A Dialogue About The "Dementia" Label

Kate Swaffer in her blog "Is ‘diagnosed with dementia’ the new ‘in’ group?"discusses why people would want the label "Dementia" if in effect it was not confirmed.

Click here for Kate's Post 

She says: 

Currently, a diagnosis of any dementia cannot be confirmed until an autopsy. The point being, not enough is known yet about dementia, and further research is required before we can be positive of any dementia diagnosis. However, doctors can be reasonably sure, certainly enough to either confirm, or not confirm a diagnosis even though occasionally they make mistakes. Well, let’s be reasonable, everyone makes mistakes.

THIS WAS MY REPLY TO KATE:

After having had a number of problems, on which we couldn’t quite put an “understanding” finger, we were actually relieved when we received the diagnosis of “dementia most possibly Alzheimer’s.” 

At least we knew what we were dealing with. The doctors had run many tests and ruled out other treatable issues that would cause dementia like symptoms: low oxygen, vitamin B deficiency, small TIAs, etc. 

While the actually roller coaster of the last 11+ years slowly took us by surprise we adjusted, acclimated, compensated, studied, and lived our life on a day by day more fully than ever basis! We put our financial house in order as well las power of attorney over health and property. Not only for Gregory but for me as well in the event I would pre-decease him. 

Having the diagnosis “Alzheimer’s” helped with insurance, private disability insurance, social security disability, and “How do you explain this to family and friends.” In many ways the past 11+ years have not only been a roller coaster but have also given us many gifts as we enjoy our life to the fullest and our loves continues to grow stronger!

Most recently I had a long discussion with our Neurologist, asking him “Who is Gregory today?” It was very helpful as well as disturbing. This is a link to my analysis of where we are today: http://mhorvichcares.blogspot.com/2015/06/between-rock-and-hardplace.html

Thank you Kate for your words of wisdom and for sharing with us life on the other side of the Dementia Door. It gives us caregivers great understanding and the ability to be more giving, caring, and compassionate.

THIS WAS KATE'S REPLY TO ME:

It is for most of us a very long and difficult process to get a diagnosis at all, as you have also expressed. I guess though, if your Gregory or I had been having tests based on various cognitive impairments, to see if we had dementia, and after 10+ or even 5+ years were continually told they were not stemming from a dementia, I can’t imagine why I would want to say I was living with the symptoms o dementia, when in fact, they could and probably after so many years of testing, one could very reasonably expect them to be caused by something else entirely… a lack of a confirmation of a diagnosis, after repeated testings, would indicate to me, it is probably not dementia… what are your thoughts on this? As a woman said on twitter this morning after reading my blog, people are very welcome to have her mums dementia!!!

AND MY REPLY BACK TO KATE:

LOL at the tweet. Neither Gregory nor I would have ordered "dementia" if we had the choice. Also the testing he underwent was to rule out other causes for the changes he was experiencing. 

Something was wrong, very wrong and we had to take a close look. His day to day was suffering; his high end architecture and interior design firm (which I was managing after having retired from teaching) was feeling the effects; employees, friends, and family were noticing subtle changes and either took me into their confidence or said nothing (until later.) 

Besides the tests mentioned above he underwent a complete psychological examination that showed unexpected deficits in a number of areas. So we exhausted all possible reasons to account for the changes in his behavior, cognition, decision making, judgement, etc and did so within a few months. We would have been grateful to find out that there was a "culprit" causing the difficulties that could be treated. But all "arrows" pointed to dementia with a probable Alzheimer's. 

So having exhausted all possibilities, we chose to go with the best we knew based on help from our wonderful medical team. Label or no label things were changing and we had to change with them. I had guessed, based on the symptoms I was observing and on my research, that it was really Frontotemporal Dementia. But the brain is a cooperative organ and eventually symptoms generated by all parts of the brain began to show up over time. 

So in short: It is said that by labeling something can give us a false sense of security because we can "name" it and don't have to do anything about it. The good sense of security is that we can come to grips with it and plan for the eventuality of "it." We must not let the label stop us from looking further for a cause and becoming complacent.

The label did help us get our private disability care, it provided a case for us to win a case against his group disability insurance company, it succeeded in getting U.S. Social Security Disability Insurance approved, and finally it kick started Gregory's ability to receive Medicaid from the government. We are not a wealthy family so these various sources of income have helped us cope with the dementia more successfully and more comfortably.

Finally and least important is that telling family and friends that "Gregory was diagnosed with Young Onset Alzheimer's at age 55," helps frame his needs, my needs, and our situation. 

Call it Dementia, (does one capitalize it?) Alzheimer's Disease, Frontotemporal Dementia, or whatever ... it is what it is and we have been doing a fine job of living with it for 11+ years now. I know that it will become more and more difficult for Gregory (and me) as time continues but I will be there for him and through his losses, our memories and his life spark will be there for me. It all comes down to "Love." Thanks Kate.