Q: My mother is 76 and has Alzheimer’s disease. She had a couple of unavoidable stays last year in the hospital (due to falls). This accelerated her decline due to delirium, which was treated as if she was just being an unruly and difficult patient. Once my sister and I understood what was going on due to this site’s information, we have been able to protect and support her.
Right now things are stable and quiet, so we are trying to plan ahead.
How should we go about planning for the years of decline my mother may experience before her actual last moments near death? It’s hard to imagine this possibility and I need help facing the (to me) not so obvious.
We have a will, power of attorney, and health care proxy in place.
A: Great question, and especially good that you’re taking advantage of a “quiet period” to address these issues.
It’s a little tricky to answer this question without knowing more about your mother’s current ability to participate in decision-making and in planning for her future care.
Since you say she’s declined after hospitalizations for falls and delirium, let me assume that she has moderate Alzheimer’s and can’t manage more than perhaps expressing some of what she likes and doesn’t like. (For more on the stages of Alzheimer’s and related dementias, see here.)
At this point, you’ve been through some health crises already, and you’ve seen her decline. You’ve also probably gotten a sense of just how many decisions have to be made on her behalf. Some are about her medical care and some are about other aspects of her life, like where she lives and how she spends her days.
Planning ahead is an excellent idea. Obviously, it’s simply not possible to anticipate and plan for every decision that will come up.
But let me offer you an approach that you can use both now as well as “in the heat of the moment” when specific issues arise. This is a framework to help you navigate all kinds of care decisions and future crises that you may encounter.
The following five steps will give you a foundation for anticipating, processing, and reacting to the complications and problems of later-stage Alzheimer’s, with less anxiety and more confidence. These steps are:
- Be aware of what kinds of declines and crises to expect, as your mother’s Alzheimer’s and other health conditions progress
- Think about what she would want, and what your family would want for her
- Consider and discuss goals of care with your health care providers
- Learn to use a benefits-and-burdens framework to navigate particular decisions
- Consider when and how you might dial back on “usual” medical care
Let me now explain each of these in a little more detail. By the end, you should be able to see how they will help you navigate your mother’s continued decline.
1. How to get a sense of what kinds of declines and crises to expect
You’ll be ahead of the curve, and better able to make informed and realistic decisions along the way if you have an understanding of three things:
- The basics of how dementia progresses
- What kinds of problems and crises might come up due to other chronic conditions your aging parent has
- Typical problems and health crises often come up for people with dementia
Learning the basics of how dementia progresses.
If you haven’t already done so, you should become familiar with the broad trajectory of how people decline due to Alzheimer’s and related conditions.
I outline the stages here: How to Understand the Stages of Alzheimer’s & Related Dementias. You can also learn more about the progression of dementia by reading books, reading articles, or connecting with other dementia caregivers.
It’s especially important to pay some attention to what happens in the late-stage of dementia, and how people die from dementia. Honestly, most people find it sad and upsetting to learn about this, so many avoid it. You don’t have to think about this every day, but by having peeked ahead and focused on it at least once, you’ll be able to draw on that knowledge when important decisions have to be made.
A research study found that when people viewed videos of people with advanced dementia, they subsequently made different choices on their advance care planning documents.
I also highly recommend discussing this with your mother’s usual doctor. Just ask, “What kind of decline and problems should we expect, as my mother’s Alzheimer’s progresses?” This is a good way to let the doctor know you’re interested in being proactive and in planning.
Learning what to expect from other chronic conditions.
Many people with dementia are also living with other chronic conditions. Some of these may be quite likely to cause health crises, or may even be likely to kill a person before the Alzheimer’s reaches its most advanced stage.
For instance, heart failure and chronic obstructive pulmonary disease are two common chronic conditions that often cause hospitalization. They can even cause breathing problems that might require the use of a ventilator (a breathing machine).
To learn what crises to expect from other chronic conditions, start by asking your mother’s usual doctors to help you understand the state of her other chronic conditions. Then you can ask something like, “Do you think this is likely to cause a hospitalization or health crisis in the coming year? What kinds of problems or declines should we anticipate?”
Other problems and crises that often come up for people with Alzheimer’s.
Most families realize that Alzheimer’s always features a progressive loss of abilities. But beyond that, it’s helpful to think through what types of crises and dilemmas this often sparks.
In short, you’ll want to be aware of situations that are likely to prompt difficult decisions about medical treatment or a care arrangement.
Below is a list of situations that come to my mind for mild and moderate Alzheimer’s.These are common events that tend to spark a significant change in health status or care arrangement.
