The Advisory Council takes Public Input

Uploaded by USGOVHHS on 23.10.2012

>> From the comments.
We're going to do it a little deferentially this afternoon, we have got a first one on
the phone. And then jackie has a -- will have a roaming
microphone she will give to the other individuals as she calls them up.
Who is on the phone first, Jackie?
>> First person is Michael ELLENBOGEN. >> Forgive me.
>> Michael.
>> I want to thank the committee for this great opportunity to speak here today.
I consider this a milestone. Every time I'm able to be here.
Someone like me usually doesn't get this opportunity because the devastating disease take us all
away. I hope tone to be here ten years or at least
until you have a cure for me which I hope will be sooner.
Before I start into my three talking points I would also like to make some comments on
what I heard today as I heard all these different projects being planned.
As a person who plans major projects it's inavailable to greet all states for all the
projects planned. They should all be based on time line including
which resources are needed ensure the same resources are not need -- ensure the same
resources are not need Ford adjacent projects and dependencies.
Aweight red flag early on, if resources are not available or impact other projects.
Key milestone dates should be based on smaller projects combined.
That's who I used to use was Microsoft project manager which was helpful if NCI my planning.
As far as my talking point, I group them to three sessions.
Three groups here. The first set is as a person living with Alzheimer's
disease, I have experienced the devastating disease as it affects the health crisis firsthand.
I am grateful for the commitment our government has made to implement a national plan that
lay dress the growing needs of more than 5 million Americans living with Alzheimer's.
And almost 50 million caregiver whose provide care for individuals like me.
It is my hope the advisory council recognizes the valued voices of people living with disease
can bring to this process and includes our perspective in the development of the national
plan. As you know, Alzheimer's disease impacts each
of us livinging with this disease different live and my sincere hope the advisory council
will look beyond a one size fit all approach when determining the best way to address our
needs that for our caregivers. My second talking points, I was pleased to
see part of the national plan inclusion of enhancing public awareness and engaging stakeholders
in advancing the cause. It remains a vast misunderstanding of who
develops Alzheimer's disease, and challenges those of us living with this disease face
each and every day. While I have chosen to be an advocate and
share my story with with other on a national platform, as a national Alzheimer's association
gnash Al early stage adviser, the stigma and misrepresentation surrounding Alzheimer's
are so prevalent, that many people living with this disease and caregivers go through
this journey alone because they fear the reaction others of their diagnosis.
The council has the opportunity to make significant impact on this elimination of Alzheimer's
stigma and ensure individuals and family living with the dementia do not have to experience
this journey alone. My third talking points.
After receiving my diagnosis, I felt a sense of relief knowing I had an answer for the
cause of my symptoms when I discovered Alzheimer's disease is the only disease among the top
ten cannot cure or prevent, I was astounded at the lack of funding dedicated to addressing
this health crisis. Let's stop burden denning the security system
-- burdening the Social Security system. Laws need to be changed now, because there's
no clear test for this diagnosis of YOAD. Many diagnosis are delayed, many are terminated
from jobs and unable to connect long-term disability insurance because of the two year
law. Most diagnosis occur much later as happened
to me, I paid big dollars to a long term health disability plan in my company and I lost it
all because of this law. I have less than third of what I would have
entitled to and no medical coverage which I would have had because of a law that does
not work for this disease. Changes must happen until we have the better
test in place if someone is terminate Ford non-performance and have been diagnosed with
dementia at later time they have a right to go back at least six years to prove their
case, companies shouldn't get a free pass because we paid for this injustice.
The two year law is a failure to people like me with dementia.
As the council know it is national plan includes a commitment to prevent an effective treatment
for Alzheimer's disease by 2025. The time is now for the government to make
a commitment to provide the funding necessary, make this goal reality.
Currently Alzheimer's disease receives 450 million for research, compared to 5.8 billion
for cancer, 3.1 billion for HIV AIDS. By increasing funding for Alzheimer's research
we will have the ability to learn new important information that will continue to help guide
researchers in their question for cure. With additional 50 million given to Alzheimer's
research this year an proposed 80 million next year, we are headed in the right direction
but more needs to be done. Historically we know when the US Government
make as commitment to research we have been successfully finding disease modified drugs.
This was the case with HIV. And AIDS.
And for some cancers. I implore the council to do everything to
ensure Alzheimer's disease gets funding necessary to change the course of this disease before
it impacts the lives of many more million Americans.
The time the act is now. Stop waiting around for money.
We have a huge disparity when it comes to this disease.
It's also like discrimination towards Alzheimer's patients.
make the hard choices now because too many lives are being lost.
Thank you.
>> Thank you, Michael.
>> Next person, Matthew last name is JANICKI.
>> My name is Matt JANICKI as co-chair on dementia practices you could see me, it's
awkward to be here tracking by the cameras. I just wanted to thank the FACA group with
the work it's doing particularly in the area of beginning to recognize that intellectual
down syndrome is integral part of the challenge of Alzheimer's disease and related dementias.
The more I heard today the more I'm encouraged it had an affect on you guys in terms of introducing
encouraging more dialogue on this particular condition.
But particularly about the notion of introducing into other areas.
I wanted to bring you up to date in terms of what we have been doing.
We have been around a year and a half now and I gave you a flyer to see what we have
been doing. We have been working very hard on creating
a number of things which are complimenting what your goals and activities state in your
plan. One is a screening instrument.
