Caring for someone with dementia
If you have dementia, or you are looking after someone who does, you will experience a range of practical issues.
People with dementia can feel vulnerable as their condition progresses and they increasingly rely on other people to do things for them. It is important that people who have dementia feel reassured and supported, while retaining some level of independence. For more information, read our page on staying independent with dementia. Although some symptoms are common to many people with dementia, each person's experience of the disease will be different.
Below is a list of issues you may begin to encounter after a dementia diagnosis.
Helping someone with dementia with 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.
If you are looking after someone with dementia, 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 look after 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.
How you can help
Offer support sensitively and try not to be critical of their attempts. It can be very important for the person with dementia to feel that they're still useful.
In the early stages, 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.
Keeping up hobbies and interests when someone has dementia
Many people with dementia will still enjoy their hobbies or interests. For example, if they like cooking, they may be able to help 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. But remember that they may struggle to keep up with conversations if they have a lot of visitors at the same time.
Maintaining good health and nutrition in someone with dementia
It's important that the person you care for has a healthy, balanced dietand 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 caused by 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 able to.
Try to 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 if this is recommended alongside any medication they make take. If in doubt, ask your GP.
Dealing with incontinence in someone with dementia
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 also have lost the ability to tell when they need the toilet.
How you can help
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 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 may be able to get these through a community care assessment
If you're still having problems with incontinence, ask your GP to refer you to a continence advisor, who can advise on things like waterproof bedding or incontinence pads.
Find out about support services.
Helping someone with dementia with their 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 about personal hygiene.
Helping someone with dementia sleep well
People with dementia often experience disturbed sleep. They may wake up during the night or be restless. These problems may get worse as the illness progresses. People with dementia may also have painful illnesses such as arthritis that cause, or contribute to, sleep problems.
Some medication can cause sleepiness during the day and interfere with sleep at night. Sleeping pills can be used with care in people with dementia.
However, "sleep hygiene" measures are best for people with dementia – for example, no naps during the day, regular bedtimes and avoiding alcohol or caffeine at night.
Taking care of your own wellbeing
If you or a family member has dementia, you may find it difficult to stay positive. Remember that you are not alone, and that help and support is available. Talk to someone about your worries. This could be a family member or friend, a member of your local dementia support group, or your GP can refer you to a counsellor in your area.
It is important for a carer's physical health and psychological wellbeing that they are able to take a break (respite) from care. Carers may also need respite care if they have to go into hospital or meet other important commitments.
Friends, relatives and neighbours can provide respite care at home. You can also arrange home respite care through home care agencies or, in some areas, your local authority. Care away from home can confuse some people with dementia, both while they are away and when they come back. If you decide on respite care away from the person's home, it is a good idea to visit beforehand to check that it meets the needs of the person with dementia.
Caring for someone with dementia can be frustrating and stressful at times, but there are many organisations that can help. For more details, call Carers Direct on 0300 123 1053. Lines are open 9am-8pm Monday to Friday and 11am-4pm on weekends, or search the directory for carer support organisations near you.
Reading Well Books on Prescription for dementia offers support for people diagnosed with dementia and their relatives and carers. GPs and other health professionals can recommend titles from a list of 25 books on dementia. The books are available for anyone to borrow for free from their local library.