People with intellectual disabilities (ID) will die on average 20 years earlier than the general population. Many of these people will die of diseases that could be prevented. This was the dire message of Laurence Taggart, a learning disability nurse and research psychologist who spoke at the recent Diabetes Ireland multidisciplinary study day. 

Mr Taggart, who is a lecturer at the Institute of Nursing and Health Research at the University of Ulster, is currently working on expanding the DESMOND (diabetes education and self-management for ongoing and newly diagnosed) portfolio of education modules for people with diabetes to include one specifically designed for people with ID, the DESMOND-ID.

“People with intellectual disabilities will die on average 20 years earlier than me and you,” Mr Taggart said.

“Some of the causes of death are respiratory disease, coronary heart disease and specific cancers. And when you think of coronary heart disease and specific cancers, these would be oesophageal cancers, stomach cancers and gallbladder cancers, these are all diseases due to lifestyle factors.”

These lifestyle factors include diet, nutrition and sedentary behaviour.

“There’s also a possible link with the heavy use of antipsychotic medication,” Mr Taggart added.

There are also a number of secondary health conditions that are much more prevalent in people with ID than in the general population, explained Mr Taggart. These include dementia; mental health issues; osteoporosis; injuries, accidents and falls; GORD; epilepsy; physical disabilities; type 1 and type 2 diabetes; and hearing, vision and dental issues. 

Mr Taggart pointed to the IDS-TILDA¹ study, which found that 37% of people with ID over 40 have osteoporosis. The study also found that 11% of the study cohort had type 2 diabetes.

“But prevalence figures for diabetes when it comes to people with ID vary from 3% to 18%, and that’s a huge variation,” said Mr Taggart, who explained that this depends on the sample taken and screening method used. 

He speculated that these figures vary so wildly because the number of studies that have actively screened people with ID for type 2 diabetes are very few; in fact he could only think of the one, the IDS-TILDA.

“So what this reflects back on is the figure I mentioned at the start, that people with intellectual disabilities are dying a lot younger than the general population. And why is this? Because we’re not picking them up [with eg. diabetes]. It’s very, very simple.”

Prevalent risk factors

Mr Taggart pointed out that risk factors for developing type 2 diabetes are more prevalent in people with ID because of genetics, diet and nutrition, the high levels of sedentary behaviour, medications, obesity and smoking. 

Taggart’s own research found a considerable number of people with ID living in the community with diabetes who were obese and had poorly managed HbA1c, blood pressure and cholesterol and limited access to retinopathy and foot care checks.²

“Only 8% of the people we screened met the WHO recommendations for moderate to vigorous activity,” added Mr Taggart.

“This population is also one that is heavily prescribed antipsychotic medication. And what do we know about these drugs? We know that they cause weight issues and in particular abdominal obesity, which leads to type 2 diabetes.

“Many times, these medications are not given for the purposes of what they are prescribed for – to deal with an underlying psychiatric disorder – rather they are given to deal with challenging behaviour; it’s a quick fix, and it’s cheap, but it has significant consequences,” said Mr Taggart.

“We have also found in studies on young people with intellectual disabilities high rates of smoking and possibly substance misuse.”

Mr Taggart pointed to a study in Northern Ireland in 2013 looking at a number of people with ID who had diabetes living in their local communities, and found high levels of obesity. Their diabetes was poorly managed within the community, and less than half had an annual health check. Their HbA1c was unstable, there were high levels of high blood pressure, high levels of high cholesterol and limited opportunities to engage in their own care. Mr Taggart also pointed out that people with ID have very few opportunities to actively engage in appropriate diabetes education such as DAFNE, DESMOND, etc.

“People with intellectual disabilities and type 2 diabetes are not being offered structured education to self-manage their condition, despite NICE guidelines identifying this as best practice,” said Mr Taggart.

The need for structured education programmes for type 2 diabetes has been given high priority by many governments and healthcare agencies, yet these programmes do not so far offer education for people with ID. However, Mr Taggart and his colleagues are currently developing a new module to the UK national programme ‘DESMOND’ directed at people with ID.

DESMOND, which stands for ‘diabetes education and self-management for ongoing and newly diagnosed’, provides a way to finding out more about type 2 diabetes and will help patients self-manage their condition. It also offers an opportunity to meet others with diabetes and share experiences.

