Aging with the Experts

Dementia Diagnosis? Now What?

• Aging Life Care Association® • Season 1 • Episode 4

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Wondering what steps to take after a dementia diagnosis?

A dementia diagnosis can feel overwhelming, confusing, and even frightening. 

In this episode, Rebecca Montano, PhD, CRC, CMC, CCM, CDP, talks with fellow Aging Life Care Professional® Crystal R. Littlejohn, MHSA, CMC, CSA, to walk listeners through the first essential steps to take after receiving a dementia diagnosis.

Together, Rebecca and Crystal break down what dementia really is, why getting a specific diagnosis matters, and how families can move forward with clarity and confidence. They share practical guidance on:

  • Understanding different types of dementia and what early symptoms mean
  • How to seek specialized evaluations and build a knowledgeable care team
  • The role of Aging Life Care Managers in navigating everyday and long-term challenges
  • Legal and financial planning every family should address early
  • Creating a supportive, safe environment and an evolving care plan
  • Why caregiver well-being is a critical part of the journey

Crystal also offers real-life stories and simple tools, like using a symptom journal, maintaining routines, and finding moments of humor to help families stay grounded during an emotionally complex time.

Whether you’re facing a new diagnosis or supporting someone who is, this episode offers reassurance, direction, and a reminder that no one has to go through dementia alone.


For more resources, visit AgingLifeCare.org your go-to source for trusted guidance and expert support in aging life care.

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SPEAKER_00:

Welcome to Aging with the Experts, a podcast brought to you by the Aging Life Care Association. Here to connect you with trusted voices and practical advice with real conversations and real solutions to help you navigate the complexities of aging. Whether you're facing the challenges yourself or supporting a loved one, you'll find guidance here.

SPEAKER_02:

Welcome to the Aging with Experts podcast, where we explore the many facets of navigating aging. I'm Rebecca Montano, an aging life care professional and current ELCA board member. I'm the owner of Aging Focused LLC, and I'm a certified care manager, certified case manager, certified rehabilitation counselor, and a certified dementia practitioner. Today we're talking about something that impacts millions of families, what to do after a dementia diagnosis. Getting that diagnosis can feel overwhelming, confusing, and quite frankly, scary. But there is help and there are steps you can take to make sure you and your loved one are supported. Joining me today is my dear friend and fellow ALCA board member, Crystal Littlejohn. Crystal is a certified care manager, certified senior advisor, and owner of Geriatric Resources LLC, where she helps families navigate the challenges of aging and cognitive decline. Crystal, my friend, welcome. It's great to have you with us today.

SPEAKER_01:

Well, it is a pleasure to be here with you, Rebecca. Thank you for having me for this really important topic.

SPEAKER_02:

Let's start with the basics. Many people hear the word dementia and immediately think Alzheimer's disease.

SPEAKER_01:

I hear that probably more often than I would care to say. The two have somehow become synonymous. And what I would say to any client or family member is that dementia is really an umbrella term. And what I mean by that is it it describes a group of symptoms related to memory loss, problem solving, sometimes judgment issues, and changing in behavior that really might interfere with one's daily life. Alzheimer's is just one type of dementia. In addition to that, there are others: vascular dementia, Lewy body dementia, normal pressure hydrocephalus, and frontotemporal dementia. Each has different causes and each has different symptoms. And for me, if I'm going to manage my expectations, I feel as I want the families to be able to do, they need to understand the what. What is it exactly that my loved one is dealing with? And then we can manage our expectations as to what symptoms to expect that might materialize for that person and how they might flow through this particular disease process.

SPEAKER_02:

That's such an important distinction. And thank you for explaining all of that. You know, so often people just receive kind of a generic diagnosis and they don't necessarily know what it is. So it's important for them to get more details, right?

SPEAKER_01:

Absolutely. How many times have we seen on the files of one of our clients uh words to the effect of cognitive impairment? I say that in quotes, or probable Alzheimer's, especially early on. And for our clients and their families, the key is not to panic. But I think it's bigger than this. The best advice that I can give a family member or a client facing a new diagnosis is to really reach out to the professionals. And what I mean by that is I will always ask for the primary care physician's referral to a neurologist or to a neuropsychologist, because it really does matter what the diagnosis is, not only what the diagnosis is, but the nature and scope of where that individual is within that diagnosis. So I'll give you an example. And I often say to families that one's ability to drive has really very little to do with their number of birthdays or a diagnosis of any sort, but more so the scope of that diagnosis. Where are they within the disease process? And then once we get to that, we can determine where the deficits lie. How many times do you have a client that you have that's been diagnosed with a new disease? But other than memory, you know, forgetting where did I put my keys or the things that we see happen very frequently, they are able to maintain appointments. They are able to get to where they're supposed to get on time. Their house appears to be in order. There aren't the stacks and piles and things that we see later on in a disease process. So for the family and for the client, knowing what it is and where they fall in that particular spectrum is vital to this process. From there, we can build a plan and build a support team around that client that is going to help them. And I always say to my families, we want to build a world around our clients for their worst day, not their best day.

