Promoting oral health for people with learning disabilities
Intended for healthcare professionals
Evidence and practice    

Promoting oral health for people with learning disabilities

Becky Williamson Teaching assistant, School of Nursing and Midwifery, Queen’s University Belfast, Belfast, Northern Ireland

Why you should read this article:
  • To refresh your knowledge of risk factors for suboptimal oral health in people with learning disabilities

  • To recognise the importance of education and training for healthcare professionals and carers to support oral health for people with learning disabilities

  • To read about interventions that can be used to support access to dental care for people with learning disabilities

People with learning disabilities have poorer oral health compared with the general population. Risk factors for suboptimal oral health in this group include diet, reliance on others for oral care and barriers to accessing dental care. This article discusses these risk factors and considers the importance of education and training for carers and healthcare professionals, including dentists and dental students, to enhance oral health in people with learning disabilities. The author uses a fictional case study to illustrate some of the challenges experienced by people with learning disabilities in accessing oral care and how the use of interventions such as desensitisation programmes, as well as reasonable adjustments, can help address these challenges.

Learning Disability Practice. doi: 10.7748/ldp.2024.e2234

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

b.williamson@qub.ac.uk

Conflict of interest

None declared

Williamson B (2024) Promoting oral health for people with learning disabilities. Learning Disability Practice. doi: 10.7748/ldp.2024.e2234

Published online: 22 February 2024

Oral health does not simply mean healthy teeth, it also means being free from pain and disease and having functional teeth that support chewing, swallowing, speech, nutrition and normal digestion (Anders and Davis 2010). Evidence shows that people with learning disabilities have poorer oral health compared with the general population (Wilson et al 2019) and that there is a high prevalence of untreated, preventable dental decay and total tooth extraction in this population (Kinnear et al 2019, Ward et al 2020).

Anders and Davis (2010), in a systematic review of oral health in people with learning disabilities, found this group was at a higher risk of developing gum disease and experiencing untreated dental cavities compared with those without learning disabilities. In a similar review, Ward et al (2019) reported the findings of a large study of adults with learning disabilities (n=4,218) in which 56% had periodontitis (gum disease), with the rate increasing with age.

The consequences of suboptimal oral health extend beyond tooth decay and gum disease and have been found to have significant associations with aspiration pneumonia as well as chronic health conditions, such as cardiovascular disease, diabetes mellitus, respiratory disease and stroke, in all populations (Aida et al 2011, Tada and Miura 2012, Wilson et al 2019).

Many factors can affect oral health in people with learning disabilities, including sensory processing challenges, gastro-oesophageal reflux, mouth breathing and oral and facial developmental differences (Anders and Davis 2010). This article considers some of the risk factors for suboptimal oral health in people with learning disabilities. It also discusses the need for education and training for dental and non-dental healthcare professionals, including nurses, as well as informal carers, to support optimal oral health in this population. The article includes a fictional case study to illustrate some of the challenges experienced by people with learning disabilities in accessing dental care and how interventions such as desensitisation programmes and reasonable adjustments can support their access to dental services and improved oral health.

Risk factors

There are various risk factors for suboptimal oral health in people with learning disabilities, including diet, reliance on others for oral care and barriers to accessing healthcare.

Diet

Diet choices are the most significant factor in the development of tooth decay in all populations (Office for Health Improvement and Disparities (OHID) et al 2021). People who have a high-sugar diet or weight management challenges are more at risk of developing dental cavities and gum disease than those who do not (Jeong et al 2022). People with learning disabilities are at increased risk of being overweight compared with the general population due, for example, to inadequately balanced diets and low levels of physical activity (Public Health England (PHE) 2020). In addition, some commonly used health interventions in this population, for example sugar-based medicines such as laxatives, high-calorie food supplements and medicines that reduce saliva production, may increase the risk of tooth decay (Chadwick et al 2018).

