Alzheimer's Update The beneficial surprises of caregiver research - OHSU
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WINTER 2022
Alzheimer’s Update
The beneficial surprises of caregiver research
Enrolling in a caregiver research study at OHSU inspired
Douglas and Jane Grube to reflect upon their life goals and
make some important decisions
W
hen Douglas and Jane not only helped them re-evaluate
enrolled in the READyR their lifestyle needs, it gave them a
study, they didn’t think better understanding of each other
it would inspire them to make and of their journey ahead.
some life-changing decisions. “I guess when you give, you receive
Being reguarly interviewed too. Even though it was not part of
by study coordinators helped the game initially,” says Jane. “The
the two reflect upon their own universe gives back when you
priorities and eventually led volunteer to give something.”
them to downsize their home and
The READyR study is one of the
move to a different part of the
pilot studies originating from
city. Volunteering for the study
ORCASTRAIT, a Roybal Center and
a division of the Layton Aging
and Alzheimer’s Disease Research
Center that focuses on caregiver
research.
The study connects cohabitating After moving around the world, the
couples with trained research Grubes settled in Oregon to be closer to
staff who help them assess current their two sons and their families
and future dementia-related care
needs. ORCASTRAIT uses in-
in Portland or wherever,” says
home monitoring technology, a
Douglas. “For us, the study has been
combination of digital devices and
very fascinating.”
sensors, along with identification
of potential care needs. After decades of working in
Douglas and Jane both advocate for
increased participation in clinical trials international development, in
“I hope the research leads to some
and research studies teaching at universities around
improvement among people living
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A P U B L I C AT I O N O F T H E L AY T O N A G I N G A N D A L Z H E I M E R ’ S D I S E A S E C E N T E R Alzheimer’s Update WINTER 2021 1
Global researchers convene in 2021 for
the Alzheimer’s Association International
Conference
by Kaitlyn Bertholet, Regional Coordinator,
Alzheimer’s Association Oregon and Southwest Washington Chapter
D
uring the last week AAIC is crucial. Alzheimer’s globe, including local research
in July, over 11,000 disease and other dementias initiatives from OHSU at the
attendees from 110 are a growing global health conference.
countries joined the Alzheimer’s crisis. Over 6 million Americans, Many pieces of groundbreaking
Association International including 69,000 Oregonians research were featured at AAIC
Conference (AAIC), both and 120,000 Washingtonians, 2021. Themes that emerged
onsite in Denver, Colorado are currently living with the from the conference include:
and virtually. Each year, AAIC disease. The only way we are
• Advances in imaging and
convenes the world’s leading going to solve this crisis is
biofluid biomarkers of
basic science and clinical through research. Convening
Alzheimer’s.
researchers, next generation leaders in the field creates
investigators, and the dementia opportunities to share research • Taking action on social
care research community. discoveries that will lead to new determinants research in
preventions and treatments, as brain health.
The need for conferences like
well as improvements in early • Risk factors for dementia
detection, diagnosis and care. around the world.
The dedication of As a Regional Coordinator and
Research Champion with the
• The impact of the
pandemic on research and
researchers from Alzheimer’s Association Oregon resilience.
OHSU and other and SW Washington chapter, I
had the opportunity to attend
Multiple studies focused on
institutions show us the conference virtually.
the relationship between air
pollution and dementia risk.
Having lost both of my
that there is a growing grandmothers to Alzheimer’s,
Building on past research, the
legion of researchers I am passionate about
advancements in research
dedicated to the fight
CONTINUED ON PAG E 7
and deeply hopeful for the day
against Alzheimer’s when dementia no longer exists.
Learn more at
It was inspiring to learn about
disease. studies happening around the
www.alz.org/AAIC
2 Alzheimer’s Update WINTER 2021
2
CONTINUED FROM PAG E 1
have experienced this, in our
professional lives, where we have
provided a service, if you will,
and also, particularly in other
countries, got service back.”
