End-of-Life Dementia Conversations: Their Importance and How to Have Them

Dementia is one of the most overwhelming conditions that we face. Not only is a loved one dying, but they seem to disappear before our eyes. Familiar aspects of their personality shift and change, to the point that it can sometimes feel like they’re a complete stranger. 

Because the condition is scary, we often avoid talking about it. Or thinking about it. Because of this, end-of-life dementia conversations sometimes don’t happen at all. Or, they happen far too late. 

Even after a dementia diagnosis, family members skirt sometimes around the topic of the disease, often trying to remain as positive as possible. There can also be varying degrees of acceptance and different approaches to the condition, which makes things even more difficult. 

Some family members may want to delve into the facts – learning as much as they can about disease progression, possible treatments, decisions to be made, and related fields. Others may want to focus on the moment instead, loving the dementia sufferer as they are and enjoying what is left, for as long as they can. 

While focusing on the moment can be the easiest approach emotionally, it doesn’t prepare anyone for the future. In fact, avoiding end-of-life dementia conversations can sometimes have very negative impacts.

So, let’s talk about why that’s the case and how you can have those conversations. 

Why End-of-Life Dementia Conversations are Crucial

There’s a Limited Window

With many diseases, the patient remains mentally capable throughout, so they’re able to make their desires known at every step. 

This isn’t the case with dementia. 

Dementia gradually decreases the senior’s ability to think, reason, and make decisions. 

Notably, this isn’t something they can easily recognize as it is occurring. 

This means that conversations about future care need to occur early, before the disease impacts the senior too much. This is tough, for everyone. It can feel too early for such conversations and there’s a temptation to put them off for as long as possible. 

But, the changes dementia causes often aren’t predictable and they can sneak up on you quickly. If the conversations are left for too long, the dementia patient might not be able to participate in them at all. 

Care Decisions Are Difficult

This theme comes up repeatedly in memoirs, posts, and even movies – dementia involves some overwhelmingly difficult decisions. 

These decisions are often difficult in the practical sense. For example, “when should mom stop driving?”, “is dad safe on his own?”. 

Others are overwhelming from an emotional perspective. 

Both factors come into play for some decisions – like moving a  dementia patient into a memory care facility or whether to keep sending a senior back to the hospital for an infection. 

The best approach is to have the conversations early. To really think and talk about what is best – and when – before the situation occurs. 

Doing so doesn’t make things easy, but some of the stress is lifted. More than this, the decisions are tough enough on their own. They’re even worse when you’re dealing with overwhelming emotions and ongoing drama at the same time. 

The System Can Railroad You

Here’s another interesting thing. 

The American healthcare system defaults to aggressive treatment for health conditions. Many healthcare professionals have this orientation as well. 

Only recently has education shifted to focusing more heavily on conversations about death and when it is best to let go, rather than keeping patients alive at all costs. Those educational shifts haven’t yet translated into dramatic changes in how dementia patients are treated. 

So, if you want to focus on quality of life. If you want to stop treatment for conditions like UTIs and infections such treatment istoo overwhelming for the patient – you’re going to need to fight for those goals. 

Doing so is much easier if you understand what you’re looking for before having conversations with healthcare professionals. 

It’s Easy to Get Lost

This theme comes up in a variety of dementia-related books. 

Because dementia progresses gradually, full-time caregivers can get caught up in the day-to-day decisions and challenges. When this happens, it’s easy to miss the progression of the disease. 

Indeed, things can easily be much worse than you recognize.

Often the best signal is the reaction of a family member when they visit after a few months. 

Not recognizing changes in ability impedes a caregiver’s ability to make wise decisions about when care needs to be different. This issue is addressed in-depth in the book Making Tough Decisions About End-of-Life Care in Dementia and was also shown in a different way in the book Where the Light Gets In (reviewed here) by Kimberly Williams-Paisley.  

In that memoir, Kimberly talked about her father becoming snowed under in the caregiver role – giving his all to try and care for his wife, even when he risked killing himself in the process. 

This is a serious issue, as caregivers can burn themselves out. Their role also leads to a higher risk of serious physical and mental health issues. 

Having dementia conversations ahead of time allows you to plan and think about when you’ll make particular changes – like moving the loved one to a facility or looking for paid help. Such decisions reduce the risk that you’ll miss key changes.

End-of-Life Dementia Conversations are for the Whole Family 

Here’s another crucial point – end-of-life dementia conversations are important for everyone (not just the person with dementia). 

This is easy to miss. After all, dementia conversations often focus on the care your loved one wants when they’re no longer able to care for themselves. 

However, the conversations and decisions that come from them affect the rest of the family too. 

An excellent example comes from the book Where the Light Gets In. In it, Kimberly mentions that her mother once said she didn’t want her husband to care for her. However, she only told one daughter this information and gave no extra details, making her exact wishes difficult to understand – especially as her husband wanted to provide care. 

And, as Kimberly pointed out, not knowing made everything much more difficult. 

You still need to make challenging decisions in the late stages of dementia. But, knowing your parent’s wishes reduces the emotional weight considerably. 

The conversations about dementia may also help to get the family on the same page. This reduces the risk of sibling conflicts later on, especially if there are value disagreements. 

The Difficulties of These Conversations

It’s easy to understand why end-of-life dementia conversations are crucial. So, why do so many families have these late or barely have them at all? 

The simple answer is that it’s hard to talk about death. 

Some cultures do it well. We don’t. 

Death is a topic we try to avoid as much as possible. When we do have the conversations, they’re often stilted and difficult, so we don’t get very far with them. 

