A dementia diagnosis can bring a long list of questions. What will change? How quickly will it happen? What kind of help may be needed later?
It can also raise questions about future healthcare decisions. If there comes a time when you cannot make or communicate those decisions yourself, who would you want to speak for you? Would that person know what matters to you and what you would want?
Those conversations can be easy to put off while someone is still able to make their own decisions. With dementia, though, there is a reason to have them sooner rather than later.
A dementia diagnosis does not mean a person immediately loses the ability to make decisions. Someone in the early stages may still be able to express their wishes, choose who they trust to make healthcare decisions, and take an active role in conversations about future care. As dementia progresses, that ability will change.
An advance directive provides a way to put your wishes for future healthcare in writing. Creating one can also start conversations between the person with dementia, the people closest to them, and the person who may someday need to speak on their behalf.
That is why earlier planning matters. The goal is not simply to complete an advance directive. It is to give the person with dementia as much opportunity as possible to have a voice in decisions about their own future care.
Why Timing Matters With Dementia
The ability to make decisions can change as dementia progresses, which is one reason earlier planning can be valuable.
The Alzheimer’s Association explains that legal capacity involves a person’s ability to understand and appreciate the consequences of an action and make rational decisions. Its guidance also notes that the capacity required can depend on the particular legal document involved.
A person who can still understand their options and communicate what they want may be able to take an active role in planning for future care. Starting these conversations earlier gives them the opportunity to express those wishes themselves.
It also allows time to ask questions, think about different healthcare situations, choose a healthcare agent, and talk with that person about what matters. Those conversations can provide valuable guidance if someone else eventually needs to make healthcare decisions on their behalf.
An Advance Directive Can Put Wishes Into Words
An advance directive is not simply a document about whether someone wants medical treatment.
It can help answer more personal questions about care.
What does quality of life mean to you? Are there treatments you would or would not want in certain circumstances? Where would you prefer to receive care? Are there personal, cultural, or spiritual beliefs you would want others to consider?
These are some of the questions included in the Alzheimer’s Association’s end-of-life planning information. The resource encourages people to express their wishes while they can make decisions for themselves and to discuss those wishes with family members, the care team, or a legal professional.
Advance directives can include a living will and a healthcare power of attorney. A living will can record preferences about certain medical care. A healthcare power of attorney allows someone to name a person to make healthcare decisions if they can no longer make those decisions themselves.
For someone living with dementia, those documents can help put future wishes into words while the person can still take part in deciding what those words should say.
The Conversation Matters Along With the Document
Completing an advance directive is important. Talking about what it means is important too.
No document can anticipate every medical situation that might arise.
A healthcare agent may eventually face a decision that was never specifically addressed in writing. Knowing how the person thought about healthcare, comfort, independence, and quality of life can provide valuable context.
That is one reason the conversation should go beyond simply telling someone, “I named you as my healthcare agent.”
Talk about why you chose that person. Explain what matters to you. Discuss situations that worry you and the kinds of care you would want them to consider.
The first conversation does not need to answer every possible question. It can begin with what matters most.
What makes a good day? What abilities or activities are especially important? What does quality of life mean to you? Are there circumstances in which comfort would matter more to you than treatment aimed at extending life?
These conversations give a healthcare agent something a signature alone cannot provide: a better understanding of the person behind the instructions.
Earlier Conversations Can Reduce Guesswork Later
The Alzheimer’s Association makes a simple but important point in its end-of-life guidance: without these conversations and documents, family members may be left trying to determine what the person wanted.
Consider what that can mean in practice.
A family may face a medical decision for someone who can no longer clearly communicate a preference. One person may believe they know what their loved one would want. Another may remember a past conversation differently.
Both may be trying to do the right thing.
The difficulty is that they are being asked to make an important decision without clear guidance from the person at the center of it.
Earlier conversations cannot eliminate every difficult decision. Medical circumstances can be complicated, and an advance directive cannot predict every situation.
They can, however, give family members and a healthcare agent a clearer place to start.
