Care & Support Services Offered by the Alzheimer’s Association

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Nathaniel Chin: Hello, Dementia Matters podcast listeners. Thank you for returning to the podcast during this COVID-19 pandemic. I know you have a lot on your mind and despite being at home. I know life is not easy. It's an understatement to say we are living in an extraordinary time. But whatever you want to call this ongoing experience it is asking extraordinary things of us. And life doesn't just stop because of it, which is why this podcast continues. I want to pivot here on Dementia Matters and address important issues affecting those with cognitive impairment and those without during this COVID-19 coronavirus pandemic. I cannot cover all the issues, and frankly shouldn't. I encourage you to go to trusted sources for specific information such as the U.S. Centers for Disease Control and Prevention, your state and local health department web sites, and the Alzheimer's Association. You can also find resources on our website at adrc.wisc.edu that's adrc.wisc.edu. And that of the Wisconsin Alzheimer's Institute at wai.wisc.edu for other interesting and important stories on the COVID-19 pandemic I would recommend my colleague at UW Health Dr. Jonathan Kohler of the Surgery Sett podcast, who has a special series called the Frontlines of COVID. We will include these links to all these resources in our show notes. For those of you affected by Alzheimer's disease, or any cause of cognitive impairment, you know better than anyone that it takes a community to care for those affected, and to work on the front lines of treatment, prevention, and cure. What we faced with COVID-19 is no different, we all are needed in this fight. And I thank you for whatever it is that you're doing take care and be safe.

Nathaniel Chin: My guest today on Dementia Matters is Ms. Kate Kahles, a program manager for the Alzheimer's Association in Wisconsin chapter. She provides community education programs and support services to our residents, businesses, and professionals in Northeast Wisconsin. Kate has a background as a nursing home administrator and holds a bachelor's in business and psychology from UW-Eau Claire. Welcome, Kate, to Dementia Matters.

Kate Kahles: Thank you for having me.

Nathaniel Chin: I'm excited to be talking with you, though again I wish you were under different circumstances. The COVID-19 pandemic and its consequences are in fact the reason I'm excited to be interviewing you today on our program. I want to focus on what care, support, and education resources are available for caregivers during this shelter at home. So to start, you know the traditional support group meets in person, so given the current situation of people needing to stay at home what changes have been made so caregivers can still stay connected?

Kate Kahles: The Alzheimer's Association has transitioned many of our caregiver support groups nationwide to virtual offerings some support groups are still being offered with their regular facilitator and regular attendees through telephone formats and other support groups have started up as new support groups that are available to anyone nationwide to join. Some of them are offered via a webinar format so things like Google Hangouts or Blue Jeans are a few formats we use where you can actually see other participants, but many of our support groups are offered via telephone and the reason for that is we have a lot of people without either reliable internet access or without the resources to access a computer or a webinar-based format so a lot of them are via telephone. The Alzheimer's Association also has an online message board for caregivers and persons with dementia that has always been available it's called AlzConnected and it's open to any person caring for someone with dementia and there's also a separate forum for folks who have memory impairment themselves to connect with other people who are experiencing some of the same things that they are.

Nathaniel Chin: So you guys were actually pretty well prepared for a situation like this in that you already had a lot of this web-based meetings and you already had the forums that you're currently recommending to people?

Kate Kahles: Yeah we did you know we try really hard to connect with people in whatever community they might be in so even if we don't have offices in that community we have a really really strong network of volunteers and individuals who partner with us that help us to reach people in many communities and that often relies on technology so we did have a number of resources available to us which have been really helpful in this transition we've also partnered with a lot of like local aging resource centers in Wisconsin they're called the Aging and Disability Resource Centers. I know they're different things in different places, but partnered with many of them to help share some of that technology so that they can continue support groups in their communities as well.

Nathaniel Chin: And despite that technology though, we still at times rely on the good old telephone to do the service and in the community work, and I can I appreciate the fact that you guys have your 24/7 phone number and that you're doing these visits via telephone. I can tell you from a geriatric clinic that's often the best way for us to reach our patients. So what what is the 24/7 phone number that you have?

Kate Kahles: Yeah so our helpline, or our contact center is 800-272-3900, and that is a 24/7 resource so we always have care consultants available any time of day, any day of the year. I always tell people you can call on Christmas at 2:00 a.m. if you want to and there will be someone available to talk to you. Those can be questions about resources, it can be questions about you know how do I connect with a support group or it can really be this is is the situation I'm in right now I'm really struggling with this behavior from my loved one or I'm really struggling with this family dynamic situation and we're not all on the same page and how do we move forward. Sometimes folks call too and say you know how do I know when it's time to move to the next level of care and what questions do I ask when I'm working with providers to determine who is appropriate for that next level of care. So we can help with a variety of issues within that 24/7 helpline, and they always refer to local staff when local follow-up is needed.

Nathaniel Chin: That's wonderful, and we will have that phone number on our website for those that are listening, based off of the website. But going back to the support groups are there different support groups for families with loved ones in facilities versus people living at home.

