Transcription:
Dementia Affects the Whole Family

Melanie Cole (Host): Welcome to Bryan Health podcast. I'm Melanie Cole, and today, we're discussing the impact of dementia on the family. Joining me is Dr. Ahsan Naseem. He's the Medical Director for Behavioral Health Services at Bryan Medical Center.

Dr. Naseem, it's a pleasure to have you join us today. So as we get into what dementia actually is, first of all, is memory loss a normal part of aging? Is it something that is inevitable? Can you tell us about that?

Dr Ahsan Naseem: Well, thanks for the invitation. It's good to be here. Actually, we start losing the capacity or actually even gray matter cells, neurons after the age of mid-20s. And as we age, we are incurring an ongoing loss in that neuronal tissue. So it's natural to then expect that our cognitive abilities with age will decrease.

However, we are also gaining experience and we can compensate quite effectively through different techniques that the brain can come up with. So, although, yes, in very literal terms, there is an age-related decline and this is more perceptible in advanced years, rather than in the 40s or 50s, so much more clearer in late 70s and mid-80s. However, each person has their own individual way to compensate for it. And there are many people who are highly effective into their older years. So, I guess there is no specific way of predicting this other than the fact that it's really individual for each person.

Melanie Cole (Host): So we hear these terms bandied about, Dr. Naseem, dementia. Alzheimer's, memory care, memory issues. Tell us the difference between dementia and Alzheimer's, this umbrella term, and how that all fits together, and what's the difference.

Dr Ahsan Naseem: So it's become somewhat synonymous to assume that when we talk about Alzheimer's, we are talking about all of dementia. But Alzheimer's type dementia is just in one of the many types of dementia, which a person can suffer from. The characteristics of Alzheimer's dementia is this gradual course of decline over time. And once the illness sets in, then the neurological changes in the brain matter continue to create this ongoing deterioration in function, which is gradual and can last several years until it becomes really severe and profound.

However, there are other types of dementia too. And one easy example is that of vascular dementia, which is caused by chronic hypertension or particularly with strokes. And in these instances, as you can imagine, there is onset of a stroke and sudden shift or deterioration in the ability to function cognitively. So in that example, the decline is very sudden, you could say is even overnight. And that unfortunate event then requires significant amount of rehab. And some people will be able to, again, compensate for it and unfortunately many people do not compensate for it.

So the point I'm trying to make is dementia comes in multiple different variations and Alzheimer's dementia is just one of the types. Vascular dementia is just another example of many of the types of dementia.

Melanie Cole (Host): Thank you for that explanation. So we think about the things. I'm 57, Dr. Naseem, so I forget my keys in a room or I walk in and I go, "Why did I come in here?" But what should someone do if they're concerned their parent might have dementia? What are some of those symptoms that would signal a visit to their physician? Because, you know, we all have little memory lapses. We used to call them senior moments, right? But what does that mean really? What are those symptoms?

Dr Ahsan Naseem: That's a really important question. And please remember that as we get older, our responsibilities do not diminish. Actually people in their mid-50s have extensive amount of responsibilities. They could range from our careers and our personal lives to sometimes caring for older parents, to taking care of our children, or at least being involved in their lives apart from our commitments to things that we feel connected to such as a church or other organizations or ventures that we feel invested in. So the plate actually becomes more full and it does become a task to balance everything and to stay on top of everything.

So these rudimentary things such as tossing the keys in a particular place becomes a matter of habit. And if the keys are not there, then yeah, it's a mad scramble of where they could be because we are simply not paying attention to them. This particular example wouldn't make me feel apprehensive at all. It's usually more an indicator of a person juggling multiple things all the way down to sometimes even impaired sleep because of that way of life that reduces our ability to immediately recall where the keys were. So we developed this method of placing the keys at a certain place, placing our bags in a particular place and creating a routine, so we don't have to pay attention to any of this.

However, there are obviously signs related to a cognitive decline in anyone. And one I think important point to make here is that it's not necessary that dementia appears only in advanced years.. There are many instances of early-onset dementia in which patients can experience the same symptoms in their 40s. And it is the same illness, just earlier onset.

One of the most common such presenting symptoms is actually word-finding difficulty, of not being able to come up with the right word. And this happens repeatedly. It's not just because they're tired or they're unprepared. It's just a constant struggle. And I think an equally important symptom in that is the frustration that comes with it because most of us will laugh it off if our vocabulary fails us at a particular time, but a dementia patient feels aggravated by it. They realize it's happening.

Other common symptoms are more related with what we call executive function, complex tasks, which a person would have been able to do before. But they find it very difficult to do now. And this could be, you know, looking at spreadsheets, their business budget, for example; juggling complex tasks, which they could do before, but now consistently cannot do anymore at the same level of proficiency.

So as you can tell from these examples, the onset isn't remarkable, unless there is a stroke and there are many other symptoms that go with it. Gradual onset, it's insidious, and it sort of seeps in bit by bit. The irritability that goes with it, the frustration that goes with it, it's picked up by family members and they can start to notice that their parents are not quite managing the same as they did before.

So, I guess those would be the key things I would ask about if someone were to come to my office and needing a screening or assessment for dementia.