For each of these, you can ask yourself, “Have we thought about how we’d manage when — or if — this comes up?”
- Increased difficulty managing at home (especially for people who live alone or with an older spouse)
- Increased need for supervision, assistance, and care
- Injury due to falling or a safety problem in the home
- Financial mismanagement or abuse
- Hospitalization (this is often associated with complications, a difficult rehab stay, and/or a significant step down in health status)
- Inability to continue with current care and living arrangement (this can be due to caregiver burnout, financial issues, safety issues, etc.)
Don’t worry too much if you haven’t yet thought through all these potential issues. You actually don’t want to get too deep into considering these, until you’ve gone through the other steps I’m going to describe. For now, the goal is to be aware of some of the issues you’re most likely to run into, and assess where you’re at in planning for them.
2. How to consider what your parent with Alzheimer’s would want
When faced with making decisions on behalf of someone with Alzheimer’s, who has lost the capacity to make the decision, you’ll want to ask yourself: “What would Mom (or Dad, or my partner) want?”
To answer that question, you’ll need to do the following:
- Review any existing living wills, advance directives, POLST forms, or other documentation that’s been completed by your parent.
- Consider your mother’s values and preferences regarding medical and life care, based on what you know of her. Use a specially designed conversation guide, if possible.
- You might be able to invite her to express preferences to you, if she’s able to do so and if it doesn’t cause her too much distress.
Reviewing existing advance directives and other documentation
In an ideal world, every older adult would go through an “advance care planning” process and specify some preferences in writing, before becoming too disabled by Alzheimer’s disease.
For more on how older adults should address advance care planning, see 5 Tips to Help You With End-of-Life Planning.
By the way, you said you have a will but it wasn’t clear to me if this was a “living will,” which is a type of advance directive that provides some guidance regarding a person’s preferences for care before she dies. (A “last will and testament” type document spells out what a person wants after she dies.)
Considering your mother’s preferences and values
Even if you already have an advance directive or living will available, I recommend going through a questionnaire that will help you think about your mother’s preferences and values.
One free online questionnaire is here: Conversation Starter Kit for Families and Loved Ones of People with Alzheimer’s Disease or Other Forms of Dementia.
I especially like the questions on page 11, which are intended for the caregivers of a person no longer able to make decisions (i.e. beyond mild Alzheimer’s). They include questions such as:
- Would she worry about not getting enough care? Or that she would get overly aggressive care?
- Would she be okay with spending her last days in the hospital? Or would she really want to spend her last days at home?
- Would she want us to take care of all her needs ourselves, or would she want us to get some help from professionals?
- Would she prefer to be alone most of the time? Or would she prefer to be surrounded by loved ones?
- If we had to list the three most important things she wanted us to know about her wishes for end-of-life care, what would they be?
- What was she especially concerned about?
- What was really, really important to her?
- What kinds of treatment would she want (or not want)?
Another question that I think is useful for you to consider: At what point would she want us to back off from life-prolonging care?
Now, you will probably find that it is hard to come up with exact answers to these questions. That’s ok! Just spending time mulling them over and talking with other family members will help you lay that foundation, I promise. You can also return to these kinds of questions when you’re in the midst of a situation involving decision-making.
Now, if your mother had previously completed an advance directive, you may be wondering if you need to bother going through these questions a second time.
I would say yes. In my experience, the information contained in most advance directives isn’t detailed enough to provide the foundation and guidance that dementia caregivers need.
Furthermore, a key part of the advance care planning process is to re-assess preferences and plans regularly, because people’s preferences often evolve as their health and life situation changes.
Given that a person with Alzheimer’s eventually loses the mental capacities needed to do this reassessment on her own, reviewing advance care plans becomes yet another thing that family caregivers and health-care proxies must take on.
As a surrogate, you won’t be able to change past documents. But you will need to provide guidance to your older parent’s doctors. Furthermore, in many states, certain forms specifying preferences for medical care, such as POLST (Physician Orders for Life-Sustaining Care), can be completed and revised by surrogate decision-makers. (Learn more POLST, which is also called MOLST or MOST in some states, here: POLST: Resources & Tips on Avoiding Pitfalls.)
In short, whether or not you have an advance directive available, part of your planning process should involve going through some questions designed to help you remember and crystalize your parent’s preferences and values.
3. How to consider and discuss “goals of care”
Understanding “goals of care”
“Goals of care” is a phrase that’s widely used by health professionals, but hasn’t yet caught on with the public. This is perhaps because many health experts seem to prefer to phrase more like “Talk about what matters most with your doctor.”