As I saw the seven screening instrument there is isn't one that really relates to people
with low intelligence and who have other deficiencies. We have developed an instrument that will
be available most likely by the end of the year we hope you consider in terms of making
available and putting in terms information in front of people about availability when
they are faced with individuals who have faced intellectual disabilities.
We're also doing training and webinars and workshops around the country in terms of promoting
the issues of intellectual and dementia. We have also began to develop a series of
practice guidelines in terms of corresponding what you maybe doing through your efforts
one on directed towards if physicians and other toward social care.
Those will have an affect also in terms of encouraging individuals, particularly provider
organizes to anticipate what maybe the demand over the next 10, 20 years in terms of affecting
people who have intellectual and being affectd by long term conditions like dementia.
The other thing, we're working on national standards for care, working with a carve group
if you're familiar with them, to develop standards in terms of providing community care for people
who have intellectual inhibition, down sin syndrome.
We're trying to work in integration with your efforts and as we share information both with
federal officials and you individually, those brought back and forth so you consider the
whole area of intellectual disabilities an down syndrome more and more as you create
updates to the plan, revisions to it, other agenda for how things are done in this country.
Thank you very much.
>> Thank you.
>> Mary HOGAN.
>> I'm Mary and I know some of you have seen me before, I was here, this is my third meeting
and first thing I did participate in March on the telephone.
I want to thank you again, I'm here with a vested interest in down syndrome, I lost my
brother at age 49. He was diagnosed at 45 with Alzheimer's disease
and died at age 49. So I come, I remember mentioning to you in
April about the family in Nebraska and I'm here to update you on Frank and Betty.
The face of down syndrome and Alzheimer's disease.
I remind you that Frank is 88, Betty is 85 and Richard is 45 years old, and he's been
diagnosed with Alzheimer's disease. Recently Betty and Frank sent this news to
me. It was a prayer that they found in caregivers
ide. It says I want to thank you lord for being
close to me so far this day. With your help I haven't been impatient, lost
my temper, been grumpy, judgmental or envyious of anyone but I'm getting out of bed in a
minute and I think I really need your help. Amen.
So I just want to let you know the face of the disease is Frank and Betty, the urgency
is Frank and Betty and as you continue to create the plan and move forward, I think
the focus on the needs of attention to caregivers is paramount.
I came today because I know a tax group had been set up for individuals disproportionately
affected. Though it was set up in a manner that we couldn't
play an active role in the process, we are included in listening sessions.
I'm looking forward to the recommendation from Jane and the other folks involved in
that. I do hope in closing that I want to thank
the Alzheimer's association and the other private partnerships that have evolved over
the course of the last few months. I hope as you look at formulating the next
plan you will look closely at the recommendations of the non-federal members and embrace them
an include them in the upcoming plan next year.
Thank you. I'll be back with Frank and Betty for the
next time.
>> Thank you.
>> Matthew sharp.
>> I'm Matthew sharp, program coordinator for the association of frontal temporal degeneration.
I would like to thank on behalf of I would like to thank the council for offering us
opportunities to provide input on the unique issues related to FTD.
Our scientific director Sharonesterly is looking forward to participating in the scientific
workshop to address research priorities for the other dementias this coming spring.
Like Mary, we were asked to participate in a listening session with the task force on
care needs for special populations and we're very much looking forward to the recommendations
from that task force as well. We are honored to have been asked to participate
in this way on behalf of population of related dementia several have mentioned the importance
of language today during the meeting and as an organization devoted to advocating for
parents and caregivers for FTD, our primary interest in the national plan has always been
the unique challenges an issues related to FTD are fully recognized in language and actions
of the plan. So very much aware of instances where that
has been the case today and the recommendations as well as plan overall.
Again, we are appreciative of that inclusion in the national plan of FTD.
There is a few instances where -- we acknowledge FTD is included in the term AD when used in
relation to the plan but there are instances where that sort of implicit inclusion does
become a problem. In general whenever awareness comes up that's
especially the case. One of the main tasks with anybody diagnosed
with FTD is explain to everybody else why it's not Alzheimer's disease and the differences.
So anything that has to do with spreading awareness, that is one of the areas in which
explicit attention needs to be paid to frontal temporal degeneration and related dementias
in awareness efforts. Another example long term services and supports,
regarding curricula for healthcare providers. It is again very important that explicit attention
is paid to the differences between FTD and Alzheimer's disease in any of that curricula.
That is one thing that AFTD, my organization has already started to do.
We have developed educational program called partners in care which is specifically targeted
to staff members in long term residential facilities, it's a multi-media package that
is based on a awareness film but includes curricula developed by professionals in the
field of residential care. To address some of the special needs of people
with FTD in residential setting. We were very exciteed to see the other recommendation
long term services regarding assurances that people with related dementia will have access
to care and facility care and adult day programs and other things and AFTD is eager to help
and provide input in whatever way is appropriate. Relative to action number 2H 2 to remove barrier
to long term care. The other thing that caught our attention
was the notion of amending older Americans act to assure access to people with younger
onset dementia of which FTD is most certainly one of those.
That would be an issue that AFTD would be happy to support the most of our fullest ability,
the fact that most patients are diagnosed prior to age of retirement is in many ways
the keystone barrier to so much else. So making that single change would be one
of the more significant improvements for our population.
