As with other conditions, there are organisations you must tell that you have been diagnosed with dementia and others that it is advisable to tell. Organisations you must tell and some recommended steps to take.


Having dementia does not necessarily mean you have to give up driving. However, if you wish to continue driving you must tell both the Driver and Vehicle Licensing Authority (DVLA) and your insurance company that you have been diagnosed with dementia. The DVLA need to know you are still safe to drive and will send you a questionnaire to assess your medical fitness to drive. This questionnaire is called a CG1 and can found online and downloaded by visiting the UK government services and information website and searching for CG1. They may then ask you to undergo a medical examination or some form of practical assessment. The DVLA will then ask for your consent to obtain medical reports from your doctor or other consultants relevant to your medical conditions. They will then decide whether or not to renew your driving licence, usually for a year at a time. You can be fined up to £1,000 if you don’t tell DVLA about a medical condition that affects your driving. You may be prosecuted if you’re involved in an accident as a result. Also be aware that your insurance may not cover you if you don’t let them know your changed circumstances. Driving without a minimum of third party cover is illegal. If you decide to stop driving, or are advised to do so by your doctor, inform the DVLA and return your licence to them.

Benefits, plus you and your employer

If you are claiming State benefits, such as Income Support, the providers will need to know about the change to your medical status. You may also find you are entitled to additional benefits. Equally, if you are not claiming any benefits you may now be entitled to some. In both cases, you may also be eligible for other forms of financial support, such as Council Tax reduction. Benefits and financial entitlements are a complex area. You could start by asking for advice at your local Citizens Advice Bureau (CAB) or visiting the benefits section of their website on the following web address: Other sections of websites you may find useful are the ‘Benefits’ section of the government website and the ‘Benefits and entitlements’ section of the Age UK website You should also contact your local council for advice.


If you are working and want to continue, you need to tell your employer of your diagnosis. You both need to discuss how your dementia might affect your work and consider the risks, as well as your capabilities and the advantages and disadvantages of you continuing work. Your employer has a legal duty (under the Disability Discrimination Act) to help you stay at work and to make reasonable adjustments. Discuss these with him or her. For example, this could include making your hours more flexible, providing any extra equipment to help you, or you moving to a simpler job. Be aware, that if you change jobs, this could mean a drop in income and pension entitlement. Both you and your employer could get help from the Access to Work Scheme This can provide help towards the costs of any extra help you need, such as equipment or a support worker. For more information, contact the Disability Employment Adviser at your local JobCentre Plus office. For details of your local office visit the Contact JobCentre Plus section on the government website, and use the local office search facility located at the bottom of the page. If you decide to stop work before you reach retirement age, make sure you get your appropriate pension entitlement for retirement due to ill health. It’s a good idea to have someone with you when discussing this with your employer. A union representative would be ideal, or a friend or colleague. You could also get advice from a solicitor who specialises in employment law.