“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 just 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
Dealing with a diagnosis of dementia is a difficult process for both the person being diagnosed, as well as their family and friends. We wanted to explore some things that may help everyone involved come to terms with this difficult diagnosis. We used professional online resources, as well as personal testimonies from patients working with Alzheimer’s Australia to put this blog together.
If you are reading this blog, you are likely already aware what dementia is. However, for those of us, who struggle to get a clear understanding, I am going to briefly introduce it. Dementia is not in itself a defined disease. It is an umbrella term used to describe a multitude of symptoms. These symptoms can include memory loss, difficulties with thinking, problem-solving or language, as well as changes in mood or behaviour. Essentially, it is our cognition that becomes affected, although it has been shown that often this can be accompanied by physical symptoms, too. Dementia is the result of damage to our brains, caused by diseases such as Alzheimer’s disease or multiple strokes. Alzheimer’s disease is the most common cause of dementia, although the exact mechanisms that cause Alzheimer’s remain unknown. Dementia is incredibly heterogenous in its nature, making it almost impossible to give an accurate prognosis. Furthermore, to date, no successful treatments to cure the different types of dementia, such as Alzheimer’s disease, have been developed.
This means that when you receive a diagnosis of dementia, you have to face the unknown. It’s a scary and difficult situation to be in, and people react in many different ways to receiving this diagnosis. For some a diagnosis may be the long awaited explanation of what has been happening to you, whereas for others receiving the diagnosis comes as a complete shock.
Facing and accepting a diagnosis of dementia is a lengthy process, often accompanied by a range of emotions, including fear, terror, shame, guilt, anger, sadness, bitterness and despair. You may feel isolated and helpless, and this is completely normal. Do not be afraid of strong emotions- there is no right or wrong reaction. Not everyone will experience these emotions, but either way you have to give yourself the time to settle down and adjust after getting the diagnosis. Some people may feel the need to be alone, whereas others seek 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. Whatever you choose to do, know that it is entirely normal, and part of the process of acceptance.
“They asked us to get the family together, and tell them I had Alzheimer’s. And I found that a little bit embarrassing at the time. But I got over it. I joke about it a bit. In many ways our lifestyle hasn’t changed that much.”
– George, Alzheimer’s Australia
Acknowledging the various stages of grief can be helpful. Note that these are not necessarily orderly, and they will come and go. There are tools that may help us understand what we are feeling.
“Receiving an Alzheimer’s diagnosis doesn’t make you worse than you were before the diagnosis. What it does is give 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.”
Denial: When receiving a diagnosis, you may think that it was perhaps a mistake, and ask for a second opinion. Denial is a common and at times very useful mechanism that can help us protect ourselves when we are not ready to face reality. It becomes negative when we cannot move past this phase.
Anger: Denial is often followed by anger. You will ask yourself “why you?”, and feel truly angry about what has happened. This is completely natural, and a necessary part of the process.
Bargaining: You may try to bargain with god or the universe. Most of us know that we cannot bargain, but often we are really desperate. Bargaining acts as a place holder to give us time to come to grips with reality.
Depression: People who have been given a diagnosis of dementia can grieve deeply what has been lost, as well as all that will be lost in the future as the disease progresses. Depression is the appropriate response to such a deep loss, and is just one of the steps along the way.
Acceptance: Eventually the day will come when you know that there is nothing left to do but to accept what is happening. This means that you know you have dementia and you will work with that knowledge to live well with this disease.
“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 some time after receiving the diagnosis, which is part of the process of learning to cope. In that case it is important to have someone to turn to, and to have access to information and advice. Make sure that you have someone that you can confide in, and don’t hesitate to ask your doctor or support services for advice.
Once you have accepted your diagnosis, move forward and try and live your life to the fullest. A diagnosis of dementia may feel like “the end”, but it really is not. There may be things that you can no longer do, but there are many opportunities that will open up, and many ways that you can engage in activities in a meaningful way.
“It came as a shock to me when I was first diagnosed, but I’ve come to terms with it now, and I look on it as an opportunity, rather than something bad. The friends I have made, the things I have learned, the things I have learned about myself- good and bad. I would like to say to people, that Alzheimer’s is not the end. There are many many things that you can still do. It’s just that you have to preserve and look for them. If at first you mess up a recipe, then try again. It’s all about perseverance and trying new things. Not just sticking with the old thing. Be brave, and have the confidence to give it a go. If it doesn’t work, it doesn’t work. It’s better to have tried than not. You don’t know until you’ve tried”
-Trish, Alzheimer’s Australia