I am not proposing we should stop all research on the search for a cure - pill, or event that we should slow down research on the quest for a slow down the progression pill cocktail. I do advocate we spend proportiontely more on psycho-social research and less on the quest for the cure pill.
 
QRD - if you insist on spending some money on the search for a cure for a disease whose cause has a yet to be discovered (in spite of the fact we have been looking in earnest for it for the past 30 years), and if you insist on spending some money on finding a cocktail of pills to slow down the intensification of the symptoms of the disease in most everyone who “gets it:” if you still want to continue stumbling down these thus far blind alleys then at least please consider the British Quality Research in Dementia model may be the best way thus far to go about it.
 
The Alzheimer’s Society of the UK divides its research focus into the three C’s: some funded research for Cause, Cure, and Care (they are considering adding research into slowing the progress of the disease, but haven’t made up their minds quite yet, and are looking for a word that starts with C to describe the new emphasis).
 
All proposals for funding from researchers are first reviewed by committees composed of people with dementia and their carers. They decide the first “cut.”
 
Then another committee of research experts that also includes at least one person with dementia and one carer evaluates and ranks the proposals. All this process is transparent. If proposals are so complicated that only a few human beings on earth can understand them, then perhaps they need to be simplified. If only other members of the research club are able to appreciate them, then let the club members fund the proposals - not the Alzheimer’s Society.
 
Next this committee invites in the top proposers and interviews them - the experts, the people with dementia, and the carers are the interviewers.
 
Those proposals selected for funding are assigned a monitoring group; yep you guessed it, one expert, one or more persons with dementia and one or more carers to periodically review the progress of the research and the grant.
 
What a novel idea, trusting people with dementia, caregivers, and experts to be able to work together to decide how best their Alzheimer’s Society should spend their money.
 
The English Alzheimer’s Society spends 6-10% of their annual budgets on funding research (we spend 40-60% of the National Alzheimer’s Association funding research, but our method of selection, who and how we trust “experts” to decide who gets how much for how long couldn’t be more biased towards bench research over psycho-social research). Committees of researchers sometimes read each other’s proposals and decide who gets what. Board Members of the National Association are researchers. Employees of the organization are researchers. This closed club of folks, none of whom has Alzheimer’s disease, none of whom is required to be living with and taking care of someone who has Alzheimer’s disease, not of whom is required to first consult with people with a diagnosis of dementia, probably of this or that type - these folks decide how best to spend your donation. What about the true stake holders in all this?

 They are encouraged to sign up as “subjects” for research/experiments (sometimes they are reimbursed for their gas and oil expenditures, sometimes they get free physicals the results of which they are seldom told.) They are encouraged to support research efforts by donating money, just like everyone else who is not a stake holder is encouraged. It’s just not very encouraging, but that is how research dollars are passed around by our National Alzheimer’s Association.
 
It’s time for a change. Now!
 
Richard