Transcription:
Alzheimer's: Coping Strategies for Caregivers

Melanie Cole (Host): When your loved one is diagnosed with Alzheimer's disease, oftentimes it's the caregiver that needs a little extra help. My guest today, is Dr. G. Peter Gliebus. He's a Neurologist with Lourdes Health System and the Director of the Cognitive Disorders Center at Drexel Neurosciences Institute. Welcome to the show, Dr. Gliebus. What is the first thing you tell caregivers about the challenges that they're going to face -- or that they do face on a regular basis -- when dealing with somebody with dementia.

Dr. G. Peter Gliebus (Guest): Hi Melanie, thanks for having me. Well, probably one of the most important things is to make sure that the caregiver understands the disease, what is the disease about, what kind of changes they should expect, and what changes are normal expect – we can't use the word normal -- but expected for the disease and what changes are actually should be looked in as a positive – or it might not be necessarily related.

If we're talking specifically about the Alzheimer's disease, then you know the one thing for the caregiver to understand – because when they understand it, it's much easier to cope with it and to deal and find the solutions – how to deal with the situations. One thing to understand is that the memory is -- in the most typical cases, the memory impairment is a paramount impairment and the person will – the affected patient will have difficulty registering new information. They will be asking the same questions. They will be telling the same stories. As long as the caregiver understands that it's a part of the disease, part of the condition that will cause less stress for the caregiver when dealing with it and handling the situation.

The other thing to know that the majority of people with the Alzheimer's Disease will develop some kind of neuropsychiatric or psychiatric symptoms such as – it might be depression, it might be anxiety, or psychotic symptoms, agitation. The other very important thing to understand for the caregiver is that when people develop any dementing diseases, including the Alzheimer's disease with the disease progression, their ability to handle stress is decreasing. What they were able to handle six-months ago, a year ago – like a big party or something – that actually at this moment might be causing them more agitation, more aggression. When this understanding is in place that actually causes less stress for the caregiver because the caregiver then knows it's just a part of the disease.

Then, after going through overall explaining the disease and condition, we talk about what kind of changes to explain and how to handle them. For example, if somebody – frequently caregivers ask, "Do I – when somebody is not remembering something or remembering it wrong, do I correct them?" At the beginning of the condition, when it just starts progressing, yes, you can correct them, but if you see that every time you correct them it causes agitation, then probably not every correction is necessary unless we're dealing with some kind of safety situation.

Caregivers need to learn how to communicate with the affected people because their language function, their understanding of language, their overall understanding of the environment changes when the condition progresses. We teach them the communication skills that they need to use, the simple sentences they need to use. They need to look the caregiver in the eyes when they are talking. They have to make sure that they control their tone because when people start having difficulty understanding, they go by understanding the tone of the person who's speaking to them.

There are overall -- frequently, there are overall changes in the personality with people with the disease. The caregivers have to learn to first understand that any change of the personality is the disease rather than the person is really change. It's a difficult adjustment they have to make. The other very important thing to stress to the caregiver is that their loved one is sick and though they're caregiving, they have to take care of themselves. That is to make sure that their mental health and physical health needs are addressed because if they are not taking care of themselves, we might be in the situation where we might have two patients on our hands.

Melanie: What a great point about them learning about the disease. What do you tell them if they are frustrated or they find the person that's going through these changes a little bit scary or the person that they're dealing with gets angry easily? What do you tell them about dealing with those fears that they might have that this person could even possibly become violent or lash out at them – they don't mean to, but it could happen?

Dr. Gliebus: Yeah, it always depends on the degree of the fear and the degree of their anxiety. If it is something becoming out of control and the person is so preoccupied – that the caregiver's life becomes so preoccupied that they cannot actually live their life, then that might be an indication that they might need themselves some kind of mental health help. That doesn't happen frequently. The majority of people are able to handle situations fairly well.

Sometimes, just finding a person who is in a similar situation could help them. The health systems, the Alzheimer's Association, and many other associations also have caregiver support groups, which is significant – it helps significantly for the caregivers when they start talking to people who are in a similar situation and how to handle these situations. Obviously, if they are afraid of something, there is some possible aggressive behavior, then that needs to be addressed because we don't want to put neither patient nor the caregiver's safety into the – jeopardized.

Melanie: As things progress with the patient, what is the caregiver supposed to do about the impending situation and knowing what the outcome might be in that the situation might get worse or go on for a very long time? What do you tell them about looking toward the future and having hope?

Dr. Gliebus: When dealing with any of these progressive conditions including Alzheimer's Disease, one thing is we're trying to address – and again, I'm returning to the same thing – the safety issues to make sure that that is addressed at the moment, such as handling of the finance, handling of the medications, no driving, and similar. Now, when dealing in the future, that comes also explaining the condition for them to understand that the disease is progressive in the sense that the person will not improve. It just continues slowly to worsen. Even at the very beginning of the disease, we start talking about long-term planning. Every caregiver is different. What is their preference and what are the possibilities?

Frequently, also the decision is being made based on the finances, but if it is only a solo caregiver, they'll have to think whether at some point they will need to either bring help home to help them – and that is another very important point is accepting help and asking for help – or they will need to change the place they are living where there is more help available. We always encourage to start thinking about that early in order not to make rash decisions in case if it becomes an emergency situation.

Melanie: What are some signs or symptoms of caregiver stress? If you're dealing with the patient's caregiver and you sense some red flags, Dr. Gliebus, what are you looking for in that caregiver that says to you, "It's time that you do get a support system or that you look at these things?"

Dr. Gliebus: It's mostly are they able to handle a situation? If you see that they are becoming so over-stressed that they are becoming counterproductive, and for themselves, taking care of their needs and for the patient, that is the time when they either have to bring the help, or they have to find some other means of getting help. Many people – and the majority of human beings are proud human beings, and all our lives we are trying to be independent. We're trying to keep that independence while the patient also feels the same as the caregiver feels about this thing too. Sometimes it's difficult for the caregivers to really ask for help, but that is the first step for them to realize or for them to bring the facts on the table that yes, they need help.

Melanie: Wrap it up for us, with your best advice, if the caregiver is suffering from sleeplessness – maybe they're afraid that the patient is going to wander out of the house or fall or hurt themselves, so they're not getting a decent night's sleep because of their fear – wrap it up for us with your best advice for caregivers and dealing with the stress of caring for something that they love.

Dr. Gliebus: Dealing with the stress of caregiving, one thing, taking care of your own mental and physical well-being. Whether it is seeing the psychologist, whether it would be attending the caregiver support groups, yoga, meditation, visiting friends, having time off from the patient in order to regroup yourself.

And as well, make sure that all the physical health issues are resolved. Physical activity, exercises are very important because that helps our mood and helps our overall thinking clarity. If it is more specific to the sleep problem, we do sometimes suggest installing the door alarms and everything for the caregiver not to be that watchman where they have to wait and specifically be on the lookout to make sure nothing bad is happening.

Melanie: Thank you, so much for being with us today, Dr. Gliebus. It's important information for caregivers to hear. You're listening to Lourdes Health Talk, and for more information, you can go to LourdesNet.org, that's LourdesNet.org. This is Melanie Cole. Thanks, so much for listening.