Kate Kahles: Yeah we have a number of different support groups right now. One of our really popular weekly support groups that right now is occurring every Friday is something that came about because of this COVID-19 situation. We recognized that there were a lot of families who were in an unprecedented situation and could not visit their loved ones in long-term care facilities, which just makes this process so much more difficult due to those visitor restrictions. So we started a support group for family members who have a loved one in a facility, and there's just some wonderful conversation, suggestions, empathy, that happens within that support group of people who can really appreciate and connect with one another in a way that other people in their life maybe right now can't understand how difficult that is. So that is one support group that has been unique right now, but I think incredibly vital for those who are attending.

Nathaniel Chin: Have you by any chance been able to be a part of that support group?

Kate Kahles: Yes so I actually facilitate that support group. Right now it's a Wisconsin-based support group. So we have folks from all over the state of Wisconsin who participate in that group. There's a lot of different you know support groups nationwide, this one right now is Wisconsin based. And we do limit the number of attendees just so that everyone has an opportunity to really share their challenges and their successes and have time for feedback from others. So we limit it and require registration for that one.

Nathaniel Chin: Well I don't mean to put you on the spot, but I've been getting a lot of questions in clinic about family members who are concerned about what to do or how to cope with the anxiety they feel having their loved one in a care facility. And while many of them talk about trying to move that loved one out, most of them just want advice on, "well what should I be doing with my loved one in the care facility?" Do you have any general recommendations for our audience members who might be having those questions?

Kate Kahles: Yeah this comes up a lot in that support group, and I think the number one piece of advice that is shared by a lot of participants in that support group is communication with the facility. I know that can be really challenging especially if we're talking about facilities who maybe have positive cases and staff are really, you know burdened with some of some of the new day-to-day tasks. But if you can find a staff member whether it's the activity director or the social worker or a caregiver you have a really strong relationship with, that you can get regular communication from and potentially send regular communication to, if they have photo releases that you can sign so that they can send pictures back and forth of your loved one. Many of these facilities have invested in tablets so that they can Skype. We do recognize and and we get feedback that Skype can be really challenging for persons with dementia because they may not understand the use of that technology. But for those that it works for, we hear really successful stories. Other folks ask that the facility send pictures of their loved one participating in some type of activity in their room, or of meals that they have eaten just so that they still feel connected to their loved one and that they can ensure that the care that's being received is appropriate. But there's just a lot of things to consider, so I know that's something we see on social media a lot, and we just encourage people to think really carefully about whether or not that is appropriate, helpful, and useful in their situation.

Nathaniel Chin: A lot of thought needs to go into this whole process including just even visiting the people we care about so I appreciate you saying that. You know in Wisconsin as I'm sure across the country in the world you know many people live in the rural parts where internet access isn't always reliable or guaranteed to have it. What kinds of things are being offered in those kinds of circumstances?

Kate Kahles: Yeah you know I actually I live in one of those areas that a lot of folks can't get reliable Internet, and so we're really sensitive to that, we offer call-in options for all of our meetings. So even from a volunteer standpoint if people are calling in for volunteer meetings and and it's a webinar meeting they can call in using a telephone. We offer education programs in a webinar format which allows people to see the PowerPoint slides, and if we have someone who lives in an area where they don't get reliable internet or perhaps their family just has not purchased internet, we can send them the PowerPoint slides actually via mail ahead of time and they can call in with their telephone and follow the paper slides in front of them while we narrate the presentation. So we are always cognizant of that while we are presenting that we recognize that there's a number of folks who are listening but not able to see our slides. And so we do our very best to make sure that they get the materials ahead of time and that we present in a way that doesn't rely on visual teaching.

Nathaniel Chin: And I imagine the Alzheimer's Association is encountering new issues or unique situations with caregivers because of the isolation from stay-at-home. You know what kinds of things are you hearing or seeing and how are you addressing them?

Kate Kahles: Absolutely. Many caregivers utilize services like respite care or adult day programming or memory cafes that help with that social engagement piece for their loved one and it also helps to provide a break for caregivers and COVID-19 has really upended many of those routines so with that limited contact outside of the household and avoiding exposure to their loved one, a lot of caregivers have chosen to, in some cases even discontinue home care services. Now that's not a recommendation if that's something that your loved one needs, but for folks who were doing it as a break for the caregiver that they feel they don't need right now they may have chosen to to stop that service. And so that presents a lot of unique challenges for caregivers, and so we've really had to work on that risk benefit analysis of you know there is certainly risk with anyone coming into the home but what benefit is that providing to you and your loved one and does the benefit outweigh the risk or vice versa. And we've also had to figure out how to still engage their loved one socially, so putting together plans for family to connect. I spoke with a family just this week who they were having difficulty with using the telephone or using Skype with their loved one who had dementia, so the extended family actually put together a calendar so that she would receive a mailed card every single day of this shutdown so that she still had connection to family. So these are unique things that I think we haven't experienced in many situations, but working on some of those, you know how can we change the routine to give that person with dementia some structure, some engagement with family, some creativity, whether it's through art -- many people have had great success with the virtual tours of museums and national parks -- so working with those resources that we have to really make sure that the caregiver is cared for and the person with dementia is as well.