In closing, I want to thank the council for the opportunity to address you today.
And we again are impressed with the approach, the council is taking to address this goal
of ending Alzheimer's, the collaboration and partnership apparent today in this meeting
is simply impressive and we thank you for taking that approach.
>> Karen low.
>> My name is Karen love representing CCAL advancing person centered living.
I very much appreciate the opportunity to talk to you all today.
During 2012 over 60 national dementia experts came together for a one day meeting over concern
howdy men Shah care was handled in the United States.
This is a group broad-based. Diverse disciplines representing research
policy and practice and included individuals such as geriatric who wrote deminute Shah
beyond drugs. JulieETTE -- the largest senior living provider
in the country. And Jonathan Evans, incoming president board
chair of the American medical directors association. As well as 14 researchers and many others.
The point of coming together was a great concern over howdy men Shah is unfolding.
Those in the field providing dementia care in long term services and support clinically,
supporting research, have noticed that our information is not getting integrated and
infiltrated into the wider body of work. My own father had Alzheimer's disease so I
also come about this from a professional level. We have over two decades of experience both
in this country and abroad about person centered care, the gold standard of healthcare and
clinical practices. In fact, it's mandated in the affordable care
act. Specifically what person centered care does
is focus more holistically than just looking at the medical well being of somebody, it
looks at integration of mind body spirit health. Quick cam example.
When I was running a nursing hope, we had a gentleman, a family member called in historics,
their father was being kicked out of another nursing home because of behavior.
He had dementia. Our first answer was absolutely he could come.
The second was will you as a family sit down with us and tell us about your father.
In that hour discussion we learned a lot about him, took some prompting and questions on
our part. But we learned that he had had a hobby of
playing the trumpet. We knew that the behaviors with with more
than likely as a result of unmet needs that no longer could be satisfied such as hunger,
thirst, boredom. If you don't give me something to do I'll
become agitated so we understand that about him.
We asked his family to bring a trumpet. This gentleman who in the previous nursing
home had been in and out of the hospital, he had been highly medicated.
Barely functional. We worked to titrate down, got off the medicines
and his remaining two years were full of life once we got everybody loved him, once we got
him to stop playing the trumpet at 3:00 a.m. in the morning he was widely loved.
He became known as Mr. H, the gentleman who sings and plays the trumpet rather than Mr.
H who has dementia and causes problems. I can give you thousands and thousands, I
see hairy and others in the room nodding. These are -- we know how to save dollars and
have better outcome but if we're only looking through a medical model of care or if that
is the center point for the framework of care we missed all these important aspects of care.
So I'm representing the dementia experts and we respectfully ask the advisory council to
look more broadly to the plan right now is file on person centeredness despite the fact
it's keystone of the affordable care act and we are available and want to support the committee
and helping to integrate this a little bit more holistically.
Thank you very much for the opportunity.
>> IAN claimer.
>> Good afternoon, I'm IAN Kramer for leaders engaged in Alzheimer's disease A coalition
of about 50 organizations in the dementia serving spectrum.
We stand ready to help the advisory council in any way, all of our members would be happy
to not only provide recommendations but help with the lift on some of the intellectual
capital to translate those into practice an adoption.
I want to reel through some quick points then pass this off to folks that perhaps have stories
to share that can eliminate the need for not only y'all to continue the tremendous work
you're doing but to get the administration to translate into life-changing results.
The first is -- I'll allude to a point made in previous public comment, you have before
you the office of public management as a tool within the Federal Government to be a laboratory
for many things you have talked about particularly in terms of patient and caregiver education.
I would urge you to figure out what are the obstacles by sitting down with OPM and working
through those obstacles and take advantage of the 2 to 3 million people in that network
of active federal employees and through the relationships with government unions to get
to the retiree populations as well and see if you perhaps have a pool of people interested
in helping to do whether it's environmental scans or act as laboratory of good ideas,
even to do things like assessment of work force productivity.
You have a great pool of people to work with this.
>> Second is alluding to what Dr. Hodes and others talked about coordinating the international
research effort. One most important thing there, some work
has been done on this but it's coordinating specifically the investment of the limited
pool of federal dollars whether U.S. federal, British, or other countries around the world.
To use an analogy to the world of agriculture, we don't need everyone producing wheat.
We need some producing wheat, some producing corn, some producing rice.
And finding better ways to produce each of those.
So to the extent dollars are limited not just in the United States but around the world
among all the governments, coordinating that strategy of who should lead the investment
maybe not exclusively but at least lead the investment in certain areas of the entire
research agenda, there maybe some efficiencies to be gained there and in that respect perhaps
expedite the solutions we're all looking for. Third is in terms of the state role in this,
Dave and others have spoken to this a bit, we need more creative ways for new incentives
beyond federal matching dollars for states to invest in Alzheimer's and dementia specific
research. They may do it in different ways, use different
mechanisms, but they need help to get it done. I think we're all aware of the fact you can't
shift -- you can shift the burden of the states but it doesn't always work out so well when
states are facing they other substantial budgetary challenges.
So looking for ways other than offering a federal match toent sent vise participation
in research enterprise, at any point along the research continuum whether the science,
whether it's care giving research aspects, as Dave alluded to and other areas look for
what the states are interested in and help them get their piece of the research done.
