Caring for someone with dementia can be challenging and stressful. But with the right support, it can be rewarding and often satisfying.
Support for you as a carer
You may not think of yourself as a carer, particularly if the person with dementia is a partner, parent or close friend.
But both you and the person with dementia will need support to cope with the symptoms and changes in behaviour.
It's a good idea to:
- make sure you're registered as a carer with your GP
- apply for a carer's assessment
- check if you're eligible for benefits for carers
- find out about training courses that could help you
Get a carer's assessment
If you care for someone, you can have an assessment to see what might help make your life easier. This is called a carer's assessment.
A carer's assessment might recommend things like:
- someone to take over caring so you can take a break
- training in how to lift safely
- help with housework and shopping
- putting you in touch with local support groups so you have people to talk to
A carer's assessment is free and anyone over 18 can ask for one.
Helping someone with everyday tasks
In the early stages of dementia, many people are able to enjoy life in the same way as before their diagnosis.
But as symptoms get worse, the person may feel anxious, stressed and scared at not being able to remember things, follow conversations or concentrate.
It's important to support the person to maintain skills, abilities and an active social life. This can also help how they feel about themselves.
How you can help
Let the person help with everyday tasks, such as:
- laying the table
- taking the dog for a walk
Memory aids used around the home can help the person remember where things are.
For example, you could put labels and signs on cupboards, drawers and doors.
As dementia affects the way a person communicates, you'll probably find you have to change the way you talk to and listen to the person you care for.
Help with eating and drinking
Eating a healthy, well-balanced diet is an important part of a healthy lifestyle for everyone.
People with dementia may not drink enough because they don't realise they're thirsty.
This puts them at risk of:
These can lead to increased confusion and make the symptoms of dementia worse.
Common food-related problems include:
- not recognising foods
- forgetting what food and drink they like
- refusing or spitting out food
- asking for strange food combinations
These behaviours can be due to a range of reasons, such as confusion, pain in the mouth caused by sore gums or ill-fitting dentures, or swallowing problems (dysphagia).
How you can help
Involve the person in preparing the meal if they're able to.
Try these tips to make mealtimes less stressful:
- set aside enough time for meals
- offer food you know they like, and in smaller portions
- be prepared for changes in food tastes – try stronger flavours or sweeter foods
- provide finger foods if the person struggles with cutlery
- offer fluids in a clear glass or coloured cup that's easy to hold
Make sure the person you care for has regular dental check-ups to help treat any causes of discomfort or pain in the mouth.
Help with incontinence and using the toilet
People with dementia may often experience problems with going to the toilet.
Problems can be caused by:
- urinary tract infections (UTIs)
- constipation, which can cause added pressure on the bladder
- some medicines
Sometimes the person with dementia may simply forget they need the toilet or where the toilet is.
How you can help
Although it may be hard, it's important to be understanding about toilet problems. Try to retain a sense of humour, if appropriate, and remember it's not the person's fault.
You may also want to try these tips:
- put a sign on the toilet door – pictures and words work well
- keep the toilet door open and keep a light on at night, or consider sensor lights
- look for signs that the person may need the toilet, such as fidgeting or standing up or down
- try to keep the person active – a daily walk helps with regular bowel movements
- try to make going to the toilet part of a regular daily routine
If you're still having problems with incontinence, ask your GP to refer the person to a continence adviser, who can advise on things like waterproof bedding or incontinence pads.
Help with washing and bathing
Some people with dementia can become anxious about personal hygiene and may need help with washing.
They may worry about:
- bath water being too deep
- the noisy rush of water from an overhead shower
- getting undressed in front of someone else, even their partner
How you can help
Washing is a personal, private activity, so try to be sensitive and respect the person's dignity.
Try these tips:
- ask the person how they'd prefer to be helped
- reassure the person you will not let them get hurt
- use a bath seat or handheld shower
- use shampoo, shower gel or soap the person prefers
- be prepared to stay with the person if they don't want you to leave them alone
Dementia can affect people's sleep patterns and cause problems with a person's "body clock".
People with dementia may get up repeatedly during the night and be disorientated when they do so. They may try to get dressed as they're not aware it's night-time.
How you can help
Sleep disturbance may be a stage of dementia that'll settle over time.
In the meantime, try these tips:
- put a dementia-friendly clock by the bed that shows whether it's night or day
- make sure the person has plenty of daylight and physical activity during the day
- cut out caffeine and alcohol in the evenings
- make sure the bedroom is comfortable and either have a night light or blackout blinds
- limit daytime naps if possible
If sleep problems continue, talk to your GP or community nurse for advice.
Looking after yourself
Caring for a partner, relative or close friend with dementia is demanding and can be stressful.
It's important to remember that your needs as a carer are as important as the person you're caring for.
Ask for help
Family and friends can help in a variety of ways: from giving you a break, even if it's for only an hour, to taking the person with dementia to an activity or memory café.
Charities and voluntary organisations provide valuable support and advice on their websites and via their helplines:
- Alzheimer's Society's Dementia Connect support line on 0333 150 3456
- Age UK Advice Line on 0800 678 1602 (free)
- Independent Age Helpline on 0800 319 6789 (free)
- Dementia UK's Admiral Nurse Dementia Helpline on 0800 888 6678 (free)
- Carers Direct helpline on 0300 123 1053 (free)
- Carers UK Helpline on 0800 808 7777 (free)
- Dementia Carers Count has a virtual carers centre that provides a range of online support and resources
Talk to other carers
Sharing your experiences with other carers can be a great support as they understand what you're going through. You can also share tips and advice.
If it's difficult for you attend regular carers groups, join one of the online forums:
The healthtalk.org website has a collection of tips and video interviews with people who care for someone with dementia which you may find useful.
If you're struggling to cope
Carers often find it difficult to talk about the stress involved with caring. If you feel like you're not managing, don't feel guilty. There's help and support available.
You may benefit from counselling or another talking therapy, which may be available online.
Talk to your GP or, if you prefer, you can refer yourself directly to a talking therapies service.
Take a break from caring
Taking regular breaks can help you to look after yourself and better support you in caring for someone with dementia.
Family and friends may be able to provide short breaks for you to have time "just for you".
Other options include:
- day centres – social services or your local carers' centre should provide details of these in your area
- respite care – this can be provided in your own home or for a short break in a care home
There are dozens of dementia research projects going on around the world, and many of these are based in the UK.
Much of the research is aimed at understanding the causes of dementia and developing new treatments.
But there's increasing recognition of the role of carers in helping someone stay independent with dementia and what their needs are.
You can sign up to take part in trials on the NHS Join Dementia Research website.