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Alzheimer's Association offers advice during this unusual time

What the 5.8 million Americans living with Alzheimer’s – and their families – need to know amid the coronavirus pandemic.

MINNEAPOLIS — Those dealing with a “no visitors” policy at nursing homes are struggling with the separation.

And that’s especially true for those on the Alzheimer’s journey, given that loved ones may not be able to connect via the phone or through a screen.

So this week, KARE 11’s Karla Hult sat down – social-distancing style – with the CEO of the Alzheimer’s Association Minnesota-North Dakota, Sue Spalding. They discussed what the 5.8 million Americans living with Alzheimer’s – and their families – need to know during this difficult time.

The following are the questions and answers from that interview, including specific advice for those on this journey. And spoiler alert: Sue believes the best immediate resource for people remains the 24/7 Alzheimer’s Association helpline: 1-800-272-3900.

KARLA: “We talk about trying to connect with our loved ones in the nursing home, but it is especially difficult when they are far along in their Alzheimer’s journey and may not be able to connect by phone or through the screen. What is the Alzheimer’s Association recommending for those individuals?”

SUE: “Yeah, this such a hard time, because it is so important for our loved ones to get that extra stimulation and to know that people care about them. So this is really challenging for both parties, those of us who have loved ones in the nursing home and for you who can no longer go.” 

“So I think, Karla, you’ve had some great tips this week, to talk about how you can FaceTime, how you can call and use your phone. How you can maybe use your computer to do just this kind of talking like we’re doing right now. But you can also just leave those messages, and have the staff at the long-term care facility play those messages later. And that’s something they can listen to, whenever they want to hear your voice throughout the day, which is really nice.”

KARLA: “The people who are far enough along, and I think about my dad at the end, he was hardly able to make that connection when I was physically in front of him, and I just know that that screen would have thrown an additional hurdle, another barrier that we would not have been able to cross at all. It just would not have happened. Anything that people can do in those circumstances, if not to encourage their loved one, at least maybe the people who are seeing their loved one?”

SUE: “If there’s any way to make contact, try to figure that out, I love the idea of going to the facility and waving through the window and holding up signs for your loved one. And while they may not recognize you, they may not understand all that, I think that will definitely help you as an individual to know you’re trying to make that connection. And think about what that will do to the staff, too. Can you bring balloons? Any kind of fun posters? Any way to connect with the other people in the facility, too?  Leave flowers at the door for somebody to come in.” 

“But yeah, this is really going to be hard on everybody, and we don’t know how long this is going to take, and people will continue to progress through that, so I think one of the real concerns is how much further along will it be with your loved one when you get to finally go back in and see your loved one. That’s going to be a real shock, I think, to some people.”

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KARLA: “I can only imagine, just because it does, especially if they’re further along, it changes so drastically all those slow, incremental changes suddenly get so tight or compounded…

“On that point, I also have been thinking about those families where, perhaps it’s an older couple, where the partner still has their loved one at home. And now they’re without those options to have relief… So what would you say to the caregivers right now who find themselves isolated with their loved ones, but with a loved one who has Alzheimer’s and therefore isn’t able to connect? Certainly this has to be so overwhelming for the caregivers, too?”

SUE: “Oh absolutely, I think about them all the time. And of course people want to keep their loved one at home, but this disease is already isolating as it is. And then to have this on top of it, is just compounding that isolation. So that’s one of the reasons the Alzheimer’s Association is here. And so many resources that we have to help people, and I think our helpline is that number one resource for people who are in need [1-800-272-3900]. They’re going to be stressed out, those caregivers, they’re going to need somebody to talk to. And if they don’t have a person coming in, I would say reach out, reach out as often as you want throughout the day or throughout the night. Just have that support, talk through whatever you’re going through at that time, to have someone to vent to, everybody needs that. But really. to connect to the resources and support that they need. We have our online virtual support group. We’re doing telephone support groups. We’re converting all of those, you can still access our website to get all kinds of information that way. And I think it’s important to connect with others, too, throughout your community, throughout your neighborhood. So hopefully those caregivers are taking advantage of things just like this, too. Who are they FaceTiming out in the community, other loved ones and their family? Who are they talking to, to get additional support? But there’s always the Alzheimer’s Association helpline that’s available.”

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KARLA: “Is there anything you feel we should address, that we haven’t covered so far?”

SUE: “We are still doing care consultations, too, virtually so we can do it just like this and we can get everyone across the country to participate in those care consultations, or we can do it over the phone. And that care consultation is really that resource to help you navigate this journey and help you start thinking about what are those questions that lie ahead. How long is this going to be that we’re all in this situation? How will that impact your loved one? And help you really plan for the future.”

KARLA: “So care consultations, just to be clear, they’re an opportunity for a family, or person living with Alzheimer’s, to talk with one of your staff members or volunteers about what their current circumstances are, or what their current diagnosis is? Or what, precisely, is the care consultation again?”  

SUE: “Care consultation is kind of that advanced program from a helpline call. So if you call the helpline, you’re going to be able to get your questions answered. They’re going to probe and find out some more things that you might need for support and resources. The care consultation is really looking at the big picture of the disease and how somebody is going to navigate this journey, which you know very well, is a journey, it’s not a sprint. And how they’re going to work with everyone in their families to make it the best journey possible. So this is when we want to bring in family and friends, whoever’s caring for that loved one, to say, ‘hey, we’re all in this together, how are we going to go down this pathway?’ We would call in and put that all together in a phone call with family, friends across the country even right here in the Twin Cities. Or we can do it by Zoom, we can do it by BlueJeans, we can make sure people feel connected and really talk about the future and how you’re going to live well with this disease.”

“The helpline is not just for families and friends. But those health care workers are going to need support and resources, too, and so this helpline is there for them also. And we hope they utilize that when they’re at their wits’ end or they don’t know what to do with somebody after a while. We’re here to help them through that, too.”

And with that, the Alzheimer’s Association helpline number is available 24 hours a day, seven days a week: 1-800-272-3900. You can also check out the Alzheimer’s Association website for more information.