Additional Resources Mentioned

In the Beginning – continued

Next Steps – You are ready for more 

7. Continue your education:

• Take the Savvy Caregiver course in person or online.
• Read this magazine:  
  • Mayo Clinic Living with dementia: A guide to caregiving and support. 
• Find and take a virtual dementia tour near you. In the United States, in your search engine, type ‘virtual dementia tour’ +  ’your state’. For example: ‘virtual dementia tour Florida’ or, outside the US, replace your state with your country.

8. Start planning for the next stage of care.

• Build your personal support network:
  • 21 minute TCJ podcast: 40. Create Your Personal Support Network
  • TCJ blog: 40. Create Your Personal Support Network.
• Find and try a memory cafe (Caregivers and care receivers go together).
• Investigate dementia day centers (also known as adult day centers that include dementia care programs) for your care receiver. Community resource finder: 
  • Select Community Services and choose Adult Day Centers for your search.
• Ask your loved one’s medical team for a home safety assessment.
  • The goal is to have someone evaluate your home for safety and dementia care needs. 
  • This is usually available through palliative care, GUIDE program, or an order from a physician.
  • You can get a free assessment from social services with this order, or you can pay for an independent assessment from a private organization.

9. Investigate your local government community support: 

• In the US, contact your local Area Agency on Aging. Search for yours at Eldercare.acl.gov or call 1-800-677-1116.
• Call and set up a screening for eligibility:
  • They will point you to any free government services where you are eligible. 
  • Be sure to find out if you are eligible to get paid to be a caregiver. 

10. Evaluate driving risks. 

• Some US states have specific requirements for individuals with dementia to report their diagnosis and potentially undergo driving evaluations. 
• Listen to this podcast or read this blog:
  • 21 minute TCJ podcast: 5. Taking Away the Keys
  • TCJ blog: 5. Taking Away the Keys. 

 

• Support the nonprofit The Caregiver’s Journey: https://give.cornerstone.cc/thecaregiversjourney

 

Takeaways

The Three Stages of the Dementia Caregiving Journey

1. In the Beginning – Your loved one receives a diagnosis. 

• You are the caregiver for TWO people – and you have equal responsibility to both! You instinctively know one is your loved one, but who is the second one? It’s you!
• Your caregiving goal for both of you is keeping you safe and comfortable.
• For your care receiver living with dementia, keep front and center helping them maintain as much dignity and independence as possible.
• Your natural instincts will pull you to take control to protect them.This can be counter to dignity and independence. At this point, as the primary caregiver, your role is providing most of your support in the background. 
• The time will come when you will need to take more control. Be patient and let it come naturally.
• You may begin grieving losses along the way – some minor, some more significant. We call this ‘drip grief’. It’s still grief.

2. The Messy Middle – You begin asserting control; this is when it gets messy!

• Your care receiver still thinks they can do most things while you’re getting more involved,   and this adds to their frustration. 
• There’s a lot of observing and adjusting while helping them maintain their independence.
• Your loved one is frustrated because they aren’t sure what to do. Sometimes, they’re also scared.
• It’s important to look at things from their perspective, maintaining empathy and connection during this challenging stage.

3. Later On – You are managing all aspects of their care. 

• Caregiving becomes easier in many ways at this stage – and harder in others.
• Be aware of your ongoing grief (sometimes called ‘anticipatory grief’). 
• Prioritize self-care and reach out for support.

 

Read More in This Blog here

 

Full Episode Transcript

Have you ever felt overwhelmed because you can’t find the information you need or you’re drowning in so many conflicting resources, you don’t know what to do with it all. Nancy and I are joined by Jenny Gay. She’s the clinical social worker for the Emory Integrated Memory Care. We’re discussing a step-by-step roadmap and resources for you to help prioritize the beginning of your dementia caregiving journey. We’ve identified 20 total steps in the entire journey. In our previous episode, episode 43, we talked through steps one through six. If you’d like to, you may want to go back and take a look at those. Actually, no matter where you are, you may want to go back and listen to those if you haven’t already because they’ve got some really great insights. Today, we’re going to be talking about steps seven through 10.

 

Nancy Treaster 

Welcome, Jenny, to the series on navigating dementia caregiving roadmap. As Sue said, we are covering steps seven through 10 here. We’re still in the beginning, but we’re at the second part of the beginning. Steps one through six are the steps we said you should take right after the diagnosis. And then these seven through 10, we say, you know what, give yourself a break once you get through steps one through six. And when you’re ready for more, here’s where you pick up.