Melanie Cole (Host): Dr. Naseem, in any other podcast, we would go over dementia, some of the treatments that are available, what you do to sort of optimize cognitive functioning. But this particular podcast, we are talking about the impact on the family. So tell us a little bit about what you've seen is the impact on the family, the coping strategies for people that have someone diagnosed with dementia, maybe some behavioral strategies that can help to optimize the home situation or functioning for that person, their loved one. Tell us a little bit about that impact and any tips that you have for communicating with that person that you love that is suffering from dementia.

Dr Ahsan Naseem: I realized the value of that question because it is imperative that we understand that dementia affects not just the patient. It affects everyone around them. So it affects their employer just as much as it affects their loved ones, their children, their spouses.

I think a very important factor to keep in mind is that the initial apprehension that children in particular, an easy example of folks who care about a dementia patient, I think the first apprehension that they start to experience when they start noticing the signs of decline are important. They know their parents better than almost anyone else. And if they are noticing that there is something that is making me apprehensive about my mother or father, then I should trust the fact that there must be a reason for it. This just wouldn't happen sporadically.

The first step that I would recommend is that they scheduled an appointment with their parent's primary care provider. And the reason for that is simple because primary care providers have a longstanding relationship with all of us. And they have seen us over time. So when these subtle changes start to be identified by family members, then a primary care provider might be able to detect it much faster, much more sensitively, rather than someone who doesn't know the patient, such as a specialist like myself or a neurologist. So primary care providers would be able to also assess that, yes, this is different how the patient is presenting. And then of course, a workup plan can be initiated, which does require more comprehensive assessments.

I think family members have to be prepared once they are told of the diagnosis as much as they can be prepared in a sense that the more educated they are about dementia, the better. I think all of us try our best to educate family members of what the patient is going to go through and what they can anticipate, starting with some simple compensatory things like setting up alarms on their smartphones and writing things out on the calendar and to-do lists, which are written in big bold letters so nobody can ignore them, all the way down to preparing to place a parent in assisted living or in a nursing home or even a memory care unit. So the more aware they are, the less, I think, of a shock effect the illness has, and it doesn't jar them as much as the initial diagnosis can if it just simply comes out of the blue and they have no further information.

I would also strongly recommend that family members place a high priority on their own self-care, particularly those family members who are caregivers to make sure that they're taking care of their own health, balancing things out as best as possible. So that it's more of an organized approach rather than an emotional reaction of doing everything that they can for their parent. So delegating some of that work, looking at community resources and then making sure that their involvement is the most effective, not just the most present in their parent's care. I think that would perhaps be the most methodical way of dealing with it.

Melanie Cole (Host): Wow. That's great advice. And as somebody who has dealt with this, I hear what you're saying and they need support and you can't just go on emotions. You really have to understand and be educated. One of the things, Dr. Naseem, and we don't have a lot of time left, but one of the things that I think a lot of caregivers go through and I've gone through it myself is guilt. We struggle with this guilt about whether we are doing enough, whether we should not be putting them in memory care, whether there's something more we can do to help them get better. You know, there's all these feelings that go with this.

As a behavioral health expert that you are, how can we deal with this guilt? And as we wrap up, I'd like you to speak about that stress that the caregivers deal with, the impact on the family and how we deal with all of the emotions we're feeling while we really just want to help our loved ones.

Dr Ahsan Naseem: Absolutely. I think it would be imperative and extremely important for caregivers to recognize that it's a clinical problem that requires a clinical approach. And the more that the caregiver can communicate openly with providers who are taking care of their parents, the better. That way, you get direction directly from the clinical team and not essentially coming up with tentative solutions on your own. Relying on that direction I think is important because hopefully it instills some sense of satisfaction that I'm doing everything that the clinician is asking me to do for my loved one.

I think it also creates a level of moderation, because please know that particularly in early stages of dementia, a patient can perform many of the tasks, they just need small amounts of assistance. Hence, the diagnosis should not translate into immediately the caregivers taking over everything for the care of the patient. So getting guidance from the clinical team would be the most effective way of preventing any misperception that might come up leading to a sense of guilt that I'm not doing enough. Whereas the clinician might say, "No, you're doing everything I'm asking you to do. Your mother or father does not need any more than this, of what you are providing at this point. But let's get ready for what might happen when the dementia becomes more severe. Let's have a game plan in place, so that it doesn't hit us suddenly." And again, it would be a much more manageable, methodical approach of pursuing that.

So collaborating with clinical team members, I think would be the best way of preventing any misunderstandings which might come up. It's emotionally a very heavy situation in any case. And the example that you gave of placement again is easier to tolerate when you have been discussing it, when you have been planning for it and preparing for it, including with the patient. So it becomes less of a sudden shock and setback, and it becomes more in the line of managing a chronic illness, which is progressive, and we are doing the best we can to keep our loved well looked after.

Melanie Cole (Host): We certainly are. And thank you so much for joining us today and sharing your expertise on the impact that dementia has on families, because it can be quite devastating. And you've given us a lot to think about today. And I want to thank our Bryan Foundation partner, Lockton. Please visit our website at bryanhealth.org for more information or to get connected with one of our providers.

That concludes this episode of Bryan Health podcast. Always remember to subscribe, rate, and review this podcast and all the other Bryan Health podcasts. Thanks so much for listening. I'm Melanie Cole.