2.3 Telling others about your dementia diagnosis

How will family and friends react?

Many people with dementia say that they struggle to tell other people about their diagnosis.

You may be worried how people will react. People have described a range of reactions by family and friends when they tell them that they have dementia.

• Family and friends are usually supportive. They listen, make useful suggestions, offer practical help and are understanding. Sharing your diagnosis can be a positive experience and may help you feel less alone and supported by those close to you.
• Sometimes family and friends can be overprotective. They may want to ‘wrap you in cotton wool’. They may think you need protection, but this can seem stifling. Explain that you value their support, but you also need your independence. You can suggest working together to reach a compromise.
• Some family and friends don’t know what to say and avoid the topic. This doesn’t mean they don’t care. They may feel awkward or embarrassed. However, it may also be a relief not to focus on dementia and wait for the right opportunity for you to bring it up.
• Some family and friends may not have a good understanding of dementia . They may make comments like “You don’t look like you have dementia”, or “You can remember when you were at school so why don’t you remember what we talked about five minutes ago?”. This may lead to not feeling believed or understood. Or you might understand it as the person not seeing you any differently.  Read Manage how others treat you to find suggestions to help them understand you better.
• Some family and friends become really upset at the news. People with dementia may find this unhelpful because they don’t want sympathy or pity or may find it a comfort that the other person cares so much.

Share your diagnosis, your way

There is no right or best way to share your diagnosis.

Many people choose to tell people face to face, or by telephone. Some people chose to share the news in letters or by email. One person told us she told people her diagnosis when she sent out her Christmas cards. Some people might ask someone close to them to share the news, if they don’t feel comfortable doing this themselves.

It might be helpful to think about and write down some of the things you want to say in advance. This could include talking about the support you might find helpful and what may not be helpful. Read more in Manage how others treat you and Managing difficulties at home.

“I’m no longer able to drive, so if you could offer me a lift when we go out, I’d really appreciate it”

“This is a useful website for finding out more about my dementia diagnosis, I have used it to make a personal plan, can I share it with you?”

“I may forget names, so be ready to help me out when I need it”

Some people will have questions about dementia. You may be able to answer them, but you can also direct them to the Alzheimer’s Society website and show them help sheets, or print out information. You may want to share your unique URL for your personalised Forward Toolkit from this site as an aid to start discussion.

Share your diagnosis – who and how to tell

‭You should be in control of sharing your diagnosis
It is up to you who you tell, when you tell them, and how. When you were told your diagnosis, someone close to you may have been there with you. It’s your news to share though, not theirs. If the person close to you wants to tell others you have dementia and you’re not ready, ask them to wait.

However you choose to share your diagnosis, it can help your friends and family to understand what you are going through, and how they can better support you. Sharing can explain changes in your behaviour or mood that other people may have noticed and can avoid any misunderstandings.

Tell your friends and family your diagnosis when you are ready
Some people choose to not tell anyone for many months, some people tell people gradually as they see them, some people tell everyone straight away. The circle of friends’ worksheet can help decide whom you’re going to tell about your diagnosis and plan what you’re going to say to them.

Many people start by telling the people they feel closest to. This might be your immediate family and close friends. These might be the people you want to talk to about your thoughts and feelings about having dementia, and the people who will support you most.

When you feel ready, you might tell friends and extended family, and may also share your diagnosis with acquaintances from clubs or groups.

Tell other professionals you have dementia
Telling other healthcare practitioners such as your dentist, optician or at hospital appointments about your dementia can be helpful. Most healthcare practitioners need an accurate medical history to deliver the best service for you. This includes knowing that you have dementia.

If they know you have dementia, they can make adaptations to the service they provide or make allowances to help. For example, you can ask for a written summary of your appointment and the things you need to do afterwards such as arrange blood tests or an x-ray. You could ask for a longer appointment or bring a support person with you.

Healthcare practitioners will keep your personal information, including your diagnosis, confidential
Not all healthcare practitioners will know much about dementia. People with dementia have told us that they may need to educate their healthcare practitioners about their dementia.  Find suggestions for talking to practitioners about your dementia in Manage how others treat you.

It might also be helpful to tell other professionals who help you with legal and financial planning such as your accountant or lawyer.

Tell other people in your daily life you have dementia.
You might also find it helpful to tell other people you meet and talk to regularly about your dementia. This could be the bus driver, supermarket staff, bank staff or hairdresser. They may be able to help by sending you reminders for appointments, helping you to make a payment or just giving you more time.

Some people with dementia prefer to wear a sunflower lanyard to let others know they have a hidden disability and may need extra time or help. Many supermarkets and banking staff have dementia awareness training that means they can help with practical things like allowing extra time with customers at the tills.

Read about Cheryl and David’s experience of wearing the sunflower lanyard

Tell your employer you have dementia

If you are employed or do voluntary work, you will be thinking about telling your employer. You might be worried about how they will react, particularly if you want to continue working.

In the UK there are laws that protect people with disabilities, including dementia, at work. The Equality Act (Disability Discrimination Act in Northern Ireland) protects you from being dismissed from work or forced into early retirement. It also calls for your employer to make reasonable adjustments to help you to continue working.

Read more about your rights at work with dementia and telling your employer here.
If your company has a human resources (HR) department, the HR staff might be able to help you understand your rights and work and help you talk to your manager.

You may also wish to talk with colleagues about your diagnosis. Your colleagues may have noticed that your work has changed. Explaining your diagnosis and how they can support you can avoid judgement from others if they do not understand how your dementia is affecting you.  You might be interested in reading Wendy Mitchell’s blog about telling her diagnosis to her colleagues.