“This new edition, DESMOND-ID will hopefully be finished in the next 12 months,” said Mr Taggart.

Specific challenges of ID and diabetes

There is a whole range of challenges when it comes to managing diabetes in people with ID. Mr Taggart listed some of the most common and specific challenges:

• The level of intellectual disability (borderline, mild, moderate and severe/profound)

• The cognitive deficits, such as processing information, re-call, and re-appraisals of beliefs and behaviours

• Communications difficulties; comprehension and acquiescence

• Low levels of literacy skills and different learning skills

• Engagement with family and paid carers, or lack of same

• Variation in supports provided to monitor HbA1c; to aid with managing a healthy diet, exercising, becoming less sedentary; with medication compliance, eye examinations, foot care, etc.

The adaptation of DESMOND for people with ID will hopefully tackle some of these challenges, but how will this be done?

Adapting DESMOND for people with ID

Mr Taggart had been introduced to the DESMOND programme a couple of years back, he told, and the idea developed that this education programme should be adapted for people with ID.

“We got seven people with intellectual disabilities and brought them to our university and we got a couple of staff. We changed the original programme to six weeks and we held a day’s training one day a week. One session was held in the morning, then there was a focus group, lunch and then one session in the afternoon. We taped the sessions. 

“We had three independent observers and there were two educators from Leicester who came to Belfast every week. So we adapted the programme and we had very robust methodological processes in place to look at how this worked well and how not.

“Then we ran a second iteration of the programme in a care centre, and we added a seventh week because we realised the importance of the family carer and paid staff. So the first day [week] was just for family members and paid staff to see what their role was in supporting the person with ID.

“We had to strip the DESMOND booklet back to the skeleton and ask what the person with ID needs to know.”

The main adaptations of DESMOND-ID were in relation to:

• Time: spreading the course over seven weeks instead of usual intense training, so that the course is delivered in two hours per day, divided into several sessions and including a break

“There was no way we’d be able to deliver a programme over six hours straight, which the traditional DESMOND does, so we spread it over seven weeks, the first week for family carers and paid staff, then the next six weeks for the people with ID.”

• Core concepts: had to be simplified

“We were asking the people with ID at every session: what do you need to know about this, that, and that? If we were to change things, would it be better? It was trial and error.”

• Pictorial representations: visual, photos, pictures and symbols had to be very carefully chosen so as to deliver the right message

• Repetitious learning: there were more interactive sessions than in the original DESMOND, with lots of fun and games

“We had to put in a lot more repetitious learning and we use a lot of food models. It was a lot more interactive, fun and games.”

• Emphasis on development of skills and developing ‘self-efficacy’

• Support for carers (actual education of carers as well as the patients)

“This was really important because the family member or paid staff has to be able to support the person with type 2 diabetes and ID when they then for example go food shopping.”

• Health action plans and goal setting

“At the end of every session [day], we targeted specific areas, and then they’d have to come back the following week and we’d look at what had gone wrong and what hadn’t.”

• Celebration and fun.

“There were lots of trials and errors going on, but we think we have got it now and we’re about to deliver. What we have done is we have identified one intellectual disability nurse and one diabetes nurse for specialist training as DESMOND-ID educators across Scotland, Wales and NI, and we are now about to do a feasibility study based on what we’ve learned.”

The aim of the feasibility study is to see whether educating people with type 2 diabetes and ID through the DESMOND-ID programme improves their care outcomes compared with delivering normal diabetes care to people with ID. 

“There are then plans for a randomised controlled trial, and we hope that it will show better management and control of type 2 diabetes, improve health promotion of this population, improve quality of life for the person with ID and their carers, reduce hospital emergency admissions of people with ID, and we’re hoping that a cost analysis will show a reduced burden on healthcare costs.”

Recruitment for the feasibility study started in March 2015 and was at that stage scheduled to last for eight months. 

References

1. Burke E, McCallion P, McCarron M (editors). Advancing years, different challenges: wave 2 IDS-TILDA. Findings on the ageing of people with an intellectual disability. The intellectual disability supplement to TILDA, September 2014
2. Taggart L, Coates V, Truesdale-Kennedy M. Management and quality indicators of diabetes mellitus in people with intellectual disabilities, Journal of Intellectual Disability Research, 2013; 57(12): 1152-1163