After a diagnosis

It’s totally normal to feel a wide range of emotions after being diagnosed with dementia. You might feel shock, sadness, frustration, relief, embarrassment, anger and loss. Living with dementia is a big adjustment.

Here are some ways to look after yourself:

  • Don’t deny your feelings: whatever they are, allow yourself to feel the way you’re feeling - good or bad.
  • Share your feelings: talk to trusted family/ whānau member, or a friend.
  • It’s okay to cry: it’s true what they say – tears can make you feel better.
  • It’s okay to laugh: laughing releases ‘feel-good’ chemicals in your body.
  • Write it down: some people find it helps to record their feelings and experiences.
  • Try something new: whatever it is, finding a new activity you enjoy will make you feel better – and it will stimulate your brain.
  • Get out and enjoy life: do something you enjoy and focus on how good that makes you feel.
  • Let it go: if you are finding it hard to remember something, don’t stress about it – focus on something else.
  • Be patient and kind to yourself: remember, no one asks for dementia to happen to them.

 Sharing news of the diagnosis

Telling your family/whanau and friends about your diagnosis of dementia may be difficult but they can’t give you the support you need unless you tell them what is going on. Like you, they may have noticed something hasn’t been right with you and a diagnosis can help your family/whanau and friends come to terms with what has been happening.

Of course it’s up to you who you tell, and when and how you tell them. However, you will need the help of others as your condition progresses so, in general, sharing the news sooner rather than later is best.

Here are some things to think about when considering how you share your diagnosis:

Who do I tell?
How and when should I raise it?
How will people respond to me after I tell them?
Will telling the person help me to cope with the diagnosis?

The answers to these questions will be personal to you, and it can be very hard to predict how people will react. Help is available – ask your GP or your local Alzheimers organisation for guidance.

Remember, there are support groups available in your local community, where you can share your experiences and learn from others facing similar challenges.

 Planning ahead

As well as dealing with the immediate impact of your diagnosis, it's also important to start planning for the future. See planning ahead for more information.

Tips and advice on living well with a dementia diagnosis are available here. 

 Dementia Alliance International

Dementia Alliance International (DAI) is a registered non-profit organisation whose membership is exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world.

DAI is a global group, of, by and for people with dementia, advocating for the voice and needs of people with dementia. 

DAI host monthly webinars, which cover a variety of topics, and provide an opportunity for people with dementia to connect with the wider community of those living with the disease or working in the area of dementia, and vice versa.  To participate, you need only an internet connection, while a webcam and microphone will ensure a fuller experience.

Click here for more information. 



Booklets and factsheets

Our booklets cover many questions that people with dementia, their families/whānau and friends may have. Knowing what to expect can help everyone prepare for what is coming, and knowing about what support and services are available is key to living well with dementia. 

Click here to view and download our booklets.