A person with dementia and their primary carer playing Monopoly

Facing new challenges when caring: how 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 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 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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We live in a very rural community. Our lovely neighbour has had early dementia for @ 2 years + but her husband died 6 months ago. She has little contact with partly estranged family and no children. She has carers coming in now twice a day but apart from a couple of us taking her shopping every week and taking her out occasionally there is literally nothing for her to go to which is dementia friendly. The nearest suitable places are nearly an hour away. She desperately needs companionship as we can't be there all day and eve every day when the carers aren't there as we have our own families to care for and also work, although we do our best. Does anyone have any ideas as to what we can do to help her? She is very competent and has a lot of energy and no mobility problems.

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My husband lost his driving licence this month due to the progression of his Alzheimer’s. It was a very sad day after 58 years with a clean licence, but there are positives as well as negatives, I get some me time and exercise walking to the shops and back while my husband, David is still asleep. It’s not so easy getting David to have a walk every day.

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My mother has recently been diagnosed from a dementia, to alzheimer's patient. Her decline in every aspect over the last 6 months has been rapid. My father is her only care atm, and is a very proud man, despite his own physical ailments. My sister and I are their only other help who have pretty busy lives with work and family, and unfortunately our parents live over 150 miles away, not making it easy to get to them. My father is reluctant to get help, despite my mother being physical with him, as she has also me. He has absolutely no respite whatsoever, and was even asked to pick her up from a local respite place inside an hour, as they were unable to handle her. I have tried gently to help and advise, but I only see things getting worse, and myself and sister going to them a few times a month doesn't help the scenario that much. I can't sit back and watch my father take this any longer all the way to his grave, and as the son, I am not sure what my options are?? Without question she needs permanent care, but my father is reluctant at best. Any advice appreciated. Thanks Steve

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My husband has just been diagnosed with mild alzheimers and to be honest Ive gone into a panic where financial matters, Power of attorney and wills are concerned. Where do I go, do I go to a solicitor to sort it
out. How do I safe guide myself with our savings etc.

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Hi Margaret, I'm very sorry to hear about your concerns. If you call our Helpline one of our advisers would be glad to discuss it with you and offer advice.
Our Helpline is open Monday to Wednesday (9am-8pm), Thursday to Friday (9am–5pm) and Saturday to Sunday (10am-4pm), and can be reached on 0300 222 11 22.
Thank you

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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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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

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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

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What are the signs for early onset of dementia?

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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

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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

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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.

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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

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Could you send me one please might help me a lot

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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

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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.

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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.

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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.

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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)

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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

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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.

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