Dementia is a group of related symptoms associated with an ongoing decline of the brain and its ability to function. It affects people's thinking, language, memory, understanding and judgement. For more information about this condition, see Health A-Z: dementia.
According to the Alzheimer’s Society, two-thirds of all people with dementia are cared for in the community.
Caring for someone with dementia presents a range of practical issues that can differ from those faced by other carers. People with dementia often feel vulnerable as their condition progresses and they increasingly rely on other people to do things for them. As a carer of someone with dementia, you'll want to do everything you can to reassure and support them while helping them retain some level of independence. Although some symptoms are common to many people with dementia, each person’s experience of the disease will be different.
Everyday tasks
When a person with dementia finds that their mental abilities are declining, they're likely to feel anxious, stressed and scared. They may be aware of their increasing clumsiness and inability to remember things, and this can be very frustrating and upsetting for them. As a carer, you can help them feel more secure by creating a regular daily routine in a relaxed environment where they're encouraged and not criticised.
Involving the person you care for in everyday tasks may make them feel useful and improve their sense of self-worth. They could help with the shopping, laying the table or sweeping leaves in the garden, for example.
As the illness progresses, these tasks may become harder for them to manage independently, and you may need to give them more support. Offer support sensitively and don't be critical of their attempts. It can be very important for them to feel that they're still useful.
In the early stages of dementia, memory aids can be used around the house to help the person remember where things are. For example, you could put pictures on cupboard doors of what's inside, such as cups and saucers. This may help to trigger their memory and enable them to retain their independence a little longer.
Hobbies and interests
Many people with dementia still enjoy their previous hobbies or interests. For example, if they liked cooking, they may be able to help you make a meal. Going for a walk or gardening can provide exercise and fresh air. Or they may prefer listening to music or playing a board game.
Caring for a pet cat or dog can bring a lot of pleasure to some people. If the person you care for was very sociable and outgoing or if they have a large family, they may really enjoy visits from one or two family members or friends. Remember, they may struggle to keep up with conversations if they have a lot of visitors at the same time.
Health and nutrition
It’s important that the person you care for eats healthily and gets some exercise. The longer they stay fit and healthy, the better their quality of life will be.
If the person you care for doesn’t eat enough or eats unhealthy food, they can become susceptible to other illnesses. People with dementia can become more confused if they get ill.
Common problems for people with dementia include:
- not recognising foods
- forgetting what food they like
- refusing or spitting out food
- resisting being fed
- asking for strange food combinations
This behaviour is usually due to confusion or irritation in the mouth because of dental problems, rather than wanting to be awkward.
If you're concerned about the person's eating behaviour, speak to your GP.
How you can help
Involve the person you care for. For example, if you feed them, you could put the cutlery in their hand and help guide it to their mouth. You could also involve them in preparing food if they are up to it.
Try and stay calm. If you feel stressed at mealtimes, the person you care for will probably be stressed too. Make sure you have plenty of time for meals so you can deal with any problems that arise.
Try to accommodate behaviour changes. It's likely that the person you care for will change their eating patterns and habits over time. Being aware of this and trying to be flexible will make mealtimes less stressful for both of you.
If you think the person you care for may have health or dental problems, get help from your GP or dentist. You could also contact a local carers' group to speak to other people who may have experienced similar difficulties.
If someone with dementia smokes, replace matches with disposable lighters to lower the risk of them accidentally causing a fire.
If the person you care for drinks alcohol, check whether this will cause any side effects if they take dementia medication. If in doubt, ask your GP for advice.
Incontinence
Incontinence can be difficult to deal with and can be very upsetting for the person you care for. It's common for people with dementia to experience incontinence. This can be due to urinary tract infections, constipation causing added pressure on the bladder, or medication. A person with dementia may also simply forget to go to the toilet or may forget where the toilet is. They may have lost the ability to tell when they need the toilet.
How you can help
There are many ways to help with incontinence, but it's important to be understanding, retain a sense of humour and remember that it's not their fault. You may also want to try the following:
- Put a clear sign on the toilet door, such as a photo of the toilet.
- Keep the toilet door open and make sure that the person you care for can access it easily.
- Make sure they can remove their clothes. Some people with dementia can struggle with buttons and zips.
- Look out for signs that they may need to go to the toilet, such as fidgeting and standing up and down.
- Get adaptations to the toilet if necessary. You can get these through a community care assessment.
If you’re still having problems with incontinence, speak to your community nurse about continence products, such as waterproof bedding and incontinence pads. Find out more about support services.
Personal hygiene
People with dementia can become anxious about certain aspects of personal hygiene and may need help with washing. For example, they may be scared of falling when getting out of the bath, or they may become disorientated in the shower. The person you care for may not want to be left alone or they may resist washing because they find the lack of privacy undignified and embarrassing. Try to do what's best for them. Find out more about personal hygiene.
Caring for someone with dementia can be very frustrating and stressful at times, but there are many organisations that can help. For more details, call Carers Direct on freephone 0808 802 0202. Lines are open 8am–9pm Monday to Friday and 11am–4pm on weekends and bank holidays.
Click on the bars below to find out more about sources of support and care options for the person with dementia.
Watch the video below to find out more about caring for someone with dementia. Use the dementia carers' tips video wall (also below) to find out how others have dealt with difficulties caring for a relative with dementia.