 

Step seven through 10. And this is still ‘in the beginning’ stage. Now, you might not feel like you’re ‘in the beginning’ anymore based on Sue’s description of what the different stages are. But whether you’re ‘in the beginning’ or not, these first 10 steps are valuable steps for your caregiving journey. So listen to them, absorb them, and if you haven’t actually executed on anything in these 10 steps, whether you later in your journey or not, there’s still time to go back and do these. 

 

So first, let’s introduce you to our listeners. As Sue said, you are the social worker for Emory’s integrated memory care. You have an undergrad and a master’s in social work. So we are thankful you’re here with us today. That’s for sure. So thank you so much for being here with us because we really appreciate all your expertise and help. 

 

Jenny Gay

Thank you so much to Sue and Nancy for having me. It really is a pleasure to be here and to be part of this amazing tool that you guys have created that I think will make a tremendous difference for your listeners and hopefully our patients. 

 

So my role as a clinical social worker at Emory Integrated Memory Care is to support families that are caring for a loved one living with dementia who are our patients. I am supporting families who have received a diagnosis recently or who have received a diagnosis maybe years ago. But they all tend to really remember what that experience was like. The diagnosis process for many of the patients and families we serve is a traumatic experience. And they’re expressing feelings like shock, fear, stress, a lot of wondering what’s going to happen next and how they’re going to take care of themselves and how they’re going to take care of their loved one. And so at this point after experiencing the trauma that’s been associated with diagnosis, they are often trying to figure out what’s important now, what can wait until later and what they don’t need to worry about at all at this point in time. 

 

Nancy Treaster

Well, the good news is that’s what we’re going to tackle in this series and we’re tackling part of that today. As we said today, we’re focused on steps seven through 10, but these are steps that are particular to the part of the caregiving journey that you’re on and the stage that you’re in. So before we get started, Sue, why don’t you give us an overview of the stages of the dementia caregiving journey?

 

Sue Ryan 

When Nancy and I talked about our caregiving journeys, we kind of broke it out into what became obvious as three different stages. And these have nothing to do with the steps or phases or stages or whatever you want to call it on the dementia diagnosis on the medical side. We’re talking about the stages for us as caregivers. And our three stages are first ‘in the beginning’ . Our care receiver is pretty fully independent or needs very little help. And we’ve just got a lot of things to figure out. We just don’t know what it is we don’t know yet. And then a little time passes. And the second stage is where we need to start asserting control. And we call this the ‘messy middle’ because it is. It’s messy. 

 

It is really tough because they know something’s going on and they have things where they shouldn’t or aren’t going to be able to be doing it anymore and they don’t want to let go or all kinds of things, but this is messy. And then we get to the third stage and we call this one ‘later on’. And we now are fully responsible for their care, their health and their safety. And so throughout the 20 steps, we’re going to be talking about the different stages, but for right now,

 

Let’s just talk about this first stage, which we’re calling ‘in the beginning’. And this is when your loved one receives the diagnosis. And what happens as soon as that happens is now you’re the caregiver for two people. And you may be saying, well, no, no, no, no, no, I’ve just got my one care receiver. You have equal responsibility for two people, your care receiver and you.

 

It’s so incredibly important for you to prioritize your own care. Look at yourself and everything that you’re doing, we kind of talk about under the lens of keeping you safe and comfortable. And everything that I did in my decisions with my care receivers was, it helped them stay safe? And I use the word happy, comfortable works, but are we focused on those things? And that shifts over time. So for our care receiver, keeping them front and center and part of what we want to make sure we’re doing is helping them maintain as much dignity and independence as possible. And in this first stage, one of the things, and this may seem counterintuitive, is even if they’re starting to struggle with something, as much as we possibly can, we want to let them stay in control of things, even if it’s kind of not done quite as well, but we want to be supporting them.

 

in the background. So we want to make sure that we’re helping them have that independence and maintain their dignity. Because we know the time is going to come when that’s going to be kind of going away. And then as it starts to go away, we’re kind of grieving those things. They can’t do this anymore, they’re struggling with this and we know it’s not going to come back. A quick story about my husband, he loved to walk. We live in a community that’s a circle and he would walk four to five miles a day, loved it, visited with neighbors along the way. And as his diagnosis progressed, I started putting cones and flags and things out that would make it really obvious where we live. And there came a day when he couldn’t get home anymore. And so I had been grieving along the way that I needed to kind of give him more indicators and give him more indicators, but I was doing it in the background. So he still maintained his dignity and independence. And then there came the day when he couldn’t do that anymore. And so that’s that drip grief. So in this podcast, we’re focusing on the first stage and we’ll talk about the other ones in the future podcasts.

