Oral healthcare for adults with Down Syndrome

Key Points

• Adults with Down Syndrome (DS) have particular oral health needs, requiring a supportive, empathic and well-informed dental team.

• Although most adults with DS in the study visit the dentist regularly, relatively little restorative treatment was provided.

• Experiences of oral care are influenced by the attitudes and skills of dental health professionals, and relatives' attitudes, preferences and knowledge.

• Relatives of adults with DS want more appropriate and timely oral health information from health care professionals.

• Current policy initiatives provide an opportunity for dentists to collaborate with other health and social care professionals to improve the provision of oral health care and information for people with DS.

Abstract

Aims To investigate experiences and expectations of parents/siblings of adults with Down Syndrome (DS) regarding oral healthcare, and explore factors impacting on access and experience of dental care for this group

Design A two phase qualitative and quantitative study using in-depth interviews with a convenience sample of six parents/siblings, and a postal questionnaire of 200 parents/siblings of adults with DS who are members of the Down Syndrome Association.

Results The main themes elicited from the qualitative interviews related to concern, experiences, parents'/siblings' attitudes, preferences and information. The response rate from the postal questionnaire was 63.5%. Adults with DS attended the dentist regularly but received little restorative treatment. Experience of oral healthcare was influenced by the attitudes and skills of dental health professionals; stigma; and relatives' expectations of dentists, their oral health beliefs, information and support received, knowledge and priorities. Parents/siblings wanted dentists to be proactive in providing more information on oral health issues in collaboration with other health and social care professionals.

Conclusions Whilst most adults with DS visited the dentist regularly, relatively little treatment had been provided. Parents highlighted a need for appropriate and timely oral health information early in their child's life, and access to dentists who were sympathetic, good communicators and well-informed about DS.

Main

Views and experiences of parents and siblings of adults with Down Syndrome regarding oral healthcare: a qualitative and quantitative study P. L. Kaye, J. Fiske, E. J. Bower, J. T. Newton and M. Fenlon Br Dent J 2005; 198: 571–578

Comment

The Disability Discrimination Act in 1995 set the agenda for a radical change in the delivery of care to people with a disability,¹ emphasising that disabled people not only have a right to equal standards of health and health care as the general population but also to autonomy and empowerment in the decision making process. However, studies consistently confirm that people with Learning Disabilities (LD) have poorer oral hygiene, a greater incidence of periodontal disease and experience more untreated disease than the general population.

The authors of this paper concentrated their research on adults with Down Syndrome (DS), using both qualitative and quantitative methods to investigate the dental treatment delivered to these groups. The qualitative research focused on the views and experiences of parents and siblings of adults with DS. Reflective interviews determined the factors impacting on access and experience of dental health care. The summary of validated transcripts from these should be essential reading for any health professional involved in treating people with LD.

The quantitative method involved a 32 item structured questionnaire investigating parents' and siblings' experiences and expectations of dental care for adults with DS.

The results demonstrated that access to dental care was not an issue. However, a comparison of the dental experiences of adults with Down Syndrome with adults of comparable age from the Adult Dental Health Survey 1998 makes compelling reading. Respondents to the questionnaire thought that generally treatment was appropriate and provided by 'friendly' dentists. There was though, often poor engagement of the patient and a clear perception that dentists were less enthusiastic in providing definitive treatment, with reluctance to carry out anything beyond basic oral hygiene measures. This was well illustrated by evidence that the levels of preventive interventions and fissure sealants were minimal. The study confirmed that adults with DS have significantly fewer restorations, extractions or episodes of orthodontic treatment.

What do carers therefore want from their dentists? Principally they wish care to be delivered by a supportive and skilled dental team, who have an understanding of the needs of the patient with DS. They also requested advice on the oral health issues associated with DS.

The concluding message of the paper is that dentists must collaborate in a joined up, seamless way with other professionals to improve knowledge about oral health. Similarly, they must deliver appropriate care, especially preventive treatment to DS patients while being cognisant of the need to respect the autonomy of these individuals.