular decision. The Act identified that a person lacks capacity where: '…at the material time, he is unable to make a decision for himself in relation to a matter because of an impairment of or disturbance in the functioning of the mind or brain' (section 2(1). 'The

timely oral health care of good quality.

impairment may be temporary or permanent' (section 2(2)).

• understand the information relevant to the decision

A person is considered unable to make a decision if (s)he is unable to:

• use or weigh up that information as part of the process of making the decision

The principles of consent remain the same whether or not people have full capacity to consent. Informed consent is based on freewill, capacity and knowledge (Dougall and Fiske, 2008c). This means that there are certain key stages which clinicians need to work through with patients, from an introduction of self and the purpose of the visit and establishing what is already understood, right through to giving and obtaining informed

**2.3.3 Consent for care** 

• retain that information

(UK Parliament, 2005)

consent:

• Introduction

• communicate his/her decision.'

• Establishing what is already understood • Explaining the nature of the clinical condition

• Checking what has been understood

• Confirming the preferred treatment mode

• Outlining treatment options • Explaining risks and benefits

• Inviting further questions

• Giving and obtaining consent (King, 2001, Dougall and Fiske, 2008c)

treatment, and both low and high carer-contact; finally, higher odds of having 'filled teeth' were associated with age, having no oral hygiene assistance and having high carer-contact (Pradhan et al., 2009). This underlines the importance of high quality daily care as well as regular dental care.

It is also recognised that trauma to teeth can present a challenge to some people with learning disabilities. Epileptic seizures and falls due to dyspraxia and impaired mobility increase the risk of traumatic dental injury, which is likely to require urgent assessment and treatment (Department of Health, 2007).

It is vitally important to ensure that children and adults with learning disabilities, and their carers, are sufficiently supported to care for their oral health and prevent disease as outlined in Section 3.1, rather than just treating disease once it has developed. The main diseases and conditions are outlined in Table 1.


Table 1. Common oral diseases and conditions
