Thursday, January 3, 2019

Understanding Alzheimer's - decline and prognosis

From a series illustrating
Functional Assessment Staging (FAST)

Here’s basic information on FAST - Sclan, S. Reisberg, B. Functional assessment staging (FAST) in Alzheimer's disease: reliability, validity, and ordinality. Int Psychogeriatr. 1992;4 Suppl 1:55-69.

“...Empirical and systematic examination of the functional changes occurring in patients with Alzheimer’s Disease (AD) has resulted in the development of an assessment measure termed Functional Assessment Staging (FAST) that allows for the specific evaluation of these changes throughout the entire course of AD. In this paper the results of three separate investigations regarding the reliability, validity, and progressive ordinality of FAST are described.”

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When it comes to exploring goals for care with patients and families, I find too many clinicians and agencies hide behind “guidelines” and “criteria.”Those who do are either uninformed, lazy, simply don’t care, or worse. It's particularly troubling in the case of advanced dementia.

Also, too: see here and here and here and here.

These authors pretty much said the same thing sixteen (16!) years ago. 

Schonwetter, R. Han, B. Small, B. Martin, B. Tope, K. Haley, W. Predictors of six-month survival among patients with dementia: an evaluation of hospice Medicare guidelines. American Journal of Hospice and Palliative Care. 2003;20(2),105-113.

“To the best of our knowledge this study was the first to not only evaluate the validity of the Medicare guidelines in determining the appropriateness of dementia patients for hospice, but also to identify valid predictors of six month survival for patients with advanced dementia that would better predict which patients would have a prognosis of less than six months. The results suggest that the hospice Medicare guidelines were not valid in predicting survival of these patients.”


“Since implementation of the hospice Medicare dementia guidelines, patients may have been denied access to hospice services based on guidelines… that were invalid.”


“The results of this study confirm the importance of performance and nutrition measures when estimating prognosis in advanced dementia patients. ...research with the FAST scale has generally included patients without serious comorbid conditions… a small subset of patients atypical of patients seen in the hospice setting.”

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There’s lots of work to be done. Patients and families need to know more and demand better. Clinicians need to be trustworthy and proficient (expert). Communities need to step up and take charge. Agencies need to be transparent, and not abuse their staff. 

Sachs,G. Shega, J. Cox-Hayley, D. Barriers to excellent end-of-life care for patients with dementia. Journal of General Internal Medicine 2004;19(10),1057–1063.

“...In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy.”