One of the most commonly assumed effects of a progressive neurological disease like Alzheimer’s is that it must ultimately change the personality of the sufferer. Even questioning such an assertion may seem bizarre when simple observation tells us the person in front of us is not the same as they were before. I’d like to challenge that assertion and put forward a case that personality doesn’t change so much as it adapts to changing circumstances.
Let me begin by unpacking a few truths. To imply that Alzheimer’s robs personality is to suggest that at some point everyone with Alzheimer’s must be personality free. We know this isn’t the case. Equally, we can’t talk about Alzheimer’s as if it is uniform. Alzheimer’s is progressive, so it’s far more accurate to think of it along a continuum of very mild and almost undetectable symptoms through to its most severe symptoms. For convenience we tend to categorize these into stages but there is often considerable overlap of symptoms.
At this point you might be thinking, well as Alzheimer’s is progressive so I see the personality of the person I know become progressively eroded. Let’s think about this. To my mind ‘personality’ is made up of beliefs, attitudes and values. Some of these adapt and change and some are deep rooted and fundamental. Your personal preferences, humor and personal goals are outward manifestations. When, for example, you get something like influenza, would we say your personality changes? I doubt it, but a part of you adapts to the changing circumstances of having influenza. Your humor, your energy, your food and drink preferences and your personal goals may be put on hold, but your fundamental personality remains as it was.
When people become ill they adapt to changing circumstances. A dose of flu is clearly different from a diagnosis of Alzheimer’s, which strikes fear into the heart of most people. In some ways however it is no different to other degenerative diseases. As a coping strategy people may at first cover over the situation by denying the problem, covering over errors, perhaps blaming other people or making various attempts at covering things up. Studies into emotional coping strategies in dementia suggest it is common for people to minimize difficulties. Even so, remaining optimistic and taking actions to increase quality of life all help to reduce the stress and possible depression that may follow the diagnosis.
So what does this tell us about personality? Evidence suggests that even with advanced stage Alzheimer’s people still retain personal preferences and purposes to their lives. So-called challenging behavior may be little more than an attempt to express these preferences.
If we accept personality loss as an inevitable feature of Alzheimer’s it must surely have negative implications for person-centered care? The emotional reactions we see in dementia are often less to do with neurological changes and more a human response to cognitive loss and the difficulties of solving problems in an ever more complex and threatening environment. If, as caregivers, we can accept that what we observe are outward (if sometimes disjointed or disorganized) signs of personal preference and expression then our role is to help remove or reduce those features the person finds stressful or frightening. Enhancing quality of life is not something that stops with a diagnosis of Alzheimer’s. The challenge for caregiver’s to establish ways in which quality of life may be enhanced in order to best serve the personal needs and preferences of the individual - that is, their personality.