Last point,ologies in advance if this is particularly the least politically savvy or appropriate
thing I have said today but I'll give it a shot.
Sequestration is the elephant in the room that's hard to talk about but incredibly important.
We all know from our own case examples of risks of sequestration to Alzheimer's research
enterprise in the Alzheimer's serving community. But it needs to be articulated at this level.
I don't fool myself into thinking that the secretary's report will be dominated by impact
of sequestration. But part of the beauty of a panel like this,
you're free to speak ain't. Whether anyone listen -- about it, whether
anyone listens you're free to speak ain't loudly and candidly.
If it's before sequestration takes effect and if we don't dodge that bullet after sequestration
takes effect it's important for a body like this to document what the impact will be on
the research enterprise but also to care giving. It's not that hard, you already have the data
about what the federal investments are in Alzheimer's.
In care and support and research and other things.
I think if not the eventual secretary's report certainly the work groups in this body could
put together those tables in one place and show what the cuts mean.
How that translates. It's a little less money but eliminate of
critical support programs and services, it is kiss Goodbye a number of avenues of support
research. There are more he will quantity ways of saying
it but at end of the day sequestration in the Alzheimer's space and others will cost
a lot of lives. That needs to be articulated not just from
the audience but all of you need to to continue articulating that and breathing life to that
message so everybody hears it throughout the Federal Government.
Thank you.
>> Gail Gibson hunt.
>> I'm Gail hunt, CEO of national alliance for care giving, the organization that does
most of the national research around family care giving.
I also happen to be on the board of the patient centered outcomes research institute which
is a group that I'm sure those in the Federal Government anyway know for the moment anyway
where funding -- we're going to be funding $200 million worth of research this year.
But the real reason I came was really to just be sure first of all to say I couldn't have
been more delighted at the conversation about care giving.
I know transportation and housing are needs as well that have to be addressed for people
with Alzheimer's. But I just was thrilled for the moment anyway
you guys were talking about family care giving and the impact.
I think it's important you remember as you're doing that people -- lots of people are caring
for now. Even if we got a cure in 2025, we're still
going to be having people who already have Alzheimer's and they ire cared for so we have
to be sure to remember their issues. You have just today recap a little, you have
talked about caregiver assessment. Health IT to support caregivers, family care
tax relief, advance care planning for looking at end of life issues since as pointed out
Alzheimer's is a terminal disease. And studies of impact of Alzheimer's care
giving on caregivers and the assessment of caregivers' health which is a topic we have
looked at and I think really worth some research time.
Lastly, maybe pie in the sky, double funding of the national caregiver support program,
part of the older Americans act. Thank you.
>> Next is sue PEXCHION. CESCHION.
>> I serve as Chief Operating Officer for the alliance for aging research.
Thank you for letting me comment today. I had a couple of thoughts based on the discussion
that occurred today that I wanted to share. The first was I was very encouraged by some
of the comments that came upcoming up with specific numbers for costs for various programs.
We are right in the middle of budget season or at the tail end of budget season for FY
14. It's very, very important to articulate to
the office of management and budget which for those who don't know is the federal agency
that develops the president's budget for the year to articulate to them specifically what
we want, not to just say we need more money for research, a couple of billion dollars
for this, or we definitely need to double X, Y, Z.
But to actually say specifically we need $50 million for a program at HRSA or $100 million
for geriatric education centers. Or whatever it is we want to ask for.
I really want to encourage the non-federal members that serve on this advisory council
to be very proactive about that. Moving forward from now on that you say we
want this as a specific amount of money in the next year's budget.
At this point -- not to necessarily have to have formal meetings but to really come up
with these numbers within your subcomittees and articulate them to the agencies.
Not only to articulate to OMB but to the head of those programs because one thing that we
have learned in the process of going to OMB the last couple of years is OMB doesn't like
to micromanage. So if you're interested in a specific program
at HRSA, you have to go to the HRSA representative that's on the advisory council or to the head
of HRSA itself and say this is what we're asking for for Alzheimer's disease and we'd
like you to support it. So I want to encourage folks on the advisory
council and all the folks interested in this issue to get actively involved in the budget
process. That's what the defense folks do, that's what
the big players in Washington do. When it gets to the point at appropriations,
it's kind of done because the budget process guides the appropriations process.
At that point you're basically complaining about something that's already occurred and
you missed the boat. The next comment I want to make has to do
with public private partnerships. I want to give a thumbs up for taking the
initiative to convene the first gathering around this.
I think it's great to get the ball rolling, that's a great way to go about it.
We're very excited about it, the alliance for aging research and coalition we chair,
would like to throw our hat in the ring being part of that process, as actively involved
as possible. One thing I wanted to mention in relation
to (inaudible) in our activities is that there was a recommendation made by the research
committee here regarding coordination of international regulatory hurdles.
I wanted to let folks know there's actually a conversation that is going to be occurring
at the CTAD conference at the end of this month.
This conference is going to be no monoco representatives from both the EMA and the U.S. FDA are going
to be there specifically to talk about this issue in a symposium.
The symposium is being organized by -- so it will be terrific.
Dr. Katz will be at that symposium to report to research subcomittee specifically or to
all of you about what happened at the symposium when that occurs.
Couple more things. There is reference made to community based
screening and the conversation about the Medicare wellness visit.
