Health literacy
What do patients need to know and does it make a difference?
What education is available to diabetic people?
Education for the elderly diabetic person






In the early 1990’s, the medical profession was beginning to realise the dramatic impact of diabetes. For example, the East and West Finland study followed up diabetic and non-diabetic men, with and without previous myocardial infarction (MI), for seven years. Having diabetes alone was similar to having had a previous MI without diabetes in terms of subsequent MI, stroke and death. Having both previous MI plus diabetes conferred a seven-year risk of MI of 45%, stroke 20% and cardiovascular death of 42%;1 hence the origin of the term, “Diabetes is Coronary Heart Disease equivalent”. At that time when diabetes was thought harmless, it was compared to a wolf in sheep’s clothing, whereas in fact, diabetes is far more common and harmful to mankind than our lupine friends.2

A recent Diabetes UK report3 examined what 1,000 British people with and without a link to diabetes knew about diabetes (Table 1).

The results are probably worse than the picture 18 years ago4 when four out of five people believed that some people get a milder form of diabetes, 76% of those at risk of developing diabetes were unaware of their risk, only 46% knew that death can result from diabetes, and only one quarter knew that diabetes can lead to heart disease.


Health literacy

Health literacy has been described as being “about people having the knowledge, skills, understanding and confidence they need to be able to use health and care information and services.”5

It is known that poor health literacy is associated with adverse outcomes such as mortality,6 and that one third of English adults have difficulty reading and understanding basic health-related written information.7

Poor health literacy is also associated with poor health status, high use of healthcare services, low socio-economic status, lower education and older age.8 So the direction of causality between low health literacy and poor health outcomes is probably complex, but it is difficult to improve a condition without basic knowledge. Thus, information needs to be given in straightforward easy to understand messages.9


What do patients need to know and does it make a difference?

Everyone needs to be aware that diabetes is a serious condition with serious consequences, which is becoming more common.

The general population needs to know if they are at risk of diabetes, what they can do about their risk and the symptoms of undiagnosed diabetes. There are about five million people in England10 at high risk of diabetes or 12.3 million UK11 residents at increased risk of diabetes. Several online tools can assess the risk of diabetes, such as those on the Diabetes UK website.12

The NHS Diabetes Prevention Programme10 is a nine-month educational resource to help people to reduce their risk of type 2 diabetes, and is the first national diabetes prevention programme in the world. Initial data shows that over the nine months, overweight people lost an average of 3.7 kg,13 which should translate into less risk of developing diabetes, although this is not known for certain yet.

Advertising campaigns for the symptoms of diabetes do significantly increase public awareness afterwards,14 although much undiagnosed type 2 diabetes is asymptomatic.15

The close families of diabetic people also need to know an accurate drug list in case of emergency, and a working idea of a diabetic diet (which is actually a “Healthy Diet” that would benefit most of us). In cases of hospitalisation, one still sees family bringing in inappropriate food and drink such as Lucozade (although Lucozade is a valuable treatment for hypoglycaemia); I would highly commend the diet sheet from The Nutrition Advisory Group for Elderly People (NAGE), a subgroup of The British Dietetic Association, which is straightforward, sensible and not too strict.16

Depending on the patient’s ability to self manage diabetes problems, families might also need to watch at-risk feet, be able to deal with possible hypoglycaemia, monitor glucose levels, and give injections. Often the onus is on the family to become more involved, rather than being approached by the healthcare professional in a semi-routine fashion. This does presume that the family is willing and able to help, and the spouses of elderly people may be poorly able themselves.


What education is available to diabetic people?

Diabetic people need information to manage their diabetes and its complications.

There are now structured education programmes (Level 3) such as DAFNE and BERTIE for type 1 diabetes, DESMOND, and X-PERT Diabetes courses for type 2 diabetes and various locally organised courses.17, 18 These courses concentrate on glucose management, but also include more general diabetes information. There is evidence that these courses improve outcomes.

A systematic review of education in type 2 diabetes, mean age of subjects 60 years, showed that structured education improved fasting blood glucose levels, HbA1c, self-management skills, diabetes knowledge, self-efficacy/empowerment,  patient satisfaction and  body weight at 12 months.19 However, in the DESMOND programme, initial improvements in weight loss, depression and quality of life were not maintained at three years, although a better understanding of diabetes was maintained.20,21 Perhaps, the education programmes need to be ongoing to reinforce and consolidate the initial gains.

In type 1 diabetes, the Dose Adjustment For Normal Eating (DAFNE) programme had initial improvements in glycaemic control, dietary freedom, quality of life, general wellbeing and treatment satisfaction22 and at seven years, there was still an improvement in HbA1c.23 Unfortunately, there was not a reduction in severe hypoglycaemia.

