Q&A with Janet Hamada Kelley: Alzheimer’s Association leader shares what’s next for local dementia community
The local chapter’s executive director believes that big changes may be coming to Alzheimer’s care and caregiver support in 2023
In spring 2022, Janet Hamada Kelley stepped in to lead the Alzheimer’s Association San Diego and Imperial Counties chapter as its new executive director.
At the time, Hamada Kelley was aiming to reach a greater diversity of communities within the region to ensure that more families have access to the support resources needed to care for loved ones with Alzheimer’s disease and dementia.
As 2023 begins, Hamada Kelley discusses how the local Alzheimer’s Association chapter has evolved over the past year, her goals moving forward and what legislation the nonprofit is pushing to support those living with dementia.
Next year, the Alzheimer’s Association and AARP are co-sponsoring a state bill that would create a tax credit to help cover the out-of-pocket expenses the average caregiver incurs each year, from $7,500 to $10,000.
At the nonprofit’s national level, advocates filed a request last week that the Centers for Medicare & Medicaid Services reverse its April 2022 decision to “effectively deny Medicare coverage of FDA-approved medications unless the person is enrolled in a clinical trial.” Alzheimer’s Association has asked that CMS remove restrictions for such treatment.
Since stepping into the role eight months ago, what are some of the big lessons you’ve learned about Alzheimer’s, dementia and caregiving for the disease within San Diego?
You know that dementia and Alzheimer’s impacts families, but it has been really eye-opening to see how the disease impacts families in various ways. Also, I think that there’s still this misconception about dementia and Alzheimer’s, and a lot of people are still not comfortable talking about it out in the community, especially when there are so many great resources.
For me, one of the things that I’ve been focusing on is the importance of raising awareness and elevating the presence of the Alzheimer’s Association and also the other amazing organizations that support the aging population in San Diego County so that families are aware of the resources that are available to them.
Aside from raising awareness, do you see any other ways that you can help to reduce the misconceptions about dementia and help people to feel more comfortable talking about their diagnoses?
Oftentimes, it takes somebody that’s super proactive to go seek out some of the resources that are available. So one of the things that we are doing at Alzheimer’s Association is really trying to identify different parts of our community to host community forums, where we invite the community to come in.
We present an awareness presentation, but at the same time, it’s a listening session for us to really understand what are the challenges and obstacles that you may be facing as a loved one or caregiver to somebody with dementia. Perhaps you’re just curious to learn more about it, so we’re creating these safe pods within the community.
We’ve also noticed that in our outreach to diverse communities throughout the counties that it’s important to meet people where they are and to make sure that they feel safe in their sharing. Our programs team has really been dedicated to making sure that we establish those partnerships within the community, rather than just sharing our resources and forcing that upon people. We have these community forums where people come and share and just take what they’d like and just know that we are here for them when they’re ready to talk.
I know your organization just hosted a community forum earlier this month in Chula Vista. What were some of the big takeaways from that event?
The brain health forum that we hosted down in Chula Vista was great because I think it showed a lot of individuals who are caregivers and care partners that they’re not alone, but it also gave them some additional tools to use in their day-to-day lives.
Partnering with AARP and other community organizations allows those individuals to see that there are many organizations out there, providing resources. We also did a fun session with Resounding Joy (a music therapy nonprofit), so we’re making sure that we are adding in different types of lifestyle activities, whether it’s music or art, and I think that was just refreshing.
We’ve heard some really great feedback from those who attended, saying that they did feel like this was a safe place to share and that they didn’t realize there were so many resources available. My hope is that from there they will continue on in a support group or just to take in the information that we provide since we do have our hotline that is open 24/7 with the 200 languages as well as all the Spanish and English resources that we have available locally.
When you first stepped into the role earlier this year, we discussed diversity and your goal to reach more diverse communities. Over the past year, you’ve specifically connected with the local Native American community. How is that effort going so far?
Working with the Native American community has been wonderful to really understand where the community is. Each community has their own comfort level in terms of sharing — dementia and Alzheimer’s can be very private to some and so it’s really just building that safe space.
We’ve been able to attend health fairs with the Indian Health Council and have conversations around additional support and making sure that we have a staff person available but also that we’re talking through programs, webinars and Facebook Lives. We’re really looking forward to growing our partnership in 2023.
Do you have any community forums planned for the next few months?
We have our ongoing events, like our support groups, and we actually just started a new, in-person support group in Mission Valley, so that has been very exciting.
In addition to that, we will be hosting additional community forums, a research town hall and additional community-based town halls. Ideally, we’re hoping to have a Spanish town hall in the South Bay area, as well as a town hall in Imperial County, and of course looking into North County and East County, as well.
I think with the recent announcement of some disease-modifying treatments showing promising results in clinical trials, there’s going to be additional momentum in making sure that people are aware of the treatments. Our work is just getting started as far as raising that awareness and getting our name out there so people know how to access treatments and tools as they become available.
As far as those disease-modifying treatments are concerned, what’s been some of the big progress over the past year?
I’m not a scientist or a researcher, so I don’t know all the specifics; however, I know that the results that are coming out through the clinical trials are very promising. They’re showing that there are specific areas — specifically amyloid plaque — that do impact the progression of the disease.
As an organization, we’ll continue to invest in promising research. I think it’s very critical that we continue to share the importance of early screening and getting an early diagnosis so that when these treatments come down the pipeline, they are able to get to the right people because it looks like the majority of the treatments showing promising results right now are for those in early onset or early stage Alzheimer’s and dementia.
Here in San Diego, we now have our inaugural chief geriatric officer. What work would you like to see Dr. Lindsey Yourman do specifically with the Alzheimer’s community?
On the health system side, they’re now making sure that primary care physicians are aware of screenings, that they’re doing early screenings to detect dementia and referring out to specialists. I think that the chief geriatric officer is really going to be able to strengthen those relationships and really drive the importance of early screening, especially as we see disease-modifying treatments coming down the pipeline.
I’m really excited to see how we can come together in supporting community and health systems with her in this leadership role.
Is there anything I didn’t ask to you about your first year in your role as executive director or about the state of Alzheimer’s disease and caregiving that you want to highlight?
It really has been a whirlwind. The first eight to nine months here, it’s been really incredible to see the partnerships and support that we have in the community. We’re also identifying that we are still in critical need of making sure that we elevate our presence so that we can raise the awareness. There are some incredible organizations and councils within the county that really encourage collaboration, so I look forward to getting involved with those in 2023.
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