I just wanted to put in our endorsement, the alliance for aging research has been a proud
supporter of national memory screening day since getting supporters on board.
We think it's a wonderful program, a community based program.
I think you have to be careful about making sort of generalzations about community base
screening unless you know about the program itself, it's a great training they provide
to folks, advisory board that's part of it. We're in good company with groups like American
academy of neurology, the American geriatric society, and the gerontology society of America,
all in support with other groups. The great thing about this type of program
is it's done a wonderful job reducing the stigma and letting people know they can go
to a senior center to long term care facility and doctor's office in the many different
settings they feel comfortable and get memory problems looked into.
Can you currently we know there's a big problem with.
So just wanted to put in a word about that. in line with that, -- one more thing, there
was something brought up about multi-cultural sensitivity and I did want to mention that
for at least the last two years national memory screening day is actually conducted both the
GPCOG and miniCOG in English and Spanish so that may inform discussions around the use
of screening tools in other languages. Then last, I wanted to praise the centers
for Medicare and medicaid services, and national institute on aging in particular for the work
they have done, the collaborative effort they have engaged in on the Medicare wellness visit.
I don't think I ever would have imagined it would have tuned into what it's turned into
because the final definition of definition of cognitive impairment was based on individual
reporting or third party reporting and to get to this point where agencies are working
together also in collaboration with the CDC and the BA is spectacular.
And I think it will send a wonderful message to the clinical community to say this is something
that you need the look into, there are things you can do, pharmacological and non-pharmacological.
It's an amazing effort. So thank you all so much.
>> Molly per due. Okay.
Next, Darla Spence coffee. Good afternoon, I'm Darla Spence coffee, president
of council social work and education an I want to add I'm also very, very grateful to
be here and for the opportunity to make comments on the national plan to address Alzheimer's
disease. From the perspective of social work education
community. It's not part of my prepared remarks but also
like to second and endorse the notion about including language of person centered care
that's very consistent with social work education. We focus on a person centered strength based
assessment and looking at the whole person, that's consistent with what we do in our program.
So council and social work is a non-profit associationment we represent 2500 individual
members an 700 institutional members so all of our programs are schools of social work
are also members. We are also accrediting body for social work
education programs here in the U.S. as well as Puerto Rico.
Social work education prepares students for leadership and direct practice roles for helping
individuals, families, groups an communities. Navigate and overcome challenges in every
day life. Over the entire life course.
We pay particular attention to providing culturally sensitive and relevant care.
On behalf of the social work education community I commend the advisory council for recognizing
the importance of nurturing the work force that supports individuals living with Alzheimer's
disease and other dementias. In particular I would like to thank you for
including the recommendation in your May report urging expansion of funding and incentives
for healthcare providers to become more knowledgeable about dementia and encourage individuals to
pursue careers in geriatric specialties. These investments are desperately needed and
social work needs to be included in that investment. Social workers play vital roles in integrated
healthcare teams across the country. In one -- we have got concerns about our pipeline.
One view of this concern is that today there are approximately 55,000 social workers in
long term care settings. By 2050 it will at least double the need.
We have concerns because the last couple of years, an average of 5% social work graduates
pleated a special session in aging. We will reach a breaking point if new investments
are not made today to neuroture a social work pipeline that general its ra crop of professionals
skilled to work with adults, older adults and specifically competencies to work effectively
with those suffers from dementia. S.
They urge the advisory council to continue to press Congress to increase funding for
geriatric education and training through the title 7 and 8 health professions programs
at health resources an services administration, as well as to increase funding for loan repayment
programs for those who work in underserved communities.
Second as an organization guided by educational mission, CSWE play as central role in the
development and dissemination of curriculum covering a variety of practice areas.
For example, through our John A. Hartford foundation funded national center forrier
to logical social work education we enhanced capacity for faculty and prepared students
with competency to work effectively with older adults and their families an caregivers.
We applaud the council recommendation that HHS partner with health professions programs
and organizations to work toward development and use of geriatric specific curricula and
we're's tore help disseminate it to programs. The social community is epicouraged by the
efforts to tackle this horrible disease and stand ready to assist by equipping the work
force with the skills needed to provide effective care and services.
We hope the advisory council will continue to recommend additional investments be made
to address the needs of the entire work force pipeline.
We're also happy to participate in future dialogue about public private partnership
and addressing pipeline issues brought up here today.
Thank you again for this opportunity express these views on behalf of the council and social
work education. We're hopeful it will continue to be a theme
in next year's updated national plan. I would be happy to provide additional information
about CSWE and efforts to promote geriatric competencies among social work students and
mechanisms to to dementia specific content to all of our programs.
Thank you. >> Maria CORILLO.
>> My name is Maria (indiscernible) Alzheimer's association.
vice president of medical and scientific relations. I'm here to talk a a little bit more about
something that came up this morning earlier. I would like to expand a little bit on the
comments regarding advancing the goals of the national plan by taking advantage of broader
activity. An important example and I think perhaps a
missed opportunity is the evaluation of appropriate risk benefit in the development of treatment
for various disease as required by the recent prescription drug user too act or PDUFA 5.
The Alzheimer's association convened a subcomittee of the experts on industry experts in drug
development, for recommendations how to compress the time line T drug development time line
keeping with the national plan goal 1E 1. The experts noted that underlying many opportunities
to accelerate the time line are discussions of risk benefit.