Another problem is that only 1–12% of diabetic people attend these courses.24 There is also evidence that less formal approaches (level 2) such as face-to-face group-based education, peer-based approaches, and technology and internet-based approaches are useful to some people,25 and many diabetic people and their families find help at, a peer based diabetes forum. Diabetes UK also produces many valuable information sheets (level 1 learning). Although the elderly person may have difficulty using some of these resources, their families could make good use of them.

People with diabetes are best served by having a choice of different education options (in addition to support from healthcare professionals); hence, individuals can identify what best suits their needs, lifestyle and learning style, and therefore engage with the education process. However, it is also important to recognise that some people are less interested in their health and may not engage, no matter what one offers.25


Education for the elderly diabetic person

Diabetic people are often elderly and more prone to cognitive impairment, which is multifactorial in origin; communicating with the elderly person may be hampered by poor vision, poor hearing, and the need for time to assimilate new information. Because of these problems, one needs to frequently involve the carers who may be family, friends, or from state or voluntary agencies, in the diabetic care. These carers need to know all that the patient needs to know.  Unfortunately, our patients’ spouses often have various functional impairments themselves.26

Even something as crucial as the symptoms of hypoglycaemia were poorly known amongst the elderly 30 years ago in the UK,27 and a recent study from India has confirmed that poor knowledge of hypoglycaemia is still a problem28 with old age being a strong risk factor for poor knowledge.

The “sixty something ...” study29 administered a training programme to “free range” elderly diabetic subjects (mean age 67 years) of whom half had at least three other illnesses. The training programme improved diet, weight reduction and problem solving, which was generally maintained over six months when compared to a group not given the training programme. Although unfortunately there was no improvement in glycaemic control or patient well being.

Tu et al30 showed that weekly telephone calls for four weeks after an education programme reduced self-care behavioural deficits, but did not alter diabetes self-care knowledge or glycaemic control, in comparison to a group with the education but not the phone calls; unfortunately the sample size was small.

Gilden et al31 looked at the effect of support group follow up in diabetic American Veterans (mean age 68 years, range 57 to 82) for 18 months following an education programme, compared to subjects receiving just the programme, or no intervention at all. At assessment two years after the start of the education programme, subjects with support group follow up scored significantly better on knowledge, quality of life, and depression than the other groups, and subjects who had had any educational programme showed less stress, greater family involvement, and better glycaemic control than the control group; unfortunately, again the number of subjects was small.

A further trial of an education programme on diabetic diet in the elderly did produce significant improvements in glycaemic and lipid control.32

Subjects aged more than 64 from Buenos Aires, who attended educational workshops, were 33% less likely to die over the next six years; however, this is an observational study and again direction of causality is unclear.33

A most dramatic effect of education was seen in American veterans with foot problems,34 (presumably elderly), when a single education class showing slides of amputated limbs and giving foot care guidelines reduced the incidence of ulcers and amputations over a two-year period to one third that of a control group without the class; the comment in the discussion “that this may be one of the first studies in which any educational effort has proved effective in the Veterans Administration population” seems unfair.  

Thus, it seems that diabetes education programmes can have long-term benefits on knowledge, psychosocial functioning, glycaemic control, foot care and eye care for older diabetic patients. Indeed, analysis of a trial of an educational programme for all ages showed that both young and old improved glycaemic control, but older adults showed the greatest glycaemic improvement.35 However, continual reinforcement may be necessary for maximum benefit in some areas.

Having decided the topics for teaching, requirements for teaching elderly diabetic people would include:26

  • Small bites of information
  • Time
  • Large print handout
  • Carer involvement
  • Demonstrating pens and devices
  • Appropriate, quiet environment.



Putting aside one’s feelings about politicians, one cannot but agree with “education, education, education”. The educational resources exist, (particularly with the extra money promised to the NHS by Boris and the Brexiteers); we should support them, develop them and make full use of them. But there are many barriers to overcome.

From a personal point of view, I find it difficult to tell patients the negative picture of increased risk of vascular disease and many other diseases including dementia and malignancy; however, I need to put this in the perspective of the benefits of attaining atherothrombotic goals36 and avoiding hypoglycaemia having considered the individual.37

And one still has the problem that people, diabetic and non-diabetic (or not known to be diabetic) may not be interested in engaging with the educational process. How many educators does it take to change a light bulb? One, but the light bulb has got to want to change.38


Simon Croxson MD, FRCP

Conflict of interest: none declared



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