 

Nancy Treaster

Exactly. So thank you, Sue. That was awesome. So ‘in the beginning’, we already covered in the previous podcast, steps one through six, those are what we want you to focus on right after the diagnosis. These are the first things we want you to focus on. Now you’ve had it taken a breath. You’re still in the beginning, but you feel like, okay, Nancy and Sue, I’m ready to take on more. What do you got for me? So that’s what these steps are. Seven through 10 is okay. Are you ready to take on more? Here’s where we want you to go.

 

So let’s start with step seven, which is to continue your education. Sue and I are big believers that the more educated you are, the more knowledge you have, the more confidence you’re going to have, the more patience you’re going to have with your care receiver, and the more peace of mind you’re going to have, you’ll sleep better. Because knowledge is power. And we want you to learn more.

 

And we want you to learn faster and more easily than we did. So when we say continue your education, we didn’t put a lot of education in the first six steps, two small things we wanted you to do. But now we’re going to focus more on education.

 

And one of the things that’s important for our listeners to know is that throughout everything we do, we will never recommend a product or any kind of an offering or program or anything that we haven’t personally participated in.

 

Jenny Gay

So the first one we’ve all participated in is the Savvy Caregiver. 

 

I have had the opportunity to be trained to teach Savvy Caregiver and it’s an offering we have at Emory integrated memory care. The class itself provides the most helpful educational information I have seen for caregivers caring for somebody with somebody for caregivers for somebody living with dementia. The course provides extensive education about various types of dementia and disease progression. And then it really helps you as the care partner to understand disease staging and how to work with your partner or, sorry, helps you to work with disease staging and work with your loved one to help them be as successful moving through a task as possible without igniting agitation or another behavioral, something that’s difficult to manage. It also helps you think about how to grow your caregiver village. And it also helps you think about paying for care in the future and how to move about care. So it’s a very comprehensive course that offers you videos, workbooks, manuals, and then there’s a virtual conference or an in-person conference once a week.

 

And that’s a time for everybody that’s taking the class to come together, share their experiences. You have homework while you’re taking the class to try different approaches to care with your loved one. And when you come together, you can kind of workshop what you’ve been doing with your loved one and get feedback from other caregivers and your instructor. So it’s a really comprehensive class that also offers you a community to be a part of while you’re taking it.

 

Sue Ryan 

Which is great and both Nancy and I benefited quite a bit from that. One quick thing for you as you’re listening to this, Savvy is spelled S-A-V-V-Y and we will have links to that in the show notes so that you can go explore it for yourself.

 

Nancy Treaster 

Agree, and I would say everything that we’re putting in this step seven is really good high level early stuff. So the Savvy Caregiver course, while comprehensive, it’s not going to overwhelm you with too much information about things that you don’t need to know anything about right now. It does a good job of giving you an overview of what’s happening, helps you do some exercises so you immerse yourself a bit in it but doesn’t make you feel like you’re learning stuff that you don’t need to know for five years. So that’s why we’re recommending it at this point. Another thing that’s very similar in terms of content is the Mayo Clinic has a, they call it a book, but it’s really a magazine, called Mayo Clinic Living with Dementia, a Guide to Caregiving and Support. We’ll put a link in the show notes, of course. There’s a link in the guide as well.

 

And this is almost the same kind of thing, but more in a book format, so it’s not as interactive, but it gives you a general idea of what’s happening and what’s going to happen. And really, I think, helps you get in the right frame of mind for what you’re getting ready to need to deal with.

 

Sue Ryan

One of the things that helped me a lot in the beginning was really transformational for me, because I had absolutely no idea what I was about to step into. And it’s called a virtual dementia tour and they have them in the United States and they have them globally. It’s it, it literally has you go into the dementia experience. What are they, what are they experiencing? And you go in there and I’m not going to say anything more about it, but I highly encourage you to take a step in their shoes. And one of the things that you can do is you go to your search engine. One of the things you could do is go to your search engine, type in ‘virtual dementia tour’, put in either your state or your country and look for where they have them and when they have them and take a virtual dementia tour.

 

Nancy Treaster

I agree. That’s an excellent resource.

 

Sue Ryan 

Then let’s now go to step eight, which is, we know that that next stage is coming. Let’s start planning for the next stage of care. And we have, of course we created a podcast about that because it was so important to us. We have a podcast and a blog on them and the podcast episode is episode 40, which says, this is a tough title to remember, create your personal support network. Well, we wanted to make it pretty easy to understand. So create your personal support network. There you go.

 

Nancy Treaster

This, at this point in your journey, because remember we’re still in the beginning, we’re talking about building your personal support network. This isn’t paid caregivers or communities or all that. These are the people who offer to help. And you learn your job is to say yes when other people ask to help and to have actually thought through some things people can do to help you. 