Nathaniel Chin: It is amazing the creativity of people and communities and the museums and things like that. When we hit a crisis like we currently are in, it's matched by the power of the community. I was impressed by what people are able to do to connect with their family members. And you spoke to the fact that you're encouraging people to develop these routines and to come up with these activities. What kinds of activities are you recommending for caregivers themselves to stay healthy as well as those that have some form of cognitive impairment, be it dementia or mild cognitive impairment?

Kate Kahles: Under normal circumstances we often encourage caregivers to find time for themselves. And in the COVID-19 circumstance we still recommend the same thing but it looks different. If they can't have someone come to the home to sit with their loved one, if they can't leave the home for extended periods of time, that may become more challenging. But we do recommend that those caregivers who can leave the home for a short period of time do go for a walk if they can do that while safely practicing social distancing. If they cannot leave their loved one at home we're really working with them on finding moments and space to themselves where they can take a break. If their loved one is able to you know participate in some of those virtual tours or watch a favorite movie or if they can put out some bird feeds so that their loved one can watch the birds or look through old photos ... that can sometimes give them enough time to take a quiet bath or go into another room and have a private phone conversation while their loved one is tuned into some television show so that they can still connect with their friends and their family members. If they can find some time to take a nap, whether that's you know while their loved one is napping or participating in one of those safe activities, that's a good idea as well. I think a lot of people right now are are feeling tired mentally and spiritually so that resting, meditating, praying, all of those things are really good ways for people to find some inner peace right now while their routine is disrupted. Of course we also recommend that the physical safety requirement. Eating a balanced diet is really important ,now more than ever both for our mental well-being as well as really making sure that our our bodies are healthy in the event that a caregiver does develop COVID-19. So really paying attention to those physical aspects of health as well.

Nathaniel Chin: If a caregiver is working on care planning, which many are thinking about the future, what resources are available to them knowing that we can't be meeting in person? 

Kate Kahles: They can contact the 24/7 helpline at any time, and we can assist with care planning. But we also have a tool on our website it's an interactive tool called Alzheimer's Navigator and that can assist with care planning so it guides you through a series of questions and helps to determine next steps.

Nathaniel Chin: Oh, that's wonderful, and I would put in a plug too to speak to the patient's primary care provider or memory care provider, because I know that we are contacting our patients asking about care preferences during this time too.

Kate Kahles: Yes, absolutely.

Nathaniel Chin: What key resources from the Alzheimer's Association do you want our audience to know about right now that you think if they have questions, this is the place to start.

Kate Kahles: Absolutely so there's actually three that I would recommend if you can kind of keep these three in your mind you will be able to find the answers to a lot of things and the first is that 24/7 helpline. So again that number like you said will be on the website and is 800-272-3900. So that resource is very helpful they can help with individual needs as well as trying to find programs or support groups in your area. But if you want to just go through and browse and see where what support groups are happening you know what education programs could I participate in, then the community resource finder is that second resource that would be a great one, and that can be found at alz.org/crf. The CRF standing for community resource finder. That website allows you to go in, click what it is that you're looking for, it might be a support group it might be an education program. If you're someone who is having memory concerns but you have not yet connected to a geriatrician, or even to a primary care provider, you can select that type of information as well and search that that's what you're looking for in that community resource finder. Punch in your zip code and it will help you locate what services are available in your area. That is great at any time but especially now, we have made sure to filter that program so that only virtual services are shown. So every single support group or education program that is listed out there is being offered virtually. I think when you first search it will default about 500 miles that you can see programs and services happening within a 500-mile radius of that zip code you enter. You can you can adjust that zip code radius if you would like to but it gives you a ton of options. And then the final and third resource is our general website, which is alz.org, and there's a lot of good information. There's a whole section on COVID-19 and caregiving during COVID-19 as well as caregiving tips, or tips for living well with Alzheimer's disease and other dementias at any time.

Nathaniel Chin: Well thank you so much for all the information in the resources, Kate. I want to thank you again for being on Dementia Matters and we do hope to have you on in the future after the COVID-19 pandemic.

Kate Kahles: Thank you so much.

Nathaniel Chin: Please subscribe to Dementia Matters on Apple podcast Spotify Podbean or wherever you get your podcast. And rate us on your favorite podcast app; it helps other people find our show and lets us know how we're doing. 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 Bonnie Nuttkinson and edited by Bashir Aden. Our musical jingle is "Organisms" by Chad Crouch. Check out our website adrc.wisc.edu you that's adrc.wisc.edu. You can also follow us on Twitter and Facebook. If you have any questions or comments please email us at dementiamatters@medicine.wisc.edu that's dementiamatters@medicine.wisc.edu thanks for listening.