It should not be news, nor a surprise that more and more and more people are
dying because of this or that consequence of some form of dementia. More and
more people are reaching the ages during which the probability of acquiring one
or more of the diseases of dementia rapidly increases. What should be news is
how little is being done to research how to add value to their lives prior to
their deaths and after their diagnosis. What should be a surprise is how little
research and research dollars are earmarked for psycho social research into the
impact of the disease on individuals and their families.
We need another pipeline of support, not more pills, not more maybe
promises, not more of more, we need different. We need to understand how to
communicate with individuals in the later stages of the disease. We need to
understand how to adjust and support someone in cognitive decline in ways which
enable them to still feel they are living an accomplished and accomplishing
life. They still need to find/have a clear sense of purpose and means to
achieve it. They need to maintain their dignity, self worth, sense of today,
and privacy.
We need to understand people are still home....even though others seldom
knock on our doors because we either don't answer, or answer in ways others
don't understand. When we forget your name does that mean we have forgotten
you? We no longer have a need to give and receive love? When we become
confused, when we wander, when we become agitated - these are all your labels,
not ours. What can you do to support us and make us feel good about ourselves?
You already seem to know what you can do to us to make yourselves feel good
about us – drugs, secure facilities, restraints, and did I mention drugs!
We need more research, more research dollars to fill
a psycho social pipeline of information, strategies, insights, support,
enabling behaviors. It's not dying that is the issue for me; it's the living
until then! The solution to the dementia problem is not prevention or a
cure, the solution is learning how to successfully, to fully live with the
process and consequences of relatively declining cognitive skills.
We know, we have studied these issues even less than we know about the physiological
processes – and we know so little about those processes, even after 100 years
of researching the brain.
The real horror of the increased number of deaths is not that more and more people are dying of the disease, it's that more
and more people are living with the disease. Words like cure, eliminate, halt,
reverse, delay serve the ends of fund raisers, self interested parties, and
well intended supports, but not people with dementia.
Why do so many of us have to die before how we live becomes important to
politicians, researchers, professionals? Even if the baby boom didn’t exist,
even if more people weren’t dying this year than last of the diseases of
dementia, doesn’t living with it, living in it touch most of us? Isn’t figuring
out how to live with it more important than dreaming of a world without Alzheimer’s?
A world without hunger? A world without war? All are wonderful dreams, in the
mean time how can the lives of the people and families living with Alzheimer’s/dementia,
the hungry/starving people, the collateral losses of human life in war – how can
these people’s problems be researched, supported, lessened? Why must we wait
for the dream to be a reality? Most of us now alive will be dead. Those who are
then alive when the cures come around, if they come around will still live with
the wounds of dementia, hunger, war. What’s the plan for researching and
improving their lives?
Our needs today take a back seat in the minds, dollars, budgets and research
of our champions, oranizations who use our disease on their letter heads. Research
for a cure, a delay, a slow down doesn’t just take precedence over research for
a more fulfilled live - bench research/drug company research - it (as my Grand daughter would say "RULES!" The
suffering, the destroyed families, the damaged caregivers, the folks who die
because of the disease – these real and now living human beings apparently must
die in larger and larger numbers to catch the attention of everyone so they can
try harder, spend more. Not to meet the needs of living people, but to meet the
yet to be experienced needs of people, many of whom are yet to be be born. What
has happened to our priorities? Our
humanity? Our love and respect for life, not our fear of death.
Richard
It should not be news, nor a surprise that more and more and more people are dying because of this or that consequence of some form of dementia. More and more people are reaching the ages during which the probability of acquiring one or more of the diseases of dementia rapidly increases. What should be news is how little is being done to research how to add value to their lives prior to their deaths and after their diagnosis. What should be a surprise is how little research and research dollars are earmarked for psycho social research into the impact of the disease on individuals and their families.
We need another pipeline of support, not more pills, not more maybe promises, not more of more, we need different. We need to understand how to communicate with individuals in the later stages of the disease. We need to understand how to adjust and support someone in cognitive decline in ways which enable them to still feel they are living an accomplished and accomplishing life. They still need to find/have a clear sense of purpose and means to achieve it. They need to maintain their dignity, self worth, sense of today, and privacy.
We need to understand people are still home....even though others seldom knock on our doors because we either don't answer, or answer in ways others don't understand. When we forget your name does that mean we have forgotten you? We no longer have a need to give and receive love? When we become confused, when we wander, when we become agitated - these are all your labels, not ours. What can you do to support us and make us feel good about ourselves? You already seem to know what you can do to us to make yourselves feel good about us – drugs, secure facilities, restraints, and did I mention drugs!
We need more research, more research dollars to fill a psycho social pipeline of information, strategies, insights, support, enabling behaviors. It's not dying that is the issue for me; it's the living until then! The solution to the dementia problem is not prevention or a cure, the solution is learning how to successfully, to fully live with the process and consequences of relatively declining cognitive skills.
We know, we have studied these issues even less than we know about the physiological processes – and we know so little about those processes, even after 100 years of researching the brain.
The real horror of the increased number of deaths is not that more and more people are dying of the disease, it's that more and more people are living with the disease. Words like cure, eliminate, halt, reverse, delay serve the ends of fund raisers, self interested parties, and well intended supports, but not people with dementia.
Why do so many of us have to die before how we live becomes important to politicians, researchers, professionals? Even if the baby boom didn’t exist, even if more people weren’t dying this year than last of the diseases of dementia, doesn’t living with it, living in it touch most of us? Isn’t figuring out how to live with it more important than dreaming of a world without Alzheimer’s? A world without hunger? A world without war? All are wonderful dreams, in the mean time how can the lives of the people and families living with Alzheimer’s/dementia, the hungry/starving people, the collateral losses of human life in war – how can these people’s problems be researched, supported, lessened? Why must we wait for the dream to be a reality? Most of us now alive will be dead. Those who are then alive when the cures come around, if they come around will still live with the wounds of dementia, hunger, war. What’s the plan for researching and improving their lives?
Our needs today take a back seat in the minds, dollars, budgets and research of our champions, oranizations who use our disease on their letter heads. Research for a cure, a delay, a slow down doesn’t just take precedence over research for a more fulfilled live - bench research/drug company research - it (as my Grand daughter would say "RULES!" The suffering, the destroyed families, the damaged caregivers, the folks who die because of the disease – these real and now living human beings apparently must die in larger and larger numbers to catch the attention of everyone so they can try harder, spend more. Not to meet the needs of living people, but to meet the yet to be experienced needs of people, many of whom are yet to be be born. What has happened to our priorities? Our humanity? Our love and respect for life, not our fear of death.
Richard