My Loved One Was Diagnosed. Now What?

Finding out your loved one has dementia can feel earth-shattering. Suddenly all the plans that were made start to be questioned and the future starts to look different. You start thinking about signs you missed, asking if there was more that could have been done. While it may seem sudden and overwhelming, rest assured that it is not the end of the world; it is just the beginning of a new way to do things.

A dementia diagnosis doesn’t change everything overnight. Dementia affects each person differently, and depending on the stage of it, can be debilitating or just simply inconvenient for the one diagnosed. Dementia is a progressive disease that has some days better than others. As a loved one to someone diagnosed, this inconsistency is usually the hard part. Some days they may seem like they don't need any help, and others you may question if you're doing enough.

The time after finding out your loved one was diagnosed can be scary, but there are places you can start.

I'm Scared for Them, What Do I Do?

In the early stages after finding out, most people experience a spectrum of outcomes: from full denial and believing the doctors are wrong to wanting to help right away.

No reaction is wrong, but there are very important ways that your reaction affects the people who is actually diagnosed.

A person in denial may argue for further testing or dispute memory concerns, while the person accepting and ready to help may actually end up taking away autonomy long before the person is unable to make decisions. Rather than making decisions dictated by emotion, take time to process the information (days not hours) and then begin planning.

Soon After Diagnosis

In the early stages, focus less on the condition as a whole. It is easy to categorize someone as having dementia, then jumping right into them being helpless. The truth is this is not usually how dementia progress. Often, they have some minor changes, enough to affect day to day life but not to the point they are disabled by the disease. Instead of focusing on "managing" the person, look into the areas where they may need help. Most abilities do not decline all at once, it is usually a gradual process.

Observe your loved one's routines. Are they forgetting appointments, but able to make dinner? Are they running the laundry just fine, but forgetting to bathe? Most loved ones are surprised when they realize that the person is not suddenly helpless, but rather just slightly forgetful compared to what was expected. Take notes of the areas that have changed and then decide how to approach it. You may have noticed changes long before diagnosis and finally understand why but taking over right away can severely inhibit the person affected and sometimes speed up the condition.

In dementia, keeping routine and keeping the brain active are crucial. Taking over more responsibilities and making decisions for your loved one before they are ready for you to take over deprives them of much needed stimulation that has been shown to keep the brain engaged during the progression of dementia.

Pay attention to a few specific things over the next couple of weeks: whether they are missing steps in familiar routines, whether they are repeating actions or questions without awareness, whether they are losing track of time in a way that affects appointments or meals, and whether they are still safely managing medications and finances without being told to do these tasks.

Once you are able to narrow down areas where they may need some assistance, thoughtfully plan out having a discussion about how you can help.

When You're Ready to Step In

Sometimes our loved ones are stubborn or don't want help. Don't take this personally; remember they are also grappling with the diagnosis and the grief that comes with it. Remove emotions from the equation and focus on facts without assumptions. Bringing up topics can be as simple as:

• "I noticed your medications are still in there for yesterday. Did you take them?"

• "I noticed the laundry is still wet did you want me to move it to the dryer?"

• "The front door was unlocked when I came in today, I can lock it on my way out if you'd like."

Avoid statements like "you forgot to" or "did you remember to..." or "I can do this for you." They may be done in good faith but can often lead to the person being helped feeling pitied or babied, amplifying resistance to help.

Narrow down what you can help with today. If your loved one has other chronic conditions like high blood pressure, diabetes, heart conditions, or any other medical condition that requires regular medication this may be a good place to start. Medication is a very serious routine that must be adhered to, to avoid future issues and to manage symptoms that can accelerate problems with the brain. For example, high blood pressure affects circulation, which may increase memory problems if not managed. If you notice they are not taking their medication regularly, offer to call at the same time each day and have them take it while you're on the phone. Other options can be setting reminders on a calendar, setting a phone alarm, or even using Alexa or Siri to set a reminder when medications are needed.

Other areas that may require assistance even early on are keeping up with appointments or events planned during the week. Having a central calendar for your loved one or a shared calendar on your phones can help keep track of what should be happening, when. It also gives you peace of mind knowing where your loved one will be, and when to check if they have not arrived. It also may help to notice symptoms of decline if more and more tasks are not being kept up with, which can then be brought to their doctor.

Enhancing safety in the home may also become a topic in the beginning, in preparation for changes. Tightening up cords, removing loose rugs, adding automatic timed locks can all be helpful in keeping the home safe. If you are unsure of where to start with modifying the home, check out Dementia Proofing Your Home.

Having the Hard Conversations

Day to day tasks are one thing, but quality of life tasks are another. As dementia progresses, and depending on the stage when the person is diagnosed, certain tasks may no longer be safe for the individual to participate in.

Driving is a huge topic that is often forgotten until after something bad has occurred. In the beginning, the person may seem well enough to drive but as the disease progresses, serious conversations need to be had. The loss of driving abilities is something that can bring intense emotions, especially when the person feels this is removing their value and autonomy as a person. It can be hard to have these talks, but its best to do so while the person is still able to make decisions. Do not approach this as a group family conversation. Often this does the opposite, leading to the person feeling "ganged-up-against" and overwhelmed. Designate one trusted person, it can even be a doctor, to have this conversation. Present the topic in a safe, non-judgmental way.

• "I wanted to talk to you about something that might be uncomfortable. I care about your wellbeing, and I feel that it may be time to discuss driving. Do you feel comfortable talking about that?"

  
  

This opens up the idea, without accusing, judging, or forcing the talk. They may stop the conversation right there, but it plants the seed and gets them thinking about the topic. If they are not willing to talk right now, that's okay. Give it a few days and then try again. Express your concerns without stating something is wrong with your loved one.

Another topic that many people avoid is the one around legal decisions. For some, it makes it feel like death is inevitable and rapidly approaching. The reality is, talking about it now while the person is coherent and able to sign documents makes a huge difference in the care they receive later on. It may not be a topic to jump into right when a diagnosis is found out, but within the first few months, it should be seriously considered so actions are in place long before they are needed.

If you are unsure where to start, here is an article going over Preparing for the Future after a dementia diagnosis.

Expect there to be a lot of emotions. Not only from your loved one, but from yourself. You may grieve the parent, partner, or relative. You may feel a profound sense of loss, or anger that it happened. There may be moments of relief when you know it's something that can be named, not some undiagnosed anomaly. All of it is valid.

In most cases dementia is caught early enough for interventions to produce beneficial outcomes. In other cases, the changes are more apparent and require a different approach. Informing yourself on the type of dementia your loved one has can help prepare you for changes to come. And when changes do happen, we have information to help.

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To find out more about the different types of dementia, check out What is Dementia?

or move onto How Dementia Changes Communication.

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