Whatever the age of your loved one living with Dementia, telling them their diagnosis is never easy. Some people might align with an “ignorance is bliss approach” and feel that their loved one may not be able to understand what the diagnosis means or if they are in the later stages of Dementia, they might feel their loved one would not be able to accept it and have a negative reaction to hearing the diagnosis. It is important to take into consideration the stage and progression of the disease when considering how and why you are going to tell someone the state of the disease.
Use the following example for framework on how to handle an early stage Dementia Diagnosis:"My dad is 91, he was just diagnosed with Parkinson's and Dementia a few months ago- should we tell him his diagnosis?” Take into consideration both the early stage diagnosis where comprehension and critical thinking are still active as well as the later stage of the disease when comprehension is very difficult, but whatever your choice leading with a compassionate heart and respecting the persons dignity it paramount. Here are reasons why you should tell your loved one their diagnosis;
a. Planning for their future
b. Resolving family issues
c. Getting financial affairs in order
d. Checking off the bucket list
e. Considering available treatments
While there is no cure for dementia, there are drugs that slow the progression of the disease. The years where your loved one is able to feel peace and achievement does not immediately end after receiving a diagnosis. If your loved one is able to lend their input and preferences, listen. By ignoring them or by simply not discussing their diagnosis with them, it can add to the confusion.
On the other hand, in the late stages of Dementia, when memory is severely impaired, having this conversation repeatedly would cause pain and emotional hardship over and over again. When weighing how to approach a late stage diagnosis, try to follow and remember these steps:
a. It is more important the PLWD knows that they are loved and supported than fully understanding the lengths of their diagnosis
b. They know that their primary advocate will be beside them and supporting them all the way in this journey
c. They need to know that their advocate will make sure their environment, their care and medical needs will all be taken care of
d. Most importantly use communication to let them know they are understood, that this is hard journey but that they are not alone.
Fully accepting the fact that your loved one is at the point in the dementia journey where they should just be cared for and loved instead of included in all the decisions regarding their care is hard. This is a hard personal choice, which arrives at different times for everyone living with this disease, and the skill of the primary advocate is to judge the situation, keeping in mind the dementia stage and emotional strength of your loved one when you are thinking about how much you should tell them and how much you should include them. The decision to love and support any stage of dementia is the most important part of keeping your relationship in tact with your loved one.
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