After a diagnosis of dementia: next steps checklist

A diagnosis of dementia can be a big shock for the person with the condition and their family. It can be difficult to know what to do next – including what decisions need to be made, who to tell, and what support is available.

This checklist of the next steps to take after a diagnosis of dementia has been written by our specialist Admiral Nurses. You will also find links to further information that you can turn to as and when you need it.

Organise your medical appointments
  • Ask whether there will be follow-up appointments after the diagnosis
  • If yes, who will you see? How often? How should you make appointments?
  • Who will be your main point of contact?
  • Who will be responsible for coordinating care and support?

For more information, read our practical guide to getting the best out of GP and other health appointments.

Arrange a lasting power of attorney

A lasting power of attorney (LPA) is a legal document that nominates a person to make decisions on behalf of a person with dementia, if and when they no longer have the capacity to make these decisions themselves.

There are two types of LPA:

  • health and welfare
  • property and financial affairs

It is very important to draw up both types of LPA while the person with dementia still has the capacity to do so.

Find out more information on applying for an LPA here.

Find out more more information on capacity here.

Record your future wishes

Discuss plans and wishes for the future with your family, including:

  • your wishes regarding your future care
  • your wishes regarding your future medical treatment
  • your hopes about your involvement with activities

It is a good idea to compile an Advance Care Plan: a document that outlines a person’s future wishes for their care and medical treatment. For more information and an Advance Care Plan template, click here.

Apply for a Carer’s Assessment

Anyone who cares for a person with dementia is entitled to a Carer’s Assessment. This will identify what support is needed to help you in your caring role, such as home help for the person with dementia and aids and adaptations for daily living. You will need to request the assessment from your Local Authority.

Please see our information on the Carer’s Assessment for more advice.

Apply for financial support

People with dementia and their family carers may be entitled to various benefits, tax discounts or financial support, including:

  • Attendance Allowance
  • Personal Independence Payment (PIP)
  • Council Tax reduction or exemption
  • Carer’s Allowance
  • Disability Premium
  • Personal Budget
  • Personal Health Budget
  • NHS continuing healthcare (CHC)

It is important to make sure you are receiving all the financial help you are entitled to.

For more information about all of the benefits, exemptions and support you might be eligible for, please see Financial and legal sources of support and advice.

Organise your home so it helps you live safely and independently

There are lots of simple, practical steps that can be taken to help a person with dementia stay safe and comfortable in their home. Please read our guide to  Making the home safe and comfortable for a person with dementia.

Notify the DVLA and vehicle insurance company

You are legally required to inform the Driver and Vehicle Licensing Agency (DVLA) – or, in Northern Ireland, the Driver and Vehicle Agency (DVA) – and your vehicle insurance company of a diagnosis of dementia.

This may not automatically mean the person will have to give up their driving licence – for example, they may be issued with a short-term licence to be renewed after one, two or five years.

For more guidance, please see the Government’s guidance, or our information on Driving and dementia.

Inform your employer 

If you are diagnosed with dementia and still working, it is important to tell your employer so that steps can be taken to support you in your job.

Similarly, if you are caring for someone with dementia, telling your employer will help them support you in your caring responsibilities so that you can continue working and caring as effectively as possible.

Please read our information on employment and young onset dementia.

If you employ someone who cares for a person with dementia, read our guidance for employers.

Explore local services and support 

Ask your GP, Local Authority, Social Worker, and friends and family about support groups and services in your area for people with dementia and their carers. 

If you or the person you care for has young onset dementia, you can search our database for support groups. 

Keep on top of healthcare appointments

Make sure you or the person you care for books and attends their regular healthcare appointments. 

These include: 

  • eye tests 
  • hearing tests 
  • dental checkups 
  • podiatrist/chiropodist appointments 

Please see here for our leaflet on  staying healthy after a diagnosis of dementia, which includes space to record notes about your appointments. 

Download our next steps checklist

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How we can support you

Whether you have a question that needs an immediate answer or need emotional support when life feels overwhelming, these are the ways our dementia specialist Admiral Nurses can support you

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Publication date: November 2020
Review date: November 2022