Providing Care for a Person With Agitation in Alzheimer Disease: Resources and Education
In this podcast, Leslie Citrome, MD, MPH, talks about resources and strategies of care that caregivers of people with agitation in Alzheimer disease can implement. He talks about how caregivers can be supported by clinicians and what tools can be provided to them to ensure that they are providing the best care to the individual experiencing agitation in Alzheimer disease.
For more agitation in Alzheimer disease content, visit the Disease State Hub.
TRANSCRIPTION:
Please note that the transcript has been edited for clarity.
Jessica Ganga: Hello everyone and welcome to another installment of Podcast360, your go-to resource for medical education and clinical updates. I'm your moderator, Jessica Ganga, with Consultant360, a multidisciplinary medical information network.
Dr Leslie Citrome is joining us today to discuss helpful resources and support strategies for caregivers of people with Alzheimer disease and agitation—a common symptom of the disease and that can worsen over time. Thank you for being on the podcast today, Dr Citrome. Please introduce yourself to the audience.
Leslie Citrome, MD: Hello, my name is Dr Leslie Citrome. I am a psychiatrist currently based in Rockland County, New York. I am a clinical professor of psychiatry and behavioral sciences at New York Medical College in Valhalla, NY. I have been in active practice for a long time. Most of that was spent running an inpatient research and evaluation unit for the New York State Office of Mental Health where we did research in psychosis, cognition, as well as aggression.
Jessica Ganga: Thank you, Dr Citrome. Can you please start us off by talking about agitation in Alzheimer disease? How does this affect the individual with Alzheimer disease?
Dr Citrome: First, agitation with Alzheimer disease is very common. In fact, Alzheimer disease itself is very common. It's the most common of all of the dementias.
Every family is affected by Alzheimer’s disease, one way or another. It can be a parent, spouse, sibling, aunt, uncle, maybe a neighbor, but no one is left untouched from knowledge about Alzheimer disease and what it can do to an individual person. Unfortunately, about half of the people with Alzheimer disease do become agitated to the point where it can be a problem at home, and if left unmanaged, can lead to further escalation and ultimately institutionalization because the family cannot cope with someone who's too agitated at home. It is a very difficult problem.
Jessica Ganga: What are some strategies of care for a person with agitation in Alzheimer disease?
Dr Citrome: Well, the first thing a person should do if their loved one has been diagnosed with Alzheimer disease is to seek additional information and support from the Alzheimer's Association. Their website site is alz.org. They have a plethora of educational materials and access to support networks, which is really very helpful. People who have a family member with Alzheimer disease are not alone, and they do not have to struggle alone, and there are resources to help them.
In terms of managing someone at home with Alzheimer disease, it is really important to make it as easy as possible for that individual to be oriented and aware of their surroundings. That means adequate lighting; get rid of those shadows which may be misinterpreted. It means orienting someone to time and date. So having a large calendar clock is very useful. You can find them on Amazon. These are clocks that have the day of the week, the time, everything you would need to be oriented. It is also helpful to remind people where they are, who they are, who you are, as things progress. So, keeping someone oriented is important. Also, keeping the area free of clutter is important. And also, excess noise should be avoided. Soothing music can be very helpful. And having a routine in place as much as possible, can go a long way.
If someone does become agitated, it may be because they are asked to do something they do not quite understand. They are being given a demand to do something they do not quite understand. Now, it could be as simple as, “it's time to eat” or “it's time to bathe” or “it's time to take your medication.” And having an approach that is reassuring and supportive when you encounter rejection of care is important.
Rejection of care can be a huge problem, especially if the behavior escalates to physical aggression, for example, pushing, biting, scratching. We can all deal with some occasional profanity, but when it is excessive, it is very disturbing. If it happens, let's say, on a trip to the supermarket or to the mall, well, then that's the end of those trips.
So, it is important to try to dial down the degree of agitation. That means being able to decrease the intensity and frequency of these agitated behaviors. These behaviors may be verbal, they may be physical. Verbal agitation may not necessarily be aggressive. They may be repeating the same thing over and over again. It is not particularly aggressive, but it is very annoying. And if you do not understand where it is coming from, you may react to it in a way that is not therapeutic. So, this is where the Alzheimer's Association comes in, in terms of providing education on what to expect when your loved one becomes agitated, what could happen, and what could be done in terms of strategies at home regarding this.
Medications will need to be considered and no doubt that a person with Alzheimer disease is already on other medications. Older people generally have a variety of comorbidities, whether it be hypertension, diabetes, asthma, arthritis, or GERD, you name it, they are probably on medications for that. They are also probably on something that is hopefully going to decrease the rate of cognitive decline. So, they may be on specific drugs for Alzheimer disease, which are approved by the FDA for that purpose.
