Dementia Support Line
Facing new dementia challenges? Our guide can help
If you are the main person supporting someone with dementia, our guide is for you. Read how it can support you when facing new dementia challenges.
Caring for a person with dementia can be a rewarding experience. But we also know that it can be very challenging at times. As dementia progresses, the person may show changes that you haven’t experienced before, or weren’t expecting.
This can be daunting, but our free guide can help. Caring for a person with dementia: A practical guide contains information and advice on all aspects of supporting someone with dementia. This includes some common challenges, a few of which we've highlighted below.
Five challenges of dementia care our guide can help you with
1. When the person doesn’t accept their diagnosis
It can be very difficult both for you and a person with dementia if they have received a diagnosis but don’t acknowledge it. They might put memory problems or other changes to their behaviour down to them getting older, or simply change the subject if you try to mention their condition. The guide includes information on denial and lack of insight with advice on how to manage this difficult situation.
2. You need a break from caring
Everyone who cares for someone with dementia will need to take breaks for their own health and wellbeing, and to help them to carry on caring. Making time for yourself and looking into replacement care will enable you to do this, and you’ll find information and advice on this and other ways to look after yourself.
3. The person’s behaviour changes
One of the most difficult aspects of dementia is often when people start to behave in ways that others find hard to understand. This can be very challenging both for the person with the condition and for you as someone caring for them. Tips in the guide include advice on managing any changes in behaviour as well as specific tips on responding to someone who behaves aggressively or regularly leaves home to walk about.
4. The person’s personal care needs change
As dementia progresses, a person will often need more support with personal care. One of the most challenging aspects of this can be if someone develops continence issues. You’ll find practical advice on daily personal care as well as tips for reducing and managing any continence issues.
5. Deciding where the person will live
When a person is in the later stages of dementia there can be some very difficult decisions to make, such as whether they should move into a care home or another supported living arrangement. The guide includes information on different housing options and advice on coping with these changes.
Throughout the guide you’ll also find a wealth of information on many other issues you may face when caring for a person with dementia along with details on where to go for further advice or support.
More than 140 carers contributed to this guide, as well as health and social care professionals and other experts with specialist knowledge and experience.
For the support you need as a carer, turn to this guide.
View or order the guide
Caring for a person with dementia: A practical guide is available to download or order for free. Choose how you would prefer to receive it.
Sarah Haskins
saysA very useful guide which I would like to provide to patients carers within the community hospital, especially when they have received a new diagnosis of dementia.
Gillian
saysI look after my partner who is 88 he has Alzheimer's hisMother Father and two brothers are dead but he keeps on wanting to phone them and will not accept they are gone.He gets quite angry with me and calls me a liar this sometimes becomes a problem. Most of the time I cope ok.
Margaret Battye
saysHi Gillian, sorry to hear your difficulties. I have the same issue wi th my mother who is 88 and has vascular dementia. Initially I was not sure how to handle this. I accessed some free dementia training on line which covered this Problem. The advice is to be in the moment with your loved one, they believe that their relatives are still alive and it is more upsetting for them to be told otherwise. The training called this a “Therapeutic Lie” when my mum asks if I have seen her parents lately or asks wher her husband is (he died over 20 years ago) I respond by saying either that they are busy working or I have not seen them lately. I find that with a change of subject my mum is happily appeased. It would be too traumatic to keep repeating that they are now dead as this would have to be every day. The training really helped so I would suggest you look on line for a similar course.
I hope this helps you as I know how distressing this can be to both you and your family.
STAN
saysWhat do you do when a care home is not doing it right.
Hi Stan, sorry to hear you're having issues with a care home. We'd need a little more information about your situation to advise you on this matter, but please contact our helpline on 0300 222 11 22 who can discuss it with you.
You can find more details about the helpline, including opening hours, here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
S.Meredith
saysPlease direct me towards specific research relating to the experiences of family carers of people living at home with dementia.
Thank you
Hi there, thanks for you comment.
