As a neuropsychologist, I am frequently tasked with explaining to patients and their family members that they have Alzheimer’s disease. If you’ve never heard of my job, basically I perform tests to determine if someone is showing memory loss or other cognitive impairment. By examining the pattern of their performance along with other tests done by their doctors, I can help diagnose various conditions including dementia conditions like Alzheimer’s disease.
Most weeks, I end up telling one or more patients that they may have Alzheimer’s disease. During these meetings, there are a few common questions that I get:
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What can we do about this?
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How long do I have?
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What comes next?
If you have ever had personal experience with Alzheimer’s disease, you may already know the answers to these questions. They aren’t pretty.
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There is currently no cure for Alzheimer’s disease. The available treatments can sometimes increase quality of life or hold off the progression of some symptoms for a while, but they don’t necessarily change the “end point” of the disease.
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The life expectancy for someone diagnosed with Alzheimer’s can range widely, especially if they are in good physical health with comprehensive caretaking. However, the average is somewhere around 5-8 years.
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Describing what comes next is probably the hardest thing for patients to hear. In my experience, many people are not scared at the prospect of dying. They are scared about becoming a burden and losing their dignity. The truth is that the later stages of Alzheimer’s are horrible. People inevitably lose their ability to drive safely. They begin to have trouble adequately communicating. And eventually, basic skills like chewing and swallowing start to break down.
So, how the hell do you begin to explain this to folks? There is no perfect way, but I think that I tend to do a pretty good job of it. More often than not, I have families and the patients themselves thanking me sincerely and feeling good that they finally have some answers at the end of a feedback appointment. Let me share some tips.
Involve the Person
This tip will depend on the person’s level of functioning. If you are seeing someone who is already past the point where they can intelligibly communicate, you are obviously going to be more focused on transmitting information to the family or caregivers. However, you can still look at them when you describe symptoms or testing results. Rather than saying, “She had severe impairment on verbal memory tests,” you can say, “We did a few tests looking at your memory, and these gave you a hard time.”
I also like to try to involve the patient in how to approach the conversation. They may not be interested in the nitty gritty of the assessments and instead want you to cut to the chase. In other situations, they want to hear about their strengths and weaknesses because they are curious about their performance. Describing how you usually approach the conversation and asking the person if they have any preferences can go a long way toward making them feel involved in the process.
Get Consent
As I mentioned above, sometimes family members or the patients themselves ask some really heavy questions. Before diving into the gory details, I like to ask the patient if it is okay to be straightforward and honest. For me, this often sounds like, “Yeah, that’s a good question. Well, let me ask you, Mr. Jones. Is this okay to talk about in front of you? Do you want me to be straightforward about it?” Rarely do patients say “no” to this question, but I still think it helps them feel a sense of ownership over the flow of information. And if they do prefer that you avoid talking about a specific subject, you can always respect their decision in the moment and find a way to convey the information at another time, if necessary.
Be a Real Human
This is heavy stuff! It makes such a difference when you do what you can to humanize yourself. Ask about what has been going on since you last saw them. Make sure you are sitting eye to eye with them. Apologize that you aren’t able to give them better news and admit that you wish it wasn’t the case. Just be a real person. Don’t hide behind clinical jargon or vague language.
It’s also important to give space for reactions. If someone seems surprised or emotional, let them have the time to digest what you are telling them. If they start crying, get them some tissue and tell them to take their time because you know it’s hard to hear. Even if your schedule is slammed, don’t act like you are in a rush. Spending a few extra minutes with someone in such a vulnerable state can be very impactful.
Offer to Spend Solo Time
When you are delivering results and information to multiple people such as a patient, their spouse, and their child, it can sometimes be helpful to offer for any of them to speak to you one-on-one. Children of the patient may have questions that they know will upset their parent like how to stop them from driving or when they should consider assisted living. Patients themselves may want to hear the hard facts about their future without needing to soften it for their spouse. Whatever the case may be, if the situation affords it, I love to tell folks that, “I’m happy to also meet with anyone here individually after we are done to address specific questions or concerns.”
Be Firm About Some Things
When you are an empathetic person in a caring profession, it can be tempting to hedge around difficult topics because you don’t want to cause the person pain. However, sometimes there are things that must be said and that you need to be very clear about. For example, I sometimes have to be more firm than I would like to with family members who do not seem to be grasping the severity of the situation.
Recently, I had feedback with a patient that had moderate Alzheimer’s disease who lived on their own. Their son felt like this arrangement was still acceptable, so I told him, “I want to be clear. Someone with this level of impairment should not be living completely on their own.”
Other times, it’s about telling the patient themselves about the limitations that they unfortunately need to accept. Driving is often a huge issue. It’s very symbolic of independence and not being able to drive is such a limiting factor for many people. However, in some cases, I need to be very straightforward about it and say, “I know that it’s not what you want to hear and I wish it weren’t the case, but I don’t think that you should be driving anymore. It’s not that you’ve forgotten how to drive. It’s that the changes in your brain are going to make it unsafe at some point, and we really don’t want you out on the road on the day that happens.”
Set the Stage
I find that by framing the difficult information as something the person has a right to hear, they tend to feel more accepting and grateful for what you end up telling them. Simply saying, “I just want to make sure I give you all of the information because this is your life we are talking about. You have the right to understand what is happening,” can be extremely effective. You can also call out the fact that these kinds of conversations are difficult, and you wish there were a perfect way to convey the information. This goes back to being human and real with people. They deserve it.
By integrating some of these tips, you can turn a scary and isolating conversation into one that is productive and empowering. You don’t have to offer solutions to be reassuring. People will appreciate the honesty and humanity of your approach. People are used to doctors and people in authority positions shrugging them off. It may sound silly, but just making a little bit more of an effort can make a huge difference.
Translating to Other Situations
My tips here were focused around what I encounter in my own career, but I think they hold up in other circumstances as well. I’m going to share a personal example here and talk about a miscarriage, so feel free to skip below if that’s a sensitive area for you.
Before we had our first child, my wife had a miscarriage. It was one of those a where there was no dramatic evidence, but she intuitively new something was off. She turned out to be right. We went to the hospital to get her an exam and ultrasound to check on things. And I’m so glad that I was there with her because the doctor had the absolute worst bedside manner.
My wife was lying down and I was sitting next to her. The doctor came in and did not even sit down. He stood over us and said something to the effect of, “The fetus stopped growing at about X weeks.” Then he sort of just stood their awkwardly while my wife bawled her eyes out and irrationally apologized for what happened.
If I were in that doctor’s position, integrating some of the tips I shared above, here’s how I would have handled it. I would have first sat down and got on the same eye level. I would have said that I unfortunately do not have good news. When the mother started crying, I would have grabbed some tissues and told her that I am sorry and that she can take as much time as she needs. When the sobbing faded, I would ask how much she would like to know about what happened before just diving into the clinical details. If she wanted to hear about the mechanisms and biology behind the miscarriage, I’d provide those details and explain that it’s exceptionally common. That she doesn’t need to feel as though she did something wrong. I would be clear about the next medical steps and what she can expect in the aftermath. And finally, I’d ask if she wanted any additional information about the outlook for further attempts at having a child at that moment or if it would be better to follow up later on down the line.
If you are ever in a position to deliver devastating news like this, I hope that some of these tips help you out. There are always ways to try a little harder to be real and be human. Give the person some ownership of their situation and respect their dignity. There’s no perfect way to deliver bad news, but some ways are certainly better than others.