Douglas and Jane did not expect
the world, embarking on several to receive anything from their
cross-country moves, and being participation except for caregiver
married for over 55 years, the guidance, expert advice about
Grubes transitioned into a new memory issues, and MCI-focused
chapter of their lives a few years community support.
ago. After Douglas’s diagnosis with Unexpectedly, participating in the
mild cognitive impairment (MCI), READyR study helped the Grubes
Jane became his caregiver. Though envision their future together,
there have been difficult moments, reflect upon their life, and fulfill
they’re taking it in stride. Douglas and Jane in their new apartment some long-term goals.
“We’re still in the beginning stages. on the day they first moved in.
“We like investing in the future
There is frustration, lack of privacy, of other people,” says Jane. “If
lack of independence and a lot of we have contributed, that’s
doesn’t stay silent about his feelings
grief. And a lot of love,” says Jane. wonderful, because we have
and hopes his story inspires others
“He’s been a good husband and benefited too. Volunteering is also
to be more open, participate in
father and still is. And I wish he a commitment to the future. We
research and take opportunities as
could remember how good he is and volunteer so that there are ways
they come.
how wonderful he is.” for other people to go forward,
“I would encourage people not
For Douglas, living with mild not just yourself. You never
to hide so much, and to take
cognitive impairment has simply know what you will get out of
opportunities to open up, even to
been “frustrating as hell.” It participating in a study.” ■
a small amount of people,” says
impacts him in small ways, such
Douglas. “Don’t hide. There is
as having trouble participating in
nothing to be ashamed of . It’s an
group conversations. However, he
illness. Talk about it.”
Learn more about our research
Though the past several months
by contacting our team at
“We like investing in have been tough, he has gotten
503-494-7647 or emailing
support not only from Jane, but
the future of other also from their two sons and
adresearch@ohsu.edu.
We have information about:
people,” says Jane. their families, a network of close
friends, the study team, and • The READyR Study
“We volunteer so community resources such as the
• Aging and dementia
that there are ways local chapter of the Alzheimer’s
Association.
research
for other people to “Volunteering for this study
• Family Caregiver research
and support
go forward.” is about giving and getting,”
says Douglas. “Both of us
Alzheimer’s Update WINTER 2022 3
CAREGIVER CORNER
Every gift counts
by Allison Lindauer, Ph.D., N.P.
Associate Professor and Director, Outreach, Recruitment and Education at the
Layton Aging and Alzheimer’s Disease Center
A
s the lead of Outreach, Recruitment surprised to receive a generous gift of over
and Engagement at the Layton Aging $24,000 from the Fraternal Order of the
and Alzheimer’s Disease Center, I Eagles in June. This vibrant, determined
often meet people who want to donate to our community group pooled their resources
center. We are dependent on families like the from all around Oregon to provide this
Laytons and people like you to provide the impactful gift. They presented it to me at
extra support we need. We simply can’t do their annual convocation. It was exciting for
our work without your generosity. Every gift us all. I was speechless with gratitude.
matters. Along with the financial boost, your
Again, every gift makes a difference. If you’d
gifts send a powerful message of support for
to talk to me about our Center, I’d love to chat.
our team. Working on identifying treatments
You’re welcome to call me at 503-494-6976.
for Alzheimer’s disease, and effective ways to
As always, share your ideas with all of us.
support families, takes determination and a
Follow me on Twitter: @AllisonLindauer.
commitment to the “marathon” of this kind of
work. We love our work, but like any team, we Thank you to those of you who support this
need fans like you to cheer us on. critical work with your gifts, and to the
Eagles, for their generosity.
That’s why we were very excited and
Support is available—call us at 503-494-7467 to
learn about our caregiver programs and research. In
addition, the Multnomah County Family Caregiver
Support Program - 503-988-3646 - and The
Alzheimer’s Association, are sources of support, 800-
272-3900. Oregon Care Partners offers free caregiver
training online: oregoncarepartners.com. ■
If you want to support our efforts, please use the
enclosed envelope in this newsletter or make your gift
online at: Layton.SupportOHSU.org.
