Dementia is one of the world's fastest growing diseases. A look at the facts and statistics surrounding dementia clearly show that it is a massive issue with no easy solution. Worldwide, there are now an estimated 24 million people living with some form of dementia. Without a major medical breakthrough in the fight against dementia, this number could jump to as many as 84 million who have age-related memory loss by the year 2040. How do we not only digest this information but prepare ourselves for dealing with it either with a loved one or even as one diagnosed with Dementia?
I mentioned in an earlier post that I had attended an Alzheimer's/Dementia recently and as I have gone over the information and the notes that I took I thought about one of the participants questions to the Doctor who was conducting the seminar...."When do you tell your parent that they have Dementia?" This question keeps coming back to my mind and I have even gone one step further......what if I had Dementia? Would I want to know?
Obviously, we need to keep the mental status of the patient in mind before trying to address any type of conversation of such seriousness. In my experiences, dealing with those with Dementia, I find that the most simple explanations and discussions work the best. It is much like raising a child. When your five year old asks where babies come from you don't automatically pull out the medical books for an explanation. You give the child as much information as the child needs to be satisfied with the answer at that time.
Those suffering with Dementia can be very childlike not only in thoughts but in behaviors. Nonna, my grandmother who suffered from Dementia, would not have understood any part of the diagnosis if it had been explained to her. In fact, it probably would have frightened her or even made her angry and she would have fought tooth and nail to prove that it wasn't true. This would not have been productive for anyone involved in her care and especially for Nonna. Instead, we went through each day dealing with whatever we were faced with, making the best of it and moving on. Sometimes it was a daily adjustment. Sometimes things stayed the same for weeks.
I don't feel like we were deceitful in any way to Nonna. I believe we did the right thing in not going over and over the illness with her. And, believe me, we would have needed to explain it to her daily!
When contemplating whether to explain the illness to your loved one or not, please consider the following:
1. Is your loved one mentally able to digest the information? Will the info cause worry, anguish and anxiety or will it calm and educate?
2. Is everyone in the family on the same page. Don't take it upon yourself to explain it to your loved one. You will need support.
Most people are not diagnosed until they are in stage 3 or even 4 (see previous post) of Dementia. At that point it may be impossible for them to understand the magnitude of what is happening. There is not currently a cure for this neurologically degenerative disease and medication does not dramatically stop the decline. This would make many wonder if trying to explain it to their loved one would even make a difference. This is a decision you have to make with your family.
I pondered this on a more personal basis and asked myself, would I want to know if I had the disease? Yes! The difference here is that I am still very lucid (my hubby might argue that one ;)) and able to understand the diagnosis and disease process. There are so many things that I would want to take care of prior to the decline in later stages of the disease that knowing as early as possible would be very important to me. It does not, however, guarantee that I will remember that I have the disease when it progresses. The only thing for me to do is GET BUSY and take care of all of those things I want to do....just in case:)
I would love to hear your thoughts on this post or if you have information that would be helpful to others, just send me an email! gena@utahfreedom.com
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