 

Jenny Gay

So Savvy provides examples of what things people can help you with. It helps you come up with a menu of items when people say, I would like to help, I would like to do something, because I think those offers only get extended for a period of time. And so we want to open those doors and we want to let people in, even though most of us want to close those doors and isolate and not ask for help, because we want to be the ones helping. Horrible at accepting help.

 

Sue Ryan

Our mantra, when someone offers to help, say yes.

 

Jenny Gay 

Say yes, big time. 

 

Nancy Treaster

Big time. We should put that at the end soon. 

 

Jenny Gay 

All right. So step eight, again, start planning for your next step of care. And this is not professional caregivers or community placement. This is talking about how typically your loved one is still in the home with you and you are trying to find ways to give them quality of life and safety. And so we’re going to talk through several options and several different programs to do that. 

In most communities, we can find things like a memory cafe. A memory cafe is a lovely way to have a safe and engaging space for you as the caregiver and your loved one living with dementia, go to a social space typically housed in a church or a senior center. A lot of the time these programs are providing music and games and it’s a time where you can take your loved one to that space where they can really engage and you don’t have to be self-conscious about

if they have an incontinence episode, if they have a behavioral outburst, this is a compassionate kind space that’s also engaging and structured and safe for you and your loved one. Good point. We also in our various communities have adult day programs. And so we have adult day health programs, which are more geared towards providing engagement, but also more clinical based care. So medication administration, the big line in the sand for these programs is that the adult day health programs can provide assistance with incontinence. They often also have skilled therapies on site and they operate a full business day. And then we’ve got more social day programs which cannot manage incontinence or medication management, but are really, really good for folks in the early to moderate space that need routine and structure and guidance and prompts and cues and to be with other people. We know that being with other people, getting out of the house and getting out of our comfort zone, helps us to maintain our current level of ability for as long as possible. This is also a super affordable way for a caregiver to achieve a respite opportunity that they may not have if they don’t access this service. Adult day programs are much more affordable than placement or home care services, and they are really engaging and positive for our people.

 

Nancy Treaster

So this is another example of something that we put in the show notes as well as in the guide itself, links to Alzheimer’s Association in combination with AARP have a community resource finder. And so we’ll put a link to that in the show notes. You can go out there and find day programs and memory cafes and things like that out there. So it’s a good place to find them. 

 

Jenny Gay

One more recommendation we want to make is that you request a home safety assessment. A home health safety assessment for a person living with dementia is a comprehensive evaluation of their living environment to identify potential hazards and identify necessary modifications to ensure their safety and wellbeing. The ways that you can access a home safety assessment are through community-based palliative care providers. If you’re enrolled in the guide program, a home safety assessment will be part of that enrollment process. Also, if you request a skilled therapy service, such as speech therapy, occupational therapy, physical therapy, as a home health order from your physician,

 

It can include a home safety assessment from the occupational therapist that works there. Or if you’re discharged from the hospital with the home health order, that home safety assessment can be requested through that home health provider. And these are ways to make sure that your home environment is as safe as possible. And again, to have those protective and preventative measures in place so that you and your loved one can be in the environment where you want to be, where you have happiness and comfort and safety.

Nancy Treaster

Thank you so much. Well, step nine is really another way to get to a lot of those resources, but also there may be other resources that are available to you that you don’t know about. So step nine is to investigate your local government community support. In the US, this is typically your area agency on aging or people will, you’ll hear people call it the AAA. So area agency on aging, just search in your search bar area agency on aging and your city or state your local area and find the telephone number and give them a call and set up an assessment. Set up a screening. You’ll find out in that screening what community services you’re eligible for and you’ll find out lots of different things that are available. Now, I wish we could tell you exactly what’s available through these kinds of resources, but unfortunately, it varies widely. Even in one particular state, there’ll be 15 different area agencies on aging. They’re very geographical, so they’re very specific to a geography. They don’t overlap, but they all seem to have very different services that are available at no cost or at a supplemented cost to you. So we want you to check in on that. Also, we want you to check and see if you or someone in your family might be eligible to get paid to be a caregiver. You’re not going to get paid an executive salary to be a caregiver, but for some people that’s actually a big plus because there is a way to, in some states, someone paid to be a caregiver for your loved one that’s in the family.

 

So that’s option at this point. want you to find out as soon as possible.

