“My message to anyone living with dementia is to talk about it”
Russell reflects on the challenges of coping with his wife's personality changes following her dementia diagnosis.
Diabetes is a condition that causes a person’s blood sugars to be too high. It occurs when the body does not produce enough – or any – of the hormone insulin, which controls how it converts glucose (sugar) from food and drink to energy.
If a person has dementia and diabetes, they may need additional support with managing their diabetes. Our dementia specialist Admiral Nurses explain how you can help.
Types of diabetes
The two most common forms of diabetes are:
Type 1 diabetes
A lifelong condition where the body’s immune system attacks the cells that produce insulin. Everyone with type 1 diabetes needs to take insulin.
Type 2 diabetes
A condition where the body does not produce enough insulin, or the body’s cells do not react to insulin properly. Some people can manage type 2 diabetes through lifestyle – for example through diet, exercise and maintaining a healthy weight – but medication may be necessary.
Does diabetes cause dementia?
Research shows that type 2 diabetes increases the risk of developing dementia. The reasons are uncertain, but people with diabetes are more likely to develop high blood pressure and cholesterol, which are risk factors for dementia.
People with type 1 diabetes who experience severe blood sugar highs and lows may also be at increased risk of dementia.
The risk of developing dementia increases with the length of time the person has lived with diabetes and its severity. However, having diabetes does not mean that someone will definitely develop dementia.
Living with diabetes and dementia
It is important for everyone with diabetes to ensure their condition is managed by following a healthy diet, being physically active, taking medication if required and attending health checks.
Dementia can make it harder for a person to manage their diabetes due to changes in their memory, concentration or diet. They are likely to need support to:
- take any diabetes medications as prescribed
- administer their insulin injections safely if they need them
- interpret their blood sugar results
- make decisions about adjusting their insulin doses or treating hypos
- eat and drink regularly and healthily
- take physical exercise
- maintain a healthy weight
- stay hydrated
- discuss any concerns with their GP or diabetes specialist
- attend their annual diabetes review and any other appointments
Supporting a person with dementia to manage their diabetes medication
A person with diabetes may need to take medication, which could include:
- insulin – administered through a syringe, insulin pen or a pump attached to the body. Everyone with type 1 diabetes will need to take insulin, as will some people with type 2 diabetes
- tablets – most commonly metformin, which many people with type 2 diabetes need to take
- prescribed appetite suppressant injections
It is important for the person to take any medication as prescribed, whether for their diabetes, dementia and/or other health conditions. They may need your help with this.
- If the person has a specialist diabetes nurse, ask them to explain their medication regime and target blood sugar levels
- Ensure you are kept up to date with any changes to their diabetes management plan
- To help the person remember to take their medication, try using prompts like a calendar or wall chart, alarms/alerts on their smartphone or smart speaker, or a pill organiser box
- If you are worried that a person may take more medication than they should, consider storing it in a locked box or cupboard
- If the person cannot safely inject their own medication, ask their specialist diabetes nurse to show you/other carers how to do it or consider if diabetes technology could help
- If a person lives alone, a member of the local Community Nursing Team may be able to visit and give them their insulin injections at home
- Talk to the person’s GP or diabetes specialist about whether their medication regime could be reviewed and simplified – for example by reducing the number of medications they take, or prescribing liquid forms of medication if they develop difficulties with swallowing tablets
Technology for managing diabetes
There are several types of technology that can help a person manage their diabetes, particularly if their blood sugars need to be tested frequently or they need insulin injections more than once a day.
Insulin pens
Insulin pens are an easy-to-use alternative to a traditional syringe. They come with a cartridge of insulin rather than a vial that needs to be drawn up. The person’s dose can be pre-set to ensure they take the right amount.
Smart insulin pens
A smart insulin pen automatically records the person’s last dose of insulin to help you monitor if they have taken the right dose at the right time. The information can be sent automatically to an app on a person’s phone. The pen can also send alerts if an injection is missed.
Insulin pump/patch
A small electronic device worn on the body which releases insulin at the right times, day and night, so the person does not have to inject themselves.
Flash glucose monitors/continuous glucose monitors (CGM)
These are sensors worn on the body (usually on the back of the upper arm) that monitor blood sugars 24/7. This information is sent to the person’s smartphone, and to your phone if required. You can set an alarm to sound if blood sugars are too high or low. The most common type of flash/CGM is the Freestyle Libre system.
Smartphone apps
These can help people manage their diabetes, for example by counting their carbohydrate intake, setting medication alerts and tracking blood sugar levels over time.
Not all of this technology is available free on the NHS, so it is important to discuss the person’s suitability and eligibility with their diabetes specialist.
Changes in diet and nutrition
Dementia often has an impact on a person’s appetite and ability to eat and drink. This may affect how they manage their diabetes. The person may:
- have changes in tastes
- crave sweet foods
- have difficulty expressing hunger/thirst
- overeat
- lose their appetite or interest in food
- forget to eat/drink
- need support preparing food/drinks
- struggle to handle cutlery and eat independently
- have difficulties chewing or swallowing
It is important to update the person’s Diabetic Team with any changes in their eating habits or weight, as their treatment may need to be reviewed. It may be helpful for the person to be weighed monthly to identify any changes.
