Dementia

What is dementia?

Dementia describes a group of diseases that affect the brain. Alzheimer’s disease is the most common form of dementia.

Dementia leads to a progressive loss of brain tissue. As brain tissue cannot be replaced, symptoms become worse over time and lead to a loss of skills which may include:

• loss of memory
• an inability to concentrate
• difficulty in finding the right words or understanding what other people are saying
• a poor sense of time and place
• difficulty in completing self-care and domestic tasks
• difficulty solving minor problems
• mood changes
• behavioural changes.

Communication

Here are some tips on the best way to communicate with someone living with dementia:

Health

If you are caring for someone with dementia, it’s important to help them remain as fit and healthy as possible; both physically and mentally. The better they feel, the more they can enjoy life. This makes life more pleasurable for both of you.

Wellbeing

The mental health and wellbeing of the person you are caring for is as important as their physical health.

They will need:

• affection and reassurance that you still value them, and that they matter to you
• freedom from as much external stress as possible
• appropriate activities and stimulation to help them to remain alert and motivated for as long as possible.

The health and wellbeing of the person you are caring for will be affected by many different factors. The following suggestions are adjustments you may wish to make to improve this.

Exercise

Everyone needs some form of regular exercise. Your general practitioner (GP), occupational therapist or physiotherapist will be able to give you advice on this.

Exercising will:

• help the person remain mobile and independent for longer
• improve their circulation and help prevent stiffness and muscle wasting
• help the person feel more relaxed and calm; it will also improve their sleep
• reduce anxiety, stress and depression.

Eating well

It is a good idea to monitor people’s weight for changes. This will help you to see if the person you are caring for is eating too little or too much.

Eating too little

Eating too little or missing out on essential nutrients will reduce the person’s resistance to illness and may make them feel more confused. If the person has a poor appetite it is a good idea to:

• offer small amounts often
• prepare brightly coloured, appetising food
• present food on plain bright coloured crockery so the individual can easily see their food
• avoid distractions at mealtimes.

It is also worth noting that people with dementia often eat better in groups.

Eating too much

If the person is eating too much or are preoccupied with food:

• tactfully limit the amount of food available
• offer low-calorie alternatives
• use distraction and offer other activities.

Eating fatty, sugary foods can cause considerable weight gain, leading to further health problems. Eating sweet foods can cause peaks and troughs in energy levels, exacerbating mood swings.

If the person refuses to eat a balanced diet, their GP may suggest alternatives, or may prescribe vitamins or supplements.

Some people may have problems with coughing or choking when they eat or drink. They may need to be referred to their GP for specialist advice.

Here are some other tips for eating well:

• involve the person you are caring for in food preparation, laying the table etc.
• make sure they drink enough fluids; dehydration is a health risk and can increase confusion (encourage at least eight cups of fluid a day).
• make sure food is not too hot as people living with dementia may lose the ability to judge temperature
• promote independence with adapted cutlery and cups and the use of easy to eat finger foods.

Constipation

This is a common problem among less active people. It can cause pain and discomfort, and can also increase the person’s confusion. If problems persist, please discuss this with the person’s GP or nurse.

You can help prevent constipation by:

• providing foods that are high in fibre, such as cereals, wholemeal bread, fruit and vegetables
• encouraging the person to drink plenty of liquid
• promoting regular exercise.

Incontinence

If the person you are caring for has problems with incontinence, the first thing to check is whether they are able to get to the toilet without any problems. They may want to use the toilet but are unable to use, or find it. You can help by:

• making sure that the person knows where the toilet is – a sign on the door may help or an image may be more effective
• making sure that there are no obstacles in the person’s way such as awkwardly placed furniture
• leaving internal doors open to make it easier for the person to move around
• leaving the toilet door open so that the person does not think it is in use
• installing equipment such as handrails to make the toilet easier to use – the person’s GP will be able to put you in contact with an occupational therapist who can offer advice
• making sure the person’s clothes can be quickly removed and unfastened; some people find Velcro fastenings easier to use than zips or buttons
• reminding the person to go to the toilet, or taking them there, at regular intervals; you may be able to manage faecal incontinence by taking the person to the toilet at a set time, if their habits are regular
• being aware of signs that the person wants to go to the toilet; these may include fidgeting, getting up and down, or pulling at their clothes

If it becomes too difficult for the person to get to the toilet a commode may be useful. Please ask your community nurse for advice.

If the person is incontinent at night, encourage them to avoid drinks for two or three hours before going to bed. However, make sure that they drink plenty of fluids during the day.

