Inside The Senior Alliance: Alzheimer’s Association of Michigan (Ep 1.17)
In this episode of “Inside the Senior Alliance,” host Jason Maciejewski talks with Kayla Jakel from the Alzheimer’s Association of Michigan and Arnie Beresh who is living with early-onset dementia. Listen in to learn more about the work of the Alzheimer’s Association, Arnie’s story of living with an Alzheimer’s diagnosis, and the resources and services available to those who have been recently diagnosed and their care partners.
Jason Maciejewski: (00:00)
Welcome to Inside the Senior Alliance, a podcast exploring resources and issues in the field of aging. I’m Jason Maciejewski, CEO of the Senior Alliance, the area agency on aging serving Western and Southern Wayne County. Joining me today is Kayla Jakel from the Alzheimer’s Association of Michigan and Arnie Beresh who is living with early-onset dementia. Kayla and Arnie, welcome to the podcast.
Kayla Jakel: (00:22)
Thank you for having us.
Arnie Beresh: (00:23)
Thank you for the invitation.
Jason Maciejewski: (00:25)
Great to have you here today. Thanks for making time. Kayla, the Alzheimer’s Association has reported there are more than 6 million Americans living with Alzheimer’s and more people die from this disease every year than people with breast cancer and prostate cancer combined. Please explain what Alzheimer’s is and walk us through how it differs from other types of dementia.
Kayla Jakel: (00:45)
So, dementia is an umbrella term for all the different types. So, there’s over 80 different types of dementias and Alzheimer’s is the most prevalent, most common type of dementia. And Alzheimer’s is a general term for memory loss and other cognitive abilities, serious enough to interfere with daily life.
Jason Maciejewski: (01:07)
One of the areas on your website I want to highlight for people to look up is the section for people who have just been diagnosed. Arnie, you’re living with early onset dementia. Could you share with us what this journey has been like for you and your family, and what challenges that you’ve experience?
Arnie Beresh: (01:23)
Well, the journey has been kind of all-encompassing–friends, family surrounding neighborhoods. As we often hear many things, it takes a village to get through the diagnosis. For myself, especially, and my wife, the problems have gone down the line from where I started in not being able to find myself home from areas that I was very familiar with, not being able to multitask at all, going home with pockets full of notes from the office and really never being able to discern them, not taking care of things. As they went further on, I lost executive function, meaning that I have trouble taking care of banking, I have problems reading and understanding things. Oftentimes, watching TV now is just background noise because I’m really not understanding what’s being said, especially if it’s a program that has multiple plots in it. So, the family has had the time or is taking time to understand what I am losing and not being able to do .
Jason Maciejewski: (02:41)
Arnie, thank you for your willingness to talk about the challenges you are facing today with early-onset dementia. I think sharing how difficult it is to understand and adapt to the changes you are experiencing can help others on their journey with dementia or as a caregiver. Kayla, what are some of the resources and suggestions you have for people taking the first steps into living with Alzheimer’s and dementia?
Kayla Jakel: (03:02)
So whether it be, you know, they have a new diagnosis or, you know, they have memory concerns starting out with calling our 24/7 helpline number – and that’s 1-800-272-3900 – or starting with alz.org, those are two of our great resources and finding what we can offer them. We have support groups, resources, and information about the disease. We have education programs. We have social engagement programs. We have care consultations, and we have our helpline, which is being able to talk to someone and just learn about the disease, ask questions, and just get any of that information that they’re needing.
Jason Maciejewski: (03:48)
I want to ask you about that helpline. When somebody calls that number, do they interact with a person right away or is it a situation where they leave a voicemail or how does that outreach go for people?
Kayla Jakel: (03:58)
They’re interacting with someone right away. They have someone to answer their questions right away, and then they can get connected with their local chapter learning about those local resources or just get their questions answered, however it may be needed.
Jason Maciejewski: (04:14)
And so could you share the phone number with us? Or is it like a same phone number wherever you might be or is it more regional?
Kayla Jakel: (04:20):
Yep. It’s always 1-800-272-3900.
Speaker 1 (04:24):
Arnie, have you taken advantage of their resources, and how has that been able to aid you and your family?
Arnie Beresh: (04:29)
Well, it’s interesting because I was a volunteer for the Alzheimer’s Association for about 12 years, never thinking that I was gonna have to use them as a resource. Once I was diagnosed, they became a very large outreach for me, where they helped me get through and find somebody that could help me become diagnosed, what I needed to get in order, who else I could contact not only for help for myself, but also with my direct care partner and with my family, in not only training for me what to expect, but for training of those around me.