4 Alzheimer’s Update WINTER 2021
2
COMMUNITY CORNER
The Community Advisory Council provides
guidance to Layton Center
L
ast year a new group of Karen Wells and Ken Hard,
research advocates came an Oregonian living in rural
together to try and solve Redmond. Ken is a former
an issue: how do we get more caregiver and teacher, as well as
participants from diverse a research participant involved
Karen Wells, Advisory Council Chair
communities involved in in a few telemedicine-focused
research studies? Since last studies. “This group can really
September, the Community help and inform people,” says
Advisory Council at the Layton Ken. “If I could help someone in
Aging and Alzheimer’s Disease a way that I was helped, I would
Research Center has discussed like to do that.”
how to improve outreach Karen and Ken joined the
strategies in rural, minority Advisory Council with the
and other underrepresented goal of encouraging more
communities, how cultural people from rural, and
sensitivities impact underrepresented communities
recruitment, and how to build to participate in clinical trials
stronger connections in those and research studies. “With this
communities. group, we can help and really
“We’re getting the foundation inform others,” says Ken.
in place and figuring out what Over virtual meetings, they’ve Ken Hard, Advisory Council member
topics to pursue in order to brainstormed ideas to increase
raise awareness of them in the those numbers, such as not get recognized, because no
broader communities we’re networking with community one knew to ask.” The Advisory
involved with,” says Karen centers, medical providers and Council hopes to be the one that
Wells, Advisory Council Chair care homes to get the word continues to ask. ■
and a Portlander who is also out. Increasing the diversity
a member of the local NAACP of participants involved
and Multnomah County’s Public in a research study allows
Health Advisory Board. “We researchers to generalize study The Advisory Council meets
are putting skin in the game by results, make more effective regularly online. Do you have
donating our time and energy, therapies and to equalize the any suggestions or questions
and working our networks.” benefits of research innovations. for the Board? If so, please
Advisory committee members contact: Allison Lindauer at
“We are all carbon based units;
are paid a modest stipend to lindauer@ohsu.edu or
what affects one unit affects
honor their work. 503-494-6976.
the other,” says Karen. “It’s the
The group so far includes unique differences that often do
Alzheimer’s Update WINTER 2022 5
GR ANT AWARD NE WS
Research funded by recent grants experiences with the Staying Sharp devices will improve clinical trial
program. The second uses group assessments. This 36-month-long
Much of the work at the Layton Center
is funded by grants and donations. interventions, where participants study will simulate a clinical
Here we highlight just a couple of the follow the Staying Sharp program, trial to determine how well the
grants funded in 2021. and analyzes if the program home system detects clinically
improves or maintains caregivers’ meaningful changes.
health. In order to assess caregivers’ Study participants will undergo a
health, the project also uses the brain scan to assess their risk for
ORCATECH technology platform, developing Alzheimer’s. After the
which features digital devices and scan, staff will outfit their homes
sensors that measure health and with devices, including an under-
well-being. the-mattress sleep sensor, motion
activity sensors, an electronic scale
and pillbox and a wrist watch
activity tracker. Participants will be
asked to simply go about their daily
routines while these devices collect
Principal Investigator: Chao-Yi Wu, data in the background.
PhD., Research data analyst, OHSU Scientists will see if there is a
Department of Neurology change in the digital assessments
Research: Supporting Alzheimer in four key areas of life activity:
caregivers by analyzing the mobility (walking speed), cognition
effectiveness of the AARP’s Staying (computer use), sleep (time spent
Sharp program, otherwise known sleeping), and socialization (time
Principal Investigator: Jeffrey Kaye, spent out of home). Participants
as the PROACTS pilot study
MD, Director of the Layton Center at will be asked to take a daily
Funded by: A grant from the
OHSU. multivitamin as a study ‘drug’ to
National Institute on Aging.
Research: Using technology to mimic clinical trial conditions.
