Coping with a dementia diagnosis: first steps and support

After a dementia diagnosis, the most useful first steps are to ask the memory service for written information and a named contact, tell people you trust when you feel ready, and put legal and financial plans such as a lasting power of attorney in place while the person can still make those decisions. Support is available straight away, and many people live well for years.

At a glance

• Feeling shocked, relieved, angry or numb are all common reactions. There is no right way to feel.
• Drivers must tell the DVLA and their insurer promptly; stopping driving is not automatic.
• Plan ahead early: lasting powers of attorney, a will, and wishes about future care.
• Helplines include the Alzheimer’s Society Dementia Support Line (0333 150 3456, charged at the standard local rate) and Dementia UK’s free Admiral Nurse line (0800 888 6678).
• In Scotland, everyone diagnosed is guaranteed a year of post-diagnostic support from a link worker.

What should you expect in the first days and weeks?

Diagnosis can bring a mix of feelings, for the person and for those close to them. The NHS notes that frustration can affect both the person with dementia and the people around them, and that talking openly about feelings is important. It is fine to take time before making decisions or telling everyone. If you have just come from a memory clinic appointment, you may remember little of what was said, so ask for the written information the NHS says you should receive.

NICE guidance says that at diagnosis people should be given spoken and written information on the type of dementia, who to contact for care, driving, legal rights, support groups and advocacy. If you did not receive these, ask your GP or the memory service. Our guide to how dementia is diagnosed explains who should be involved at each stage.

Who can you talk to for support?

• Alzheimer’s Society Dementia Support Line: 0333 150 3456, with Dementia Advisers who can talk through what a diagnosis means.
• Dementia UK Admiral Nurse Dementia Helpline: 0800 888 6678, free, open 9am to 9pm Monday to Friday and 9am to 5pm at weekends. People who have dementia, or suspect they do, can call as well as family and carers.
• Alzheimer Scotland 24-hour Freephone Dementia Helpline: 0808 808 3000.
• Peer groups, dementia cafes and singing groups: see our guide to dementia support groups in the UK.

In Scotland, the Scottish Government guarantees a year of post-diagnostic support. A link worker is allocated for at least a year and can help with understanding the illness, community connections, meeting others in a similar position, and planning for future decisions and support.

How do you tell family, friends and employers?

The NHS suggests sharing the news once you feel ready and explaining which tasks are harder, such as keeping up with conversations. You might say what the diagnosis means and how people can help. A GP, health or social care professional, or an Alzheimer’s Society support worker can help if you would like support with this. The NHS also suggests reassuring loved ones that you are still you.

Some people may act differently around you, often because they are uncertain or worried. Relationships can shift as symptoms progress, particularly if a partner or adult child becomes a carer, and the NHS points out that this can feel hard for both people.

At work, there is no general duty to disclose straight away, though some jobs require it, so check your contract. Under the Equality Act 2010, employers must make reasonable adjustments, such as changed hours or a less demanding role. Free advice is available from a Jobcentre Plus disability employment adviser, your trade union or Citizens Advice.

What about driving?

You must tell the DVLA about the diagnosis, and the NHS says you must also tell your car insurer promptly. You can report online or by posting form CG1. A fine of up to £1,000 can apply for failing to tell the DVLA about a medical condition that affects driving. A diagnosis does not mean stopping immediately, but the DVLA may ask for medical reports or a driving assessment. Read more in dementia and driving. Bus, coach and lorry licence holders must stop driving immediately.

Which legal and financial plans matter most?

NICE guidance asks professionals to discuss planning ahead early and at reviews, including lasting power of attorney, advance statements, advance decisions to refuse treatment, and preferred place of care. The NHS adds making a will. Doing this while the person has the mental capacity to decide is far simpler than the alternatives.

If there is doubt about whether someone can make a particular decision, see mental capacity assessments. Attendance Allowance is £114.60 a week at the higher rate and £76.70 at the lower rate. The council tax discount for severe mental impairment is explained in council tax discount for dementia, and the costs of future care in the dementia tax explained.

How can you stay well and active?

The NHS encourages people to keep up activities they enjoy for as long as possible, which may take longer or need adapting. Ideas include dementia-friendly exercise sessions, arts activities, reminiscence work, memory cafes and Singing for the Brain. NICE recommends group cognitive stimulation therapy for mild to moderate dementia; ask your memory service whether it is available. For mild to moderate Alzheimer’s, medicines such as donepezil, galantamine or rivastigmine may help some people with symptoms, but they do not stop the condition. Everyday aids such as clocks showing the day and date, pill dispensers and big-button phones can help with independence.

What help is there for family and carers?

Anyone over 18 can ask for a free carer’s assessment, which may recommend breaks, help with housework or links to local support groups. See carers assessments. Carers are at increased risk of depression according to NICE, so ask your GP about your own wellbeing too. When you are ready to think about what care may be needed later, our guides to stages of dementia care needs and dementia care at home are good starting points.

Frequently asked questions

Is it normal to feel overwhelmed after a dementia diagnosis?

Yes. Many people feel shock, worry or frustration, and some feel relief at finally having an explanation. The NHS advises talking openly about feelings and staying in contact with family and friends. A helpline adviser or your GP can also help.

Do I have to tell the DVLA?

Yes, if you hold a driving licence. You must notify the DVLA of a dementia diagnosis, online or using form CG1, and tell your insurer. You can be fined up to £1,000 for failing to report a medical condition that affects driving.

Should we make a lasting power of attorney straight away?

It is sensible to do so early, because the person must have the mental capacity to understand and make the appointment. NICE and the NHS both recommend planning ahead soon after diagnosis. A solicitor or the Office of the Public Guardian can advise.

Can someone with dementia keep working?

Some people can. The NHS says to tell your employer when you feel ready, and that employers must make reasonable adjustments under the Equality Act 2010. Get advice from your trade union, Citizens Advice or a Jobcentre Plus disability employment adviser.

What support do I get after diagnosis in Scotland?

The Scottish Government guarantees a year of post-diagnostic support for everyone diagnosed with dementia, delivered by a link worker who is allocated for at least one year. You can ask your doctor for a referral.

Where to get help next

Read about the different types of dementia and dementia life expectancy when you feel ready. For practical day-to-day advice, see caring for someone with dementia. To explore services in your area, use find care, or try the funding checker.

Sources

• NHS: Dementia and relationships
• NHS: Staying independent with dementia
• NHS: Activities for dementia
• NICE: Dementia (NG97), recommendations
• GOV.UK: Dementia and driving
• Alzheimer Scotland: Post diagnostic support

Reviewed by The Care Panel team on 9 November 2026. This guide is general information about care in England, not legal, medical or financial advice. Rules and rates change; check with your council or an adviser before making decisions.