Good days and bad days in dementia
The August International Psychogeriatrics Article of the Month is entitled ‘Good days and bad days in dementia: a qualitative chart review of variable symptom expression’ by Kenneth Rockwood, Sherri Fay, Laura Hamilton, Elyse Ross and Paige Moorhouse.
Anyone who works with people with dementia is bound to experience poignant moments. Especially striking is hearing that a person seemingly lost to permanent unknowing – even near muteness – suddenly spoke a full sentence, or sometimes more. Much more common, but still compelling, are reports of people with dementia having remarkably good or bad days.
In what does daily variability consist? For some years, that question has motivated our group. In a paper in this month’s issue, we report the findings of a clinical chart review spanning 30 months, to understand how patients and families experienced variability living with dementia from day to day. This line of inquiry was born from the realization that, for many patients and families, variability was a source of expectations – and often disappointments. Families asked questions that I couldn’t answer: “why can he be so helpful some days, and other days can’t even do for himself?” Often, they had answers as good as anything I could muster: “it’s best if he has a good night’s sleep”, or “I can tell if he’s missed his medications”.
The challenge is to understand the mechanisms of variability. To get there, we need to know just what is happening, and for that we need careful qualitative studies. The area is tricky, because variability threatens reliability, and that undermines measurement, which undermines understanding. Or so the argument goes. Progress however, obliges investigating the variability itself – as is being done in Lewy body dementia – and not just seeking ways to reduce it for testing purposes.
Our study offers some clues. For an important proportion of patients, variability occurs within the same symptom set: a good day is when the symptom is seen less, and a bad day when it occurs more. This makes fluctuation in specific neurochemical transmission seem likely. That some are implicated more than others is suggested by the patterns: most of these symptoms involve social conduct and engagement; other descriptions sound like attentional problems. For a second group of dementia symptoms, a bad day is marked by even a single occurrence of a bad problem: not being struck does not constitute a good day, even if being struck means a bad one.
Our group also gives thought to the mathematics of variable disease expression in dementia. On scales of months and years, a comprehensible, stochastic process can be modeled with high precision. Is what we see clinically another face of that, or does it signal instability that so often heralds more rapid decline, or is it a variation of the fluctuating attention seen in delirium and in Lewy Body dementia?
However it works, we should aim for treatment. Many families believe that some part is modifiable. Are they correct? Aiming for therapies might seem obvious, but against the thankfully fading fashion of rubbishing symptomatic treatments, it’s good to be reminded of how big is the gap between what we offer and what people need. And that is poignant.