Despite this T list of 20 proposed conditions to be considered by the FDA under PDUFA do
not include Alzheimer's disease. Alzheimer's disease is not on the 20 list
of conditions. Given that accelerating treatment development
is critical to the first goal of national plan and risk benefit is essential to achieving
that goal, the Alzheimer's association believes it's very important to advance this conversation.
We and partners will be responding to the PDUFA open commentary and we will state that
we should advance Alzheimer's disease not only to be included in the 20 but actually
be at the top of the list and the first condition to be considered by the FDA under PDUFA.
We think this is very important to take advantage of in terms of the timing.
In order to maximize our opportunities to advance the first goal of the national Alzheimer's
plan. Thank you all very much and thank you to the
advisory committee for your continued efforts.
>> Thank you. Next Gail
>> I was also at your meeting in May. The work force alliance believes that access
to quality healthcare for older adults with cognitive impairment is vital to healthy aging.
As noted in my comments at your meeting in May, we strongly support recognition of importance
of work force issues as outlined in the strategy 2A which calls for ability of work force with
the skills to provide high quality care and goal 3 supportive family care givers.
I would like to start my comments by celebrating some of the accomplishments of the last several
months. We are pleased that some additional funding
was made available for multi-disciplinary education an training programs through geriatric
education centers. This is a positive initial response to national
plans recommendation that HHS undertake a comprehensive provider education effort.
Of course greatly increased funding will be needed to undertake truly comprehensive effort
and enhance programs that enencourage providers to pure sue specialties.
As noted in the national plan the affordable care act did include expanded training opportunities,
however a number of opportunities did not receive appropriations in the years since
the law passed. We urge you under council to make additional
recommendations with regard to increased funding for work force education initiatives.
Geriatric education centers another HRSA program in strengthening the work force funded at
levels too low to respond to the need to enhance care quality and efficiency for the growing
number of older adults with Alzheimer's disease and other chronic conditions.
I want to chime in on -- in through -- IAN's remarks about sequester.
Tomorrow my colleague is on the hill doing meetings on this very topic about the need
for geriatric training for programs and we essentially urge you to weigh in on that because
it is going to effect everything done in the next -- certainly the next fiscal year.
We also applause the progress so far and dissemination of information about Alzheimer's disease,
dementia and care and support system. We believe geriatric competencies and dementia
training should be included in training for all primary care clinicians and staff.
If they do not interact with people in these conditions they certainly will in the years
to come. Moving forward building the elder care work
force needed to achieve the plans goals. For example we urge to advocate inclusion
in the plan of the clinical care subcomittee recommendation to increase funding for loan
repayment and other incentives who study geriatrics an gerontology.
Furthermore, we recommend it be made permanently eligible via statute.
For federal loan forgiveness to reflect urgency and need to develop the work force.
We also believe the goals an strategies for bolstering the care work force were insufficiently
addressed in the national plan. We strongly support the long term services
and supports of the recommendation for healthcare provide training an adequate training and
compensation for professional caregivers. We recommend CNAs an home care AIDS and supervisors
be required to take at least 120 hours of training, including explicit consent tent
and minimum training standards an competencies for non-clinical care workers should be created
and adequately compensated. Finally, EWA urges the council to consider
advocating for improved access to Medicare and medicaid home an community based care
services to allow individuals with Alzheimer's disease to stay in their homes as long as
possible. Thank you again for the opportunity to make
comments today.
>> Rod grant are you on the phone?
>> Yes.
Q. Please proceed.
>> Hello.
>> You may speak now. I'm Ron grant, my wife and I live in Oklahoma
City, we have been married 42 years and have two daughters, two granddaughters one grandson
and one grandson on the way. For a number of years after receiving doctor
rate degree I worked for chaplain for the Department of Corrections here in Oklahoma.
Five years ago this month at age 55 I was diagnosed with Alzheimer's.
Probably one of the most devastating times of my life.
I was table to work for a little over a year after my diagnosis.
Since that time since I had to take disability retirement I have tried the stay active as
a advocate with the Alzheimer's association. I served as a national early stage adviser
for the Alzheimer's association. I currently am ambassador for my representative
Tom Cole here in Oklahoma. And I just want to tell you how thankful I
am for the results that we're seeing with this national plan.
It's so encouraging to me that a person with this disease realizing there's not much in
this plan that's really going to help me personally. But help those that are diagnosed after me
and to help the families of those that are diagnosed, this is just been extremely exciting
to me to see this come about. I'm so thankful for what the efforts that
y'all have put into this. When we look at this national plan, the part
that has care planning when a person is diagnosed and encouragement of early diagnosis, and
education of providers, I receive diagnosis in the form of a letter through the mail.
And it stated you need to come to my office as soon as you can to pick up a prescription.
This disease is progressive and if you need to see me, please make an appointment.
Well part of what you're doing with this plan is keeping that from happening.
I went from that point of receiving that letter to trying to find out what is this disease,
how is it going to affect me, how it will affect my family.
There was no one telling me things like advanced directives, durable powers of attorney.
No one was telling me about what to expect. Now in this claim, this is a small part of
the plan. This what you helped implement that. Is so
encouraging to me because I know the devastation on my family an think we're at a point we
maybe able to start that from -- stop it from happening to more families really, that's
the reason I work as an advocate. One more thing to say in closing, as you continue
to work on this plan and revise it and implement it, please, please, please consult with those
of us who are living and experiencing this disease.