People with dementia often do not drink enough and can quickly become dehydrated. This could increase their confusion and their chance of developing a urinary tract infection (UTI), which can lead to high blood sugar levels in people with diabetes. The person may need help to ensure they drink enough – you will find tips in our information on hydration.
If the person becomes excessively thirsty it is important that their blood sugars are checked. If they are extremely high, they will require a review by the GP/diabetic nurse.
Visual changes
Some people with dementia experience changes in vision. This could affect how well they can see their insulin doses, locate their tablets, or prepare and eat food, meaning they may need extra help managing their diabetes treatment.
However, diabetes can also affect a person’s vision. It can cause diabetic retinopathy (damage to the back of the eye, known as the retina) and increase the risk of glaucoma (damage to the optic nerve).
It is important not to assume that any vision changes are caused by the person’s dementia and to ensure they have regular eye tests and mention any changes to their optician or diabetes specialist.
Hypoglycaemia
Hypoglycaemia, or a ‘hypo’, is an episode of low blood sugar, which could be dangerous and even life-threatening. It may occur if the person takes too much diabetes medication, misses meals, drinks too much alcohol or exercises intensely.
It can be difficult to tell if a person with dementia is experiencing a hypo as the symptoms often overlap, including:
- irritability/anxiety
- difficulty concentrating
- confusion
- erratic or irrational behaviour
There may also be physical signs of low blood sugar, including:
- trembling
- sweating/night sweats
- dizziness
- palpitations
- fast heart rate
- hunger
- looking pale
- headache
- becoming unresponsive and losing consciousness
A hypo needs to be treated promptly, so it is important to recognise the differences – which may be subtle – between the signs of a hypo and the person’s dementia symptoms. If the person seems particularly agitated, anxious and confused, test their blood sugar. If it is low, take steps to address this, for example by giving them a sugary drink, dextrose/glucose sweets or jelly babies.
If the person goes into a severe hypo, acting quickly is vital. Diabetes UK has information on treating a severe hypo. You should also call the person’s GP or NHS 111 for urgent advice.
It is helpful to keep a record of the person’s hypos to identify any patterns and help their healthcare team assess whether their blood sugar could be better managed.
It is also a good idea for the person with diabetes and dementia to carry a form of ID that explains their diagnoses, such as a wristband, ID card, medical alert jewellery, or an up-to-date health record on their phone. This will help them get the support they need if they become confused or unwell in public.
Dementia, sundowning and hypos
Many people with dementia become increasingly confused and unsettled in the evening. They may have a strong sense of being in the wrong place – for example, they may ask to go home, even if they are already at home. This is known as sundowning.
While this is common in dementia, it is important not to assume that a person with diabetes is sundowning, as these symptoms could also be a sign of low blood sugar. If they become very confused in the evening, check their blood sugar levels and, if they are low, encourage them to have a sugary drink or sweets.
Diabetes, infection, and delirium
People with diabetes are at greater risk of developing infections due to high blood sugar levels. Having an infection may itself affect the person’s blood sugars, so if you are concerned that they are ill, please speak to their GP.
A person with dementia is more likely to develop delirium if they have an infection. This is a state of sudden, intense confusion and disorientation. It needs to be treated immediately, so please contact their GP if there are rapid or unexpected changes in their behaviour.
Dementia and diabetic annual reviews
Everyone with dementia should have an annual review with their GP. This should include:
- discussing any new symptoms/changes
- reviewing medication and other treatments
- talking through their own and their carers’ support needs
- making or updating an advance care plan to set out their wishes for future care
People with diabetes should also have an annual diabetes review with their GP or diabetes specialist. This should include:
- a blood test to look at their average blood sugar levels (HbA1c) over the last three months
- a cholesterol test
- blood and urine tests to check their kidney function
- blood pressure, height and weight checks
- a check of their feet – diabetes can cause reduced circulation and sensation in the feet, which may mean the person is unaware of any problems
The person will also be invited for a separate eye appointment to check for diabetic retinopathy.
It is a good idea to go with the person to their reviews so you can share any new information and understand any advice they are given.
If the person is not invited for their diabetes or dementia review, contact their healthcare professional. It is useful to make a note of when they should happen in case the person with dementia forgets they are due or needs help arranging the appointments.
Hospital admissions for people with dementia and diabetes
At some point, it is possible that the person you care for will need to be admitted to hospital, whether due to their diabetes or another condition. This can be particularly unsettling for a person with dementia. Our advice on hospital admissions for a person with dementia will help you make their stay as comfortable and stress-free as possible.
Useful resources
Diabetes UK
Helpline: 0345 123 2399
Diabetes UK shop (selling wristbands and other useful products)
