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The Stages of a Dementia Diagnosis: It's Not All About the Disease

By: Commonwealth Senior Living / 16 Jun 2023
The Stages of a Dementia Diagnosis: It's Not All About the Disease

If you or someone you love has received a disease diagnosis including dementia as an outcome, you already know. Every resource you look at or listen to will tell you dementia is not a disease, but rather a "cluster of symptoms" that will erase your life's memories. Any dementia educator will tell you about the stages, what to expect, and advise you to seek out as much information as possible. This process will help tremendously but be prepared for some negative emotions simultaneously. The first stage is not memory loss and behavior changes - it's devastation.

Let's talk about the first stage of a dementia diagnosis: devastation. It's 100 percent acceptable to feel this emotion. You do not have to pretend you are strong and that you've got this. You have permission to jump headfirst into grief, loss, sadness, and anger at the unfairness of it all. Make no mistake, dementia is unfair.

Why would a dementia educator tell you to embrace devastation? Because on the other side of devastation is relief that:

  • You have a diagnosis and are no longer living in fear of the unknown.
  • You know what direction to take and where to seek help.
  • No matter what happens, you have the resources to help make the journey easier.

Once you feel the relief, you can take on the second stage of a dementia diagnosis: discovery. This stage is broad as there are many things you will discover about a disease that includes dementia. Some of the information may be unexpected. You may want to manage how much, and for how long, you deep dive into all the resources. Take your time, take breaks, and remind yourself that not everything you learn will happen because every dementia diagnosis is different.

During this stage, stay open to the discovery of positive information. For example, consider how much you are learning about yourself and your loved one living with dementia. As you progress through the stages, you will discover things you never knew before. These may include life experiences that were not previously discussed because you didn't know you would need to or thought you had more time. Take time to hear the stories that will emerge as you hold on to as many memories as possible.

Through these stories and daily experiences, youll learn how to create moments of joy and new ways to make more memories. Despite the original devastation, you will find that life will still surprise you with humor, love, laughter, and complete joy. The trick is to not become completely focused on trying to understand the disease.

After the initial devastation subsides and you are well into your discovery stage, you will begin to enter the final stage of the diagnosis: determination.

Determination looks different to everyone. You may focus on providing the best quality of life which ranges from caregiving at home to support and care in a senior living memory care neighborhood. You may become determined to learn all you can about caring for yourself as a caregiver while supporting your loved one or finding the most vibrant and well-suited community for your family. You might simply be determined to find joy and beauty in every day and make spectacular memories along the way.

As you navigate this new journey, you may encounter additional stages that are unique to you. You will come across information on the early signs of dementia as noted by The Alzheimer's Association. You will also find many helpful organizations offering information on memory loss and disease progression stages. We encourage you to get as much information as you can on the disease which is causing dementia. We also encourage you to look beyond the disease and pay attention to your needs as a caregiver or newly diagnosed individual. There is much more to the journey than the disease itself, and life will continue one way or another. There may be traumas, but there will also be silver linings.

Commonwealth Senior Living is here if and when you need us along the way. Contact the community nearest you to learn more about our Sweet Memories neighborhood and our personalized care plans.

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By Paula Harder
Vice President of Resident Programs

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