We can give you information from such a different perspective than anyone else can.
Make use of us while we're able to be made use of, I ask you so much to consider that.
Thank you for your efforts I take my hat off to you.
Thank you.
>> Julie Dobson.
>> Thank you. Thanks for the opportunity to speak to such
an important panel today. My name is Judy Dodson, with me is my daughter
Lindsey as well. I'm a member of the classic sandwich generation,
you all know it, both my parents are alive, I have two children at home, a husband to
take care of, care giving is a small part of my day but I'm one of the over 15 million
of this neigh's caregivers, here today to share our story to advocate for the Alzheimer's
organization association and leave with hope that progress can be made for this dreaded
dreadful disease. We have a family history of Alzheimer's, I
have lost both grandparent and mother's eldest cyst tore the disease.
My 8-year-old mother is suffering for over a decade.
And honestly probably more than that but she was an educated registered nurse at Massachusetts
general. She knows more than anybody there's nothing
you can do about the disease so no reason to seek help or seek treatment.
In 2002 we tried to get her to move to Maryland and become part of a trial at NIH.
The result which she didn't speak to us for a few months.
We called her doctor, she lives in a rural town in New Hampshire, after dock asked her
for help in diagnosis an treatment but you have to have to have a willing patient and
with Alzheimer's there was no willingness in her mind, no capacity to understand.
So the result for her is no formal diagnosis, no test when she was capable of being tested,
and no real treatment she did you will metally receive air September for memory, treatment
and antipsychotic for depression but neither drug changed her -- really impacted her diminished
mental capacity. My mother has been an angry Alzheimer's patient
trying so hard to maintain her independence while becoming increasingly difficult to manage.
She refused to take medications, it was a daily ritual and argument in the morning and
evening that resulted in pills being thrown across the kitchen.
Though she watched her own sister deteriorate over five years, she lived in constant denial,
constantly, frequently telling my children I'm so glad I don't have Alzheimer's disease.
Adult day care similar possible for some with with this disease since my mom didn't believe
or want to accept she had it. She didn't need anybody watching her.
If my dad left her alone she could be found are the streets in search of him.
if he lefter with a caregiver, even a familiar face, she would be become physically aggressive,
hitting, scratching, running away, and no medicine we tried could control that behavior.
My dad truly had no options to get a much needed break.
So the result was the family has to step up to the care giving or we'd lose my father
as well. They lived ten hours from me and it was challenging
and although the challenging and time away was expensive was the cost with my family
T lost time with my children to pick up my husband had to get up to, missing kids activities
at school, missing home work, everything that goes along with being a mom as well as being
a daughter. The other impact is that which my kids witnessed.
Watching her grandmother lose her ability to communicate.
Witnessing her unpredictable and violent rages sometimes, were just watching her deteriorate
so slowly. Both of my kids have been patient.
I'm blessed. My daughter has taken her experience and put
it to work earning her girl scout gold award by educating teenagers on Alzheimer's.
I final live moved -- putting my father in the hospital to have both nearest placed and
taking that opportunity to put my mother in a nursing home.
She was totally confused anyway and in the throws of the disease.
It made it the perfect opportunity for transition. But it was -- for transition.
But it was the traumatic experience of my life.
The first time I chose to put my mom in, assured me of skilled memory care and lots of activities,
it sounded great. But they actually ended up locking my mother
in her room because they couldn't deal with her behaviors.
She tossed the medicine cart a few times, through a dinner plate and she begged and
begged and begged to leave. So for $9,600 a month they then asked me to
hire a full time aid at $17 an hour to sit with my mother.
About $12,000 into it, that wasn't going to work for either of us.
So the next time I chose is a dedicated Alzheimer's care facility and she's in the right place
now. But at $7,600 a month, my parents savings
will be gone within a year. Where they were once pretty secure for their
retirement, they're soon to be broke. My father's sense of pride is shot.
Not only he can't take care of the love of his life for 60 years, he can't afford the
place we want to keep her. Like most dementia units, it's solely private
pay. If she has to go on medicaid she has to move.
Here is the worst part. The closest medicaid facility for me is the
one I had her in first. Less care, more expensive, what kind of choice
is that for any of us. Here the national Alzheimer's plan is the
out most importance. The disease doesn't have enough attention,
it's woefully underfundd by the Federal Government and costs are sure to be born by my children
and grandchildren and it scares me. I'm so pleased to hear today of the proactive
work going on, I need my test now, I need treatment now, not after the disease has started
its progression. We clearly need more education, everywhere
in the system for the public, for medical community and the millions of unpaid caregivers.
We need more options and standards of care enforced.
We especially need more ways to treat this disease before we have 16 million people and
a trillion dollars a year in costs on our shoulders.
Thank you all for all you're doing and your time today.
>> Thank you. Holly walker.
>> My name is Holly walker from Alexandria, Virginia, I'm an advocate for the Alzheimer's
association. My fist experience with Alzheimer's when I
was a little girl my grandmother came to live with us because she couldn't live on her own.
The years passed she became bed ridden. In college my summer was spent NCI as grandmother's
caregiver. I administered medication, changed diapers,
bathed her, fed her all met with a lot of resistance from her.
