A person with dementia and their primary carer playing Monopoly

Facing new challenges when caring: how our new guide can help

If you are the main person supporting someone with dementia, our new guide is for you. Read how it can support you when facing new 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 new free guide is here to 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 caring challenges 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. 

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40 comments

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As a Dementia Friend Champion I can show it at sessions

I find my wife is withdrawing from physical contact. Is this quite usual?

Hi 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

My mum is in very late stage dementia

Hello. 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

Hi 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

I 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.

Hi 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.

Great Idea and a wonderful way to support folk

Bless 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

How the hell do you get A Care Home when you have no money?

Hi 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.

A 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.

Hi 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.

It'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.

I 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.

Having 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

Please 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.

What 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

I 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.

Hi 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.

A 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.

I have tried to order a caring for a person with dementia A practical guide (600) but I can't get past the entry of postcode and phone no: (incorrect format)

Hello June

We’re sorry to hear you’re experiencing problems with ordering the guide.

Please feel free to contact our Publications team via email ([email protected]) or try calling our National Dementia Helpline on 0300 222 11 22 to speak with one of our advisers about getting a copy.

We hope this helps

Hello. I am a carer for my dad who I live with. He is 84 in April and has many illness's including Alzheimers Disease of which he was told of in September 2013.
I have mental health illness's of my own including depression and anxiety disorder and have been advised by professionals including doctors to claim the Personal Independence Payment benefit. Before I go into claiming this very hard to get benefit from the government I would like to know are there Unpaid Carers in the UK who are caring for someone with Dementia who have been given this benefit. I feel all I will be told by the DWP is 'if you are capable of looking after your elderly and sick father you are capable of looking after yourself'.
I do not want to be wasting my limited time on claiming PIP when there is no chance of me getting it.

Hello,
Today my wife (Lilian) has been diagnosed with vascular dementia and Alzheimer’s. we are both in our 80’s. I have all ready received copies of factsheets 401&7, plus The Dementia Guide &your Memory Hand book. Please would you forward any other literature which I might find helpful. Thank you.

Hello Harry, thanks for getting in touch.
In addition to those resources, here are some other publications that may be of particular interest:
What is Dementia? (400)
What is Vascular Dementia (402)
The progression of Alzheimer’s disease and other dementias (458)
Council Tax (414)
Benefits (413)
Lasting power of attorney (472)
Understanding and supporting a person with dementia (524)
Carers: Looking after yourself (523)
Caring for a person with dementia: A practical guide (600)
Planning ahead (1510)
For more information, please contact our National Dementia Helpline on 0300 222 11 22 - our advisers can provide you with further details and additional support.
We hope this helps.

Could you send me one please might help me a lot

Hi Peter,
We would be glad to send you a copy of this guide - here's the order form where you can enter your delivery information: https://www.alzheimers.org.uk/form/order-free-publications Use this form to order a print copy of up to ten publications that we will send to you in the post.
Alternatively, here's a digital copy of the guide: https://www.alzheimers.org.uk/sites/default/files/2019-02/Caring%20for%…
We hope this helps.
-
Alzheimer's Society Blog Team

I do a live in care with a lady who as dementia she is lovely but her memory is going really quick it’s such a shame

My husband has Parkinsons and Parkinsons dementia and this can be very challenging. I recently attended a four week course run by York Alzheimer’s . It was extremely helpful and informative and I would thoroughly recommend it to anyone caring for a person with dementia. It was very useful knowing other people are also managing different situations to me.

My dad passed away at just 68 years of age it was heart breaking to see someone you love deteriorate so quickly and there was nothing you can do about it

What are the signs for early onset of dementia?

Hi Linda, thanks for getting in touch.
We have a section of the website that provides information and advice regarding young onset dementia, which you may find useful: https://www.alzheimers.org.uk/about-dementia/types-dementia/younger-peo…
We also have this information in factsheet format - it is available to download here: https://www.alzheimers.org.uk/sites/default/files/pdf/factsheet_what_is…
We hope this helps.
-
Alzheimer's Society Blog Team

Hi im looking after mum with Dementia and feel totally alone. I have googled local numbers for help and advice for Living with Dementia but feel i constantly get passed onto another number that gives me other numbers. I just want to be able to speak to and talk with other carers for support and advice. Mum has a need to go out everyday she enjoys socialising, whether to friends or day centre and I can't find anything where she can go every day. Please help

Hi Sandie,

I'm really sorry to hear about your mum and that you've been having to cope on your own - it sounds like there are a few ways we may be able to help!

First of all, if you ever want to speak to somebody for help, advice or emotional support, you can always call our helpline. The helpline number is 0300 222 11 22 and opening hours are available here: https://www.alzheimers.org.uk/get-support/national-dementia-helpline

You mentioned that you'd like to speak with other carers, so I'd definitely recommend having a look at our online community, Talking Point. There are a number of different forums for people in situations like yours, and you can either read the various threads or sign-up and ask a question for the community to answer. Take a look here: https://forum.alzheimers.org.uk/

In terms of getting support in your local area, at a day centre or activity groups, our online services finder is a good place to start. Just enter your postcode on this page and see what's available near you: https://www.alzheimers.org.uk/find-support-near-you

Hopefully these three things are helpful for you, but if you need any more advice or support don't hesitate to call our helpline or get back in touch.

Best wishes,
--
Alzheimer's Society blog team

Awesome! your ideas are very best. Your guideline is too good. Thanks for posting and keep posting that type of blog.

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