Myself, I explain “goals of care” to my patients and their families, because once they understand the idea, I find it becomes easier for us to revise the care plan, and also to navigate tricky situations.
So what are goals of care, and what does it mean to discuss them?
To begin with, it’s helpful to remember that medical care generally serves to help all people with three key goals:
- To live longer. We do this by intervening when there is a life-threatening emergency, by operating or using life-support technologies or even by providing antibiotics and specialized medications. We also do this by managing chronic conditions, to prevent them from progressing or causing hospitalizations. And then we do this by using preventive strategies, to reduce a person’s risk of dying or experiencing a life-threatening event such as a heart attack or stroke.
- To feel better. This means helping people address pain, shortness of breath, depression, anxiety, or any other issue that might cause distress.
- To function better. This means helping people maintain or improve their ability to do things, so that they can keep participating as fully as possible in life. This includes helping people walk and stay mobile, as well as helping a person with dementia have the best brain function possible.
Ideally, medical care helps people with all three of these goals, because all three are usually quite important to people.
But in reality, medical care often involves making trade-offs. For instance, people often accept the side-effects of chemotherapy (which can include pain and disability), in order to have a chance to cure their cancer and live longer.
When people have Alzheimer’s disease, it becomes more and more common for the three goals to come into conflict with each other. For example, hospitalization might be the best way to minimize a person’s chance of dying during an illness, but it also often causes significant distress to a person with dementia. Furthermore, people with dementia have a high risk of developing delirium in the hospital, which can set their brain function back considerably.
In geriatrics, we routinely discuss goals of care with patients and families. We do this because as people get older, whether it’s due to Alzheimer’s or due to other health issues, it becomes impossible to prioritize all three goals equally.
And so, we invite our patients and families to tell us how important each of the three goals is to them, and which they would prioritize, if there were a conflict.
By understanding how important each goal is to a patient, or to a family, we’re then better able to tailor medical care, so that people get what they need the most from it.
How to sort out goals of care
You can certainly do some preliminary thinking on your own, when it comes to goals of care. But don’t try to figure it all out without involving your doctors.
Instead, it’s best to let the doctors know that you want to discuss goals of care for your mother. Even doctors who aren’t trained in geriatrics or palliative care will understand what you are referring to, and if they don’t feel comfortable guiding you through this conversation, they should be able to refer you to a clinician who can.
When you discuss goals of care with your medical team, here are a few more things to keep in mind:
- It’s okay if you’re not initially sure which goals to prioritize. Sometimes it’s hard to decide, or it just takes a while for clarity to emerge.
- It is normal for goals to change over time. Circumstances change. The health situation evolves. Or you may decide to adjust the goals of care after trying one approach to goals and realizing that it no longer feels like a good fit.
- Feel free to bring up goals that don’t seem strictly “medical” or health-related. For instance, your family might realize that a key goal is to keep your mother living at home as long as possible, if you think that’s her preference or that’s what’s best for her quality of life. Your healthcare team should hear about this goal, as this will help them guide you through considering any trade-offs related to the goals of medical care.
4. How to use a benefits-and-burdens framework to navigate particular decisions
Along with understanding preferences and having broad goals of care, there’s an additional way you can hone in on a course of action in specific situations. Basically, it involves asking two key questions:
1.”Do the likely benefits of taking this path (which could be a starting or continuing a medication, proceeding with a hospitalization, or doing a procedure, etc.) outweigh the burdens and risks of doing this?”
2.“Would proceeding this way be in line with the person’s goals of care, and is this likely to help the person achieve their health goals?”
Geriatricians routinely rely on this helpful “benefits-versus-burdens” framework to help families navigate medical dilemmas, difficult decisions, or otherwise explore their options.
The main reason that we do this is that when it comes to many medical interventions, as an older person’s health declines, the likelihood of benefit goes down and the likelihood of harm goes up. So for instance, surgery and hospitalizations become riskier when people are frailer, or have dementia.
You can also use the benefits-and-burdens framework to work through non-medical dilemmas, such as whether to continue with a given caregiving situation versus make a change.
Start by identifying your available options for managing a situation, or even just taking a next step in addressing it.
Then, for each option, make a list of the “benefits” and the “burdens.” (You can also think of them as the “pros” and “cons.”)
Bear in mind that when it comes to figuring out the downsides of a certain course of action, you’ll want to consider two kinds of negatives. “Definite burdens” are the downsides that are pretty certain to happen. Whereas “risks” are bad things that may or may not happen in the future.
