What to do if you have just been diagnosed with dementia
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Symptoms and diagnosis
Living with dementia
Care and support
How you can help
If you have just been diagnosed with dementia, you may be feeling numb, scared and unable to take everything in.
Give yourself time to adjust to what a dementia diagnosis means for you.
You may find it helpful to talk to a counsellor at the memory clinic if they offer this kind of support.
You can also contact a helpline of one of the dementia charities. Try:
- Alzheimer's Society's National Dementia Helpline on 0300 222 1122
- Dementia UK Admiral Nurse Dementia Helpline on 0800 888 6678
If you can, talk to family and friends about your feelings around a dementia diagnosis.
When you feel ready, it's time to create an action plan for the future while you're still able to make clear decisions for yourself.
Your local authority has a duty to carry out a care and support needs assessment to establish which services you may need.
To arrange an assessment, contact social services or your GP.
For further information, read Alzheimer's Society's guide to care and support assessments.
Services and support
Find out what's available locally so you're prepared and able to call on this support as and when you need it.
Services arranged by local authorities vary between areas, but may include home care services, equipment and adaptations for your home.
Some services, such as community nursing, are arranged through the NHS. Ask your hospital consultant or GP for details.
Read more about what to expect from social services and the NHS and where to find sources of help and support for people with dementia.
Make a will
It's a good idea to make a will if you have not already. This ensures that when you die, your money and possessions go to the people you choose.
A person with dementia can still make or change a will, provided you can show that you understand what you're doing and what the effects will be. Your solicitor can advise if this is the case.
Read more about dementia and legal issues, including making a will.
Put your papers in order
Make sure all your important papers can be found easily. These might include bank and building society statements, mortgage or rental documents, insurance policies, your will, tax and pension details, bills and guarantees.
Consider setting up direct debits or standing orders for your regular bills. This means they'll be paid automatically from your bank account each month.
Make sure you're claiming all the benefits you're entitled to.
In particular, check whether:
- you're eligible for Personal Independence Payment or Attendance Allowance
- your carer (if you have one) is eligible for Carer's Allowance
Other benefits you may be eligible for include income support, housing benefit, council tax relief and pension credit.
Age UK has useful information on benefits and how to claim them.
Lasting power of attorney
You can appoint 1 or more people as "attorneys" to manage your affairs, including your finances, property and medical treatment, should it become necessary.
You can choose anybody you trust to be your attorney – usually a close friend or family member – but they must be over 18.
Advance care planning
You may wish to make an advance care plan so you can have a say in your future medical care or where you'd prefer to be cared for.
Making an advance decision enables you to refuse, in advance, a specific medical treatment or procedure should you become unable to decide for yourself.
A diagnosis of dementia does not necessarily mean you have to stop driving immediately, but you're legally required to inform the DVLA and your car insurance company promptly.
The DVLA will contact your hospital consultant or GP for further information on whether you can continue to drive safely.
Read the Alzheimer's Society factsheet on driving and dementia (PDF, 941kb) for more.
Take care of your health
It's important to look after your physical and mental health when you have dementia:
- Depression is very common in dementia. Talk to your GP, as there are a range of treatments, including talking treatments, that can help.
- Eat a healthy diet.
- Exercise regularly. This could be a daily walk, gardening or trying tai chi.
- Ask your GP if you'd benefit from flu vaccination and pneumonia vaccination.
- Have regular dental, eyesight and hearing check-ups.
See your GP if you feel unwell, as things like chest or urine infections can make you feel very confused if not treated promptly.
Create your life story
Memory books can be a helpful way of stimulating your memory and reconnecting you with your loved ones in the future.
Essentially, it's a "This Is Your Life" compilation of photographs, notes and keepsakes from your childhood through to the present day. It can be either a physical book or a digital version.
You may also want to create a digital or online playlist of your favourite musical soundtracks.
Dementia books on prescription
Reading Well Books on Prescription for dementia offer information for people diagnosed with dementia, as well as their relatives and carers.
GPs and other health professionals can recommend titles from a list of 25 books on dementia.
The books are available for anyone to borrow free of charge from their local library.
The books are also available to people who may be worrying about dementia symptoms but do not have a formal diagnosis.
Page last reviewed: 19/04/2018
Next review due: 19/04/2021