Jason Maciejewski: (05:16)
Could you talk a little bit about the direct care partner? What role does that person play for you? Is that somebody that is a family member or a non-family member? How does that work in your situation?
Arnie Beresh: (05:26)
In my situation, it is directly from my wife, Michelle. She helps me through most things. My friends and family will sometimes take up the slack if she is not feeling well. The term “care partner” is changing landscape from the term “caregiver” cause care partner interacts with the two people collaborating, where caregiver makes it sound like one person is control and is controlling the other person. So, there is a difference. And as I say, most of the time, family or friends or spouse will be the care partner, or oftentimes people from the outside will be more of a caregiver.
Jason Maciejewski: (06:19)
Thank you for sharing that. We’ll adjust our terminology and begin to use that word. Kayla, the Alzheimer’s Association is also linked to support groups. Could you tell us about that particular resource and how someone can get connected to one?
Kayla Jakel: (06:32)
So, we have many different types of support groups. Most of our support groups are for caregivers, but we do have support groups that are for younger onset. We do have support groups for early stage, and we do have virtual support groups. We do have a wide variety of support groups. People can get those, whether they go on the website, they are listed by area, by times and days, and then we have, again, if they call our 1-800 number, they can also find support groups that way as well. We offer support groups throughout the entire state, and they can find them by their area, or again, if it’s a virtual support group there, welcome to join from anywhere.
Jason Maciejewski: (07:17)
So there are more than 11 million Americans who are unpaid care partners for people with Alzheimer’s. How is the Alzheimer’s Association supporting those care partners?
Kayla Jakel: (07:28)
One way we do that is we do in certain areas throughout the state, we do have respite care assistance scholarships, so we offer scholarships to caregivers to assist with caregiving. So, to have the person with dementia to either go to a day program, to have a caregiver come into the home and give care, whether that be a family member, a friend, or a paid professional, and we can reimburse them the cost for that caregiving up to a certain amount, depending on the area they live in. So, we do have those scholarships available depending on where they live. They can call again the 1-800 number, go on our website to see if those are available in their area.
Jason Maciejewski: (08:15)
The Alzheimer’s Association was founded by Jerome H. Stone in 1980 to support people who have been diagnosed with the disease, to unite care partners and caregivers, and to advance research on the disease. So, Kayla, what’s the current state of Alzheimer’s research?
Kayla Jakel: (08:31)
We have many, many research projects going on throughout the country. There’s a lot of research being done at this time. Currently, there’s been new drugs being implemented and new research being done every day. So, we’re hopeful that we have research programs going on all the time to, you know, education programs for research being done, so if people wanna learn more about research, they’re always welcome to join those programs as well.
Jason Maciejewski: (09:02)
And there’s information on alz.org as well about some of the research projects that are going on out there.
Kayla Jakel: (09:08)
Jason Maciejewski: (09:10)
So, I want to touch briefly on the COVID-19 pandemic and ask, what’s been the impact on Alzheimer’s and dementia diagnosed people during the pandemic.
Arnie Beresh: (09:20)
That’s really a two-edge sword, Jason. For many people, it’s increased their depression, their loneliness, and feeling isolated because they could no longer get out and they could not directly connect with people. If they were in an area where everybody was wearing a mask, they could not see their face for facial expression or their lips to help them read the actions that they were going on. For some others, it’s actually helped them. When I help say “help them,” it’s really through the technology of Zoom or other platforms that allows you to reach out and without a mask or without problems connecting with other people, not only in support groups that you used to, but other support groups that are provided online within the country or even internationally. So, it helps for that human contact that many people have lost during the pandemic.
Jason Maciejewski: (10:25)
Interesting. Thanks for sharing that. The 2021 Alzheimer’s Disease Facts and Figures Report and it’s accompanying race, ethnicity, and Alzheimer’s and America document examine the perspectives and experiences of Asian, Black, Hispanic, Native, and White Americans in regard to Alzheimer’s and dementia care. Kayla, what did those reports reveal?
Kayla Jakel: (10:48)
It revealed that for Black, Native, Asian, and Hispanic Americans, there is a barrier to those populations receiving and seeking healthcare for Alzheimer’s care. So, unfortunately they’re not receiving those diagnosises for ,the care for their Alzheimer’s or their other dementias. Unfortunately, they’re not getting the assistance that they need when they could use, you know, or resources or anything else. So, it’s unfortunate.
