Volunteers Needed for Clinical Trials

Looking To the Population for a Cure

I was reading an article the other night in bed that was addressing the monumental need for volunteers that are needed for clinical trials for dementia and Alzheimer’s treatment. I am sorry but I can not locate the article but felt the need to write about it today. I will paraphrase as best I can and will be writing more about this need in the future.

The general jest of the article was most of the current studies will never materialize because there are not enough volunteers. Because tens of thousands of volunteers are needed to fill a few thousand suitable participants. That by itself does not sound so bad. However, that is for one study not the hundreds of studies that are looking for a cure.

TrialMatch

The first key is to apply to participate. The Alzheimer’s Association has what they call TrialMatch, this is a starting point to volunteer. I will repost this link at the end of the post.

Early Detection Required

The next problem is that so often dementia and Alzheimer’s is not identified until the later stages of the disease. When the person is forgetting so much they can no longer perform everyday tasks. We have to get willing participants in sooner not later, in the progression of the disease. Some early warning signs are misplacing everyday items on a regular basis, not being able to retrace their steps and actions. then finding the items in bizarre places. Forgetting recent conversations, appointments. Here is a link to 10 early signs by the Alzheimers Association. Memory loss and 10 early signs

Long-term Commitment

These are long-term studies they require a commitment, not just the participant but also an observer, generally a family caregiver. Who can document how the participant is doing, making sure that they are following the instructions, and driving them to their appointments. This brings up another sad fact over 50% of the caregivers pass away before the PLWD. These are long-term trials, not years but decades in some cases.

I found the original story that inspired this  –post https://www.nytimes.com/2018/07/23/health/alzheimers-treatments-trials.html

Link to early detection  https://www.alz.org/alzheimers-dementia/10_signs

Link to TrialMatch https://www.alz.org/alzheimers-dementia/research_progress/clinical-trials/about-clinical-trials

Advertisements

FAST Scale

Functional Assessment Staging of Alzheimer’s Disease. (FAST)

Normal Aging

1. No difficulties, either subjectively or objectively.

Possible Mild Cognitive Impairment

2. Complains of forgetting the location of objects. Subjective word finding difficulties.

Mild Cognitive Impairment

3. Decreased job function evident to co-workers;
difficulty in traveling to new locations. Decreased organizational capacity.*

  • expected duration for this stage 84 months approximant mental age 12+ years.

Mild Dementia

4. Decreased ability to perform complex tasks (e.g., planning dinner for guests), on occasion, handling personal finances (forgetting to pay bills), difficulty marketing, etc.

  • expected duration for this stage 24 months approximant mental age 8-12 years.

Moderate Dementia

5. Requires assistance in choosing proper clothing to wear for day, season, occasion.

  • expected duration for this stage 18 months approximant mental age 5-7 years.

Moderately Severe Dementia

6a. Difficulty putting clothing on properly without assistance.

  • expected duration for this stage 4.8 months approximant mental age 5 years.

Moderately Severe Dementia

b. Unable to bathe properly; (e.g., difficulty adjusting bath water temperature)
occasionally or more frequently over the past weeks.*

  • expected duration for this stage 4.8 months approximant mental age 4 years.

Moderately Severe Dementia

c. Inability to handle mechanics of toileting (e.g., forgets to flush the toilet, does not wipe properly or properly dispose of toilet tissue) occasionally or more frequently over the past weeks.*

  • expected duration for this stage 4.8 months approximant mental age 4 years.

Moderately Severe Dementia

d. Urinary incontinence, occasional or more frequent. 

  • expected duration for this stage 3.6 months approximant mental age 3-4 years.

Moderately Severe Dementia

e. Fecal Incontinence, (occasional or more frequently over the past week).

  • expected duration for this stage 9.6 months approximant mental age 2-3 years

Severe Dementia

7a. Ability to speak limited to approximately a half dozen different words or fewer, in the course of an average day or in the course of an intensive interview.

  • expected duration for this stage 12 months approximant mental age 1.25 years

Severe Dementia

b. Speech ability limited to the use of a single intelligible word in an average day or in the course of an interview (the person may repeat the word over and over.)

  • expected duration for this stage 18 months approximant mental age 1 years.

Severe Dementia

c. Ambulatory ability lost (cannot walk without personal assistance).

  • expected duration for this stage 12 months approximant mental age 1 years.

Severe Dementia

d. Ability to sit up without assistance lost (e.g., the individual will fall over if there are no lateral rests [arms] on the chair).

  • expected duration for this stage 12 months approximant mental age 0.5-0.8 years.

Severe Dementia

e. Loss of the ability to smile.

  • expected duration for this stage 18 months approximant mental age 0.2-0.4 years.

Severe Dementia

f. can no longer hole up their head

  • expected duration for this stage 12 months approximant mental age 0-0.2 years.