How to Live Well with Dementia

Can You Still Support Brain Health After a Dementia Diagnosis?

A dementia diagnosis isn’t a white flag moment. Some people live for years with dementia, and we shouldn’t simply write those years off. People can live engaged, fulfilling lives during that time.

Even with a neurodegenerative illness such as Alzheimer’s disease, there are still things we can do to promote brain health and potentially slow cognitive and functional decline.

Many of these will sound familiar. We wrote about them in our earlier piece relating to modifiable risk factors for dementia.

So, to quickly recap, we’re talking about exercise, good nutrition, and anything that reduces the risk of heart disease and stroke.  So, that means managing issues such as blood pressure, diabetes, and cardiovascular disease rather than allowing dementia to push every other health concern into the background.

Sleep, mood, and anxiety matter too.

Sometimes I see dementia become the explanation for everything bad that happens to a person. We must resist this notion. Someone with dementia can still have an infection that needs to be treated. They can become depressed and receive therapy that helps.

Some of these hardships are often more likely with dementia, but we shouldn’t treat them as an inevitability, a by-product we are powerless to counter.

Living well, therefore, starts with ongoing good medical care.

Why Do Behavioral Symptoms Matter to Living Well?

Behavioral and psychological symptoms matter because, when untreated, they can make everyday life significantly harder for both the person with dementia and the people around them.

Agitation, aggression, paranoia, psychosis, and changes in mood are extraordinarily common in dementia. Families sometimes feel that they simply have to endure these symptoms because they are “part of dementia.”

But this isn’t a useful way to look at it. Instead, we should try to understand what’s causing the behavior and what we can do about it.

Sometimes the answer involves changing the environment or the way other people communicate with the person. Often, we can pinpoint an unmet need or a medical problem. In other circumstances, medication may have a role.

These symptoms can seriously affect quality of life and make it much harder for someone to remain engaged socially or continue living in their current setting.

So, when I talk about living well, I’m not suggesting that families merely find more activities to fill time and hope for the best. We have to also treat the problems that are getting in the way.

Why Do I Put So Much Emphasis on Social Engagement?

Because, to my mind, social engagement is one of the most important parts of living well with dementia, and there are plenty of studies that back this up.

Families often work extremely hard to keep someone safe at home. This is a natural, protective response.

But staying at home, safe in a bubble, isn’t necessarily the same thing as living well.

If someone spends most of the day sitting at home with very little interaction beyond a spouse or care partner, there may be no obvious crisis. Sometimes, the pattern of thinking is, “nothing terrible happened today”. With that mindset, this kind of arrangement, where your loved one is understimulated but safe, can feel successful.

Our general thinking now is that ‘nothing bad happened’ is too low a bar for somebody with dementia. Meanwhile, the spouse can also become exhausted providing nearly all of that companionship and support.

I sometimes describe the home becoming a kind of cocoon. It feels protected and comforting, but over time the world can become smaller and smaller, which is not what we should be aiming for.

Social engagement is so important because the brain needs stimulation. A conversation asks us to listen, interpret, remember context, find words, read emotions, and respond. Of course, this feels second nature to most of us, but those processes engage several parts of the brain at once.

Over time, that kind of activity may also help support cognitive reserve, the brain’s ability to keep functioning despite age- or disease-related changes. In layman’s terms, it’s the ‘use it or lose it’ idea. Keeping someone mentally and socially engaged can help them use and retain the abilities they still have.

So, we need to find social opportunities for someone living with dementia, whether it’s talking to extended family, attending a dementia day program, joining a local community activity, or whatever else your loved one enjoys and can participate in.

What About Cognitive Stimulation?

Cognitive stimulation needs to match the person’s interests and abilities.

This is another area where generic recommendations quickly break down.

A crossword puzzle is not inherently good dementia care. If someone has always hated crossword puzzles, giving them one after a dementia diagnosis doesn’t suddenly make it a useful activity.

We need to understand the person: what do they enjoy? What can they still do successfully? What frustrates them? What draws their attention?

I sometimes think it would be useful if people had something like a brain-health coach, someone to help the family build a realistic plan and adapt it as needs change. Whatever that plan looks like, it should feel like that person’s life, not a care program we have imposed on them because they have dementia.

How Do You Balance Safety with Quality of Life?

Safety matters enormously, but we need to distinguish an immediate danger from a possible risk. This is where dementia care can get tricky for families and caregivers – finding the right balance.

The platitude ‘safety first’ still stands; it must be paramount. We can’t ignore dangers because we want to preserve independence, but there are degrees of risk.