Jason Maciejewski: (11:21)
Yeah. Those reports as I look through them really reveal the disparities in access to services and healthcare for minority populations. And, hopefully, now that we’ve got these reports out there, we can begin to address that and account for the differentiation in access to services. I wanted to step back and ask about the role that volunteers play at the Alzheimer’s Association. Arnie, you had mentioned that you were a volunteer with Alzheimer’s Association previously, and could you talk about the role that you played as a volunteer and what that experience is like?
Arnie Beresh: (11:54)
Well, in the entity, the volunteers for the Alzheimer’s Association are really the backbone of the association. When I was a volunteer, I helped with setting up local programming, helped with setting up annual walks for the Alzheimer’s Association, which is a fundraising time, but it’s also a time to disseminate information and to coexist with people that are giving care, such as nursing homes, assisted livings, physicians offices. So, it is a big learning program. You know, we’ve been fortunate in the Alzheimer’s Association to not only be federally funded, but also to now being funded by private sources, realizing what the cost is of this disease, which has really no treatment nor cure. This year, the National Alzheimer’s Association forum will be meeting in person in Washington, DC, the 15th through the 18th of May, and the major portion of that for volunteers and advocates is to go up to the Hill and see our legislative people to talk to them about Alzheimer’s and talk to them about what bills may be coming up in front of the House and the Senate to get their support so that Alzheimer’s doesn’t get put on the backburner.
Jason Maciejewski: (13:29)
That advocacy work is always important, whether it’s in Washington or Lansing, or even more locally than that. Volunteers at Alzheimer’s Association play a very important role in combating this disease, so thank you for previously serving as a volunteer. Arnie, would you please share something that you’ve learned while you’ve been on your journey with early stage dementia?
Arnie Beresh: (13:48)
Probably the biggest thing I’ve had to learn is patience. I was a very busy person when I was employed. Since this has hit me, I’ve had to learn and sit back and sometimes wait for resources to come to me. It’s not a quick snap of the fingers and “poof,” everything is right there. There’s still a stigma around people with Alzheimer’s or other dementias where many years ago, if somebody was a little bit off, they’d say, oh, you know, Aunt So-and-So is, you know, just a little off, just ignore her. Where now we know that there are other things with the number of types of diagnosis for the different forms of dementia, including Alzheimer’s, that are out there.
Jason Maciejewski: (14:44)
Thank you for sharing that. Kayla, if people have questions about Alzheimer’s or maybe want to talk with somebody about resources and information, who should they contact for that support?
Kayla Jakel: (14:53)
The best contact would be our 24/7 helpline. Again, that’s 1-800-272-3900.
Jason Maciejewski: (15:01)
Thank you. Arnie, I want to give you the last word. Is there anything else you want to share about your experience?
Arnie Beresh: (15:06)
The experience has been a twisted road. I was diagnosed about six years ago. It took a while to get the proper diagnosis because of lack of resources. Resources are now becoming much more available, not just through the Alzheimer’s Association, but through AARP or the National Council of Dementia Minds, or through the positive approach to care. All of these organizations, especially the Alzheimer’s Association, will link you up to support groups, provide you with pamphlets, provide you with statistics, and that’s where the care comes in for everybody, the person with dementia and their care partners, family, friends.
Jason Maciejewski: (16:01)
There certainly is a wealth of information for people living with Alzheimer’s and their care partners at alz.org. I encourage everyone to take some time and learn about this disease and the work of the Alzheimer’s Association. Perhaps there will be a time when you can share that information with someone who is struggling with a diagnosis or in their role as a care partner, and having the knowledge of that resource will be a benefit that you can pass on to somebody else. Kayla and Arnie, thanks for joining me today on the podcast.
Kayla Jakel: (16:29)
Thank you again for having us.
Arnie Beresh: (16:30)
Thank you for having me.
Jason Maciejewski: (16:31)
If you have questions about services or programs the Senior Alliance offers, you can call us at 1-800-815-1112, or email us at firstname.lastname@example.org. Information about our agency or the programs and services we offer can be found on our website at www.thesenioralliance.org. On Facebook, we can be located by searching for the Senior Alliance. Finally, our Twitter handle is @AAA1C. I’m Jason Maciejewski. Thank you for listening to this episode of Inside the Senior Alliance.
Inside the Senior Alliance is a production of the Senior Alliance and Blazing Kiss Media.