Don’t Let the Diagnosis Get Ahead of the Person
Receiving a diagnosis of Alzheimer’s disease or another form of dementia can change the way a family looks at the future almost immediately. There are questions about what will change, how quickly it will happen, what needs to be done and how to prepare.
Those are important questions. But sometimes, without even realizing it, the diagnosis can begin to get ahead of the person.
A forgotten word may suddenly carry more weight. A decision that would not have been questioned before may now cause concern. Family members may begin stepping in to help with things the person is still able to do on their own. Conversations may start happening around the person instead of with them.
It can happen with the best of intentions. Families want to keep the person safe. They want to make things easier. They may also be trying to anticipate what will be needed later so they are not caught unprepared.
But the diagnosis may be new. The person is still the same person they were the day before they received it.
A Diagnosis Does Not Tell Us Everything
We know much more about Alzheimer’s disease today than we did even a few years ago. Advances in testing and biomarkers can identify changes associated with the disease earlier, sometimes before significant changes are apparent in everyday life.
That makes it even more important to separate what we know about the disease from what we see in the person.
A diagnosis gives us important information, but it does not tell us everything someone can still do. It does not tell us which decisions they can make, which responsibilities they can continue to manage, what brings meaning to their day or how much support they need at this particular point in time.
We learn those things by paying attention to the person.
There can also be a tendency to see everything through the lens of dementia once a diagnosis has been made. Someone misplaces their keys and the immediate thought is the disease. They become frustrated and the frustration is attributed to dementia. They change their mind about something and others may question whether they really understand the decision they are making.
Not every mistake is dementia. Not every emotion is a symptom. Not every choice we disagree with means the person is no longer capable of making choices.
Presuming ability means beginning with what the person can do rather than assuming what they cannot do because of a diagnosis. As abilities change, support can change too.
Start With What Is Still Possible
When someone receives a dementia diagnosis, it can be natural to focus on what may eventually become difficult. But there is also value in looking at what is still working.
Can the person still make the morning coffee? Manage parts of the household? Run familiar errands? Go for a familiar walk? Choose what they want to wear? Make plans with friends? Participate in decisions about their healthcare or finances?
Those everyday things matter. They are not simply tasks. They are part of independence, identity, routine and purpose.
There may come a time when some of these things require more support. That does not mean they need to be taken away before that support is necessary.
Sometimes a small change is enough. A reminder. A written note. More time to complete a task. Fewer choices at once. A little help getting started. Doing something together instead of doing it for the person.
Even when something becomes more difficult, it does not always have to become all or nothing. Maybe someone can no longer prepare an entire meal independently but can still wash the vegetables, stir the sauce or set the table. Maybe managing all of the household finances has become overwhelming, but the person can still participate in reviewing bills and making decisions about spending.
The question can shift from Can they still do this? to What part of this can they still do, and what support would help?
Supporting someone is not always the same as taking over.
Preparing Still Matters
Not getting ahead of the person does not mean ignoring what may lie ahead.
Early in the journey can be an important time for conversations about healthcare wishes, finances, legal documents, living arrangements and what matters most to the person. These conversations can be difficult. Talking about a future that may include changes in memory, independence or the ability to make certain decisions is not easy for the person living with dementia or for the people who love them.
But difficult conversations can still be important conversations.
Having them earlier gives the person living with dementia a greater opportunity to participate and to say what they want. Who would they trust to make healthcare decisions if they could no longer make them themselves? What matters most to them about where and how they live? Who do they want involved in their care? Are there things they feel strongly about?
The answers may not resolve every decision that comes later, but they can give families something important to return to when circumstances change.
Early in the journey is also a time to learn more about the disease, understand available resources and begin thinking about who can be part of the support system. That support system may include family, friends, neighbors, healthcare providers, community resources or others who can help in different ways over time.
Support matters for the person living with dementia, but it matters for the care partner and family too. No one person needs to become responsible for every part of the journey.
Whenever possible, planning should happen with the person, not simply for the person.
Ask what they want. Listen to what is important to them. Respect the decisions they are still able to make. Talk about who they want involved and how they would like to be supported if their needs change.
Planning ahead can help a family feel more prepared. It does not have to mean living as though those changes have already happened.
Allow Support to Change
Dementia is progressive, so support will change over time. But progression does not look the same for everyone. It can vary depending on the type of dementia, and even people living with the same type of dementia may experience changes differently. The order in which abilities change, the pace of those changes and the support someone needs will be individual to that person.
What works today may not work six months or a year from now. Something a person manages independently now may eventually require a reminder, then some assistance and perhaps, later, someone else taking responsibility for it.
Progression also does not always happen in a straight line. Abilities can vary depending on the day, the environment, fatigue, stress, illness and how much is being asked of the person at one time.
This is why paying attention to the individual person matters.
Instead of deciding ahead of time what someone with dementia should or should not be doing, look at how this particular person is managing. Where are they successful? Where are they beginning to struggle? Is there a way to make the task easier or safer without removing it altogether?
Safety matters, and there will be times when stepping in is necessary. But safety and independence do not always have to be opposing choices. Often there is room in between for support, adaptation and shared responsibility.
Stay With the Person
Dementia changes over time, and every person's journey is different. There will be adjustments along the way. Some will be small. Others may be much harder.
But constantly looking for the next loss can make it difficult to see what is still there.
There are still relationships to enjoy, decisions to make, routines that matter, things to contribute, errands to run, places to go and moments that have nothing to do with dementia.
There will be time to adjust as needs change. The person may need more support over time. Let that support grow with the need.
A diagnosis is important. So is understanding the disease and preparing for what may come. But neither should cause us to overlook the person standing in front of us today.
Keep asking what matters to them. Keep noticing what they are able to do. Continue to include them, listen to them and make room for them to participate in their own life. As things change, the way we support them may need to change too.
The diagnosis will always be part of the picture. It just doesn't need to become the whole picture.
Looking for support? Reach out. Let’s navigate this together.
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