Dr. Brent Forester (00:01):
I don't think we're taught in medical school or even in our training about the importance of seeing the whole family, especially the caregiver as part of the patients that you're dealing with. One of the reasons why I've become passionate about the care of this illness is because it really involves the patients and their loved ones, and it becomes a family journey. It's a family disease, and if you care for only the patient and not the caregiver, you will not help the patient. If we can't help you take care of yourself, you won't be around to care for your loved one.
Introduction (00:31):
Welcome to BrainStorm by UsAgainstAlzheimer's, a patient center, nonprofit organization. Your host, Merrill Comer, is a co-founder, 24 year caregiver and Emmy Award-winning journalist and the author of the New York Times bestseller, Slow Dancing With a Stranger.
Meryl Comer (00:48):
This is BrainStorm and I'm Meryl Comer. If you're facing the challenges of caring for a parent with dementia who's confused, angry, or resistant to your help, no, you're not alone. Then ask anyone who's tried to support a loved one with dementia and behavioral issues when they needed to be hospitalized and they'll tell you it's a nightmare. Joining us is Dr. Brent Forester, psychiatrist in chief and chairman of the Department of Psychiatry at Tufts Medical Center and Director of Behavioral Health for Tufts Medicine. His book, the Complete Family Guide to Dementia, everything You Need to Know to Help Your Parent and Yourself. Dr. Forrester, thank you so much for joining us.
Dr. Brent Forester (01:32):
Thank you, Meryl.
Meryl Comer (01:33):
In a recent article in a Boston Business Journal, you were quoted as saying that hospitals must prepare for a flood of mental health and dementia patients. In coming years now, hospital systems are already in crisis with nursing shortages and patients in families left to fend for themselves. How bad is that?
Dr. Brent Forester (01:53):
Well, right now, Meryl, we're facing an unprecedented challenge of an increasing prevalence of mental health conditions in our society, and a lot of that was highlighted by the impact of the pandemic over the past four years. Now, when you look at the data on which demographic was impacted the most by the effects of the pandemic, what you'll notice is that the rates of anxiety, depression, and trauma related disorders in the younger population of ages 18 to 25 or adolescents through the age of 25 was the highest by far in the 50 to 60% range. Interestingly, older adults, 65 and above had by far the lowest rates of those same conditions, and a lot of us have wondered why. And having worked in the fields of geriatric psychiatry for the past quarter century plus, I am not at all surprised because older adults have developed wisdom over the years and they've also have a fair amount of resiliency having lived through trauma and stress and other challenges in their life, and they've learned how to cope.
Dr. Brent Forester (02:53):
So in some ways, ironically because the pandemic from a physical standpoint, it impacted the risk of getting covid and dying from covid much greater in older adults, their mental health impact was relatively less with the exception of a few groups. And one of those groups I think were people with dementia and their caregivers. And I think what happened there was that there was both a biological and probably a social reason why people with dementia were getting covid at higher rates and were dying at higher rates than older adults without dementia and their caregivers who are already burdened by the impact, this devastating impact of this illness on their own quality of life and their own health. It was also exacerbated by the loneliness and the disconnection from the other resources that they may otherwise have at their disposal.
Meryl Comer (03:37):
As an expert in geriatric psychiatry, in your opinion, have hospitals ever been adequately prepared to manage dementia patients who often are cycled through the emergency room?
Dr. Brent Forester (03:49):
Well, Meryl, right now in the United States, we're seeing essentially the very beginning of what some call the epidemic of Alzheimer's disease in related dementias. The primary reason for that is we're all living longer, and that's the number one reason for getting dementia beyond genes and family history, and it's really how long we live. And so as the baby boomers start to age beyond 65 in a very rapid way over the next number of years, we're going to see an increase in numbers from about 6.7 million to nearly 15 million over the next 25 years. In hospital settings, especially the acute care setting in the emergency room is the last place someone with dementia wants to be. And partly it's because people who are working in those settings are extraordinarily busy with a lot of acute care responsibilities. And the problems that people with dementia are bringing to the table, if you will, in addition to their infection or their fracture or whatever may be going on, is an inability to really understand the world around them.
Dr. Brent Forester (04:44):
And the management of older people is much more complicated when they have seven or eight medical problems, 12 or 14 medications, and their brain is so susceptible to the adverse effects of intervention medically as well as of a very disturbing, chaotic and hectic environment that is the emergency room. We know that people with dementia do best with routine and calm and with significant others, with familiar and the emergency rooms or the hospital settings or anything. But the state of Massachusetts interestingly passed legislation in 2018 that included many calls to action, but one of the requirements was for each hospital system to develop an Alzheimer's operational plan to address the assessment and the management of people with dementia in the acute care settings. Unfortunately, we don't have a lot of resources to support the implementation of that. Some systems have started to do that and others have not, but it really requires a coordinated effort with lots of disciplines involved to really educate the healthcare workforce about this population that has really such unique needs.