As the years took their tolls on my grandmother they also took a toll on my mother's health.
I can see her physical deterioration, the repeated arm injuries and strained neck all
due to lifting my grandmother several time as day over the course of seven years.
With Alzheimer's disease, it's not just those with the disease who suffer, it is also their
caregivers. Caring for an individual with Alzheimer's
often falls on family and friends. In to 201,115.2 million family members and
friends provided 17.4 billion hours of unpaid care for people with Alzheimer's or other
dementia. Shortly after my mother's physical decline
I noticed the mental decline. A year after my grandmother passed away in
2004, my mother was diagnosed with mild cognitive impairment which we were later told was thought
to be Alzheimer's disease by her doctors. She was only 64 at the time of diagnosis.
My siblings and I scattered across the country and still rearing our own growing families
had countless meetings, conference calls and conversations regarding the care of my mother
and her future. Thankfully we know so much more today about
this disease and have more support available to us than my mother did 30 years ago as she
started caring for my grandmother. Information supports I believe could have
been a life saver for my mom. As of now my mother is still living in her
own home with care givers in her home 24 hours a day.
Thanks to the resources available through the Alzheimer's association we are currently
working with a care management firm that coordinates my mother's care on our behalf.
These are resources we had no idea existed until we turned to the Alzheimer's association
for help. Utilizing these resources finally allow missister
who lives with the day to Kay care giving responsibilities to finally be a daughter
again rather than full time caregiver. 60% of unpaid caregivers of people with Alzheimer's
disease and other dementias are women. 26% are caring for both someone with the disease
and a child or grandchild. My family I know my younger brother and I
often felt my mother's absence as she fulfilled her role as caregiver for my grandmother.
I want to thank you for the work you're doing on the first ever national Alzheimer's plan.
It's amazing to see the progress made from the time my grandmother was sick to my mother's
diagnosis today. There's still a lot to be done.
In order to help prevent and effectively treat Alzheimer's disease as well as provide much
needed support and resources for the caregivers. Obviously it's the very personal issue for
me. I often wonder who will be next in our family
to fall pray to this disease. I hope success will be made to expand support
for people with Alzheimer's disease and their families.
I can't help but think of my own son who is 21 months old and what a great impact for
good a national Alzheimer's plan can have on him and his future.
Thank you so much for your time. Thank you.
Steve human.
>> Good afternoon, my name is Steve HUME, Alzheimer's ad co-investigate.
And former past board member of the national Alzheimer's association.
As a person diagnosed with Alzheimer's five years ago I want to thank the council not
only for the quality of the work you're doing but intensity as well.
It's a huge undertaking, taken on by people that I know have so much more to do in life
as well. Last February I had the opportunity to attend
your two day meeting. And to comment at the end of that.
During that meeting the subcomittees broke up and discussed their own goals related to
that topic that they were dealing with. As I listened to one group one of the members
questioned why it was so hard to gather momentum for this disease.
Another member turned to her and said I think it has to do with the myths, stereotypes an
misconceptions of this disease and of those who have it.
I thought about that for the rest of the day. And as I was leaving, it occurred to me that
we really didn't need to look far beyond this council to understand at least in part how
those myths how those stereotypes and those misunderstandings operate.
I was in a room filled with intelligent dedicated people making decisions about my life.
And there was no one like me a person with Alzheimer's disease a consumer at the table.
I do appreciate the efforts that have been made to gather input from people with this
disease and from their caregivers. I don't believe, however, that imput gathered
in global ways such as this, are a substitute for real time ongoing input into the process.
So I guess I'll leave you with some questions. First of all what do the members of the council
think about the fact that you do not have anyone a consumer on this council.
Secondly, given the statutes that govern the council, to include persons with dementia
in the on going process in a meaningful way. Thank you.
>> Thank you. (indiscernible) Mary Ann sterling.
>> Good afternoon. I'm Mary Ann materialing CEO of sterling health
it consulting. I am Alzheimer's association ambassador an
caregiver. When I last spoke to you in July, I shared
a snap shot of my family's journey, long journey with dementia, including the loss of my father
to this disease, and current challenging with my 82-year-old mom who has multiple chronic
conditions including mild cognitive impairment. I come here today to share an update with
you. We have been dealt another blow this summer
as my father-in-law recently diagnosed with dementia, for those that are keeping tally,
that is three out of four parents. My husband and I are still processing this
crushing news, it is overwhelming. No family should be in our position.
We have given away a huge chunk to deal with my parents health issues future dementia is
bringing to my inlaws. Simply put, we cannot afford another parent
with dementia. This gives urgency to implementation of national
Alzheimer's plan. But I'm also a realist.
A cure won't come in time nor my family. I want to stress the importance of the swift
implementation of goal to enhance quality care and efficiency and goal 3, expanding
reports for people with Alzheimer's disease and their families.
These are critical right now. Today.
For my family and others like us. Struggling to support multiple family members
with dementia. I cannot overstate the urgency as others said
so eloquently this afternoon, new interventions to better support the family caregiver who
remains day after day, the front line of care for people with Alzheimer's disease.
Finally ground breaking work you have established thus far and dedication to families like ours.
>> I would like to thank all of you for your moving input and important insights to this
disease that we all recognize. So I think that's it.
Are there any other comments from the council itself?
Otherwise I would like to thank the council members, the public and I think we stand adjourned.