 

Sue Ryan 

And Nancy, to your point, because of the diversity of types, one of the places you could go to, and we’ll put this in the show notes, but it’s called eldercare.acl.gov. And there’s also a toll free number, which is 800-677-1116. So you’ve got a lot of different ways you could be finding the information and it’s really helpful. So again, you’re learning more about kinds of things you might be aware of now that you didn’t need to know right at the very beginning.

 

Jenny Gay 

Exactly, thank you Sue. Absolutely. So we’re going to move on to step 10. Step 10 is, it’s a spicy one. It is true. It’s evaluating driving risks. Driving is something that at our clinic we are very proactive about addressing because we care very much about the safety and wellbeing of our patients and their families.

 

Driving is something that represents adulthood and dependence and losing the ability to drive due to this disease process is a series of losses that are compounded. And it’s a really, really difficult one for a lot of people and for others, they’ve reached a stage where they are not upset about it. And so everybody’s experience with not driving anymore is very different and every caregiver’s experience with their loved ones either willingness to stop driving or resistance to stopping driving is a different journey. can be very difficult. It is well said. And so even when we have patients come into our clinic that are diagnosed as mild cognitive impairment or early stage, I still always try to find an opportunity to talk about the risk of driving because the ability to have a driving evaluation is always on the table. Having a driving evaluation done can serve as a protective factor if you are living with dementia and driving. Now I will say this, and this is something that can feel really scary, but it’s an important truth to hear. If your loved one living with dementia is driving, and they have an accident, even if it is not their fault, which can very easily happen, they can be sued and their medical records can be summoned.

 

The financial consequences of something like that are devastating. And also trying to move through a legal battle on top of caring for someone living with this disease process is horrible. It’s a horrible experience for everyone. And so if we can help people safely get to a spot where they are not driving and we can utilize lots of different resources to get them to where they need to be, we can protect their quality of life for a much, much, much longer period of time. So true. Yeah. And every state’s different too, in terms of, there are states that have much stricter rules. So investigate your state rules as well, because they may be in your country, because they may be much stricter than even just recommending that their driving be evaluated. 

 

Sue Ryan 

Nancy and I had very different experiences with this. We created a podcast episode on it, which is podcast episode five, talking about taking away the keys to Jenny’s point. You know, my husband was a numbers guy and we showed him the financial implications of what it was. And he handed me the keys and Nancy, Yeah, Nancy didn’t have that experience. 

 

This is one of the ones where you hear the variety of it. This is also another reason that you go to support groups because you’ll hear a variety of different stories, options people have used to try to support that part of the journey. But this is something to, even while they still have some independence, even while they think they could still be able to drive, it’s really helpful for that consideration to begin right now. Because it protects you, it protects them, and it protects others on the road.

 

Jenny Gay

Something I just want to add is that, so a lot of people just think about the cause and effect of your loved one hitting a car and doing all of that. Where I see people run into the most problems when they have car accidents with dementia, they may not know where they are. And to the executive functioning that is involved in navigating an accident when you get a rush of adrenaline is very complex. 

 

Sue Ryan

Jenny, thank you so very, very much. Your insights are tremendously valuable for us and for our listeners, and we appreciate it. We’re going to go into, in our next episode, that ‘messy middle’, and we’re going to be going through steps 11 through 17.

 

Jenny Gay

Well, it has been such a pleasure to be with you Sue and Nancy. And again, thank you for inviting me to be part of this incredible work that you guys are doing and sharing in our community. So grateful for what you’re doing. 

 

Nancy Treaster

Well, we appreciate all your support today for sure. And in both these episodes. So thank you so much.

 

All right, well, let’s summarize. Today, we talked about the second part of ‘In the Beginning’.

Today we talked about the second set of steps that you should take ‘in the beginning’. When you finally feel like you’re ready for some more, you’ve done the first six steps, now you’re ready to absorb a little more. Here are steps seven through 10 that we recommend you take. Here’s the steps. 

Step seven, continue your education. We talked a little bit more about some more formal education we could take at this point to try to give us a broader view of what’s coming.

Step eight, start planning for the next stage of care. This is not permanent. This is not your community and your professional care. This is just the care you need to plan for as things are going to progress. 

Step 9 – Investigate local government community support. There’s lots of potential support there. We want to make sure we know what it is. 

And step 10, evaluate driving risk, which we just heard a lot about. 

 

If you like this podcast, please subscribe or follow it. We really, really appreciate it. All the resources we’ve discussed here, the links will be in the show notes, the links will be in the blog, and all of these links are also in the guide called Navigating Dementia Caregiving Roadmap. So you’ll be able to get to any of these resources quite easily.

 

Sue Ryan 

We know this journey can be overwhelming. We also know you’re not alone on it. We’re all on this journey together.

 

Nancy Treaster

Yes, we are.