There is so much help out there. But you will have to let people into your family. This can be hard if you’re private people. I decided from the beginning I cannot do this alone and opened up to it all.
- Elaine, supporting her husband Steve with frontotemporal dementia
Understandably, you may be reluctant to tell people about your diagnosis but there are some people and organisations that you are obliged to tell. If you are having difficulties completing paperwork or you feel unable to speak about your condition over the telephone, ask a trusted friend or family member to help you make contact with the people and organisations that need to be notified.
Who needs to know
The key organisations are those you have a legal or financial relationship with. For example, if you drive you must inform the DVLA and your insurance company, otherwise your insurance policy will be invalid. A diagnosis of young onset dementia does not necessarily mean you have to stop driving, but it is important that you make sure you are fit to carry on. You can find out more about driving with dementia here.
Managing your money
You or someone you trust to act on your behalf should also inform other insurance providers such as life, health, travel and home insurance. If you do not, your policy could become invalid. You (or someone you are close to) should also talk to your bank if you have concerns about managing your money or meeting your financial commitments, they have a number of ways they can help. You will need to talk to the Department of Work and Pensions if you receive benefits. Your ability to work could affect benefits such as child tax credit and there may be other benefits you are entitled to - our Financial and legal section has more details.
If your diagnosis could affect your safety at work or that of your colleagues, you should let your employer know as soon as you are diagnosed. It may be a contractual obligation so check your work contract when deciding at what point to tell your employer. Discrimination and stigma are sadly still an issue for some people when sharing a diagnosis at work. This can present a challenge and you should discuss any issues you face with your employer.
If you are supporting someone with young onset dementia, it may be beneficial to tell your own employer as you may need unscheduled time off, flexibility in your working hours or just understanding if your emotions affect your working day.
For more information, visit our Working & volunteering section.
School and university
Children will decide for themselves which of their friends, if any, they want to tell. But it can be extremely helpful for staff at their school or university to know. They can then accommodate unexpected absences, provide extra support and change the way they communicate with you as parents if need be.
The benefits of telling your GP
Your GP should receive notification via the NHS if you are diagnosed with young onset dementia, but you should still ensure that they are aware of your diagnosis. When you visit the doctor, it can be helpful to take someone with you to appointments, or if necessary ask them to write a list of things for you to discuss, or to make notes of what the doctor tells you. You can always ask for a double length appointment to make sure you have enough time to discuss things fully and understand any information your doctor gives you. Once your GP knows about your dementia diagnosis, they can then be more flexible and understanding in their approach if you need support around other health matters.
If you support someone with dementia, caring for them can be tiring and stressful which can take a toll on your health. It is important that you look after yourself. You can register with your surgery as a carer so that they know you may need extra support or appointments at short notice.
Other people you might consider telling
Visits to places such as the optician, dentist and hairdressers may be easier if they are made aware of your diagnosis in advance. People will then be better able to support you and make you feel comfortable and reassured during your appointments.
There may also be local people you see frequently such as your neighbours, postman / woman or staff in shops you visit often who you might decide to tell in time. With knowledge of your diagnosis, they will hopefully be understanding and supportive should you need assistance when you are out.