Beyond Drugs: Other Ways To Treat Alzheimer's and Dementia (Part 5 - The Seattle Protocols)

Summary:  Based on more than twenty years of clinical trials, Dr. Linda Teri and colleagues have developed a series of behavioral techniques and caregiver training programs know as the Seattle Protocols.  Their research has shown that nondrug treatments for people with dementia can reduce depression, anxiety and general behavioral problems in people with dementia, decrease disability, delay institutionalization and reduce burden and depression in caregivers.

This is the last in a series of posts about presentations during the Psychosocial Issues and Neuropsychology session at ICAD 2008.  We hear a lot about clinical trials of Alzheimer's drugs, but there isn't much coverage of clinical trials of the nondrug treatments discussed in this session.  Maybe this is because nondrug treatments don't promise a cure.  But they can reduce health problems in people with dementia and their caregivers, whether those problems are physical or psychological.

Based on more than twenty years of clinical trials of nondrug treatments,  Dr. Linda Teri and her colleagues have developed a series of behavioral techniques and caregiver training programs known as the Seattle Protocols.  She gave an overview of their work in her presentation "Improving Care for Persons with Alzheimer's Disease:  Advances in Evidence-Based Nonpharmalogical Treatment."  Dr. Teri is a Professor in the School of Nursing at the University of Washington in Seattle, and Co-Investigator at the University's Alzheimer's Disease Research Center and at the Alzheimer's Disease Patient Registry.

While everyone's excited about the progress towards potential cures for dementia, said Dr. Teri, people still have to live with it.  She compared the current situation to that of a man with a broken leg dragging around a ball and chain.  The ball and chain represents "excess disability."  Even if you couldn't fix the man's broken leg [the way you can't cure most dementia now], you can take away his ball and chain, and make it easier for him to walk, she said.

The Seattle Protocols focus on how to take away, or at least reduce, the ball and chain for people with dementia and their caregivers.  That ball and chain, or excess disability, includes depression, agitation, sleep disturbances, and physical problems such as falling.

The methods included in the Protocols are flexible and can be individualized.  For example, when Dr. Teri and her colleagues started studying depression among people with dementia, they wanted to identify "pleasant activities" that might alleviate depression, but found these varied widely from person to person. So they developed a "Pleasant Activities Checklist" to start caregivers thinking about what might be helpful.  They also wanted to identify what caused problematic behaviors in people with dementia, but found the triggers weren't the same for everyone.  So Dr. Teri and her colleagues developed a flexible framework called ABC for reducing behavioral problems.  The idea is to identify the A (activator or antecedent), the resulting B (behavior) and C (consequences).  If a caregiver can understand the chain of events leading up to a person with dementia becoming agitated, for example, the caregiver may be able to eliminate factors contributing to the problem.

The methods and techniques that make up the Seattle Protocols have been tested in clinical trials, and are now taught to facilities-based and home-based caregivers. Trials and resulting programs include:

RDAD (Reducing Disability in Alzheimer's Disease) - a home-based exercise program for Alzheimer's patients, combined with teaching behavioral management skills [including the "pleasant activities" and ABC guidelines mentioned above] to caregivers to improve patients' physical health and decrease depression.

STAR (Staff Training in Assisted Living Residences) - a training program for assisted living staff caring for people with memory problems.  In addition to the "pleasant activities" and ABC guidelines, training includes how to recognize behavioral problems, change reactions and improve care.

STAR-C - a program similar to STAR for home-based caregivers.

RALLI (Resources and Activities for Life Long Independence) - research on the effect of increasing physical activity and promoting health as compared to a social walking program in persons 70 and over with mild memory loss.  For one and a half hours each week, the treatment group in this trial will receive strengthening exercises, encouragement to walk daily, a pedometer and health promotional material.  For one hour per week, the control group will receive group support for walking, and a pedometer.  After nine weeks, Dr. Teri and colleagues will evaluate the program's effect on the rate of cognitive decline, physical function, emotional symptoms and other measures.  This trial is still recruiting participants.

In related research, Dr. Susan McCurry (also a professor at the University of Washington School of Nursing) is leading studies analyzing sleep disturbances among people with Alzheimer's and their caregivers.

So what has Dr. Teri's 20-some years of psychosocial research proven?  She cautions that the Seattle Protocols are not for crisis management, and require caregiver and professional commitment, as well as time and patience.  But her research has shown that nondrug treatments for people with dementia can:

• reduce depression, anxiety and general behavioral problems
• increase physical activity
• decrease disability
• delay institutionalization.

Nondrug treatments can also reduce burden and depression in home-based caregivers and increase job satisfaction for caregiving staff.

It's too bad work like Dr. Teri's doesn't get more press coverage.  These clinical trials of nondrug treatments may be the most important research you never heard of.

Other posts in this series:

Part 1 - aromatherapy, bright light therapy and caregiver support

Part 2 - The problems with drug treatments for psychological symptoms

Part 3 - Cognitive rehabilitation

Part 4 - Psychosocial Risk Factors in African-Americans

Comments

[Carole Mulliken]

Alternative treatments as described at the recent ICAD meeting may be somewhat promising. However, as a person with dementia myself, I am continually disappointed in every piece of research I read that BYPASSES the possibility that the patient himself might conduct useful activities to prolong functionality. What good does it do me, if I have to rely on the willingness, time, resources and understanding of a caregiver--professional or personal--in order to get help?

Allowing people with dementia to continue to believe that they must rely on others for help only increases the excess disability called learned helplessness.

Who will do research into how I can help myself? Nobody, it seems. Could it be because nobody stands to profit from my remaining as functional as possible?

Sorely annoyed,

Carole M.

[Richard]

A-men! This learned and sometimes forced dependency on others to be active is toxic to our already damaged sense of self, sense of self-worth, since of independence.

There is no mention of self-empowerment, or even the possibility of self empowerment. I know there are many folks deeply into the symptoms of dementia from whom the the concepts, the needs for independence and self-empowerment seems gone forever! But isn't it the responsibility of careers and especially professions to never give up attempting to find new was to cause the flicker of humaninty within everyone up to the moment of death to burn as brightly as possible?

Richard
individual living with the symptoms of dementia for a while and afraid this is happening to him