Young onset dementia: next steps after a diagnosis

Young onset dementia is any type of dementia where symptoms develop at or under the age of 65.  

Many people consider memory loss to be the main symptom of dementia, but this may not be significant in younger people in the early stages.  

More commonly, symptoms include difficulties with:  

• thinking clearly 
• planning ahead
• organising their thoughts and affairs
• behaviour and emotions
• understanding language  

Dementia usually progresses over several years. There may be periods when the person’s condition seems to have stabilised, but over time, the deterioration will continue.  

Lasting power of attorney (LPA)  

Lasting power of attorney is a legal process where someone appoints a trusted person/people (‘the attorney’) to make decisions for them in their best interests if they become unable to make decisions themselves. This is called ‘losing capacity’.  

There are two types of LPA:  

• health and welfare 
• property and financial affairs 

 It is important for the person with dementia to make an LPA as soon as possible, while they can still make decisions and communicate their wishes.  

Without an LPA, appointing someone to take over their affairs can be a lengthy and costly procedure. 

For information on setting up an LPA visit gov.uk/power-of-attorney/make-lasting-power or speak to a solicitor.  

 Wills  

If the person with dementia hasn’t made a Will, it is important that they do so as soon as possible to ensure their money and possessions go to the people and causes close to their heart.  

For more information on making or revising a Will, visit dementiauk.org/freewill or gov.uk/make-will  

Finances  

If you or a family member or friend are diagnosed with dementia, it is a good idea to notify the bank or building society. 

They can offer support with managing finances, for example by limiting access to funds to help prevent overspending.  

It may also be useful to consult a financial adviser if you need advice on financial planning. You can search for regulated advisers at fca.org.uk  

Benefits  

A person with dementia may be eligible for benefits such as Personal Independence Payment (PIP) and a reduction in council tax. Family carers may qualify for Carer’s Allowance.  

To find out which benefits you might be entitled to, visit gov.uk/benefits-calculators.  

Employment  

If the person with dementia works, telling their employer about their diagnosis will help protect them from discrimination at work and enable support to be put in place. 

For some occupations, eg the military, healthcare and jobs that involve driving or working with machinery, it may be a contractual requirement to tell their employer.  

If you care for someone with dementia, consider informing your own employer so that they can support you too. 

If the person with dementia is struggling at work, speak to their GP about signing them off in order to access employment support and benefits.  

Driving  

A person with dementia is obliged to inform the DVLA (DVA in Northern Ireland) and their vehicle insurer of their diagnosis.  

This does not necessarily mean they will lose their licence – they may be asked to take a driving assessment, and/or be issued with a shorter licence (up to five years), to be reassessed after that time.  

The DVLA may ask the person’s GP or specialist if they consider the person fit to drive. 

For more information on driving and dementia, visit: 

• gov.uk/driving-medical-conditions (England, Scotland and Wales) 
• nidirect.gov.uk/articles/how-tell-dva-about-medical-condition (Northernhttp://nidirect.gov.uk/articles/how-tell-dva-about-medical-condition Ireland) 

The person may also be eligible for a Blue Badge, which allows people with health conditions or disabilities to park free of charge in accessible places such as on yellow lines and in disabled parking bays.  

For more information, visit gov.uk/apply-blue-badge  

These tips may help make life easier for the person with dementia and those around them.  

• Try to simplify daily routines, their home and work environment, relationships and responsibilities so life is more straightforward and easier to cope with 
• Share the diagnosis with family and friends so they can offer practical help and emotional support 
• Ensure the person with dementia carries a form of identity in case they get lost or need assistance away from home. This could be an ID card or a MedicAlert bracelet or pendant from medicalert.org.uk 
• Encourage them to wear a Sunflower lanyard to indicate that they have a hidden disability and may need support. Many shops, supermarkets, train stations and airports provide lanyards free of charge, or they can be purchased at hiddendisabilitiesstore.com  
• Create a Life Story: a detailed record of the person’s life (eg details of their diagnosis, family and friends, cultural and spiritual beliefs, work history, likes and dislikes etc). This can help people such as health and social care professionals understand more about them. For a template, please visit dementiauk.org/creating-a-life-story  
• Support the person with dementia to continue with work, hobbies and interests and maintain some independence 
• If you care for someone with dementia, register as a carer with your GP practice and theirs. The GP can name you as their ‘trusted person’ so you can help manage their medical affairs. It will also enable you to access carer support 
• Carry a ‘carer’s card’ so that if you become ill or incapacitated, the emergency services will be aware that you care for someone who may need help and support  
• Find out about young onset dementia groups and services across the UK that can support both the person with dementia and their family. There is a database of support services at dementiauk.org/find-support. Your GP can also advise you on where to find support, including help for children and teenagers who have a parent with dementia 

Admiral Nurse Dementia Helpline
0800 888 6678 (Monday-Friday 9am-9pm, Saturday and Sunday 9am-5pm)
helpline@dementiauk.org

Admiral Nurse Closer to Home clinics – pre-booked appointments by phone or video call
dementiauk.org/get-support/closer-to-home

Dementia UK information  

Young onset dementia section
dementiauk.org/young-onset-dementia

Capacity and decision-making
dementiauk.org/capacity-decision-making

Driving and dementia
dementiauk.org/driving-and-dementia

Information about dementia for children
dementiauk.org/get-support/ resources/children
dementiauk.org/dementia-books-for-children

Employment and young onset dementia
dementiauk.org/employment-and-young-onset-dementia

Finance and young onset dementia
dementiauk.org/finance-and-young-onset-dementia

Financial and legal sources of support and advice
dementiauk.org/sources-of-support-and-advice

Lasting power of attorney
dementiauk.org/lasting-power-of-attorney

Resources for parents
dementiauk.org/get-support/ resources/parents

Life Story work
dementiauk.org/creating-a-life-story

Changing relationships and roles
dementiauk.org/changing-relationships-and-roles

Looking after yourself as a carer
dementiauk.org/looking-after-yourself-when-you-care

Young Dementia Network  

A community of people living with young onset dementia, their family and friends, and professionals
youngdementianetwork.org

Other resources 

Age UK
ageuk.org.uk

Benefits and grants
gov.uk/browse/benefits (England and Wales)
mygov.scot/browse/benefits (Scotland)
nidirect.gov.uk/information-and-services/benefits-and-money/benefits-and-financial-support (Northern Ireland)

Carers Trust
carers.org

Dementia Carers Count
dementiacarers.org.uk

Living with dementia toolkit
livingwithdementiatoolkit.org.uk

MedicAlert ID jewellery
medicalert.org.uk

Pathways Through Dementia
pathwaysthroughdementia.org

The Law Society
solicitors.lawsociety.org.uk