ACTNOW

What is ACTNOW?

ACTNOW is an online research-focused community of Oregonians, Southwest Washingtonians, and other individuals who are interested in aging, memory loss, and dementia-related news and initiatives from the OHSU Layton Aging & Alzheimer’s Disease Center. The Layton Center is nationally recognized and funded by the National Institutes of Health-National Institute on Aging (NIH-NIA), and is the only one of its kind in Oregon.

Logo of the ACTNOW research registry

Become a Member

Learn more about ACTNOW from its community and staff members.

Why join ACTNOW?

  • Get information about resources from a trusted source- the Layton Center is one of 31 NIA Alzheimer’s Disease Centers in the US and the only one in Oregon.
  • Engage with researchers by writing columns, joining focus groups, or participating in research
  • ACTNOW members can also join the registry to participate in studies on aging and dementia. Once registered, you can receive personalized notifications about upcoming or current research studies based on your preferences. Being part of a study means being a part of something greater- you’re:
    • Giving back to your community.
    • Creating new knowledge on aging, memory loss, and dementia.
    • Providing new experiences for local students and staff- the next generation of dementia researchers and healthcare professionals.
    • Raising hope for current and future generations.

Blogs

Learn about the latest dementia news and updates and how they affect our community.

Dr. Allison Lindauer, PhD, NP is a nurse practitioner and caregiving researcher. She writes about caregiving for friends and family members with dementia.

Follow her on Twitter

Get by with a little help from friends

We sent our daughter off to college in August, and I’ve been reflecting on her schooling to date. When she was in middle school she would go on outings. For each journey, she had a “buddy,” a peer, for whom she was responsible. If a buddy got upset, hurt or lost, her peer would notify the teacher. Their outings were complex. They took the city bus, tramped in woodlands, swam in the ocean. The risk for getting upset, hurt or lost was high. Yet they all made it through middle school and to this day, my daughter, unlike many of us, talks about how she loved middle school.

I think the “buddy system” can work for families living with dementia as well. As family members walk the difficult path of caring for a person with dementia, they too are at risk for getting upset, hurt or lost. Family members who care for those with dementia may find a sense of meaning, opportunity and power in their evolving role, but they may also find the experience burdensome, leading to depression, anxiety, and grief. With this in mind, I think it’s important that every care partner have a peer buddy to turn to when they trip up or lose their way (as we all do). In my case it was my sister; for others, it may be a neighbor or friend in a support group. The best way to find someone who can team up with you is to call a local organization. In Portland, the Multnomah County Family Caregiver Support Program offers help and support, 503-988-3646. The Alzheimer’s Association can also be a great source of support, 800-272-3900.

As our kids learned early in life, don’t go on a journey alone; find a buddy to make the way easier as you go.

Introducing a formal caregiver

Family members often ask us for tips on how to introduce a formal caregiver to their family member who has dementia. At some point in the dementia disease process, family caregivers will find they need a little help and will hire a formal caregiver. Bringing a new caregiver into the home is important, but often met with some trepidation. Family members with dementia appreciate familiar faces and a routine; they often don’t want you to leave them in the care of a “stranger.” Here are some tips that you might find helpful:

First, keep your expectations low for the first couple of visits from a formal caregiver. You might even plan on staying in the home as your family member gets used to the idea. You could test out the system by stepping aside for a few moments: spend some time in another room, go out into the garden or go for a short neighborhood walk.

Second, expect that your family member with dementia won’t remember the “new” caregiver and may be surprised to see him or her on the 3rd, 4th or 20th visit. Alzheimer’s disease affects memory. New information, such a new face, can be difficult to retain.

Third, help your new caregiver out by setting up a couple of activities you know your family member will like. This could be “Movie Day” with a Kathryn Hepburn movie and popcorn, or a baking day that involves making cookies together. Other ideas include getting a manicure, going on walks, or looking at family photo albums.

When your family member is engaged with the new caregiver, quietly leave the house. If you can, avoid explaining where you’re going, when you’ll be back, or why you’re doing this. If it seems appropriate, take the time to thank your family member for spending time with the new caregiver. Let them know they are helping you.

Finally, and importantly, expect this transition to be difficult for you. After being “on” for so long, it is difficult to let go (even for a couple hours). Thus, it is important for you to plan ahead too. Make those first outings easy, so if you really want to go back, you can. For example, a cup of coffee with an understanding friend, a trip to the library, maybe just lunch in restaurant by yourself. You will get the hang of it, but it does take practice. Know that these breaks are important and that they need to be a priority for you. There will be plenty to do when you get home.

SHARP: Sharing History through Active Reminiscence and Photo-imagery (SHARP) Study

Neighborhood walking is a great way to help your brain health—it provides exercise and impromptu opportunities to socially engage with your community, behaviors that may sustain or improve cognitive function as we age.

This is especially important for African Americans who are twice as likely to develop Alzheimer's disease and other dementias due to high rates of chronic conditions like diabetes, obesity, and hypertension.

Funded by the Alzheimer’s Association, Sharing History through Active Reminiscence and Photo-imagery (SHARP) program engages 21 older African Americans with and without memory loss. Using a tablet device, walking groups select from a menu of 72 one-mile routes in Portland’s historically African American neighborhoods.

Changes in weight, blood pressure, and cognitive performance will be tested over the 6-month program, with the aim of seeing how regular walking and conversational reminiscence impact brain health.

Participants’ neighborhood reminiscence will be recorded while they walk and used to create community learning sessions that celebrate the local African American past while educating African American families about how to maintain and improve brain health as we age.

Two research participants using a computer in their home
Joining ACTNOW is easy to do from home

Discover more

Find out what dementia is, what the risks are for developing dementia, how to prevent dementia, and current treatment options and ways to supports for people with dementia.

Learn more. 

We have several ongoing research studies at the NIA-Layton Center. 

Read about our current research. 

View local resources for people with dementia and caregivers of people with dementia .

Learn more. 

Watch previously-recorded talks and seminars about dementia-related topics.

(Videos will be uploaded soon).