Some people with learning disabilities may find it difficult to understand the negative effects on their health of certain lifestyle factors, such as nutrition (Learning Disabilities Mortality Review Programme 2019). A person’s level of health literacy contributes to their understanding of the effects of lifestyle factors on their health (Turnbull et al 2023). Health literacy can be considered the ability to access, understand, evaluate and apply health information in relation to healthcare, disease prevention and health promotion (Sørensen et al 2012). However, it can be challenging for people with learning disabilities to understand and implement health-related information, particularly if it is not provided in an accessible format (Turnbull et al 2023). For example, the Food Standards Agency (2020) traffic light food labelling system requires a person to understand not only what a traffic light system signifies but also to be able to read, understand and measure food serving sizes.

People’s living environment can affect diet choices. Some people with learning disabilities live in supported accommodation. In the UK, the Health Equalities Framework, an outcomes framework based on the determinants of health inequalities, found less than 10% of adults with learning disabilities living in supported accommodation ate a balanced diet (Atkinson et al 2013). Although there does not appear to be more recent published research to support this, Harper and Ooms (2021) discussed how people with learning disabilities often rely on others to prepare their meals and ensure they are eating a balanced diet, which can result in poor dietary habits. To address these issues, Harper and Ooms (2021) developed an online recipe resource for people with learning disabilities and a training programme for staff in implementing healthy eating in this group.

Key points

  • There is a high prevalence of untreated, preventable dental decay and total tooth extraction in people with learning disabilities

  • Suboptimal oral health has significant associations with aspiration pneumonia and chronic health conditions such as cardiovascular disease, diabetes mellitus, respiratory disease and stroke

  • Education and training programmes for carers and healthcare professionals are essential for promoting oral health for people with learning disabilities

  • There is a need for multidisciplinary and person-centred dental care services for people with learning disabilities

  • Desensitisation programmes, supported by accessible information and tailored reasonable adjustments, can help support people with learning disabilities to access dental care

Reliance on others for oral care

People with learning disabilities may rely on others to meet their oral care needs (Anders and Davis 2010, Fickert and Ross 2012). Chadwick et al (2018), who surveyed adults with learning disabilities and their carers to explore facilitators and barriers to maintaining oral health and hygiene, found that people with learning disabilities experienced challenges with toothbrushing. The researchers reported that respondents did not brush effectively, either not brushing for long enough, brushing for too long or forgetting to brush unless prompted. Reduced dexterity and oral motor challenges can also result in ineffective toothbrushing (Bernal 2005, Anders and Davis 2010).

Evidence has suggested that carers may not understand the importance of oral health (Department of Health 2005) and that their daily oral healthcare practice is ineffective (Faulks and Hennequin 2000, Bernal 2005, Faculty of Dental Surgery, Royal College of Surgeons of England 2012). Fickert and Ross (2012) reported there was a lack of oral hygiene programmes aimed at carers and that carers excluded oral care for various reasons, including due to behaviours regarded as challenging, lack of time, lack of resources, forgetting and difficulty completing all aspects of oral care, such as teeth flossing.

Barriers to accessing healthcare

People with learning disabilities experience barriers to accessing healthcare (NHS England 2024), including dental care (El-Yousfi et al 2019). A rapid review by El-Yousfi et al (2019) identified sensory challenges, communication challenges, lack of physical access and lack of training for healthcare professionals as barriers to accessing oral healthcare. They also reported that some people with Down’s syndrome experienced high levels of anxiety, which was expressed as behaviours perceived as challenging; consequently, they chose not to access dental services, or this decision was made on their behalf. Other barriers included challenges in obtaining consent for treatment, a complicated medical history – particularly in people who had moved from long-stay institutional accommodation into the community – and challenges in communicating dental pain (El-Yousfi et al 2019).

In a study of strategies used by UK-based dentists when working with autistic people, McMillion et al (2022) found there was a lack of dental care providers who were specifically trained to support this group. The General Dental Council (2017) reported there were 4,355 registered specialist dentists in the UK in 2017, but only 314 (7%) worked in special care dentistry – special care dentistry provides oral healthcare services for adults unable to accept or receive routine dental care due to a physical, sensory, intellectual, mental health, medical, emotional or social impairment or disability (General Dental Council 2024).

