Support After Diagnosis: Dementia Care Specialists and Dementia Friendly Communities

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Intro: Welcome to Dementia Matters, a podcast created by the Wisconsin Alzheimer's Disease Research Center. It's our goal to humanize Alzheimer's research so that our community, our patients, our participants, and anyone else interested can get a better understanding of the work that's happening to fight back against this disease. My name is Nathaniel Chin, and I'm a geriatric and memory clinic physician at the University of Wisconsin. I'm also the family member of someone living with dementia. I'll be serving as your host for this podcast and asking the questions I believe are on the minds of many in our community. Thanks for joining us.

Dr. Nathaniel Chin: Welcome to Dementia Matters. Today our guest is Joy Schmidt, a dementia care specialist with the Aging and Disability Resource Center of Dane County. Joy connects people with dementia and their families and caregivers with community resources. Joy, thank you for joining us on Dementia Matters.

Joy Schmidt: Thank you for having me, Dr. Chin.

Chin: Joy, can you start out by telling our listeners about the services offered through the Aging and Disability Resource Center, and specifically about your role as a dementia care specialist?

Schmidt: Our role at the Aging and Disability Resource Center is to help people connect to the services in their communities. Across the state of Wisconsin, every county has an ADRC for short, which is the Aging and Disability Resource Center. We are the other ADRC, and we provide a lot of connection to various supports that are available. If you don't know where to start and you are looking for supportive assistance, maybe, in your community, you're looking for information about Medicare, Medicaid, a variety of subjects, connect with your ADRC and they can get you started.

Chin: Well that's a good point. How can people access the ADRC and the services of the ADRC?

Schmidt: So here in Dane county, they can call our main line at 608-240-7400 and they'll connect directly with somebody who can help you right away. You won't be connected to a receptionist. You're actually connected to an information and assistance specialist who can help you right then and there to answer your questions, whatever they be. People will come to us looking for information about food share, nutrition sites, socialization. In terms of dementia, people come to us looking for support maybe after diagnosis or before. We also provide memory screens in the community, and so people can come to us and request a memory screen. All of our information and assistance specialists have been trained in how to do a basic memory screen and then, if there are concerns, to be able to help them connect to get a further diagnosis. 

Chin: Okay because for my memory clinic, I often refer to you and the Aging and Disability Resource Center, but it also sounds like the general public can access you on their own. 

Schmidt: Yes, most definitely. We also do have a website. We try to provide a lot of information out there. So if, you know – in your community, whether you are in Dane county or elsewhere around the state of Wisconsin, just simply search the Aging and Disability Resource Center for your specific county and you'll be able to pull up that agency's website. You could also go to the Department of Health Services in the state of Wisconsin and they have a complete list of those agencies.

Chin: Now a common question that I get in clinic is, what is the cost of a consultation from the Aging and Disability Resource Center and are any of the services they discuss free? 

Schmidt: There is no cost for consultation with either dementia care specialists like myself or with our information and assistance specialists. Our programs, our services are funded through the state of Wisconsin. We also do receive some federal funding as well, but all of our services are free of charge.

Chin: And so the resources that you can connect people to, but some of those may have a fee though?

Schmidt: Yes, correct. If somebody is seeking, let's say for example, in-home care, you know, there will be a cost for those things. Maybe somebody's looking for elder law attorneys, there's going to be a cost. We can help people to navigate those. Now, some people come to us, they have limited resources, limited income. We are the single entry point for receiving publicly-funded programs to receive help in the home so we can help people, kind of talk them through and let them know and educate them about those various resources, what those costs would be, and what it takes to qualify for various programs.

Chin: Now, I tell my patients that the Aging and Disability Resource Center should be their first call after they process all the many information that I discuss with them. What do you want them to know before they contact you? 

Schmidt: I think what they should know before coming to us is just kind of what they're looking for, to give that some time. Are they concerned about finances? You know, are they struggling emotionally? Do they feel like a support group or connecting to other people would be helpful? Kind of, what are the priorities? We always kind of look at the legalities of do you have your power of attorney, do you have a health care representative, you know. That's a good place to start but even safety is an issue as well. So kind of thinking to themselves, what is my priority right now and then, kind of, what is my long-term goal. We try to help people not only kind of get things put together in terms of the long-term financial issues, legal issues, but also to look at how do you want to live now because life isn't over with a diagnosis. There's a lot of life left to live. So what do you want to do with that time? 

Chin: I couldn't agree with you more, and I often say to my patients that with the diagnosis of dementia there is still a lot of meaning and value in life. It really is our focus to optimize quality of life strategically and to plan ahead. 

Schmidt: And once you get the business issues kind of resolved, then I look to life stories – you know, what do you have about your life and what you want and who you were as a person and who you are now, to get that information documented. We live in a time when there's a lot available, and especially here in Dane county we have a lot of different programs. A lot of people find that support groups are helpful especially caregivers but others find that that doesn't meet their needs, so is it online information? Is it online support? Is it education? I think that is probably the most important piece though for all caregivers and all people living with this disease is that you get the education to understand the diagnosis that you have.

Chin: One way a person can access that information or learn more is if they're a part of a dementia-friendly community, so can you explain to us what is a dementia-friendly community?

Schmidt: A dementia-friendly community is something I'm very passionate about. It's a community that works really hard to educate everybody in its community about dementia and helps to understand the signs, helps to understand ways to communicate and support individuals, and then also advocates for better programs, better services and one that tries to reduce the stigma so people living with dementia can continue to participate, be involved, be a part of community life. So a dementia-friendly community, for some caregivers and family members they're finding this as a really positive way to deal with this sometimes devastating disease.

Chin: How does one know if they live in a dementia-friendly community?

Schmidt: Here in Dane county, we have worked very hard to pull together those communities. We publicize the communities and the businesses and organizations who have become dementia-friendly on our website. I believe that's the case across the state, so again connecting with your ADRC – your Aging and Disability Resource Center – or your dementia care specialist to find out if they are part of a dementia-friendly community. If not and you want to become a part, we definitely encourage you to maybe consider starting your own dementia-friendly initiative. This is something that is happening across the state of Wisconsin and across the country and across the world.

Chin: Well Joy, I want to end by asking, what do you want people to leave with once they've done a consultation with you, whether it's resources or reflection or just ideas?

Schmidt: I think the main thing is knowing that they're not alone and knowing that there are people who care, that there are people to talk to, and that they don't have to do this alone whether they themselves are living with this and are fearful of what their future, how things are going to change for them. Knowing that they have the support of their community and of these many agencies and supports to help them through this.

Chin: Well Joy, thank you for joining us on Dementia Matters. I hope to have you again in the future 

Schmidt: All right, thank you so much, Dr. Chin. Thank you for all the work you do

Outro: Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center. The Wisconsin Alzheimer's Disease Research Center combines academic, clinical, and research expertise from the University of Wisconsin School of Medicine and Public Health, and the Geriatric Research, Education and Clinical Center of the William S. Middleton Memorial Veterans Hospital in Madison, Wisconsin. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode was produced by Rebecca Wasieleski and recorded and edited by Alex Wehrli. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. Check out our website at adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments, email us at dementiamatters@medicine.wisc.edu. Thanks for listening.