What Happens After a Dementia Diagnosis? Understanding the Next Steps

What Should You Ask After a Dementia Diagnosis?

You don’t need a crash course to understand everything about dementia at the first appointment.

That would be overwhelming and, in truth, probably not helpful. At this emotional moment, it’s often challenging to remember everything discussed anyway.

Start with the basics of the diagnosis itself.

What type of dementia does the clinician believe this is? Alzheimer’s disease is the most common cause of dementia, but there are many others, including vascular dementia, Lewy body dementia, and frontotemporal dementia. Sometimes more than one disease process may be contributing to someone’s symptoms. Getting the right diagnosis is important because it can influence what to expect and which treatments may be appropriate.

So, feel free to ask how confident the clinician is in the diagnosis and whether they recommend further testing.

You can also ask what progression might look like. We don’t always put a neat label on a specific stage, but we can usually give some idea of where things stand and what might be down the line.

Also, before the first and any future appointments, write your questions down.

I encourage caregivers to bring a notebook or keep a running list on their phone. New questions inevitably come up when you get home.

You don’t need every answer immediately. What you do need is an understanding of what is happening and where to turn when the next question arises.

Who Will Manage Your Dementia Care?

This is one of the critical questions families can ask, and one that our healthcare system doesn’t always answer clearly.

Who is your point person?

Dementia care can involve many different roles: primary care physicians, neurologists, geriatricians, geriatric psychiatrists, nurses, social workers, therapists, and other professionals.

Primary care should often remain the foundation. A specialist may become involved to clarify a diagnosis, consider particular treatments, address complex behavioral symptoms, or manage another aspect of care.

What’s important is that somebody is in charge, and that they have a clear view of the whole person and the big picture.

Who is managing medications? Who do you call if someone’s behavior suddenly changes? Who is keeping track of other medical conditions? Who helps the family find community resources or additional support?

One of the greatest misconceptions about dementia care is that everything depends on finding one perfect specialist. Many believe that getting access to a sought-after specialist will unlock the best care. That mindset is misguided.

No individual clinician can provide everything a person living with dementia will need. In some circumstances, a specialist may not be necessary at all.

What matters more is having the right people involved at the right time in a genuine team-based approach. Everyone has a role and knows who is responsible for what.

What Treatment Options Should You Discuss?

We must say outright that the treatment depends on each individual case.

The type of dementia matters, the stage of the disease, a person’s overall health, their symptoms, their other medications, and, sometimes forgotten, what actually matters most to them and their family. All these variables together determine treatment (hence the need for a big-picture view!)

We may use medications to help with cognitive symptoms. For some people with early Alzheimer’s disease, newer disease-modifying therapies may also be worth discussing.

But what I really want to reiterate is that treatment goes well beyond prescribing medication.

Depression, anxiety, sleep problems, agitation, hallucinations, and other behavioral or psychological symptoms can have an enormous effect on quality of life. Medical problems such as pain, infection, medication side effects, hearing loss, or poor sleep can also affect thinking and behavior.

Exercise, nutrition, social engagement, and routine also deserve attention.

Taking all of this into account, treatment should therefore begin with a broader question:

What does this particular person need to live as well as possible?

The answer is not a one-and-done solution; it will change over time.

What Should Caregivers Put in Place Early?

I have spent much of my career seeing what happens when families are forced to make important decisions during a crisis.

Sometimes crises can’t be avoided. But earlier conversations can make many later difficult situations easier to manage.

• Who does the person trust to help with medical decisions?
• What matters to them if their care needs increase?
• Are legal and financial documents in order?
• Is driving still safe?
• Are medications being managed correctly?
• Does anything about the home create an unnecessary safety risk?

Advance care planning is particularly important because these conversations are much easier when we know what the person themselves wants.

There is an understandable tendency to put these conversations off because they feel uncomfortable, but planning early can preserve choice.

How Can Families and Caregivers Get Support?

I like to make the point that dementia physically affects one brain, but it changes the lives of an entire family.

A spouse may gradually begin managing medications, appointments, meals, and household responsibilities. An adult child starts fielding calls, attending appointments, or making regular trips to check that everything is okay.

Often, these changes happen gradually enough that the person providing the help doesn’t even think of themselves as a caregiver yet. But even a series of small escalations can make a drastic difference and place strain on the caregiver.

As a caregiver, your well-being matters.

We often say that supporting caregivers is not separate from treating dementia. It’s an essential part of good dementia care. Families should ask what resources are available early, rather than waiting until somebody is completely exhausted.

That might include caregiver education, a support group, a social worker, a care navigator, help in the home, respite services, or community programs.

It may simply begin with having somebody – a clearly identified somebody – who can answer questions.

The CMS GUIDE Model reflects how seriously caregiver support is now being incorporated into comprehensive dementia care.

In short, caregivers are part of the care team. We need to treat them that way.

How Can Someone Continue Living Well After a Dementia Diagnosis?

I think we need to be very careful about what happens psychologically after somebody receives a dementia diagnosis.

A diagnosis can very quickly become the lens through which everyone begins viewing that person.

• Can they still do this?
• Should we stop them doing that?
• What should we take over?
• When/how will they get ‘worse’?

Unfortunately, there will be things that become unsafe or difficult over time; the disease makes this somewhat inevitable. But my approach to dementia care has never been simply about identifying the issues or the things we need to restrict access to or take away (like driving or managing medications).

The goal should be to preserve independence for as long as it can be maintained safely. So, we should:

• Keep people involved in decisions
• Keep them socially engaged
• Keep doing the things that bring structure and enjoyment to their days

A diagnosis changes things, but it shouldn’t immediately become someone’s entire identity or a call to begin stripping away freedoms.

What Should Ongoing Dementia Care Look Like?

The care plan has to evolve as needs change. A plan that works well today should only ever be seen as temporary.

Cognitive symptoms may progress, and new behavioral symptoms may emerge. Other medical conditions can change, sometimes even overnight.

That is why regular follow-ups and check-ins are important, supported by a team of professionals who can always access the latest information about an individual.

A good follow-up should involve more than asking whether someone’s memory has changed.

• How is the person functioning?
• How is their mood?
• Are they sleeping?
• Are medications still appropriate?
• Are there new safety concerns?
• Is the caregiver coping?
• What is going well?
• And what has become harder since the last visit?

These conversations allow care to evolve before a manageable problem becomes a crisis.

A Diagnosis Should Lead Somewhere

No family needs to solve every part of dementia care on the day of diagnosis. You should gain a rudimentary understanding of the diagnosis itself. You should leave the appointment knowing:

• Who you can call
• When the follow-up will happen
• The treatment plan
• Any immediate safety concerns
• Planning questions to consider

A diagnosis and subsequent treatment plan should also allow important conversations to happen early enough for the person living with dementia to remain at the center of them. At the next appointment, things may have changed, and new questions may arise.

That is what we mean when we talk about a Dementia Care Pathway.

The pathway will look different for every person. Needs will change, and different professionals may become involved along the way.

But families should always understand what the next step is and where they can turn for help.

Continue Exploring Dementia Care

The period after diagnosis often brings questions about who should provide care and what support may be needed. What Is the Role of a Geriatric Psychiatrist in Dementia Care? explains when specialist expertise can help, while Why Is the Caregiver Part of the Dementia Care Plan? looks at the important role family members and other caregivers play.

You can explore these topics together through the Dementia Care Pathway. Bridges® by EPOCH also provides additional dementia resources and ongoing caregiver support groups and educational events for families looking for further guidance.