Meryl Comer (05:48):
Even if you're a healthy and of sound mind, if you don't have an advocate with you in a hospital environment today, you are really on your own and compound that with someone with dementia and you really have to be there. They're pulling out their IV tubes, they don't understand the environment, and as you said, move them out of a familiar environment and of, of course, it triggers all the behavioral issues that really compound the problem. In your book, you say that with the right skills, you can keep a loved one with dementia, safe and manage difficult behaviors. As someone who's cared for both my husband and my mother over 24 years, I'll admit I really just made it up as I went along.
Dr. Brent Forester (06:30):
First of all, if you think about dementia, the three major symptom domains of dementia are cognition, memory loss, let's say impairment in day-to-day functioning like someone has a hard time dressing, bathing, grooming themselves, feeding themselves, et cetera. But the third domain is behavior and other psychological symptoms of dementia. And by that we mean anxiety and depression, physical and verbal agitation or even aggression or paranoia and hallucinations. Those behavioral symptoms that really run a gamut right of almost every imaginable psychiatric symptom one could have are the rule, not the exception. In dementia over the course of someone's illness, which could be a couple decades long, as you well know, when they suffer from dementia, almost every single person will exhibit some one or more of those symptoms. Though they could be mild or they could be severe, but no matter what, those symptoms determine their outcome.
Dr. Brent Forester (07:21):
They determine their outcome in terms of how long they live, how well they live, how safe they live, and also they determine the impact on their loved one who's caring for them or loved ones or other caregivers. We know that people with dementia are in hospital settings or in long-term care settings because of the impact of these behavioral symptoms. It's not the memory loss that drives institutional care placement, it's the severity of these behavioral symptoms. And yet this is one of the most understudied areas in all of the dementia world, but a lot of times it's often an afterthought unless there's an acute crisis. So when we talk about this in our book, we talk about this concept of being proactive and not reactive, right? Because once you've got an agitated person on your hands, physical aggression, trying to throw something at you, wandering into the street in the middle of the night, then anything goes right, you don't want to get there, right?
Dr. Brent Forester (08:13):
When we talk about sort of managing this, we think about the non-medication management principles that are more behavioral in nature and have to do with the environment and the way you talk to someone in approach them, and also the medication or pharmacological interventions. But no matter what, and this is the most important point that I often stress to my colleagues in medicine, when someone with dementia is anxious or agitated or frustrated or depressed, we have to figure out why. If we don't know why, if we don't know what's driving it, we'll come up with a treatment plan that will definitely not work. The why could be the chaotic environment. The why could be the time of day. The why could be the progression of the illness. The why could be a urine infection or covid or a blood sugar abnormality or a medication side effect, or somebody with a long history of a psychiatric problem that now happens to have a recurrent episode. And until we figure out the why we are lost in terms of treatment.
Meryl Comer (09:07):
Dr. Forrester, you say these behaviors come up across the continuum of the disease because people are often misdiagnosed for years. They often exhibit degrees of agitation as they fight to maintain control. Shouldn't that type of agitation be a focus as well?
Dr. Brent Forester (09:25):
So in that space of we know this person is not who they used to be, and now we know what the problem is because we've made a diagnosis, that's the space you're talking about. And that is a very common challenging time of the illness. And frankly, it's rare that someone goes through normal to dementia without having some period of people don’t know what's going on. Or maybe someone suspects it, but the workup hasn't happened because there's so many things, and I'm sure as a caregiver you experience this that prevent accurate diagnosis. It could be denial or lack of awareness on the part of the person with the illness, which is very common. Not because they're trying to minimize something, but they just are having changes to their brain that actually impair insight. There could be a whole host of reasons for that. Then there's the denial on the part of the caregiver because they're like, well, I don't want to disrupt what I know so well, which is our loving relationship and our life, and maybe the person still working and that's another headache, more than a headache to deal with.
Dr. Brent Forester (10:23):
And then there's the clinician or clinicians who also may not realize what's going on because they're either not trained to manage dementia, or if they are and the person doesn't fit into a neat box, they may not notice really what's going on for a while. So that space is a common problem that we have. And the agitation could reflect all sorts of things. It could reflect brain changes from the disease itself. It could reflect anxiety and depression, which is a very common manifestation of dementia in the earliest stages. Sometimes it's that tip of the iceberg before we know there's a neurocognitive disorder, we see the mild behavioral symptoms of anxiety and depression, which aren't really that mild often and sometimes lead to agitation. So it comes back to the same point I made. We've gotta figure out together with our partners who are the loved ones and the people with the illnesses, what's driving that agitation?