Keeping warm

Becoming cold for any length of time is a serious health risk, particularly for those who are inactive and have poor circulation. The person you are caring for may feel the cold far more than you do, but they may not realise it or may be unable to tell you:

• make sure that the rooms where the person sits and sleeps during the day are kept warm
• use layers of clothing, ideally with natural fibres, such as wool
• encourage the person to wear a hat, gloves and warm socks if they go out in cold weather (indoors too, if necessary).

Sleep

We all need a good night’s rest, but people with dementia can find it hard to sleep. They can also become confused about night and day and may get up in the middle of the night.

It may help if you can:

• discourage the person from taking too many daytime naps
• encourage the person you are caring for to take part in stimulating activities through the day as they are more likely to doze off if they are bored
• limit fluids in the evening and avoid stimulating drinks such as tea and coffee
• encourage the person to take some form of exercise during the day
• find soothing and relaxing ways to encourage the person to sleep, such as warm bath, relaxing music or a structured bed time routine
• use black out blinds.

Technology, including bed sensors, is available to help you look after someone who has difficulty sleeping.

Epilepsy

Seizures are more likely to occur in people with dementia. It is important to discuss how they may present with your care team.

Smoking

It’s common knowledge that smoking is bad for us. People with dementia have been known to forget about smoking if cigarettes and ashtrays are removed from sight. However, trying to make the person you are caring for stop smoking may make them tense and irritable. There is also an ethical question about the person’s right to continue to enjoy something that they have enjoyed in the past – whether or not it is bad for them.

For a person with memory loss, smoking not only damages their health; it can also mean an increased fire risk. If the person you’re caring for does smoke, try to make it as safe as possible for example, by replacing matches with disposable lighters.

Alcohol

A drink in company may be a pleasant way for the person you are caring for to relax. However, people with dementia can appear more confused after a drink, so the amount may need to be limited. Also, alcohol doesn’t mix well with certain medicines. If in doubt, ask their GP for advice.

If you are concerned that the person is drinking too much because they’ve forgotten how much they’ve had, or that they are drinking inappropriately, you may decide to keep alcohol out of reach and out of sight. As with smoking, you as the carer need to balance the issue of the person’s right to enjoy a pleasurable activity against the risk.

Hearing problems

Poor hearing can add to the person’s confusion and feelings of isolation. If you think the person you are caring for has a hearing problem, ask their GP to refer them for a hearing test. The test and hearing aids, are free on the NHS.

If the person uses a hearing aid, make sure it’s switched on and working properly. As the dementia progresses the person may find that the hearing aid is too difficult to manage and simply adds to their confusion.

If the person has hearing difficulties that a hearing aid can’t resolve, try to attract their attention before speaking to them. Touch them on the arm to indicate where you are, make sure you’re facing them, and then speak slowly and clearly. If they don’t understand you, try altering the form of words you’re using rather than repeating the same phrase more loudly. Make sure there’s no distracting noise, such as television, radio or loud voices.

Eyesight

Problems with sight can increase confusion in people living with dementia, and can make it harder for them to recognise people or objects.

Optometrists have special techniques for assessing sight, even for people experiencing the later stages of dementia. They should also check for cataracts and glaucoma, both of which can lead to blindness if left untreated, as well as for certain other medical conditions.

Tactfully remind the person to wear their glasses if necessary, and check that their lenses are clean.

Healthy teeth and gums

It’s important that the person you are caring for has regular dental check-ups to make sure there are no problems with their teeth, gums or dentures. Any pain or discomfort will distress the person and may lead to difficulties with eating and drinking, which may increase their confusion.

If you notice any of the following, please let the person’s dentist know at once:

• swollen gums
• ulcers
• broken teeth
• missing fillings

Explaining that the person has dementia will help the dentist treat the person more effectively. Encourage or help the person to follow the dentist’s instructions, such as brushing and flossing their teeth, and cleaning their dentures regularly.

As dementia progresses, the person affected may become increasingly less able to:

• clean their teeth effectively
• understand that their teeth need to be kept clean
• express the need for dental treatment
• explain dental symptoms, including pain
• take part in the decision-making process about treatment
• give their informed consent
• feel comfortable with dental treatment.

A dentist or dental hygienist can give guidance and support on how to clean another person’s teeth. The technique will vary depending on the individual concerned.

Foot care

Healthy feet are essential if the person with dementia is to remain mobile and active.

Please make sure the person you are caring for wears well-fitting shoes. Slippers are comfortable but they should not be worn for more than a few hours at a time as they don’t offer enough support. This can increase a risk of falls. It is also important that the person’s feet are kept clean and dry and that their toenails are cut short.

