What to Do After a Dementia Diagnosis: The First Few Weeks

In the first few weeks, ask the care team clear questions, start the legal papers while your relative can still make those decisions, and check what money help you can claim. You do not need to do everything in the first week. Take one step at a time.

Feeling numb, scared and unable to take it all in is a normal reaction. Keep your relative involved in each choice. These are their plans and their wishes.

This article is written for England. Rules differ in Scotland, Wales and Northern Ireland.

What should we ask the GP or memory clinic?

Ask for clear answers about what happens next, and write them down. Take someone with you if you can.

• Will there be follow-up appointments?
• Who will be our main point of contact?
• Who is responsible for coordinating care and support?
• What do you expect for my relative in the coming months?
• If there is medication, how is it taken, what are the side effects and how do repeat prescriptions work?
• Does the clinic offer counselling? Some memory clinics do.

Ask about driving too. A diagnosis does not necessarily mean stopping driving at once. But the DVLA and the car insurer must be told promptly.

If you notice new or worrying symptoms, or sudden changes, speak to the GP or call NHS 111. In an emergency, call 999.

Which legal papers should we sort out now?

An important paper to start early is a lasting power of attorney, often called an LPA. It is a legal document that names someone to make decisions for a person with dementia.

Any LPA should be set up while the person still has capacity. Capacity means being able to make that decision.

This is why it is worth starting soon. It keeps the choice with your relative. You do not need to panic, but do not leave it for later.

• Choosing an attorney (the person named in the LPA): Your relative can choose anyone they trust, usually a close friend or family member. The attorney must be over 18.
• Advance care plan: This records their future wishes for care and medical treatment.
• A will: A person with dementia can still make or change a will if they understand what they are doing and its effects. A solicitor can advise.
• Paperwork: Keep important papers easy to find.

This article does not cover how to make an LPA. Look for the official steps on gov.uk.

What money help might we be entitled to?

Check that you are claiming everything you may be entitled to. Do not assume you will not qualify. Rates and rules change, so check gov.uk for current figures and eligibility.

• Attendance Allowance and Personal Independence Payment (PIP): Both are worth checking. Check on gov.uk which one may apply.
• Carer’s Allowance: A carer may be eligible.
• Other help: This may include Council Tax reduction and NHS continuing healthcare (a type of NHS funding for care).

Your relative is also entitled to a free care and support needs assessment from the local authority (your council). You can apply through social services on GOV.UK. A GP or another professional can also refer them, with their consent.

Council services vary by area. They may include home care, equipment and home adaptations.

Our rights and benefits guide has more on money help. Our free care cost calculator may help you think about the cost of care at home.

Where can we find support in the first few weeks?

You can phone a helpline today. Check opening hours on each charity’s website first.

• Alzheimer’s Society dementia support line: 0333 150 3456.
• Dementia UK Admiral Nurse helpline: 0800 888 6678.

Admiral Nurses also offer virtual clinics by phone or video call. You can ask a dementia specialist your questions.

For local help, ask your GP, local authority, social worker, friends and family about support groups and services in your area. Other people who have been through this often have useful advice.

Read more on the NHS page for people just diagnosed with dementia.

How do I look after myself while caring for someone else?

Your wellbeing matters too. You can ask for support for yourself, not only for your relative.

Anyone who cares for a person with dementia is entitled to a carer’s assessment. To get one, ask your local authority. It looks at your needs as a carer.

Be kind to yourself about what you have not done yet. Ask family or friends to take on one small task. If you are struggling, a helpline above can listen, and your GP can talk with you about how you are coping.

Dementia UK also has a helpful next steps checklist.

What to do next

1. Write down your questions and ask whether there will be follow-up appointments.
2. Talk with your relative about who they trust to be their attorney, and look up the LPA steps on gov.uk.
3. Check Attendance Allowance, PIP and Carer’s Allowance on gov.uk.
4. Ask your local authority for a needs assessment for your relative and a carer’s assessment for you.
5. Phone one helpline and ask about a local support group.