For someone living with dementia, having those conversations while they can participate also provides an opportunity to explain why they feel a certain way. That understanding may become especially valuable if someone else eventually has to make a decision on their behalf.
Choosing Someone to Speak for You
Naming a healthcare agent deserves careful thought.
The right person is not necessarily the person who lives closest or the family member everyone assumes will take the role.
Think about who can listen to what you want and respect those wishes, even if that person might make a different choice for themselves.
A healthcare agent may also need to ask doctors questions, understand medical information, communicate with other family members, and make decisions during stressful circumstances.
Once you choose someone, talk to them.
Ask whether they are comfortable taking on the responsibility. Explain what you would want them to consider if they ever have to make a healthcare decision for you.
The conversation also gives that person an opportunity to ask questions. Something that seems perfectly clear today may be much harder to interpret during an actual medical situation.
Talk With Your Doctor About What Future Choices Could Mean
Some healthcare decisions are difficult to think about in the abstract.
The Alzheimer’s Association identifies several treatments that may become part of medical decision-making in late-stage Alzheimer’s disease. These include respirators, feeding tubes, IV hydration, antibiotics, CPR, and surgery.
A person does not need to wait until one of these decisions arises to ask questions about it.
The Alzheimer’s Association encourages people to discuss their wishes with their doctor, as well as with a spouse or care partner. These conversations can include what “quality of life” means to the person and the kinds of care they would want. It also recommends giving the doctor a copy of completed advance directives.
These conversations can make medical choices easier to understand.
Instead of simply asking, “Would I want a feeding tube?” or “Would I want CPR?” someone can ask what a particular treatment could mean in the context of advanced dementia.
That information can help the person make choices that reflect their own values rather than trying to answer a complicated medical question without context.
Planning Does Not Have to Happen in One Conversation
Talking about future healthcare can feel overwhelming, especially after a dementia diagnosis.
It does not have to happen all at once.
A first conversation might simply address who the person trusts to speak for them. Another might focus on what matters most in daily life. A discussion with a physician may raise new questions that the person wants to think about and discuss later.
The important part is creating opportunities for the person with dementia to participate.
The conversation can continue as questions arise. Preferences may become clearer. Family circumstances can change. The person selected as a healthcare agent may no longer be able to serve.
Returning to the conversation gives everyone another opportunity to understand what the person wants and why.
A Dementia Diagnosis Does Not Automatically Mean It Is Too Late
Families may worry that once someone receives a dementia diagnosis, the opportunity to complete an advance directive has already passed.
A diagnosis alone does not answer the question of legal capacity.
The Alzheimer’s Association’s legal planning guidance explains that capacity relates to whether someone can understand and appreciate the consequences of an action and make rational decisions. It also advises families to discuss questions about capacity with a legal professional.
Someone living with dementia may still be able to understand choices, express preferences, and participate in planning. At the same time, dementia is progressive, so it is important not to assume these conversations can always be put off until later.
That is the balance behind earlier planning.
It is not about taking decisions away from someone after a diagnosis. It is about giving that person an opportunity to make and communicate decisions for themselves while they are able to do so.
Giving the Person With Dementia a Voice in Future Care
Advance care planning is about more than preparing for a medical emergency.
It gives someone an opportunity to say what matters to them and to help the people closest to them understand those wishes.
For a person living with dementia, that opportunity can become increasingly important as the disease progresses.
Start with a conversation. Talk about who should make healthcare decisions if that becomes necessary. Discuss what makes life meaningful. Ask questions about medical care that could become relevant. Put important wishes in writing while the person can participate in the process.
Dementia may eventually change how someone communicates or makes decisions. Earlier conversations can help preserve something important through those changes: the person’s own voice.
If the day comes when someone else must speak for them, that person can have more than a name on a legal document. They can have a better understanding of the person they are speaking for.
Alzheimer’s Association, “Legal Planning,” Read the full article here.
Alzheimer’s Association, “End-Of-Life Planning,” Read the full article here.