What should you expect after a dementia diagnosis

Receiving a dementia diagnosis can be a life-changing event, but knowing what support is available to you and what steps to take next can help you or a loved one process the diagnosis and plan for the future.

There are 944,000 people living with dementia in the UK. That’s roughly 1 in 11 people over the age of 65 and 1 in 71 in the whole population of the UK.  As this number is set to increase with an ageing population understanding what support is available for you or a loved one following a Dementia diagnosis can make all the difference.

The essential information you should get

After a dementia diagnosis, you should be made aware of the support available to you. This information should be explained to you and given to you in writing. You can also ask for it in a format you understand.

1. Your type of dementia and how it will affect you.
2. Any further tests, treatment, activities or therapies that might help you.
3. Who will provide your care, and how to contact them, including the professional who will coordinate your care.
4. Support groups and charities that can help you.
5. How dementia can affect your driving and what you need to do.
6. How your employer should support you if you work (or are looking for work).
7. Any research studies you could take part in.

If you don’t need this information straight away, you can ask for it later on.

What else should you talk about with your GP? 

• Consent – Do you agree to services sharing information about you? Who can they share information with, and what are you willing for them to share?
• Information – Do you know who to contact for more advice if your needs change?
• Future contact – You may not need any help or further appointments now. If that is the case, would you like to be contacted again and if so, when?

Next steps checklist

It’s not just health and care support you need to think about when diagnosed with dementia. To help you, Dementia UK has created a checklist to follow, which includes information on benefits and discussing plans and wishes with your family.

Dementia UK – After a diagnosis of dementia: Next steps checklist. 

Planning your care

Now

After your diagnosis, your GP should direct you to services that can give you more information and support. You should also be given the name of a professional who will coordinate any care and support you might need.

The future

Thinking ahead can feel overwhelming, but planning care can help ensure people know your wishes for the future. When you’re ready for this, you should be offered support and information to discuss your options.

Support for carers

Anyone with caring responsibilities for a person with dementia is entitled to a Carers’ Assessment. Your local Authority will carry this out. The Assessment will look at the impact of caring for a person with dementia and what support is needed. Take a look at Dementia UK’s guidance on Carers’ Assessments for more information.

As a carer, it is essential to think about your health and wellbeing. It is a significant adjustment, so you should take a look at the options available to you. These can include:

• Training
• Support
• Advice

More information

If you want more information on what to do after a dementia diagnosis, what signs or symptoms you should look for to get a diagnosis or what support is available to you or a loved one, then these useful links are a great resource.

• National Institute for Health and Care Excellence: Dementia – discussing and planning support after diagnosis
• Alzheimer’s UK provides information and support as well as dementia directory of local support services.
• NHS – Help and support for people with dementia

Local Support

• The East Sussex Healthcare NHS Trust – Dementia Care Team supports the care and needs of people with a dementia whilst in hospital, as well as offer advice and support to staff.
• Care for the Carers East Sussex offer as wide range of services to meet different carers’ needs.

Healthwatch East Sussex’ Information and Signposting Service

For help navigating health and social care services and support groups near you please contact our free and independent Information and Signposting Service.

Contact us by:

Telephone: 0333 101 4007 Monday – Friday (10am-2pm)

Email: enquiries@healthwatcheastsussex.co.uk

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