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Interviewer: It's a conversation we're not used to having or starting. I'm talking about planning for end-of-life care, and if you are planning for end-of-life care because of a diagnosis with Alzheimer's or other sort of dementia, it becomes even more complicated whether it's for yourself, or whether it's a loved one that has that diagnosis.

End-of-Life Planning After Parkinson's Disease or Dementia Diagnosis

So to help out with that process, we're talking to . She's in the Gerontology Interdisciplinary Program in the Ï㽶ÊÓƵ of Utah Health College of Nursing. And her research team has developed this thing called "The LEAD Guide," which stands for Life-Planning in Early Alzheimer's and Dementia. So everybody should have an end-of-life care plan. But from what I understand, if you have Alzheimer's or some sort of dementia, that end-of-life care plan is going to look a little different. Explain why that is.

Kara: There's more of a time crunch in a broader context within Alzheimer's disease or other types of dementia where there is a limited window where you're able to engage in your family member with dementia and learn about their preferences and wishes before they get too cognitively impaired where they're no longer able to have those conversations.

Interviewer: Wow. So after the diagnosis comes in and you find out that maybe a loved one or even yourself has dementia, how soon should that conversation start?

Kara: The earlier the better. It shows that you have better care outcomes as far as having your medical decisions match your preferences if you have those discussions and document it. You're less likely to be hospitalized if you don't want to be. You're less likely to be shuttled in between nursing homes and hospitals and rehab facilities. And it's a better outcome for the people making the decisions for you because they don't have the burden of trying to guess what mom would want.

The LEAD Guide

Interviewer: When it comes to advanced care planning, I thought this was interesting. I tend to always think of just medical preferences, like this is what I want medically done or not done. But it goes beyond that. And "The LEAD Guide" is based on what you call value-based decisions. Explain what that means.

Kara: Yeah. So sometimes just checking a box of whether you want a ventilator or not doesn't give you the full context of end-of-life values and preferences. And in dementia, in particular, someone may be physically very healthy but lack decision-making abilities. And so you need to make decisions about if they need long-term care, is that going to happen in the home? Is it going to happen in assisted living, a nursing home? You needed to decide where their location of death is going to be, because with dementia people live on average 8 years after diagnosis, but they can live up to 20 years. And so there's a lot of care decisions and medical decisions that need to take place within that long death trajectory.

Interviewer: So this can be a tough discussion to have. So I guess I'm thinking from the perspective of maybe a family member wanting to bring it up after that diagnosis. Are there other reasons why it's just really important to have that discussion? Again, it's not a discussion we're used to having.

The Importance of End-of-Life Planning

Kara: Right. Not a discussion you're used to having, and I think just knowing that your window is limited puts the time pressure on having these discussions within a context of progressive dementia. And I like to frame it with families as it is beneficial for the person with dementia and the family members to have this discussion for two reasons.

One, the person with dementia has the comfort and peace knowing that they were able to communicate what they want currently and then also what they want when they have advanced dementia. That might differ. They may want something different today versus five years from now when they're in a nursing home. And so being able to communicate that can bring a lot of peace and comfort to the individual.

And then also, family members can approach it as, "Do me a favor. I want to carry out your values and preferences, but I need to have this conversation with you in order to do that." And that would relieve a lot of burden or guilt or disagreements among family members. So it's really a service to the family to have this conversation.

Interviewer: I was surprised to see in the research that you and your team did to make this guide that, for some people, the emotional burden can last months or even years, the caregiver emotional burden.

Kara: Right. If you're in a situation where you really don't know what your husband or partner wants, or mom or dad and you have to, it's an acute situation in the hospital and you have to make a decision, you may question whether you made the right decision for years. There might be a lot of lingering guilt and stress of not knowing.

Difference Between Advanced Directive and End-of-Life Planning

Interviewer: Yeah. So I'm looking through the guide here. What I really like about it is it seems pretty simple. And this is a point where I want to say this does not replace, if I understand correctly, an advanced directive. This is not an advanced directive. This works with.

Kara: Right. This is a supplemental guide that's not legally binding, but it provides additional information about a patient's values and preferences and some of those questions that are unique to dementia, like location of long-term care and preference for location of death.

Interviewer: It starts out with a little checklist of the end-of-life documentation that you should have, which is great because that can get confusing. So I like that. And then when you start getting into some of these end-of-life value questions, I found this fascinating because I think we put ourselves in the situation by not having these conversations. Like the very first question, I'm concerned about being a financial burden to my family or close friends. For my mom, like I would spend the money to continue to make her live if that's what she wanted. But then how often is there a disconnect that that's not actually what the person wants?

Kara: Right. And so a lot of these questions here about values, they help inform decisions. So if you know that your mom is really concerned about being a financial burden, then that will help you make decisions about her care in the future. And the same with being an emotional burden or a physical burden. You know, if your mom's really concerned about burdening you physically with day-to-day care tasks, then maybe that makes you feel a little more comfortable about placing her in a 24-hour skilled-care facility when that time comes, knowing that that's your mom's value.

Benefits of End-of-Life Planning

Interviewer: Have you seen this actually in action?

Kara: Yes. So we have . . . A part of the process of developing this guide, we held multiple focus groups with healthy adults, caregivers of people with dementia, and people with early dementia themselves. And the feedback we got was very valuable about, "Wow, this is great. I hadn't thought about this." Or, "I never knew mom cared so much about not dying at home." So it really raised a lot of questions that they hadn't discussed before.

Interviewer: Yeah, that's fantastic. Is there anything else that we need to talk about this? I think this is such a fantastic tool, especially for somebody . . . You know, I know what we need to talk about. We need to talk about somebody with dementia, not only just the deterioration after the diagnosis, but end-of-life wishes tend to be different for patients that know that they're going to have dementia versus maybe somebody that knows that they're going to have cancer.

Kara: The dementia preferences were different from those other ones as far as not wanting medical treatment interventions in a situation of dementia versus cancer. And then, having a preference not necessarily to die at home, being more comfortable dying in a nursing home or at the hospital. And so a lot of the qualitative data that we got showed that the loss of sense of self, of independence, of memory really defines quality of life. And people didn't want to extend that type of life in general.

Interviewer: Understood. My last question is this is such a great tool. Is it something that anybody could use for planning end-of-life, even if it wasn't Alzheimer's or dementia? Because I know it was specifically designed for that, but could it be used for other cases as well?

Kara: Of course. So people may lose the ability to make decisions at the end of life for a variety of reasons, due to other medical conditions, head trauma. So you can use this guide to help with any sort of advanced care planning. It's just meant to facilitate the conversation.

updated: April 29, 2022
originally published: May 13, 2020