SPEAKER_02:

I agree. That's so important. So let's talk about the families and what they can do next when they receive this diagnosis. So we're going to walk through five things to do after a dementia diagnosis. And this is based on the resources from the Aging Life Care Association. So step one, learn as much as you can about the diagnosis.

SPEAKER_01:

Yeah, there's real power here, Rebecca. Ask your provider what type of dementia is suspected and what symptoms to watch for, and what the next steps might look like. I personally want to know what I am in for? What do I need to worry about now? What do I need to worry about next week and what might next year look like? Um, I encourage families to write down questions, keep a notebook, be prepared because I think knowledge is power. And with that ability to track the information and to comfortably ask the questions that they have, I think that it reduces anxiety for each of the clients. The more you understand, the better you can plan.

SPEAKER_02:

Yeah, that's true. But, you know, on the other hand, I've had a lot of people say to me, I don't want to become the disease. I don't want my name to be, you know, changed over to dementia or Alzheimer's disease. I'm still Rebecca, I'm still Crystal. Right. And so when I hear this or I sense this from a client, you know, I kind of see that, you know, look in their eye or that cringe every time somebody brings it up. I work with the person to help them voice this to their support system. And then I care coach the support system on how to avoid bombarding the person with information they're just not ready for, or that makes them feel that their identity is being swallowed up by the diagnosis. It really is about balancing, having enough information, having support, and still kind of living your own life and you know, getting through your days. Like you said, the best days. Let's focus on some of those, right?

SPEAKER_01:

Absolutely. It's that's really a great point. And how many times, I think, in my mind's eye, do you sit in a provider's office with your client? And the next thing you know, you realize that this provider is now talking directly to you and not to the individual whose appointment you're attending. I mean, I see that all the time. And of course, our clients see that. It's reflected in the way they look back at you and say, I'm here, you know, I'm here. So I completely understand. And the journey is going to be different for each client we work with. Some are going to want to know everything, to be a part of everything. Um, and others are going to say, okay, I know this big thing exists for me. I know that I've received the diagnosis, but I am going to continue to live my life and trust that those people around me can help me build that world that's going to help me maintain normalcy. This is really where an aging life care manager can come in to ensure that everyone involved recognizes the unique person at the center of this and that we proceed in a way that's both comfortable and respectful of that person.

SPEAKER_02:

So, and that's a really great point. And that's part of the next strategy, which is building a support team and having the people around that are going to assist you. So, can you talk to us a little bit about that?

SPEAKER_01:

Absolutely. You don't have to do this alone. And I say this as much for the client as I do for the family. Um, seasoned professionals such as ourselves, the aging life care managers, uh, a trusted physician, uh, social worker who may be involved, uh, elder care attorneys and friends. We all build that world around our clients and put into place things that are going to be really important in providing them with respect and support.

SPEAKER_02:

That outside perspective can really help families make informed, balanced decisions without feeling lost in the process. Um, you know, I recently met a new client who thought it was too early to work with an aging life care professional because his wife was newly diagnosed. Um, and he kept saying, Well, when should I hire you? When should I hire you? And so I kindly, you know, said to him, um, or, you know, I asked him really if he would take a trip across the country without using his navigation system in his car. And he laughed at me and said, Well, no, of course I would use the navigation system. I wouldn't be able to get out of the state without it. You know, and I said, Well, that's what we do. That's what aging life care managers are. We're the navigation system for this road trip that you're taking with your wife that's called dementia. Like we can help you along the way navigate all these complex things that are coming out and just sometimes just be an ear to listen to or a shoulder to cry on, or someone to just like say, This is really hard, right? And there's no judgment from us. So, you know, starting early allows us to guide the person, their support system, their family members, friends, whomever that is, um, through multiple decisions along the way. We help to avoid unnecessary problems or headaches because we do this all the time, right? And we more than anything, we promote peace of mind. You know, they have a backup person, they have someone they can they can come to.