Meryl Comer (11:12):
Doctor, I've always said that the caregiver, the keeper of the secret, because at one level you're trying to protect a loved one's dignity and keep life as normal as possible, even as things are imploding around you. And for those patients in denial, it's even harder. I used to type up my observations and hand them to the doctor and to my husband out of respect. What's your advice to caregivers in those early stages in communicating concerns to doctors without insulting a loved one?
Dr. Brent Forester (11:43):
So this brings up so many different issues, Meryl, that you're really talking about right now. What you just mentioned is the doctor. Well, if you're relying only on a doctor to help you through this journey of dementia care, that's completely insufficient. When I see patients and their loved ones in any setting, whether it's in a long-term care assisted living or a nursing home, but especially when they're still living at home with their loved ones, and I just see the person with dementia and their caregiver without anyone else, and I have no other team, I'm really working with my hands tied behind my back. There are things that I can do and things that I just can't do either because I don't have the knowledge and the skills or the time. And one of the members of this team that I think is critical is some type of dementia care manager, almost like either a social worker, it could be a non-clinician, but someone who understands the basics of dementia care and can guide the family through the journey.
Dr. Brent Forester (12:30):
The first thing I thought about in what you were saying is who's on the team? The second is the way in which you communicate. You are the keeper of the secret. When I see somebody now with dementia who can't communicate with me, if I don't speak to the caregiver, I have no idea what's going on, right? I can assess the patient, but I don't know the full story. I don't know when this started, the progression, the impact, et cetera. So I think having that written information is invaluable to me as a clinician, but it's not sufficient to just tell me about it. I need other members of the team to help execute what the plan's going to be. We can't put it all on your shoulders as the caregiver. There's no way, first of all, you might have other things you're doing in your life. Second of all, the emotional burden is so great. And third, it's going to impact your physical health if you're taking all of the burden.
Meryl Comer (13:12):
You know, you talk about documenting what's wrong. I also documented when things went well. In fact, I had him so well characterized because we would try to replicate positive reactions to maintain his quality of life at home. So the reality is I was slow dancing with a stranger and working to keep things as stable as possible one day at a time. And I really don't think that's unusual when it comes to taking care of a loved one with Alzheimer's. And as a caregiver, I think we too often suffer in silence and remain stoic. So doctor, I'm afraid you have two patients in for a consult and you only have time for one.
Dr. Brent Forester (13:53):
That could not be more true, Meryl, and I don't think we're taught that in medical school or even in our training about the importance of seeing the whole family, especially the caregiver as part of the patients that you're dealing with. One of the reasons why I've become passionate about the care of this illness is because it really involves the patients and their loved ones. And it becomes a family journey. It's a family disease. It's not like having cancer or like having any other disease or heart disease. It starts slowly insidiously. There are barriers to diagnosis, and then it's not accepted and it's stigmatized. And if you care for only the patient and not the caregiver, you will not help the patient. And frankly, I've said this many times to the loved ones of my patients, if we can't help you take care of yourself, you won't be around to care for your loved one. But I've seen it over and over again where the loved one dies. First, you talked about trauma related to caregivers. I think caregiving for somebody with dementia is an independent risk factor for the development of psychiatric illness like PTSD, depression and anxiety, and also for death. It's an independent risk factor for bad outcomes from other medical problems,
Meryl Comer (15:01):
I'm afraid. I agree, doctor, and I'm glad I'm still standing. Our guest has been Dr. Brent Forrester, psychiatrist in chief and chairman of the Department of Psychiatry at Tufts Medical Center and Director of Behavioral Health for Tufts Medicine. His book, the Complete Family Guide to Dementia, everything you Need to Know to help your Parent and Yourself.
Meryl Comer (15:27):
In Part two, we focus on what we can do for people with dementia, and he offers advice to caregivers on how to work smarter, not harder. That's it. For this edition, I'm Meryl Comer. Thank you for brainstorming with us. Our team is on a mission to help you stay up with the latest scientific breakthroughs from new therapies to technologies on early diagnosis and personal brain health advice from well-known experts using an equity lens that promotes brain health for all. Now, we'd like to hear what's on your mind, what are the topics in guests you'd like to hear featured on? BrainStorm? Send your comments to Brainstorm@usagainstalzheimers.org.
Speaker 2 (16:12):
Support for BrainStorm by UsAgainstAlzheimer's comes from Otsuka and Lundbeck. Subscribe to brainstorm on your favorite podcast platform and join us on the first and third Tuesday of every month.