For the past 12 months I have been privately thinking about a female friend. She is quite remarkable, being into her early 70s and maintaining a hectic business life which includes being the public face of a seriously big corporation. Here is the thing – when we last met, I developed a suspicion that something was just not right. There were signs to my mind of very early dementia. In the grip of uncertainty – and an ‘appropriate’ belief that it is not my role to say anything – I kept my thoughts to myself.
So here I was 12 months later, privately checking out my friend just after Christmas, and yes, to my unqualified assessment, those signs had expanded.
With dementia, it’s complicated
What does one do? On the surface it is easy to think it is none of my business and I should keep my thoughts to myself. On the other hand, thinking of the individual, the earlier the diagnosis is made, the earlier that interventions can be established – with a supportive plan that can slow the debilitating process of the disease.
From my own experience with my mother – where we neither picked up the signs, nor implemented a supportive health and administration program – I am conscious of the potential detrimental downsides to the individual and family of not facing up to the problem.
Don’t think of me as being insensitive or self-interested but a person in denial of the onset of dementia can unwittingly create substantial damage not only in their own lives but their families and other spheres of their lives. For instance, my friend could potentially make questionable business, investment and family financial decisions that could heavily impact her own and the family’s wealth. With a clear mind, this would be a shocking concept to her… but I have seen it happen on more than a few occasions with others.
What do the dementia experts say?
Reaching for advice, I went to the Alzheimer’s Australia website.
Observing my friend, this is what I should look for as early signs of dementia (bearing in mind that you need to distinguish between ‘normal’ levels of all of these behaviours too):
- Memory loss – particularly short term
- Difficulty performing familiar tasks
- Confusion about time and place
- Problems with language
- Problems with abstract thinking
- Poor or decreased judgement
- Problems misplacing things
- Changes in personality or behaviour
- Loss of initiative and apathy
In truth, my friend didn’t have really clear-cut signs of any of these, with the exception of slight confusion in her language. I can increasingly sense she is struggling to get the right words out while appearing spontaneous. She is slightly ‘waffling’ while she gets words together. She has also forgotten recent discussions and context. And she is very defensive – emotional in fact – about her age.
Putting these facts together, one can see how these signs could morph into this list of symptoms.
An emotional and professional minefield
As friends, should we tell anybody about our thoughts?
Alzheimer’s Australia doesn’t give a clear answer here. What is clear though is the emotional and professional minefield around this subject. They only deal with a doctor informing the person of a potential diagnosis.
Here is what they have to say.
“Whether or not to tell a person with dementia about their diagnosis is likely to be a difficult and emotional issue for all concerned. Improved diagnostic techniques mean that increasingly dementia is being diagnosed at an early stage of the illness. This means that people with dementia are more likely to be able to understand the implications of the disease than has been the case in the past.
Wherever possible, the person undergoing the assessment for dementia should be allowed to decide if they want to know if the diagnosis is confirmed. In general, if a person is aware that they are going for a diagnosis they will be able to make that choice.
Some doctors will always tell their patient the outcome of the diagnosis, so it is important to discuss this issue prior to proceeding with the diagnosis. If the person is not in a position to understand the implications of receiving a diagnosis of dementia, you need to make some judgements, based on your understanding of what the person’s wishes would be.
What would their choices have been if they were able to understand the implications? Have they ever given an indication in the past as to what they would have wanted in this situation? This is an important and difficult decision to be making on behalf of another person. Talking to family and friends, as well as to the doctor or specialist beforehand may help.
There are many reasons for telling a person with dementia about their condition:
- It is now widely accepted that people have a right to know any medical information about themselves, if this is not to their detriment
- Many people are already aware that something is wrong. The diagnosis of dementia can come as a relief, as they now know what is causing their problems
- Knowing the diagnosis can help a person understand their situation, and make important plans for the future, particularly about legal and financial matters
- Knowing about the disease allows for an honest and open discussion of the experience of dementia between family and friends
- Access to information, support and new treatments can be accessed when the person knows about their condition
However, there are a number of reasons sometimes given for not sharing the diagnosis with a person with dementia:
- The very nature of the dementia changes the ability to understand and remember information. It can also affect people’s abilities to deal with emotional issues. The person may not understand the diagnosis, or may not remember it
- It may be felt that the person will become very distressed by the discussion. Families naturally feel very protective of their relative and wish to spare them the trauma.
Our heart of hearts
Of all these points, the most telling in my experience is that many people are already aware that something is wrong. In hindsight this was the case with my mother, who became increasingly agitated and obsessed with making lists. I still hate to think about the internal distress she was living with during the 12 to 18 months before she totally collapsed physically and emotionally, requiring hospitalisation almost overnight.
In hindsight it was incredibly cruel.
With this experience, do I talk to my friend or her family? I know I most probably should; but even so I hang back. I suppose it is because of our culture of not intruding on other people’s lives and I suppose also the risk of putting myself in a negative conflict situation.
Poor excuses I know, so I continue to dwell on it.
Have you had to make a similar decision? What did you do? What happened? What WOULD you do?