SPEAKER_01:

Um, but also really love that analogy. I have to say, it is probably the best one I have ever heard thinking about those circumstances, Rebecca, and I may have to use that.

SPEAKER_02:

Go ahead, steal it. Anyone who wants to use it, go right ahead.

SPEAKER_01:

And I mean, it to that point, you don't begin a navigation at the center of the country either. So people think they have to wait till, you know, the the little button pops up on the turkey and that it happens that easily. But I think that part of what we can do in those early stages is the planning that we do so well and helping people figure out the what-ifs, right?

SPEAKER_02:

Yeah. And it's also annoying, what do you want? You know, what how do you what do you want to happen when you can't make those decisions or, you know, raise your hand and say, hey, you know, what's going on? Number three on our five things to do after diagnosis of dementia is a big one. And I want to make sure we touch on this. Um, and that's legal and financial planning, you know, talking about what do you want to have happen. So what do you think on that?

SPEAKER_01:

I think that this is really important early and often, is what I say to many of our clients. Um, while your loved one has a voice to be able to say, these are the things that are important to me now and in the future. And that attorney can help you to put into place things for contingencies, for the what-ifs, and they're going to think about and consider things that don't come to mind for you because we are not programmed to think in that way. That's why there are attorneys, there are financial planners. That advanced directive document is going to be the road map for my family when the time comes. So not only will I fill out a power of attorney that says, this is my trusted individual who I will trust to make choices for me when I'm either unwilling or unable to do that for myself. And then the living will gives them that roadmap to what if, if this happens, I want you to do this. I think people underestimate the importance of these steps early and often. And I'm going to give you a very sad example of a case that uh we had not long ago. Uh, we had a client who had Parkinson's as well as a number of mental health issues. And at the time that he drafted his legal documents, he was pretty healthy, pretty well, and really basically says, do everything. I want everything. Fast forward 10 years, and he has not gone back to his attorney to look at those documents. His health condition is considerably worsened, as well as his mental health condition. And uh the gentleman in particular ended up on uh life-sustaining treatment that he may not have chosen if the if there was an opportunity to rediscover later in his process what he would go through. And so, from a legal standpoint, there truly wasn't much that could be done except for do the best that we could to advocate for him. But I say to people, what you believed five years ago may not be what you believe today. And so getting together and revisiting that, and we as aging life care managers are often the catalyst for that, you know, an annual review of is this still your preference? Is this still what you would like to do in this moment today? And oftentimes that changes over the course of our involvement with our clients. And uh with a dementia diagnosis, it's no different than the advice I would give everybody early and often.

SPEAKER_02:

Yeah, and it's very important when you do have that dementia early dementia diagnosis to make those decisions. Um, and and like you said, give your family some guidance and what it is you want so that they can do that on your behalf as you go forward. And that I think that is like a perfect uh stepping stone into the next strategy, which is create a plan, a care plan, and a safe environment.

SPEAKER_01:

Precisely. Um, this includes assessing your home for safety risks, establishing daily routines, and finding activities that bring joy and structure. As the disease progresses, preferences change, needs change, um monitoring or limitations that would have been unheard of maybe five years ago now need to be considered and thought about. And so sitting down with those families and the clients on a regular basis, how many times do you hear, when should I activate my power of attorney? Um, so those are conversations that we can help with the discussion based on our recognition of changes that we're seeing in the client over time, but that we've already looked at that roadmap that we created and that we continue to modify called the care plan, um, in order to keep us all on the same page in terms of what we're doing to support this client and their family.

SPEAKER_02:

Yeah, and that care plan really is fluid because life changes so quickly. Um, just you know, without any diagnosis, but then with the diagnosis, things change even more rapidly at times. So we really want to have that fluidity with our planning and have that support network to help us with that for sure.

SPEAKER_01:

Um, as aging life care managers have very busy brains. And, you know, as we're sitting and talking with a client, we're thinking of all the things, you know, what do we need to be concerned about? What is is on the road ahead? We often have to have those difficult conversations with clients and family members where that person has changed to the point where changes need to be made. And very often it's our level head and those uh conversations we hear families say all the time your calm, steady support of us and our family, your objectivity where we have none. You know, this is our loved one and this is our lived experience. We need someone who has experiences in all these areas that can help us to support and make the best plan and modification.

unknown:

Yeah.

SPEAKER_02:

Because I mean it's a tough road for that family member and that, you know, the caregiver. And um, you know, with that said, you know, we we coach them along the way and uh through the process as well, but we also want to make sure that um, you know, that we take care of the caregiver. Amen.

