I am an Alzheimer's Caregiver: The Rate of Decline In Alzheimer's Patients

Readers often ask, what stage of Alzheimer's is s/he in, and how will the Alzheimer's disease progress?.....

By Bob DeMarco

I think most Alzheimer's caregivers wonder about how Alzheimer's disease will progress in their loved one. Do you?

As far as I know there is no answer to this question.

I know I wake up wondering every single day if this will be the day my mother takes a big down turn in her cognitive health. Some days I think she is worse than others. I often think on a real bad day, this is it. But somehow she bounces back the next day.

Less there, more there, it is like playing with a yo-yo. Sometimes the string gets all tangled. You just hope you can get the knots out of the string and keep the yo-yo going.

Alzheimer's caregiving is like riding on the yo-yo.

It appears that their could be a new test on the horizon that could answer the above question in part. How long? When? What to expect over time.

A simple, calculated progression rate at the initial visit gives reliable information regarding performance over time on cognition, global performance and activities of daily living.

The slowest progression group also survives longer. This baseline measure should be considered in the design of long duration Alzheimer’s disease clinical trials.

Predicting progression of Alzheimer’s disease

There is considerable variability in progression rates among Alzheimer’s disease (AD) patients. Patients and families frequently ask clinicians to prognosticate regarding expected rates of cognitive and functional decline, and clinicians have little basis for making such predictions.

We have shown that it is possible to reliably estimate early AD symptom onset, and together with
baseline MMSE score, to calculate a rate of progression at the initial assessment (the preprogression rate).

The use of a rate to estimate early progression gives information on severity, but also on how long it took for the patient to reach the current severity level, which reflects that individual’s disease characteristics better than a severity score alone. However, it is not clear whether patients maintain a similar rate of decline throughout the course of their disease or change trajectories over time, due to endogenous or exogenous factors (such as treatment).

Demonstrating the predictive value of the calculated pre-progression rate would be valuable for patient and family counseling, as well as for providing a research marker of phenotypic variability to validate biological markers of progression. Further, the ability to model group progression of AD patients is essential for designing disease-modification studies of new AD treatments, and pre-progression might be an important baseline variable to take into account in the analysis of clinical trial data

The Baylor Alzheimer’s Disease and Memory Disorders Center has followed a cohort of AD patients for up to 15 years, with detailed clinical and neuropsychological data obtained at baseline and at annual follow up visits which are maintained in an ongoing electronic data base.

We used these data to answer the following questions: 1) does a pre-progression rate calculated at the initial assessment predict subsequent performance in specific cognitive and functional domains during follow up, and 2) is the pre-progression rate associated with overall survival, after adjustment for relevant covariates?

This research study was published in BioMed Central's open access journal. Go here to read Predicting progression of Alzheimer's disease.

Rachelle S Doody, Valory Pavlik, Paul Massman, Susan D Rountree, Eveleen Darby, Wenyaw Chan