Conversations about dementia are often even more challenging – because it’s not just death we’re talking about. The person we knew often seems to disappear before they die. There’s also fear about what it means for a person to apparently lose the very essence of who they are. 

Dementia Often Isn’t Seen As Fatal

There’s another issue at play too, the way we see dementia. 

Most of the time, dementia is talked about as a degenerative neurological disease. The focus is strongly on the way that the disease changes how people think and their experience of the world. 

Dementia is fatal, but most of our conversations don’t focus on that fact. 

In fact, “does dementia kill you?” is a surprisingly common question. It seems that many family members know little about the progression of dementia, which does make some kind of sense. After all, it’s a rough topic to delve into, especially if a family member has just been diagnosed. 

Dementia Patients Find The Topic Hard Too

Another factor is the person diagnosed with dementia themselves. 

The idea of not just dying but losing your sense of self is pretty terrifying. Some people find it easiest to push the idea out of their minds, to refuse to talk about it or address it for as long as possible. 

The book Where the Light Gets In offers a good example of this. In the memoir, Kimberly Williams-Paisley talks about her mother’s dementia diagnosis and the journey the family went on. 

One big challenge was that there were few conversations on future care when her mother was capable of having them. Because of this, the kids and their father struggled to make care decisions, wondering what Kimberly’s mother would have wanted. 

How to Talk About End-of-Life 

The first step to having end-of-life dementia conversations is to recognize their importance and set aside time (which is true for pretty much any difficult conversation). 

Don’t simply wait and hope that the topic will come up naturally. You’ll need to be proactive instead. 

Look For a Conversation Guide

Guides can be incredibly helpful for stepping you through difficult conversations. 

Not only do such guides give you a direction to head in, but many can also make conversations less overwhelming and more manageable. 

A particularly interesting approach is called Death over Dinner. It is very literally what the name suggests – conversations about death that are held over dinner. 

Well, that’s a simplistic description, as part of the goal is also to make the experience engaging, uplifting, and empowering. Sound like a tall order? You can check out the video below for more details about what to expect. 

Another approach is The Conversation Project. This includes a conversation guide, along with related guides, like one for choosing a healthcare proxy and another for being a healthcare proxy.  

While neither of these approaches focuses on dementia specifically, their frameworks are incredibly useful and can be applied to many conversation types. 

Check Out the Book Making Tough Decisions

Making Tough Decisions About End-of-Life Care in Dementia isn’t as well-known as other dementia books, so it’s easily overlooked. 

As the name suggests, this book focuses on the difficult decisions about dementia care, particularly in the end stages. It’s helpful for three reasons. 

First, you do need a sense of how the condition will progress and what to expect. Without this, you don’t know which conversations need to be had or the best timing for them. 

Making Tough Decisions is excellent in this regard. It offers details on the different stages of dementia, what may happen, and the decisions that will need to be made towards the end.

Second, the book addresses the emotions involved. This includes talking about how different family members may feel and ways to find common ground. 

A particularly interesting part here highlights the way that values can drive different perspectives about what should and shouldn’t be done in a particular situation. The author also provides advice about how to approach your own values and those of other people, in order to move forward graciously. 

Finally, Making Tough Decisions does provide specific advice about having conversations about dementia. That includes references to the resources we’ve already talked about, along with a variety of other ideas. 

Do Some Planning

While you can’t plan out every aspect of a conversation, you can think about the main themes you want to cover. This often involves researching important topics you hope to cover, such as what happens when the patient can no longer safely be on their own. 

Some other important considerations include: 

• Who is going to be present? Ideally, there should be three people – yourself, the family member with dementia, and one other. This way there’s a witness to your loved one’s wishes. If not, you may want to record the conversation or get something down in writing. 
• What day and time? Focus on times when everyone has plenty of energy, like late morning or early afternoon – and days where there aren’t any other big commitments or drama.   
• Where will you have the conversation? These conversations normally need to be held somewhere that’s safe and also private. 
• Are there legal considerations? Dementia decisions do often have legal implications, especially if you’re making decisions for someone else. It’s often best to talk to a lawyer, particularly one who specializes in dementia, to identify any areas you need to consider. 

Make It As Easy As Possible

End-of-life dementia conversations are always going to carry some sting. But, you can take steps to make them as easy as possible. 

• Be gentle and compassionate (to them and yourself). Dementia conversations are hard. They’ll often kick up a huge range of emotions in you and your loved one, so take things as gently as you can. 
• Be willing to stop as needed. Hitting all the important points in a single conversation is unrealistic. You’ll often need to have multiple conversations, each building on the previous. It’s also worth stopping whenever the conversation gets too much for one participant. Doing so may be frustrating, but it’s much better than not having the conversation at all. 
• Remember that people have different values. Difficult conversations can easily turn into a battle of wits, where each person is trying to convince the other. It’s important to take a step back from this. Focus on common ground instead and remember that a person’s values aren’t necessarily wrong because they’re different than yours. 
• Feel it out. Pay attention to what they say, to their body language, and to other non-verbal cues. This will give you the best sense of how the conversation is going and what else is needed. 

Final Thoughts

There’s much more we could say about end-of-life dementia conversations. But, there is one simple message in all of this – the conversations are essential. 

The more you talk about the future, the better prepared you are. There’s often less stress too, as you at least know what your loved one wants. 

As for how you have the conversations, planning is important, as is being gentle and compassionate. You will also need to feel them out as you go. Every person and every family is different, so the best approaches in the conversation will vary as well.