Trinity College Dublin. School of Dental Sciences. Discipline of Dental Science
Abstract
Background and rationale As the population with Intellectual Disabilities (ID) age, the challenges to their successful ageing are unclear. It is important to understand how this population age: how their health changes into later life and how they and society, can respond to ensure successful ageing for all, while minimizing disparities. Total tooth loss is an accumulative disabling condition that reflects the burden of oral disease and the effectiveness of disease management over the life course, which increases in older age and seems to be more common among adults with ID than the general population. Research into the oral health of people with ID, has often explored both oral health and service use together, often with an emphasis on behaviour support, to allow appropriate health monitoring, service planning and policy. Given current oral health policy development in Ireland, research of this type is timely.
Aim The aim of this study was to explore total tooth loss and oral health service use among older adults with intellectual disabilities in Ireland. To achieve this aim, two objectives were met by answering seven questions. The objectives of this study were to understand the prevalence, sequelae and impact of edentulism and to understand the frequency of dental attendance and use of behavioural supports among older adults with intellectual disabilities in Ireland.
Methods This multi-methods study adopts quantitative, mixed methods and qualitative methodologies, conducted within the context of a larger longitudinal study on ageing and ID. The Intellectual Disability Supplement to The Irish LongituDinal study on Ageing (IDS-TILDA) is a unique longitudinal cohort study designed to explore features of ageing among older adults with ID. This study is comparable with The Irish Longitudinal Study on Ageing (TILDA). IDS-TILDA includes a nationally representative sample of adults with ID over 40 years of age who completed pre-interview questionnaires and interviews over two waves (concluding 2011 and 2014) of data collection.
Six dentists, who treat people with ID regularly, were also interviewed to explain some of the quantitative findings from IDS-TILDA in a sequential-explanatory mixed-methods design and to explore their experiences of behaviour support used in providing this care, in a small qualitative descriptive study.
Results A total of 753 people participated in Wave 1 and 708 in Wave 2. Relating to Objective 1, the reported prevalence of edentulism was 34% among adults with ID over fifty years of age in Ireland. This compared to 14.9% of the general population. Once edentulous, two thirds of adults with ID did not wear dentures. This compared to between 5% and 9% of edentulous adults without ID. Nine out of ten participants without teeth did not wear dentures because they did not want them. Only 8 out of 117 people without dentures reportedly wanted them. Reliance on carers to respond on participants? behalf was associated with not having dentures. Compared to people who have teeth, the odds of reporting difficulty eating was twice as high (OR=2.01, 95%CI=1.02-4.03) among edentulous participants without teeth or dentures and one fifth as high among edentulous participants who reportedly had dentures (OR =0.21, 95%CI=0.06-0.64), controlling for likely covariates. Edentulism is therefore a risk factor for difficulty eating among adults with ID, only if not treated with complete removable dentures. In fact, complete denture wear predicts a reduction in difficulty eating, relative to those who have teeth.
Relating to Objective 2, the majority of older adults with ID in Ireland attended dental services regularly. This included 86.5% of the total sample, ranging from 95% of dentate and 60.5% of edentulous participants. This compared to literature based comparisons of 44% of dentate and 2.3% of edentulous adults over 65 years in Ireland. Most older adults who did not attend dental services, did so because they saw no need. This, in turn, was seen to be associated with the absense of both pain and teeth. Most older adults with ID reported the use of non-pharmacological support to receive dental care: 1% reported use of inhalation sedation; 2% Intravenous (IV) sedation; 8% general anaesthesia (GA) and 14% oral sedation for dental care. Expert dentists, who partook in the qualitative phase of this study, felt that these figures represented the unavailability of sedation and GA and inappropriate treatment. Compared to those who were not, participants reporting challenging behaviour (OR=2.3, 95%CI=1.43-3.20), significant difficulty speaking (OR=3.5, 95%CI=2.19-5.57) and obvious oral problems (OR=2.53, 95% (1.56-4.10) had greater odds of reporting treatment with GA or sedation rather than non-pharmacological supports. Experts applied behaviour support strategies, that they mostly learned ad hoc, to reduce reliance on, or increase the effectiveness of, pharmacological supports. Support strategies were selected through both rationalist and intuitive processes and were applied by the dentist iteratively assessing, applying, reassessing and adapting this approach. In this way the process formed through co-regulatory communication between dentist and patient.
Discussion This study set out to study two seemingly distantly related phenomena: oral disease burden and oral health service use among adults with ID. This thesis considers edentulism as a barometer of both the experience of and the outcomes from oral disease. For adults with ID, this study demonstrates that oral health service use is high but outcomes are poor. This has a negative functional impact. This study suggests that GA and IV sedation are inaccessible, possibly making treatment inappropriate.
Conclusion The oral health outcomes for people with ID are poor despite regular use of dental care. People with ID should be prioritised for appropriate services, through equitable policy. This thesis makes recommendations for practice, policy and research to ensure healthy ageing with appropriate support for all people in Ireland