McMillion et al (2022) found that dentists valued carer involvement, particularly in relation to decision-making and post-treatment care, and that they recognised the importance of adopting a flexible approach, for example to undertaking procedures, and of considering autistic people’s communication and sensory needs. However, the complexity of dental services, different types of treatments, lack of time and pressure to meet NHS targets meant dentists found it challenging to adopt a flexible approach (McMillion et al 2022). Dentists who participated in the study also expressed concern about using general anaesthetics for common procedures, meaning some patients did not have their dental needs met. It is important to acknowledge that McMillion et al’s (2022) study focused on dentists’ experience of working with autistic people and does not refer to autistic people with learning disabilities. However, it could be argued that people with learning disabilities and autistic people may experience some similar challenges in accessing dental care.

The fictional case study below describes how Helen, an autistic woman who also has severe learning disabilities, was helped to overcome various challenges to accessing effective oral and dental care (Case study 1).

Education and training to support oral health

In the case study, it appears that Helen’s oral health needs were not being met adequately by her support staff, perhaps because of some of the challenges explored earlier in the article. One way of addressing such challenges is through education and training. The Faculty of Dental Surgery, Royal College of Surgeons of England (2012) clinical guidelines on oral healthcare for people with learning disabilities recommend the inclusion of education on this topic in undergraduate and postgraduate programmes for dental and non-dental healthcare professionals, including nurses, and formal training for carers and allied health professionals, such as dietitians.

Education and training programmes that focus on increasing understanding of the importance of oral health for adults with learning disabilities have been shown to improve dental care (Kangutkar et al 2022). In a scoping review, Kangutkar et al (2022) found that a training programme that aimed to improve understanding of and attitudes towards oral health for adults with learning disabilities among carers and dental and non-dental healthcare professionals resulted in their changed behaviours, such as providing regular and effective dental and oral care. Kangutkar et al (2022) also reported that such training in dental care resulted in improved dental health outcomes for people with learning disabilities.

Selbera et al (2021) found that carers’ behaviours in providing oral care to people with learning disabilities improved following attendance at an oral health education programme; however, this improvement was not maintained. Wilson et al (2022) reported that an oral health education programme for carers did not improve their overall oral health knowledge and emphasised that education or training should be targeted towards carers’ specific situation in terms of the needs of the person they care for. In addition, the authors recommended that professionals offering training in oral health should ensure it is based on the most up-to-date practice (Wilson et al 2022).

Matteucci et al (2023) used remote behavioural skills training to teach dental students and dental professionals to implement practical interventions to support people with learning disabilities during routine examinations.

Case study 1. Helen

Helen is a 38-year-old autistic woman with severe learning disabilities who lives in a residential home supported by staff 24 hours a day. Helen is non-verbal and communicates her needs through gestures and some Makaton signs. She relies on her support team to meet her personal care needs, including oral care. Helen enjoys a varied diet but prefers high-sugar foods. Helen has a history of chest infections, therefore a speech and language therapist carried out a swallowing assessment to identify whether there was evidence of dysphagia which could be causing aspiration. The assessment found no signs of dysphagia.

Support staff had noticed that Helen had dental cavities when they were providing oral care and that, at times, she was pointing to her teeth and crying. Helen found attending the dentist challenging and her support staff believed this was because she found the lights, sound of the instruments and having to sit in a strange chair distressing. However, they also wanted her to have a dental check to identify and treat the source of the pain.

The support staff contacted the community learning disability nurse, who supported Helen through a desensitisation programme. Desensitisation is an approach to learning that aims to increase acceptance of an intervention, for example, and reduce the person’s fears and anxieties (James et al 2013). The learning disability nurse used photographs of the dental practice and recorded video messages from the dentist and dental nurse to support Helen’s desensitisation programme. In addition, reasonable adjustments based on Helen’s individual needs were set up including: frequent visits to the dental clinic to look around and try to feel more comfortable in that environment; extended appointment times to give Helen time to relax and settle into the different environment; and visual aids used by the dental team to support communication.

The desensitisation programme and reasonable adjustments helped Helen feel confident enough to allow the dentist to look inside her mouth, although she did not sit in the dentist chair. Helen’s dentist was able to observe several decaying teeth which they believed were due to her high-sugar diet, and irregular and potentially ineffective oral care. The dentist recommended extraction and treatment under general anaesthetic.

Following mental capacity assessments, best interests meetings and comprehensive planning, Helen had the extractions and treatment under general anaesthetic, from which she recovered well. Helen’s GP suggested that her previous frequent chest infections may have been due to pulmonary aspiration of oral bacteria linked to her suboptimal oral hygiene.