SPEAKER_01:

You know, caregivers are often so incredibly focused on taking care of their loved one, meeting every need for that loved one, that often their own needs are put aside or neglected. And, you know, let's face the statistics for caregivers are very, very grim. Um, without self-care, without respite, without an outlet for their concerns. Um, we find that most of them end up being burnt out and then guilty about feeling burnt out. And part of what we do is as much about caring for the caregiver it is um for caring for the clients. You know, you can't pour from an empty cup. We've already heard that expression. And I find um without aging life care managers and another support system around people that really shows love, compassion, and care for them, we very easily put our own needs aside. And so the health outcomes for the caregiver are poor. Um, so we need to rally around that individual as well. And I know some people have difficulty taking that in. Like, I, you know, how can I be selfish enough to go to my own doctor's appointment when my husband has Alzheimer's? Well, the reality is out of love and care for your husband, you not only should, you must.

SPEAKER_02:

Right, right, well said. I mean, sometimes giving that caregiver permission to step away, you know, and and breathe make makes all the difference. I I sometimes call it homework. You know, I'll tell my you know, family members, I am giving you homework, and your homework is to take a break. And whether that's I'm giving you homework to go to the doctor, I'm giving you homework to go for a walk, or I'm giving you homework to get a caregiver, you know, that sort of thing to give them that little respite that they need to re to you know re-energize because it's demanding. It sh really is.

SPEAKER_01:

Isn't that so true? Um, I think that the greatest gift that the caregiver can give their loved one is self-care. Um, if we're going to be there for the people that we care about, um, we can't do that if we are stressed and fatigued and sick ourselves with symptoms that we're not managing or monitoring. So if there was one true gift I could give to that client is a well caregiver, a uh caregiver who has really exercised self-care.

SPEAKER_02:

Well, before we wrap up, Crystal, do you have any final tips or insights for families that you'd like to share?

SPEAKER_01:

I do. And this one I think comes from a very personal place. Um, but I think it's a reminder to remember normalcy. And if it was funny before dementia, it should be funny now. I will tell you when my mom uh was at the end stage of her terminal illness, she began to lose her words. And one day I had finished preparing lunch for her. I set up her little TV tray in the living room, and I gave her her soup. And then I went to sit down across from her, and she said, Honey, can you get me a four by four? And I was quite puzzled. And I'm thinking, my mom was a nurse for 35 years at the same hospital. Uh, I know she doesn't mean a four by four, but I'm not exactly certain what she means in this moment. And I she could see the wheels turning and she looked up at me and she said, What's wrong? And I said, I don't know what you're asking me for. And she said, I have to wipe my mouth. So forever after Rebecca, a napkin is formally known as a four by four in my household. And there were many such events that happened with my mom during her end of life. And I think that sometimes we get so mired in the in the word, in the diagnoses, that we forget to smell those roses and find that humor. And um, that our loved ones want that humor around me if humor is what they've always wanted, you know, um, and to find those beautiful moments that feed each of us, um, to say she's still in there and everything is still good, and you know, all the other things that give us the feels. So I would say another gift that a family could give themselves is to just remember the joy and don't forget to let it in each and every day.

SPEAKER_02:

That's wonderful. Thank you so much for for sharing that. You know, this is a journey that we go on with our families and and our individual clients, and you know, they don't have to figure it all out all at the same time. It's it's okay for it to be there there to be laughter and to have silly moments like that. It's okay to admit when they're getting to when things are getting to be too much, and that's where professional support really helps, really helps. So such great advice, Crystal. If there's one takeaway from today, I think it's this. Even though you are frightened or nervous or whatever the emotion is when you get that diagnosis, there is help out there, and there are things that you can do to get informed, maintain your quality of life, preserve your own dignity as you progress through the disease. The best thing you can do after a dementia diagnosis is breathe and then build your support system. So working with professionals like an aging life care manager can help you navigate the unknowns with confidence and compassion. You can find qualified professionals in your area at aginglifecare.org. Crystal, thank you so much for joining me today and sharing your wisdom.

SPEAKER_01:

Rebecca, it's really been a pleasure and thank you for having me.

SPEAKER_02:

And thank you to our listeners for tuning in to the Aging with Experts podcast. Be sure to subscribe so you don't miss future episodes. Um, I think we probably identified about five more just in this segment. Um, until next time, take care and remember there's no shame in asking for help.

SPEAKER_00:

Thanks for listening to the Aging with the Experts podcast. To learn more or find an aging life care professional near you, visit aginglifecare.org. Be sure to subscribe and share this episode with someone who might benefit.