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330 430 Update Advanced Dementia
>> Let's move on now to Laurel, are you still with us?
>> Yes, I'm right here.
>> Very good. Are you ready to go for update on advanced
dementia panel?
>> Can you hear me okay?
>> I will get the microphone right there for you.
Fire away.
>> This is just a brief update about something that we had in the plan last year in regards
to convening a panel of experts on advanced dementia.
Based on acknowledging 5 million people estimated ton effected by Alzheimer's through the grilling
number of people estimates are about a million or more living with advanced dementia, where
there's significant disability, significant need for care giving and also a very important
area of cost in terms of the healthcare system. The research we had to review suggested that
while costs are high, satisfaction with type and quality of care has been quite low by
consumers. Consumers being caregivers more than people
with advanced dementia, you realize why in terms of getting that information.
This was the first meeting of that group I will tell you more about that meeting but
to put in context, it is planned for three meetings.
The first being focusing on research and gaps in research that we just had last week.
The second being more on care strategies, innovative care strategies, people who are
translating research findings into care models, that would be the second meeting the summer
and the third will be in the fall and related to policy barriers.
especially around hospitalization, acute care to skilled care where incentives are in the
system to move people that may not be aligned with their preferences or where quality care
is delivered. So that third session is more on policy pluses
and challenges. So very briefly, I can entertain any other
questions, the meeting that we had was I think extremely productive, there were 14 members
of the expert group an those represented a core group of people that will carry on through
the three meetings as well as people that had specific expertise in the area of research.
Briefly -- also extremely important to the outcome was the fact that there were 16 -- 15
or 16 federal folks from different divisions CMS, NIA, MRSA, attending the meeting -- HRSA
attending the meeting so really excellent sharing and collaboration.
Those folks were seated around the table in the same way so a lot of participation, question
asking and I think in a very productive way accelerated this discussion.
So the topics that were discussed during the day included presentations from researchers
around the global scanning what has been done where there were gaps, one presenter focused
on patient experience, one focused on family experience and what research was under those
areas help you to -- health services utilization was one presenter as well finally research
infrastructure and support, state of the research infrastructure and personnel funding sources,
et cetera, that was covering the water front. We did come out with the three recommendations
in terms of accelerating and helping with this area, on advanced dementia, an important
part of care. And those were in our recommendations.
There also transcript, there's PDF files, PDF document available to anyone that wants
it. The slides of different presenters.
And I think we're going to work on executive summary type of document to go with those
PDFs for people who are interested. And I'll pause there, very much looking forward
to meetings two and three. Fully thinking that these will really inform
next year's clinical care recommendations through this process.
>> Okay. Thank you, Laurel.
Questions for Laurel? Comments?
>> I think this is Jane for those on the phone. I was also at that meeting and I think the
one of the most important things was getting everyone in the room together, federal agencies
to bring highlight to a really important issue and I think we'll be able to make some progress.
There's a lot more discussion in other venues aren't palliative care in dementia, there's
more attention brought to this issue in other venues besides, IOM.
>> Bruce.
>> Just a thought that comes out of the last discussion or the G-8 discussion that ties
to this, especially in the realm of advanced dementia we need to think of care as treatment.
I think part of what I heard from Laurel was you need to look at evidence based treatment
for and build evidence base for treatment of folks with advancedded dementia, with the
same rigor we look at affecting Alzheimer's at an earlier stage.
But in advance disease at least for now, the treatment is in the care and.
>> I was at the meeting as well. So it's funny you say that because in the
meeting the paradigm shift we had was to say we're thinking about treatments but in no
way does that imply we're saying people won't get care so the focus wasn't on treatments
the bay you say, maybe it was, it was on care and what should the care be even if you offer,
don't offer specific treatment but there was definitely agreement among the group we're
talking about providing care.
>> Laurel, did the discussion that you put in your recommendations this year around the
HIPAA regulations and who has permission for making healthcare decisions later in life,
was that a topic?
>> I want to say that wasn't a topic that was spent a lot of time on but it does one
related topic was that people choices and preferences for care as themselves if they
have dementia as disease progresses, we need to begin to move that earlier in the disease
course rather than trying to elicit preferences when people are further along.
Same goes for families. And caregivers.
So the HIPAA recommendation that we keep putting in really relates more to some of the challenges
of good care planning when the patient either don't have the insight or has denial or family
is dysfunctional, whatever the reason is, that doesn't allow that care planning and
how you're caught in between the requirements of HIPAA and what you know to be important
part of caring for a person with dementia. That's related to that.
I would just say in response to Bruce's statement and Helen's statement, the focus of the expert
panel is to look at what is excellent pair for the persons with advance dementia and
their strict definition what is advanced dementia means.
Then basically say what does that care look like and what treatments contribute to that
positively or negatively but we're focusing on quality of care and figuring out how to
promote that. There is tremendous variable and how persons
with advanced dementia might experience that stage of illness until their death, we're
still talking about a terminal illness here. Some people have incredible number of Tran
signatures between hospital and nursing home and home.
Other people don't, some people have complications of certain treatments, there's tremendous
geographic variation in certain treatment and the kind of care people are given so we're
looking at improving the quality of care and then figuring out how we enable and help the
system to provide that care.