The researchers reported that role-play exercises were easily transferred to real-life interventions and emphasised the importance of dental students having practical experience in supporting people with learning disabilities and their dental needs.

There is little research on the effects of oral health education and training for people with learning disabilities. In a systematic review, Lai et al (2022) found that education interventions for children with learning disabilities to improve dental care outcomes produced no long-term benefits, although the studies reviewed involved group-based rather than one-to-one interventions. There may therefore be scope to explore the benefits of education provision on an individual basis.

Guidelines and frameworks to support oral health

The Faculty of Dental Surgery, Royal College of Surgeons of England (2012) clinical guidelines focus on the prevention of oral diseases and the maintenance of good oral health. They provide guidance and recommendations on topics ranging from healthy eating and oral hygiene regimens to commissioning of appropriate services and training and education for healthcare professionals. The guidelines also emphasise the need for multidisciplinary and person-centred dental care services for people with learning disabilities.

The Core Capabilities Framework for Supporting People with a Learning Disability (Skills for Health et al 2019) supports professional development of those working with people with learning disabilities in various capacities, from carers to advanced clinical practitioners. Key learning outcomes within the framework include awareness of the prevalence and potential effect of oral and dental disease, the importance of effective oral hygiene for people with dysphagia and supporting oral hygiene in people with learning disabilities. It is one of the roles of the learning disability nurse to support and advocate for these needs to be met (Skills for Health et al 2019).

In addition, the Core Capabilities Framework (Skills for Health et al 2019) identifies several key learning outcomes related to mental capacity, including understanding people’s communication needs when considering their capacity to make decisions about their healthcare and understanding the process of best interests decisions, and the need to ensure involvement of family and care staff in such decisions. In the context of dental treatment, some people may require ‘clinical holding’ or the use of sedation or general anaesthetic (Kinnear et al 2019, Ward et al 2020), therefore it is vital that those involved in caring for or supporting people with learning disabilities understand the requirements of the Mental Capacity Act 2005 with regard to capacity to consent and best interests decisions (Office of the Public Guardian 2020).

Desensitisation and reasonable adjustments

In the case study, Helen was supported by her community learning disability nurse to access the dentist through a desensitisation programme and reasonable adjustments.

Desensitisation techniques are used for various health interventions for people with learning disabilities, such as receiving injections or having blood tests (Malik and Giles 2020, Cithambaram 2021). Helen’s learning disability nurse used visual methods of communication, including photographs and videos, to support desensitisation. It is important to use the most appropriate method of communication depending on the person’s specific needs. Furthermore, it is considered best practice to liaise with a speech and language therapist if the healthcare professional is unsure of a person’s level of comprehension, to ensure that information is provided in a format that best suits their needs (NHS England 2017). For some people, easy read materials may be useful; guidance on how to develop such materials can be found on the Foundation for People with Learning Disabilities website at: www.learningdisabilities.org.uk/learning-disabilities/a-to-z/e/easy-read

A proactive approach to making reasonable adjustments based on an individual’s needs is recommended, meaning services should put any changes in place in advance of an appointment or healthcare intervention (PHE 2019). PHE (2019) guidance on oral health in people with learning disabilities includes a section on reasonable adjustments as well as a list of resources for informal and formal carers to support effective oral health. In addition, Delivering Better Oral Health: An Evidence-Based Toolkit for Prevention (OHID et al 2021), which aims to support dental teams in improving patients’ oral and general health, includes easy read resources, information and printable schedules.

Conclusion

Suboptimal oral health can result in untreated, preventable dental decay and total tooth extraction in people with learning disabilities and is associated with physical health conditions such as respiratory disease. It is vital, therefore, that people with learning disabilities receive effective oral care. Risk factors for suboptimal oral health include diet and health literacy challenges, reliance on other people for oral care and barriers to accessing dental care. Promoting effective oral health requires a proactive, holistic and collaborative approach, education and training for dental and non-dental healthcare professionals and carers, and person-centred interventions. Desensitisation programmes and reasonable adjustments based on an individual’s needs may support access to dental care and treatment for people with learning disabilities.

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