Leaving a stove on and creating an immediate fire hazard is different from saying someone might fall if they go outside. Continuing to drive after a serious accident is distinct from worrying that someone could become agitated at a social event.

We have to make those logical distinctions.

I think families hear an enormous amount about risk after a dementia diagnosis. We tell them what the person should stop doing. We warn them about falls, wandering, medication mistakes, driving, and all the other things that can go wrong.

But if we’re not careful, dementia care can become an exercise in subtraction.

First, we take away the car keys. Then perhaps someone stops cooking. The family becomes nervous about outings. Activities disappear because they seem too complicated for the care partner to deal with. It’s easier to say it’s too dangerous than to find a viable solution.

That’s why I like posing a different question:

What can we add?

How do we help this person continue doing things that matter to them? If something has become unsafe, can we modify it rather than eliminating it? Can somebody accompany them? Can we change the environment or provide more support?

I want families to hold both ideas in their minds at the same time. We need to protect people from serious harm while finding ways to facilitate engagement with the world around them.

Which Safety Risks Do I Take Most Seriously?

There are certain issues where I’m less philosophical because the risk can be immediate. I stress the need to make those distinctions, so here are a few. I tend to pay particular attention to driving, medication management, falls, leaving the stove on, and wandering.

There are certainly others, too. If one of those areas presents an immediate danger, we need to address it.

Sometimes doing that – stripping something away – will reduce quality of life in the short term. Taking away somebody’s ability to drive is the obvious example. Driving may represent independence and access to friends, activities, or familiar places.

But if driving itself has become dangerous, continuing isn’t a reasonable way to protect quality of life. Taking preventative action in this scenario is non-negotiable.

The challenge is finding a replacement. If we remove the car, how does that person now get out of the house? If someone can no longer safely cook alone, can they still prepare food with someone else?

Stopping the unsafe activity may solve one problem while creating another. Good dementia care asks what we can put back in its place, so it’s a life adjustment rather than an incremental stripping away of independence.

Does Living Well with Dementia Mean Remaining Independent?

Not necessarily. I think preserving engagement and quality of life matters more than preserving independence at any cost. Independence is important to most of us, but dementia changes what somebody can safely manage over time.

As such, the goal can’t always be “How do we keep everything exactly as it was?”

Also, let’s reframe it, anyway. Sometimes accepting support allows someone to do more, not less.

A person who can’t go somewhere alone may still be able to go with someone else. Someone struggling at home may become more socially engaged after starting a day program or moving to a community where other people are around.

We see this in senior living generally – the classic case of a senior downsizing and suddenly thriving after ‘giving up the independence’ to go into a retirement community. The same principle can apply for someone with dementia who becomes much more engaged after attending a day program, despite the initial perception of forfeiting something by admitting they need support.

And look, regarding where somebody lives, home may still be the right place.

At another point, we have to understand a different environment may offer more opportunities to participate in life.

We have to look at what is actually happening rather than what the address represents.

Can Families Find This Balance on Their Own?

Sometimes, but I think we ask an enormous amount of families when we expect them to make all of these judgments without guidance.

Think about what we are asking them to do: to recognize changing abilities, assess safety, protect independence, manage medical problems, respond to behavioral symptoms, and work out how much help is enough.

Often, they’re doing all of that while emotionally adjusting to dementia themselves. That’s a lot to deal with.

This is where clinicians, care managers, dementia specialists, support groups, and other experienced professionals can help. We can examine the risks with the family and gauge what’s best rather than simply handing them a list of prohibitions.

Is this a theoretical risk or is something likely to happen tomorrow? What would the consequences be? What support could reduce that risk?

Sometimes families need somebody outside the situation to help them sort through those questions.

So, What Does It Mean to Live Well with Dementia?

I come back to where I started. I can’t give you one definition.

Living well will look different for a person in the earliest stages of Alzheimer’s disease who remains active in their community than it does for somebody who needs substantial support later.

But I do think we can ask better questions.

• Are we treating the person’s medical and behavioral needs?
• Are they still interacting with other people and using the abilities they have?
• And when we take something away because it has become unsafe, are we also asking what we can give back?

Dementia will inevitably change what somebody can do. Good care should not accelerate that process by making their world smaller than it needs to be.

Continue Exploring Dementia Care

Living well with dementia depends partly on getting the right medical care and support around the person. Why Is the Caregiver Part of the Dementia Care Plan? explores how caregiver health and capacity can affect that support. Families can also read What Happens After a Dementia Diagnosis? for a broader look at treatment, care planning, and preparing for changing needs.

These topics connect through the Dementia Care Pathway. For further help, explore the Bridges® by EPOCH resource library or find upcoming caregiver support groups and educational events.