But yet, they still become agitated. And yet, despite all the behavioral interventions, the psychological interventions, all well described in materials from the Alzheimer's Association, they still are agitated, then a medication approach designed to target the agitation may be necessary.
Jessica Ganga: For clinicians, how can they inform caregivers on how to properly take care of patients with agitation? And what are some key education points that they can share?
Dr Citrome: So ordinarily, those clinicians who see people with Alzheimer disease are usually well equipped with knowledge regarding what advice to give. The offices that I have visited, often have an ample supply of pamphlets and other written materials available for their patients and families. They also may have access to other resources. I recall, in the past, I would give out videotapes, and then I would give out CD-ROMs, and then I would give out DVDs, and now I give a link to a YouTube video.
It is often best to get internet resources recommended by the clinician rather than suggesting that the individual surfs the web on their own. The Alzheimer's Association has plenty of education materials on their website and I feel comfortable recommending that to patients.
Jessica Ganga: What actions can caregivers take to support themselves in their role? And the second question is, what can other people do better to support caregivers so they can provide the best care that they can?
Dr Citrome: Well, you raise a very important point that it's not just the patient that ends up suffering. Obviously, their loved ones also. And it has been quantified that people who take care of people with Alzheimer disease have a difficult time, whether it be with anxiety or depression, lost time from work or lost productivity at work. It is extremely stressful. So having a support system in place for family members and other caregivers is very, very important.
And again, I go back to the Alzheimer's Association as a good resource. There are chapters of various support groups in major metropolitan areas. I would urge people to take advantage of them and to get the reassurance that is available from knowing that one is not alone.
We have used this model extensively for schizophrenia with NAMI—National Alliance for the Mentally Ill—and for mood disorders with the DBSA—the Depression and Bipolar Support Alliance. So those are major mental disorders that have profound effects on the individual and their families, and there are resources available to help people there and focused on the caregiver. And that is really important.
Jessica Ganga: For clinicians, how can they provide support to caregivers if that's what they need?
Dr Citrome: I found that most patients and their families that I talk to when they first enter the care system are completely unaware of external resources. They have no idea. They have no idea of how common Alzheimer disease is. Maybe they had some notion about it. They did not realize exactly how common it is. And they had not been aware of the different approaches to treatment. And why would they be? They are not health care providers. They should not necessarily be expected to be knowledgeable, but they should expect to be informed once they go in for treatment.
If the individual who goes to their provider with their loved one is not satisfied with the amount of information that they are getting, they have to do some homework. But luckily today, it is fairly easy to get this done. It is not an obscure disease. It is not a rare disease. It is very, very common. And I do not think anyone will have any difficulty locating good resources to educate themselves about the disorder.
There is a new development in the scientific literature nowadays - not only do papers get published for clinicians and researchers, but they also get published with the public in mind. ”Plain Language Summaries “are now common and did not exist in the past. Plain language summaries are a good resource as they are written at a vocabulary level that the layperson can actually comprehend. It is not easy reading, but at least it's more accessible.
There is also plenty of other information from the support websites that put things in plain language, as well as resources from the federal government.
Jessica Ganga: So, are there resources for caregivers? And if so, how can they have access to them? So, I guess in addition to the Alzheimer’s Association, and are there any barriers to accessing these resources?
Dr Citrome: Generally not. So, I am looking right now at the Alzheimer's Association website. They have many tabs for caregiving, community, brain health, also a tab of “I have Alzheimer's.” These resources are interesting and educational. You can hear an expert talk about Alzheimer's. There is more information about assessing symptoms and seeking help with online tools. Also, for a variety of ethnic groups, there's specialty information there that will include what would be important for that particular group, including Asian Americans, Pacific Islanders, Hispanic Americans, Black Americans, and so on.
Bottom line, there is something for everyone at this Alzheimer's Association website. Now, I don't work for the Alzheimer's Association. I'm not paid by them, but I'm very grateful to them for having this available.
Jessica Ganga: Thank you, Dr Citrome. Is there anything else you would like to add?
Dr Citrome: Well, I hope in the future we will develop ways of identifying Alzheimer's earlier and have interventions that can stop or reverse the disease. Right now, we do not. We have some exciting new treatments, but they do not cure. So, we are still looking for that. And I encourage everyone to keep on top of this and encourage further research in this area.
Jessica Ganga: Well, thank you, Dr Citrome, for joining us today.
Dr Citrome: Well, you're welcome. It is a pleasure and hope to chat with you again.