In terms of research, all of the projects that we're currently funding are listed here: https://www.alzheimers.org.uk/research/our-research/research-projects/c…
If you go to the blue tab titled 'improving care and diagnosis' you'll be able to see the ones that relate specifically to care.
However, if you're more interested in just hearing about the experiences of those family carers, you might want to try our online community instead. There's a forum there which is specifically for those caring for people living with dementia to share their experiences: https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementi…
We also have information and advice relating to all aspects of dementia care on our website: https://www.alzheimers.org.uk/get-support/help-dementia-care
Hope this helps - if you have need any further advice or information please let us know.
Catherine Stutterheim
saysHaving recently had confirmation that I have early onset Amtzhieimers disease, I would be grateful to have a receive your information ( book or website) to infirm myself fully.
Address : Unit 25, 25 Robe Street, St Kilda, Victoria, 3182, Australia
Thank you very much !
Hi Catherine, sorry to hear about your diagnosis. Our Dementia Guide publication is a great starting point if you're looking to get more informed. You can download a copy here: https://www.alzheimers.org.uk/publications-about-dementia/the-dementia-…
If you're looking for information about something more specific, you could also try contacting our helpline (https://www.alzheimers.org.uk/get-support/national-dementia-helpline). Or feel free to ask here and we'll try and point you in the right direction!
-Alzheimer's Society blog team
Mrs Mitsuko bennett
saysI am the carer of my husband. I get much enjoyment from looking after him . I hope one day everyone feel the same . We have a living carer he is calm , smiles often , talk I am very grateful that he is with me.
Derek Hobbs
saysIt's is wonderful to have an organisation such as yours, it is extremely helpful to those of us who care for an elderly relative or person.
Michelle
saysA great source of information.
However, in section 5 I can't see any reference to a Dementia care advisor or Dementia support worker. I work as a Dementia care advisor and the service offers on going support to those with dementia and their carers. The service is available in most areas and is provided by Local Authorities or Alzheimer's society.
Alzheimer's Society
saysHi Michelle, thank you for your comment and for highlighting the role that dementia advisers and support workers can play. There is some information about the support that they can provide in section 9, ‘Alzheimer’s Society services and support’. As with all feedback we receive, your suggestion will be considered when we next update the content for the guide.
Shelly Deegan
saysHow the hell do you get A Care Home when you have no money?
Alzheimer's Society
saysHi Shelly, you can find information about selecting and moving in to care homes on our site here: https://www.alzheimers.org.uk/get-support/publications-and-factsheets/s…
Also, our Helpline advisers are happy to answer any questions, you can call 0300 222 11 22 to talk to someone.
Glyn
saysBless all people caring for loved ones.its so demanding but hang in there.
There is help if you go looking for it,this pdf is very useful in that regard
Jack Stone
saysGreat Idea and a wonderful way to support folk
Harry day
saysI am getting very bad at remembering things very soon when I have planned what to do I am also dropping things and knocking myself . Your comments please.
Alzheimer's Society
saysHi Harry, I'm sorry to hear you are having these memory concerns. We have information on our site here you may wish to read: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/wor…
Please also feel free to give our Helpline a call on 0300 222 11 22 for advice and support.
Thank you.
Yvonne Brampton
saysHello. i am carer for my 86yr
old husband who has dementia and Alzheimer's
the carers book would really help. could you please send me a copy.. many thanks
Alzheimer's Society
saysHi Yvonne, we'd be happy to send you a copy. You can order one via this form: https://www.alzheimers.org.uk/form/order-free-publications
Please fill it out and select: Caring for a person with dementia: A practical guide (600)
Thank you
Ann brooks
saysMy mum is in very late stage dementia
Phelippe
saysI find my wife is withdrawing from physical contact. Is this quite usual?
Alzheimer's Society
saysHi Phelippe, we have information about changes in behaviour on our site here: https://www.alzheimers.org.uk/about-dementia/symptoms-and-diagnosis/sym…
You may also wish to talk to one of our Helpline advisers for support, you can contact us on 0300 222 11 22
Thank you