So for instance, if you move your mother with dementia into memory care, the usual “definite burdens” are that she’ll be distressed by the transition and that the care arrangement will cost more money. Whereas the “risks,” meaning the bad things that may or may not happen, are often that she might never get used to it, or that the facility might turn out to be lousy.
These are some of the tradeoffs you would be making, in exchange for certain likely benefits. If you’re moving your mother from a home caregiving situation to memory care, the benefit will be relief from many of the hands-on caregiving duties, which can be immensely helpful, especially if you’ve been providing care for a while and are starting to feel burned out. Moving to memory care can also mean more opportunities for social engagement and access to activities designed to engage people with dementia.
Going through the benefits and burdens doesn’t always yield a clear and easy answer. But almost everyone feels better having clarified what trade-offs they are making and why, when they decide to proceed — or not proceed — with a certain intervention, or a certain care plan.
5. Consider when and how you might dial back on “usual” medical care
By “usual” medical care, I mean the healthcare that’s commonly provided to older adults, regardless of whether or not they have dementia or are declining.
As you may have noticed, “usual” medical care tends to be quite oriented towards addressing the goal of helping people live as long as possible. This is done by intervening when people are acutely ill, and by using the emergency room, hospitalization, or even intensive care, in order to minimize the chance of a person dying. It also means providing chronic medical care and preventive care, again with a key goal being to minimize mortality risk.
This kind of care may sound good to you; it’s what most of us expect from our modern medical system. But in fact, it’s worth rethinking when it comes to an older person declining from dementia.
Why? Because when people are declining from dementia – or if they otherwise have limited life-expectancy – usual medical care becomes less likely to help them live longer, or better. It also becomes more likely to cause confusion, distress, and medical complications.
Furthermore, usual medical care can crowd out, or directly conflict, with approaches that help people with dementia maintain the best possible quality of life and function. When given the opportunity, most families of people with moderate and advanced dementia eventually decide to prioritize the goals of well being and function – helping a loved one be comfortable, out of pain, and able to enjoy companionship and the small pleasures of everyday life to the best of their ability – over the goal of extended lifespan whatever the cost.
For these reasons, it’s quite reasonable to consider when and how you might ask about dialing back “usual” medical care as Alzheimer’s progresses.
Just don’t expect the doctors to bring this up on their own. Although some of them will, most of them will keep providing the default “usual” medical care unless you ask them to discuss other possibilities with you.
Here are some questions families may want to discuss with their doctors:
- When to stop cancer screenings? This means tests such as mammograms, colonoscopies, and so forth. Even in people who aren’t declining from dementia, cancer screenings tend to be beneficial only in those who are likely to live another 5-10 years. So in most cases, people with dementia are unlikely to benefit. (Remember: A screening test technically means the person is not having symptoms. How to evaluate a person with Alzheimer’s who does have symptoms concerning for cancer is a different issue.)
- When to dial back the intensity of chronic disease care? This might mean not pursuing tight blood sugar control for diabetics, or aggressive blood pressure lowering for people with hypertension. Such medical care is designed to minimize the risk of dying or developing serious complications from a chronic condition. Again, these approaches are most likely to benefit people who don’t have a life-limiting condition. In people with Alzheimer’s, it often reasonable to adopt a more moderate approach. This usually means working to keep the chronic condition from spinning out of control or causing uncomfortable symptoms, but perhaps not pursuing those extra efforts to “optimize” the condition and minimize the chances of it progressing. (Optimizing a chronic condition often requires a patient and family to do more work or take more medication.)
- Whether or not (and how much) to investigate certain symptoms further? If a simple blood test might confirm a condition that’s easily treatable, like an infection for example, and that treatment would improve comfort and functioning, the answer might be yes. If it were an invasive test for a disease with invasive treatment, like a biopsying a lung nodule for possible cancer, on the other hand, the answer might be no, since a person with dementia is likely to have a hard time with a surgery or chemotherapy to treat lung cancer.
- When to minimize or avoid hospitalization? At some point for most people with dementia, hospitalization often provides only a small chance of improving function or wellbeing, at the cost of significant distress and a high risk of complications. For these reasons, it often makes sense to try to avoid hospitalizations. Of course in some situations, hospitalization will still make sense, such as for hip fracture, which is a painful and disabling condition that is very hard to manage without a hospital stay.
- When to use or forego certain burdensome treatments? Is using an IV to treat dehydration likely to be successful if the patient wouldn’t find it too upsetting? One person might accept it; another might forget why it’s there and need to be strapped down, causing upset. What about treatments that are more invasive or intensive?
