May 14, 2018

Should you tell people about a dementia diagnosis?

Sharing the news of a dementia diagnosis might seem daunting. It can be hard to know how to broach such significant news, and you might be concerned about how people will react.

While there are good reasons to let people know that you, or someone in your care, has been diagnosed with the condition, the decision will depend on the individual. Some people will feel comfortable sharing the diagnosis with all, while others will prefer to keep the news to a select group of friends and family.

Should you tell people in the early stages of dementia?

Usually there is a lag between the time a person begins to show symptoms, and an actual diagnosis of dementia.

Early signs of dementia can include anxiety, apathy, or aggression that can be completely out of character. Outgoing people may suddenly become introverted, quiet people can become gregarious.

Once the condition is diagnosed, it can sometimes help friends and family explain changes in behaviour.

Why should you tell people?

By telling people about a dementia diagnosis, you can help them understand what it is like to be living with dementia, and they may be encouraged to learn more about it.

The more people know about dementia, the more they might be able to help, for example,

they will understand not to make sudden changes to routines they might have with the person.

Sharing the diagnosis can make socialising easier, as it can mean people are more understanding and tolerant.

Experts in the field say it’s best to try to continue leading a normal life after discovering you have dementia, and that is likely to be easier if you are honest and open with friends and family.

Dementia is nothing to be ashamed of

Sometimes feelings of shame can prevent people from letting others know they have dementia. 

But society is far more accepting and knowledgeable about dementia these days – people are unlikely to judge you harshly, and are much more likely to be accepting, understanding, and caring.

Though whether or not you choose to tell people is a personal decision, if you choose not to disclose the information it can mean you might feel isolated, and could even become depressed.

How should you tell people?

Choose a time when you are both not rushed. Give people time to take in the news. Some people might need a little time to get used to the idea.

Choose a quiet and private location where you can speak openly.

Sometimes it can be helpful to put your thoughts down on paper beforehand, to get your mind in order and to think about and plan what you will say.

Assure the person that you are still the same person. Tell them how living with dementia is likely to affect you so they can understand what you’re going through, and can help.

Once you have told people, keep in touch, and let them know how you are going.

Life doesn’t stop with a dementia diagnosis

Life doesn’t stop at the point of a dementia diagnosis – there is still a life to be lived. With open communication, the more likely it will be that friends and family can provide you with support, care and good company along the way.

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