Receiving a diagnosis of dementia can be a frightening experience. It is, therefore, important that the diagnosis takes place in a timely manner that is correct for you, in the right place, by the right person, and that you are given enough time for explanations and any questions you may have. This is important as you will need time to process the diagnosis.
For most people, a new diagnosis will evoke feelings of fear and uncertainty at the thought of a different and unknown future. Therefore, it is not surprising that this new diagnosis may bring feelings of loss and grief as you attempt to come to terms and adapt to this new information. It is, however, essential to recognise that these feelings are entirely normal and understandable.
This piece of new information is a lot to take in, and therefore, the correct time is needed to process it and allow yourself to come to terms with it. Everyone will experience this in different ways. For some people, the diagnosis may come as a complete shock, while others welcome it as an explanation to changes that have recently been occurring. For others again, who may have lived in denial for years, a diagnosis may finally be what has been needed to put the necessary support in place.
Everyone’s journey with dementia is unique, and that includes coming to terms with a new diagnosis. Some people will adapt relatively quickly and put in place support to take the first positive steps forward. For others, it may take a long time to accept.
It is common to experience many different emotions when you receive a diagnosis of dementia. Different people react in different ways. This can include feelings of:
Denial: When receiving a diagnosis, you may think it was perhaps a mistake and ask for a second opinion. Denial is a common and, at times, a very useful mechanism that can help us protect ourselves when we are not ready to face acceptance. However, it becomes harmful when we cannot move past this phase.
Anger: Denial is often followed by anger. You may ask yourself, “why me?” and feel truly angry about what has happened. This is a natural stage of the process.
Bargaining: You may quietly find yourself “bargaining” with God or the universe. Most of us know that we cannot bargain, but often we feel desperate. Bargaining acts as a placeholder to give us time to come to grips with reality.
Depression: People who have been given a diagnosis of dementia can begin to feel a sense of profound loss. Depression is the appropriate response to such feelings of grief and is just one of the steps along the way.
Everyone is different, and everyone will find acceptance in different ways. Some people may feel the need to be alone, whereas others seek the support of family and friends. Maybe you choose to submerge yourself in activities and surround yourself with lots of people to avoid the knowledge of the diagnosis until you are ready to accept it. Whatever you choose to do, know that it is entirely normal, and coming to terms with the diagnosis at your own pace and in your own way is completely acceptable.
Eventually, the day will come when you know that there is nothing left to do but accept what is happening. This means that you know you have dementia, and you will work with that knowledge to live well with this condition.
“It’s not the end of everything. We start to think it is, but then some things happen. Good things happen. We find ourselves surrounded by good people.”
-Peter, Alzheimer’s Australia
You do not have to go through the process of coming to terms with your diagnosis alone. Know that you have your family and friends to support you, as well as many volunteer organisations that specialise in helping people with a diagnosis of dementia. Having a supportive social context can be immensely helpful. It is common to have a crisis sometime after receiving the diagnosis, which is part of learning to cope. In that case, it is vital to have someone to turn to and to have access to information and advice.
Forming partnerships with other people with dementia, family carers, and healthcare professionals during this early stage of diagnosis can help share the experience of diagnosis, providing support and counselling at this important time.
It is important to realise that most people can only start to address a problem when they know and understand precisely what the problem is. Receiving and accepting a diagnosis means that you are out of the unknown and no longer in the dark. The diagnosis may not be something that you wanted in your life but recognising and accepting it allows room for moving forward positively and practically.
It is also important to recognise that immediately after receiving a diagnosis of dementia that life will not suddenly change. You can have many years of good quality life ahead in which you remain productive and make a valuable contribution and live a good and meaningful life.
“Receiving an Alzheimer’s diagnosis doesn’t make you worse than you were before the diagnosis. It gives you time to go through whatever steps of grieving that you need to go through as often as you need to go through them. It gives you time to decide how to move toward the future. In that way, it gives you back some control over your life.”
– Louise, Alzheimer’s Australia
Living well with Dementia
Although a diagnosis of dementia is irreversible and there is currently no cure, there is still quality of life to be had. It is important to remember that you have a lot of living left to do. You may need to find different ways to do things and need more time to do them, and often with more support, but there is still a life to be led and joy and hope to be found in every day.
“When I was diagnosed with dementia, I didn’t know how I felt for quite a while. It took a while to register, and then I decided, well, it’s not the end of the world and to get on with it, and do what you can. I’ve got so used to it now. I know what I can and what I can’t do.”
– Maureen, Alzheimer’s Australia