>> Were there significant gaps found in research necessary to address these questions?
Was there agreement among that? Or individual?
>> I think you're asking a non-researcher -- researchers were saying and I think in
certain areas there are signature can't gaps and why we brought up or they brought up intervention
research is there's small trials with things like decision tools for families an caregivers
to help them understand what decisions they might face and educate them about showing
that positive benefit, showing a positive benefit that they felt more empowered and
educated about how the make decisions rather than unprepared and not knowledgeable.
They felt they could make decisions that aligned with patient preferences.
However, those really -- those decision tools and educational efforts are by no means uniform
in the healthcare system, and they have been on certain specific aspects of treatment decisions
like feeding tubes for example. So ask for more intervention research has
to do with getting more information about tools for other decisions and beginning to
push those interventions upstream in the course of the illnessther than the nighttime you're
-- the person you're care giving for leaves the emergency room.
That's not the time to have discussion about preferences.
It's not going to happen. So there definitely are places research is
needed. I was most struck by the small number of researchers
in this area and the difficulty they have in accessing money for their research again
remember how much cost is extended so we had really good interactions around how to leverage
researchers, access to data through the ADRCs, get funded studies now to begin to ask some
of the questions instead of starting a new study so there were good things that came
out of it.
>> Thank you. Anybody else?
Any other comments? Shari, is this in your ballpark?
For funding accordances?
>> I was able to participate a little bit to lend my support to the notion that this
is an important conversation. I think Laurel's observation this is a small
group of researchers and studies and evidence that comes forward though important are few
in number, the question is who then do you ask to support this kind of work?
I think importantly, the conversation is circling around what are the outcomes that are meaningful
and how do you understand what the person and families goals of care are.
And I think there is some work in that space thinking how you would measure that, how would
you -- what will that look like from a health system perspective.
It is a different if you ask what individual management tactics would you employ that are
effective but they're all important questions. So again, it depends on what the nature of
the question is if they're health system related question then that would be within something
that could be proposed to CMMI or other health systems if it is a health service research
question it would be a different audience for funding regular quest.
That eye aside, keep in mind we also support quality improvement in some of the questions
can be framed that focus more on improvement of quality through technical assistance than
actually if the evidence is sufficient to support it -- a improvement strategy that
can be done as new evidence accrues through research.
>> All right. Thank you.
Thanks, Laurel. I think our last item of business, Jane.
fill us in on ACL brain resources.
>> This is a joint project. I was talking earlier about opportunities
for collaboration. This is another exciting one between ACL,
NicsA, web -- at NIH by NicA but involving other institutes at the national institutes
of health as well as the CDC. We have developed a draft brain health resource
that is designed for aging and public health professionals to educate seniors an caregivers
ways to reduce the risk factors associatessed with brain disease, so we're not talking preventing
Alzheimer's disease, rather reduce ways people can reduce the risk factors associated with
brain disease. The resource consists of powerpoint and educators
guide, a fact sheet, and a hand out to get more information about various ways to reduce
the risk factors. So the Tomics include things I think we all
know about, healthy eating, exercise, staying mentally and socially active, and that sort
of thing. This is vetted by scientists at NIH and we're
now in the design and artistic design and hope to role this out soon.
We just wanted to let people know this was going to be available soon.
We'll make sure everybody in the council is informed as soon as it's finished.
I'm trying to -- it's important to note it's written at a level that we think most people
can -- most seniors can understand. And it also covers topics such as sleep, so
not just things you may have her about. We did informal pilot testing over the summer
and I -- in Indiana, Texas and D.C. and I went to the D.C. presentations.
It's clear the seniors had heard the basic health messages, the (inaudible) for them
-- the a ha moment was when they could understand some of the for example keeping your heart
healthy, maybe connected to reducing risk to your brain.
That connection is the thing that was new for them.
So the effort is worthwhile. Hopefully everybody will promote it.
And use it. I will definitely keep your posted.
>> Thank you. Is that produced in other languages?
>> We have taken a while to produce in English but that's a goal to get it in languages second
language like Spanish.
>> All right. Any other comments?
Anything for Jane or anyone else? All right.
Any housekeeping items, please?
Q. This is a reminder to all federal advisory council members, including non-federal and
federal to do your OGE 450 by February 18th. The feds are probably getting annoyed about
it by folks they work with and I'm responsible for the non-feds.
If there are special exceptions we can push that data forward but without that exception
I need forms by February 18th. The next meeting is going to be at the end
of April. Although we are in discussion about a definite
date. But the time line for the next plan is to
have it out at the end of April. So expect the plan to be out, feds expect
all the work that happens before that to happen in the coming months.
But we're pretty sure that will be the day barring any delay or hold up or major decision.
>> Anything else? Closing comments?
Any unfinished business?
>> Can you send this out electronically and give us a fast turn around deadline for comments?
>> Sure. We can do that.
By all means. All right.
Thank you all, again, to the advisory council, federal and non-federal and to our public
members as well. We appreciate everybody's input.
We stand adjourned. Those on the phone thank you, very much for
helping out. Thanks.