Talking about your dementia

Anyone receiving a piece of news, whether good or bad, has to decide who with, and when to share the information.

In some cases, these decisions may be very straightforward. However, when the news is a diagnosis of dementia it is common for people to spend a lot more time considering who among their family and friends to tell, and when. This page suggests some things to consider when talking about your diagnosis.

Coming to terms with the diagnosis

One of the steps in discussing a diagnosis is to come to terms with the information in your own mind. Many people may doubt the diagnosis or just need a period of time for the news to settle in. Family and friends may also go through periods of denial by ignoring your problems or minimising your concerns.

However, if you have been diagnosed with dementia, it is likely that a few close family members or friends have already guessed that something is happening. While there are no set rules, it is often helpful to share the diagnosis with those trusted individuals.

Making the decision to discuss the diagnosis

There are a number of questions you may be considering:

  • Who do I tell?
  • Do I have to tell anyone?
  • How and when should I raise it?
  • How will people respond to me after I tell them?

These are all difficult questions and there are no right or wrong answers. It can help to talk to someone outside the family. Your doctor or a counsellor will be able to listen to your views and discuss your options with you. Dementia Australia offers confidential counselling and support for people with dementia. Contact the National Dementia Helpline on 1800 100 500.

Discussing the diagnosis

Although the news may be difficult to absorb, some people feel relief that their problem has been identified. Discussing the diagnosis also means that you, and your family and friends, may be able to use community or medical resources for managing the dementia. Some people with dementia feel that letting other people know about their disease improves public education and sensitivity about dementia.

"I tell everyone – it’s nothing to be ashamed of.
People need to know that we’re just like them."

Public awareness of dementia is helped enormously by individuals willing to be open about their diagnosis. However, sometimes people are concerned about how they will be treated if others know of their diagnosis.

Everyone acts like they don’t want to get near me because they might catch it too. They don’t know what to do. People don’t know how to deal with it.

Many people may be familiar with this experience. Ignorance and uncertainty often breed fear and avoidance. For this reason, some people have mixed feelings about sharing the diagnosis. However, sometimes the opposite can be true. Public awareness of the disease is increasing, and many people tell stories of the kindness of friends and strangers once they have found out about the diagnosis.

I don’t care who knows or doesn’t know. I don’t try to hide it. Well, yes I do. I do try to hide it. You make a mistake or something and you try to hide it. I think it’s natural. You don’t want to appear to be less than you want to be. You want to appear as strong as you could be.

It is important to respect your own need for privacy while also acknowledging the importance of letting others know about your diagnosis. It can be very helpful to rely on a few caring or understanding people to see you through the adjustments.

Sometimes, you may find that family members have shared your diagnosis without your consent. This can lead to mixed feelings – from relief that it was done for you to anger that you were not in charge of the decision. But remember, your family also need people to support them through this time, and sharing the news of your diagnosis with friends and family can bring them comfort and assistance.

I’ve told my friends about Alzheimer’s disease. They are very quiet. They don’t know what to say. I don’t know what to say. I think they understand because I’m telling them why it is so hard and the impact the disease has. They listen.

You can’t always predict how others will respond to your news and while some may shy away when they hear the word dementia or Alzheimer’s, you may also make new friends as a result of sharing the diagnosis.

Further Help

The Living With Dementia series is available in each state and territory. The program – designed specifically for people in the early stage of dementia, their family members and friends – provides information and support as well as an opportunity to meet others in a similar situation. The program has a positive focus on maintaining and enhancing skill and abilities and exploring ways of managing now and in the future.

There are many benefits from taking part in a Living With Dementia series. Most people enjoy the chance to obtain information, have questions answered, talk confidentially with others in a similar situation, discuss experiences and express feelings in a safe environment.

It’s good to know there are others in the same boat.
Sharing experiences halves my worries and concerns.
At this group you’re not a dot on the landscape. You can talk to other people who understand you.

You can find out more about the Living With Dementia series online, or by contacting the National Dementia Helpline on 1800 100 500.

Peer support

Dementia Alliance International (DAI) offer peer-to-peer support programs to people with dementia so that they can access small groups of people with a diagnosis of a dementia. These groups, which include people from all over the world, meet regularly to discuss their experiences and problems but also their strategies for coping with the diagnosis and living more positively with dementia.