Description of project: We will assess
improve detecting Alzheimer’s Using these methods, the study
and demonstrate the efficacy of
changes in treatment studies. will produce outcome measures
the AARP’s Staying Sharp online
Funded by: A grant from the that reflect real-world everyday
health program, focusing on the
National Institute on Aging. function. Establishing the
health of non-professional and
superiority of these novel methods
home-based caregivers, who care Description of project: The DETECT-
compared to conventional methods
for persons with Alzheimer’s AD study is a new study designed
(for example, exams in a clinic) will
disease and related dementia. This to improve clinical trials for early
provide a potential new pathway
study has two parts. The first uses Alzheimer’s disease.
for speeding the development of
a one-time survey to characterize DETECT-AD uses specialized home-
much-needed new treatments for
caregivers and understand their based digital devices to see if the
Alzheimer’s. ■
6 Alzheimer’s Update 1
WINTER 2022
CONTINUED FROM PAG E 2
work presented suggests that
reducing pollution is associated
with lower risk of all-cause
dementia and Alzheimer’s
disease. These researchers
looked at air quality over
time in association with
risk. Additionally, long-term
exposure to air pollutants was
associated with higher beta
amyloid levels in the blood,
showing a possible biological has provided continued for being honored with this
connection between air quality and outstanding service to prestigious award!
and physical brain changes that the Alzheimer’s Association There was a tremendous feeling
define Alzheimer’s disease. International Society to of optimism as AAIC 2021
Advance Alzheimer’s Research concluded. At any given moment,
Some of the first-ever reports of
and Treatment (ISTAART) researchers around the world
cognitive changes specifically
community. are seeking new treatments,
in transgender individuals and
gender nonbinary individuals This year’s inaugural award earlier detection and prevention
were shared at AAIC. Research went to Dr. Jeffrey Kaye, Layton strategies. As scientists continue
has been exploring experiences Professor of Neurology and to advance new discoveries,
of dementia within the Biomedical Engineering and we are filled with hope while
lesbian, gay and bisexual Director of the Layton Aging continuing our work toward a
communities, suggesting and Alzheimer’s Disease Center world without Alzheimer’s and
these individuals experience at OHSU. His research spans the all other dementia. ■
a higher rate of subjective fields of genetics, neuroimaging
cognitive decline (SCD) than and physiology and focuses on
heterosexual individuals. SCD understanding healthy aging. The Alzheimer’s Association
is a self-reported experience Congratulations to Dr. Kaye is a worldwide voluntary
of confusion or memory loss health organization dedicated
that is happening more often or to Alzheimer’s care, support
getting worse. One study found and research. Our mission
that transgender adults were is to lead the way to end
nearly twice as likely to report Alzheimer’s and all other
SCD, and more than twice as dementia — by accelerating
likely to report SCD-related global research, driving risk
functional limitations, such reduction and early detection,
as reduced ability to work, be and maximizing quality care
social, or volunteer. and support. Our vision is a
One very exciting world without Alzheimer’s and
announcement was the Bill all other dementia®.
Thies Award for Distinguished Jeff Kaye, MD, was the recipient of Visit alz.org or call
Service to ISTAART, which the Bill Thies Award for Distinguished
800.272.3900
Service to ISTAART, at AAIC’s 2021
recognizes a member who Conference.
Alzheimer’s Update WINTER 2022 7
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The Layton Aging and Alzheimer’s Disease Center is one of the 31 NIA treatment of Alzheimer’s disease and other dementias.
Alzheimer’s Disease Centers in the U.S. and the only one of its kind in
Oregon. Our center is recognized as a national leader in dementia care Office of Gift Planning
and research, and is committed to serving the needs of people throughout 503-228-1730 | giftplanning.ohsufoundation.org
the Northwest. onwardOHSU.org
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national leader in neuroscience patient care, research and education.
For more information, contact the Layton Center at 503-494-6976.
To subscribe go to our website www.ohsu.edu/alzheimers or call 503-494-6370
Our team
Jeffrey Kaye, M.D. Ona Golonka, M.A.
Executive director Research communications
Layton Aging and coordinator, ORE Core
Alzheimer’s Disease Center Layton Aging and
Alzheimer’s Disease Center
Allison Lindauer, Ph.D., N.P.
Outreach, Recruitment Delaney McDaniel, B.A.
and Engagement (ORE) Core Lead, Coordinator, ORE-Core
Layton Aging and Layton Aging and Alzheimer’s
Alzheimer’s Disease Center Disease Center
Natasha Spoden, M.S.
Research associate, ORE Core
Layton Aging and
Alzheimer’s Disease Center
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