Dementia Carers
There are 944,000 people living with dementia in the UK and the numbers are set to rise rapidly as our population ages. According to the Alzheimer’s Society unpaid carers supporting someone with dementia save the economy a staggering £11 billion every year.
Caring for someone who has dementia can be a challenging experience. It is common for carers to feel frustrated and guilty. Many carers feel they’re not doing a good job but it’s really important to remember that there is no such thing as a ‘perfect carer’.
Looking after someone with dementia
As dementia progresses there are some things which can help manage day to day living.
- If communication becomes challenging you might find simple things like using shorter sentences can help. Some great tips from the NHS here.
- Keeping your house dementia friendly can also make life easier – and help you worry less. For example, have good lighting and try things like brightly coloured cloths and towels. Useful tips from the NHS here.
- You also may want to think about ways to keep the person you care for safe. On the Carers UK site, read James’s account of the items that helped when he supported his mother
I let him do anything he can still safely do – get dressed, put the bins out, etc. He can even make scrambled eggs for himself in the morning still. I also get him to go and get a pint of milk at the local shop. All these things keep him feeling independent. Even if he makes his bed and I have to go and make it afterwards, he’s done something, he’s active, and has a sense of achievement. He doesn’t feel quite so worthless.
Looking after yourself
People often say that receiving a dementia diagnosis for a loved one is an enormous shock but it’s important to remember that people with dementia can continue living well. However it’s crucial that you take care of yourself too and make sure you are accessing everything you need.
- Eating well, getting enough sleep and exercise will all keep you feeling more positive about your situation. But if you do find you’re struggling it might be worth speaking to your GP.
- It can be particularly tiring caring for someone with dementia, especially as their condition progresses. Try to priorities all the tasks you need to do. What’s most important? What can you pass to others? Is there anything you can just not do? Acknowledge you are just one person. Help is out there, please ask us.
- Getting practical things sorted – like looking into an Attendance Allowance, having a Carers Assessment done, and registering with your GP as a carer – will ensure you are accessing the support you’re entitled to.
Find out more about looking after yourself here.
Free Surrey monitoring service for people with dementia and their carers
There’s a free service, from Surrey NHS and Surrey County Council, that will monitor the health of your loved one, automatically flagging any concerns, putting you directly in touch with the appropriate help, when needed. Read all about it and how to get referred here.
Free dementia monitoring service
Emotionally
Being the carer for someone with dementia can have additional emotional affects, particularly as the person you care for seems to change. You may feel a range of emotions – guilt, sadness, frustration, anger. But these are common feelings. Many others will feel the same as you, don’t feel bad about feeling them, but do try understand exactly why you’re feeling this way, and find out how to deal with your feelings.
Action for Carers can talk to you and advise on further sources of support. You could also talk to your GP, social worker or counsellor, or a close friend or understanding family member. Talking to other carers can really help – why not consider attending one of our dementia support groups?
It’s especially important to try and look after yourself, and find some time, even if it’s short, to do things you enjoy.
Try and keep going, and carry on doing what you’ve been doing. And hopefully your friends around you will accept this situation. It does mean you sort out people quite quickly (ie who will stick with you.) I don’t really think you should pretend they are alright. The more you talk about it, and are open, the more people will accept it. It’s more important to be honest, say how things are, even though it’s not easy. Just accept how the person is – and try and include them as much as you can.
Support from Action for Carers
We can talk to you about your caring situation and suggest ways to help, let you know about ACS events and support groups, as well as signpost you on to further sources of help, from the council. NHS and other charities and community groups.
Support groups
We have support groups running regularly across Surrey, including some just for carers of people with dementia. It’s a chance to talk to others who understand, and share tips and advice. They are very relaxed, informal get-togethers – and are usually either held at one of our Hubs (locations across Surrey), or online, via Zoom. Find out about our support groups here.
My wife was diagnosed with mixed type dementia. I was her full time carer for three years as she would not have any other carers in the house. My wife was admitted to a care home in July of this year, so I now live on my own. But I still come to the support group and share my support with others. Please talk to others – you are not alone, help is always on hand. Action for Carers Surrey has shown me I’m not alone.
Online forums
If you can’t get to a group, but can get on line, you may find the Alzheimer’s Society’s ‘Talking Point’ useful. It’s a forum for people to chat, and has dedicated sections called ‘I care for a person with dementia’ and ‘I have a partner with dementia’. Both are very active and may be useful to you if caring for someone with Alzheimer’s or dementia.
Events
We often run events for carers of people with dementia or Alzheimer’s, such as information days or workshops, usually with guest speakers.
We also have general events that may help you, about looking after yourself as a carer, and social activities. Take a look at all our upcoming events.
I have found your sessions so helpful in understanding what my mother is going through and being able to meet her needs. I do not know how I would have coped without your help and support.’
Information and signposting
We can give you information and signpost you to other sources of support.
Dementia Carers Count
Dementia Carers Count is a national organisation that supports, advocates and campaigns for dementia carers. Find out more about their support on their website, including their Helpline 0800 652 1102.
Alzheimer’s Society
Dementia charity Alzheimer’s Society works to challenge perceptions, fund research and improve care, as well as offering support, help and advise.
This includes some localised support, including in East Surrey, Surrey Heath and Farnham. You can see what support is available near you here.
Call the Alzheimer’s Society’s helpline further information and help on 0333 150 3456.
Support line opening hours
Monday–Wednesday 9am–8pm
Thursday and Friday: 9am–5pm
Saturday and Sunday: 10am–4pm
i-Support for dementia
iSupport is a self-directed, online information programme for informal dementia carers, which was originally developed by The World Health Organisation. It’s free to use.
iSupport for South Asian carers in the UK
University College London has translated and adapted iSupport for use by South Asian carers in the UK, in collaboration with carers, healthcare professionals and community/carer organisations. iSupport is available in Bengali, Punjabi and Urdu via the UCL website. Summary posters in each language are also available to download from the UCL site.
m4d radio for people living with dementia
There’s a special radio station for people living with dementia and their carers. m4d radio is available 24 hours a day, 365 days a year, playing music that evokes memories. You simply choose your era, listen and enjoy.
