Look After You
This is a long page, so we've put in headlines for navigation and buttons to show detailed text. Your browser's 'Find on page' function won't see everything unless you've shown it using this button:
Time management
You can feel overwhelmed with things to do and no time to do them, and that's a key source of stress. That's especially the case if you've been thrown into the carer role suddenly.
Flexible working
In the UK, note that carers are entitled to request flexible working.
Avoid impossible goals / timescales, and prioritise
Don't set yourself impossible goals, especially timescales, that can't be achieved. Make a to-do list and categorise things according to whether they're important / not; urgent / not; quick and easy / not. Concentrate first on things that are both important and urgent, and after that on things that are important but not urgent so that they don't become urgent. Avoid worrying as much about things that might seem urgent but aren't in fact important. Where there are things that are quick and easy, then even if they're not a high priority consider doing some of them anyway as a morale booster.
Enlist help
Do enlist help where you can:
Other family members
Unfortunately it often seems to come down to one person taking on the responsibility and others being happy to leave them to it. However, it may well be that they don't actually realise the amount of time you're putting in and that their help is needed and would be appreciated, so consider whether this may be worth bringing up with them more clearly. Others who live a long way away can still do some of the tasks, such as finding out about things and making arrangements.
Visiting carers
Visiting carers can help with some of the tasks, and at times of day you can't. In the UK this might be paid for by the Council. See our section on visiting carers.
Cleaner / shopper, supermarket deliveries, meals on wheels
See our section on other visiting helpers.
Day centre
See our section on day centres and social activities.
Good neighbours or local friends
If your loved one's lucky enough to have willing and trustworthy neighbours (or local and capable friends) these are a very valuable resource, probably best used sparingly to keep them in reserve. However, they could do quick things like put away a supermarket delivery (which could be sent to their address).
Analyse needs
Try to take time to analyse your loved one's needs. It's difficult, particularly at first when you feel all your time is taken up 'firefighting', but there are many little ways in which life can be made better and easier along the way. Making some improvements where they count the most can be a great morale booster. We hope this website will give you ideas and practical help.
Give some time to fun things
A great morale booster is to take just a little time to do some fun things with your loved one - see our section 'make time for fun things'.
Take care of yourself too
Your loved one needs you to (and would want you to) take care of yourself as well as of them - physically with enough sleep and mentally by finding a way that things don't get on top of you. Remember, you can't help them as you want if you're worn out and at your wit's end. Looking after yourself is also important to avoid increasing your own risk of developing dementia - see our section on how to reduce your risk.
When you're frustrated don't retreat to a 'growlery' as Charles Dickens would call it, to complain to the invisible gods at the situation - that's just liable to work up a bigger head of steam rather than to let off steam. Instead think of all the help you've been to your loved one, think of their smile, and look at photographs.
If you feel you're struggling to cope then recognise that you need to review the situation and change something. It's not a sign of weakness on your part - on the contrary it's a sign of how much you care and how much you've taken upon yourself. Talking through problems with someone who understands the situation can be both a therapeutic and a practical help, and there are many ways of getting support and advice, such as phone lines, online forums, and local support group meetings - see the next subsection.
How to get support and advice
In the UK, the following organisations provide support, advice and information via phone lines, email, webchat, online forums, or local support group meetings. The name of the organisation indicates its degree of specialism in terms of dementia, old age or general carer issues.
Outside the UK, searching for 'carer support' should bring up local organisations.
For bereavement support for you see the next subsection.
UK phone support / help lines
- Alzheimer's Society's Dementia Connect phone line, on 0333 150 3456 - for more information, including Text Relay and Welsh language numbers, see the Alzheimer's Society website information on Dementia Connect
- Dementia UK's Admiral Nurse Dementia Helpline, on 0800 888 6678 - for more information see the Dementia UK website, for their helpline
- Age UK's Advice Line, on 0800 678 1602 - for more information see the Age UK website under services - advice line
- Independent Age's Helpline, on 0800 319 6789 - for more information see the Independent Age website - helpline
- Carers UK's Helpline, on 0808 808 7777 - for more information see the Carers UK website, under help and advice - get in contact
- Carers Direct's helpline, on 0300 123 1053
UK email or webchat support / help services
- Dementia UK's Admiral Nurse Dementia Helpline has an online enquiry form service in addition to its phone helpline (above) - for more information see the Dementia UK website, for their helpline form
- Carers UK's Helpline has an email address, advice@carersuk.org, in addition to its phone helpline (above) - for more information see the Carers UK website, under help and advice - get in contact
- Carers Direct's helpline has both an online enquiry form service (Carers Direct / Serco website enquiry form) and a webchat service (Carers Direct / Serco website webchat) in addition to its phone helpline (above)
UK online support / help forums
- Alzheimer's Society Dementia Talking Point forum - for more information see the Alzheimer's Society website information on Dementia Talking Point
- Carers UK forum - Carers UK website, under help and advice - get in contact
UK local support / help group meetings
- the Alzheimer's Society's website lists groups according to where you are and what type of group you're looking for - see the Alzheimer's Society website directory to find support near you
- the Carers Trust website lists groups according to where you are - see the Carers Trust website, under local carer services
Bereavement support for you
Everyone is affected by bereavement differently, and there's no 'right way' or 'wrong way' to respond to bereavement. For those needing support, there are a variety of ways this can be obtained - see below.
Some people may feel bereaved during the course of their loved one's dementia, at the loss of shared memories and the loss of capabilities. Try to make the best of their capabilities now, and create new and happy memories, by sharing fun things with them - see our section 'make time for fun things'.
For how to support someone with dementia who's been bereaved, including deciding whether to tell them of the death, see our section on supporting bereavement of someone with dementia.
In the UK excluding Scotland
The charity Cruse provides support via their phone support line (0808 808 1677), webchat (Cruse website CruseChat), and local branches (see the Cruse website, under get support - contact your local branch).
In Scotland
The charity Cruse Scotland provides support via their phone support line (0808 802 6161), webchat (Cruse Scotland website, under how can we help - webchat) and email (support@crusescotland.org.uk).
Outside the UK
Searching for 'bereavement support' should bring up local organisations.