- When to use or forego even minimally burdensome treatments? Treating pain, constipation, and other distressing symptoms is always important. But in the very last stage of dementia, treating something like a urinary tract infection with oral antibiotics may not yield any improvement in function or comfort, or even offer meaningful improvement in lifespan. Medications for dementia symptoms (Aricept, Exelon, Namenda) are another example of treatment that may be moot at this point or even much earlier. Forgoing even simple treatments like oral antibiotics is most commonly done when people are on hospice, but when given the option, some families choose this for a loved one who doesn’t yet qualify for hospice care.
(For more on when people with Alzheimer’s may be eligible for hospice care, I have a related article here: Hospice in Dementia.)
Of course, families often find it difficult to consider these questions of scaling back care. If nothing else, it’s often a sobering reminder that their loved one is declining, and will eventually die.
Doctors often find it hard to address this too, which is part of why it’s so common for people with dementia to go on getting “usual care” – I call it “riding the medical merry-go-round” — well past the point at which the likely benefits are being dwarfed by the burdens and risks.
Still, caregivers tell me that it’s often a relief to realize that perhaps all that usual care isn’t necessary, and that in fact, it’s often possible to improve quality of life and wellbeing by scaling back some forms of medical care.
The key, once again, is to start by discussing goals of care with your usual healthcare providers. Then when certain medical interventions come up, you can ask, “How likely is this to help us with our goals, which are to prioritize function?” (Or comfort, or remaining at home as long as possible, or staying as alive as long as possible; you basically repeat whatever your family has decided are the highest priority goals.)
For any specific form of care, or even for an entire category of medical care, you can also ask the doctors to help you understand the likely benefits and burdens, given your mother’s current state of health.
In this way, you’ll find that it’s possible to request and advocate for medical care that is more likely to help your declining mom, and less likely to put her through distress when there’s little chance of benefit.
Putting it all together
Let’s recap, because I’ve covered a lot of ground. The five steps again were:
- Get a sense of what kinds of declines, crises, and difficult decisions to expect, as your mother’s Alzheimer’s and other health conditions progress
- Consider what she would want, and what your family would want for her
- Consider and discuss goals of care with your health care providers
- Learn to use a benefits-and-burdens framework to navigate particular decisions
- Consider when and how you might dial back on “usual” medical care
Each of these can take you a while to work through. You’ll need to gather information. There will be many people to talk to: other close family members, your mother’s usual doctors, perhaps even a second opinion from a geriatrician or palliative care specialist, depending on how things go with the usual doctors.
You’ll need time to reflect, and to process what you find out and how you feel. You’ll also perhaps try one approach for a while, and see how it feels.
In general, working through this process requires at least a few “cycles” (or “iterations”) of thinking and talking things through, spread out over some time. That’s because these are complicated messy topics that have lots of pieces to consider, and these issues bring up difficult emotions. Going through cycles of thinking about things gives people some time to gather up various bits of information, and also digest the information and their own emotions.
You will also need to periodically revisit some – or even all – of these steps, because your mother’s situation will evolve, as will yours, to a certain extent.
Please don’t give up if this seems overwhelming. Work on this, with your sister and your mother’s doctors, a little bit at a time. Return to these ideas when you are facing a difficult decision, or if you get the nagging feeling that maybe your mom’s healthcare isn’t being quite as helpful as you’d hoped.
Every time you think through one or more of these steps, you are adding to that foundation I referred to at the beginning. You are creating and strengthening a foundation that will provide you with support and guidance in making decisions for your mom.
Most decisions you make on her behalf will never feel easy. They will all involve trade-offs, and some uncertainty, and perhaps even a little sorrow.
But they can be less stressful, and you almost certainly can make her life better. This means less anguish for you, and more positive energy to put towards whatever time you have left with your mom.
Remember, you can start using the five steps of this navigational tool at any point and revisit them over and over. They’re just as useful once you’re in crisis mode. That’s the beauty of it; this way of navigating the difficult decisions of dementia care provides real, constructive help at any time.
But starting your thinking now, before there is a crisis? That’s a gift both to your mother and yourself. Good luck, and let us know how it goes.
This article benefitted immeasurably from suggestions and edits by Paula Spencer Scott, my former Caring.com editor and the author of Surviving Alzheimer’s: Practical tips and soul-saving wisdom for caregivers. (Which is another great resource if you’re caring for someone with dementia; revised edition coming out in early 2018!)