If there are problems such as corns or ingrowing toenails, please consult a state-registered chiropodist. If any part of the foot becomes swollen or painful or the skin changes colour, contact the GP as soon as possible.

Remaining mobile

The more mobile the person remains, the better it will be for their health. If the person you are caring for becomes unsteady on their feet, an occupational therapist will be able to give you advice on aids and equipment which may help. This may include grab rails to help people move around.

Things you can do to help the person you are caring for remain mobile include:

• avoiding the use of rugs
• making sure chairs and seats are firm and comfortable, easy to sit down in and easy to get up from
• getting advice from an occupational therapist or physiotherapist on how you can safely help someone to move around without injuring yourself.

Depression and anxiety

A certain amount of depression or anxiety is very common in people with dementia; particularly in the early stages, when they may be aware of their declining abilities. You can help in the following ways:

• if they are able to talk about what is troubling them, listen and show that you are trying to understand their feelings – do not brush their feelings aside or attempt to jolly them along; their feelings are very real
• offer affection, reassurance and support
• if you feel that the person is extremely depressed or anxious, ask their GP for advice – the sooner the better.

Spotting a problem

As the carer, you need to keep an eye on the state of the person’s health. As dementia progresses, the person you are caring for will become less able to identify health problems or to tell you about them. Please look out for any signs that they might be in pain or discomfort. If you help them wash or dress discreetly look out for:

• cuts and bruises in case they have fallen and forgotten to tell you
• rashes or sore places; any red patches that don’t go away after a few hours could be pressure sores, so tell the GP or district nurse immediately.

Tips for preventing pressure sores:

• try to make sure that the person eats a good balanced diet, with plenty of fresh fruit and vegetables; good nutrition makes the skin healthier and more resistant to sores.
• help the person exercise regularly; exercise improves the circulation and helps relieve any pressure that has built up.
• if the person is incontinent, make sure they don’t stay in wet clothes or a wet bed; if skin is in contact with urine for any length of time, it becomes more susceptible to sores
• excessive heat and moisture can contribute to pressure sores; try not to let the person become hot and sweaty
• avoid closefitting clothing or tight bedding, especially over the feet
• make sure the person is completely dry after a bath or a wash, particularly in the skin folds; pat them dry – don’t rub
• never rub or massage any places where the skin has reddened, as this could cause further damage
• encourage the person to move their position whenever they are lying or sitting for any length of time.

Getting check-ups

It is advised that the person has regular check-ups with their GP as well as sight, hearing and dental reviews as part of their annual health check.

Later check-ups will be easier if the professional has been able to establish a relationship with the person at an early stage of their dementia when the person may be able to give information about themselves and be better able to adjust to any changes, for example a hearing aid.

If you have any concerns please ask the person’s GP for a general health check. If there’s an area of particular concern, such as diabetes, make sure the person has regular check-ups.

Health action plans and hospital passports will be offered to the person your care for.

Medication

In general, the fewer drugs the person has to take the better, both for their dementia and their general health. This includes prescription and over-the-counter drugs.

• as soon as possible after diagnosis, check with their GP to make sure that the person is not taking any drugs that they don’t need any more, and that they are taking the lowest possible effective dose
• make sure any drugs prescribed to manage behaviour are reviewed regularly
• tell the GP if you suspect that the person’s medication may be increasing their confusion or causing other unwanted side-effects
• help the person take their medication at the right time with box compartments or individual tablets marked with days or times.
• for more severe memory problems, you may have to supervise their medication in case they overlook a dose or take an extra dose by mistake; place medicines out of reach and out of sight as an extra precaution.

Remembering the past

Memories help us to know who we are. Remembering the past reminds us of our place in the world and our identity. It is generally a pleasant experience and becomes more important as we get older.

It is also important for those caring for the person with dementia to remember what they were like before the effects of the disease. The person remains but it becomes difficult for us to reach them.

Reminiscing can be encouraged and facilitated in a number of ways.

• group reminiscences – using videos, music, photographs and stories from the past
• one-to-one reminiscences – this can be more personalised and may be less overwhelming than group work
• visits to familiar places from the past or to old friends
• make a ‘life book’ or ‘life box’ a collection of personal photographs, videos and objects that will stimulate the person to talk about the past.

Information and advice

Alzheimer’s society

Tel. 08453 000336
Web. www.alzheimers.org.uk

Down’s Syndrome Association

Tel. 08452 300372
Web. www.downs-syndrome.org.uk

Down’s Syndrome Scotland

Tel. 0131 3134225
Web. www.dsscotland.org.uk

Carers UK

Tel. 0808 808 7777
Web. www.carersuk.org

L608, V4, 21/12/2018 (Archive: 21/12/2021)