Living with Dementia

Dementia is the broad term used to describe a number of conditions that affect the brain. Click here to find out more about the different types of dementia

Many people can, and do live well with dementia by recognising the impact that it can have on all areas of their life and taking steps to address this

Understanding what to expect can also help

I Have Been Diagnosed With Dementia

Getting a diagnosis of dementia may have come as a shock.
Try your best to stay positive and know you are not alone - support is all around you!

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No matter how much you may have been expecting a diagnosis of dementia, it may still have come as a shock. It is hard for everyone concerned and reassurance and support are vital. The most important thing is to try and be positive and to know that you are not alone. There are people you can talk to and support and services that can help

Once the necessary tests were completed, or sometimes before the tests, you should have been asked if you wanted to know your diagnosis. You should have been given an explanation about what having dementia might mean for you. It is important that you were given time to talk more about the condition and given the opportunity to ask any questions you may have had

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If you decided that you wanted to know your diagnosis

Your Doctor or a member of their team should have told you
  • The type of dementia you have or if they are unsure about this, what plans to investigate further will involve. If a diagnosis is not clear, you may be reassessed again after a period of time
  • Details about symptoms and how the illness might develop
  • Appropriate treatments which might be offered to you
  • The name of a health or social care person who will coordinate the different kinds of support you need

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  • Care and support services in your area
  • Local support groups and voluntary organisation for people with dementia and their families
  • Local advocacy services
  • Practical advice about continuing to drive or your employment if this applies to you
  • Where you can find financial and legal advice
I’m a carer / know someone living with dementia

Caring for someone living with dementia isn’t the end of life as you know it but more about finding a different way of living your life together

Being a carer

You may find it difficult to see yourself as a ‘carer’ as to you the person is your partner or spouse, family member or friend. You are not alone as many people feel this way and it is your choice whether you use the term ‘carer’. Even if you may not identify with this term, it can be a good idea to use it when you are talking to a professional as it can help you to access the right support

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It is likely that taking on the role of supporting a person living with dementia will have a big impact on your life. Although it can be positive and rewarding, it can also present challenges and is likely to affect how you are feeling. You may find things difficult at times or feel unsure about the future and how you will cope

Everyone needs support from time to time and you should not feel guilty about asking for help. Ask for help so that you can carry out the important role of supporting the person. It is likely that you know the person well, perhaps better than anyone else, and that will help you to look after their individual needs

Undoubtedly caring does have challenges, so it is essential to get support. Support from expert professionals and from understanding friends, relatives and neighbours makes a massive difference. Do not be afraid or ashamed to ask for help and advice whenever you need to. It is a good idea to tell your GP that you are now caring for someone with dementia. This means that you can register as a 'carer', which may be useful for a number of reasons, for example:

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There are benefits
  • With the person’s permission, your GP may share information with you about their care and treatments
  • They can give you helpful information about where you can get support
  • You may be able to get appointments at times that are more suitable for you
  • You may be able to get free annual health checks and flu vaccinations
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Dementia PALs (Peer Assisted Living) Community

Everyone’s experience of caring for someone living with dementia is unique, but there is a great deal of common ground too. There is something invaluable in being in touch with and being able to talk to other people who know what it is like to live with and care for someone living with dementia. Our support community 'Dementia Pals' is a reassuring place where you know you can chat safely to people who are in similar circumstances to you, without being judged

Talking to other people and listening to other people’s views and experiences can help you understand better. You can help others along the way by sharing your experiences – good and bad

If you would like to join and be a part of the Dementia Pals Community or would like more information, please contact us

Looking After yourself

Living with and caring for someone living with dementia can have a big impact on your mental and physical health and wellbeing. It is important that you look after yourself!

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Remember to
  • Eat balanced meals and drink 6-8 glasses of liquid every day
  • Keep physically active e.g. walking, gardening or exercising
  • Keep mentally active e.g. reading, doing puzzles or crosswords
  • Make time for yourself e.g. hobbies, interests, anything you find enjoyable
  • Get enough sleep e.g. you may find it helps to sleep when the person living with dementia is sleeping. Even a short 'power nap' for about 20–30 minutes can help you to be more alert again. If you have difficulty getting enough sleep, try to avoid alcohol and caffeine in the evening

Additional Resources

Additional resources and support can be found here

How can you help

We welcome ideas for raising funds to help us provide further support and training. Please contact us if you want to share your ideas or would like to get involved with our activities

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