Planning After a Dementia Diagnosis

Why Is It Important to Plan Early?

Planning early gives the person with dementia the best opportunity to participate in decisions about their life.

Many people with dementia remain perfectly capable of weighing up choices and expressing preferences, especially in the earlier stages of the disease.

That’s crucial insight for you, and ownership for them.

There’s a big difference between asking somebody, “If driving becomes unsafe in the future, how would you want us to handle that?” and waiting until a serious accident to make unilateral decisions.

Planning gives us time to work through these questions without urgency and with the opportunity to hear directly from the person living with dementia.

What’s important to them? What do they want to preserve for as long as possible? Who do they trust? What would they consider an acceptable level of risk?

We talked in What Happens After a Dementia Diagnosis? about the importance of building a care plan – a process – rather than treating diagnosis as one isolated step. Planning for the future is an important part of that process.

I’ll repeat the same idea I’ve referred to in different contexts: these are conversations I would rather see families begin six months too early than one day too late.

The rest of this article is an exploration of some of these conversations.

What Safety Issues Should Families Consider at Home?

Start by addressing specific difficulties the person with dementia is experiencing. This is better than trying to make the home “dementia-proof” overnight or trying to account for specific potential symptoms.

It’s useful to remember that safety needs change as dementia progresses and vary from person to person. In other words, it’s better to address the safety concerns you see with the person in front of you than to review a generalized checklist you find online.

Early on, the issue may be relatively minor. Someone might use the stairs with less confidence or struggle to find their way around new places. Often, these are small, manageable problems that gradually become more significant.

I encourage families to watch for medication management, falls, cooking, getting lost, and household hazards. If someone lives alone, you also need to consider who’s checking in and how quickly someone would know if something went wrong or if there was an emergency.

But I wouldn’t start removing or restricting activities simply because they could someday become unsafe.

That is a theme I return to in How to Live Well with Dementia. It can be common in dementia care to solve every problem through subtraction. Stop cooking or stop walking outside. Stop doing this, stop doing that.

The better mindset is to ask what we can do to facilitate these activities safely. “How likely is that risk, how serious would the consequences be, and can we reduce it without unnecessarily taking something away?”

When Should You Talk About Driving?

Talk about driving before someone is forced by circumstance to stop.

Driving is one of the most difficult conversations in dementia care because a car represents far more than transportation from A to B. It reflects independence and spontaneity, a person’s sense of adulthood. Taking away the keys can feel infantilizing.

That’s exactly why I don’t want the first conversation about driving to happen after a crash or a frightening near miss. We need to broach the subject earlier.

Families can start by paying attention to changes in driving ability. Ask these questions:

• Are they getting lost on familiar routes?
• Have there been new dents or unexplained damage to the car?
• Are passengers becoming nervous?
• Are traffic signals or busy intersections becoming confusing?
• Have reaction times or judgment clearly changed?

Ideally, the discussion about driving should be led by the person’s physician. Their role is to assess whether there are signs that driving may be becoming unsafe and, when appropriate, refer the person for a formal driving safety evaluation.

That doesn’t always happen automatically, though. If family members are seeing concerning changes, I would encourage them to raise the issue rather than wait for the physician to bring it up.

State requirements also vary, so families might want to look into the rules where they live.

If you collectively determine something needs to change, there’s another side to the planning that families sometimes miss: If somebody eventually stops driving, what replaces the car? How will they get to medical appointments? See friends? Go shopping? Leave the house simply because they feel like going somewhere?

Taking away the keys may reduce one risk while creating new problems around independence and isolation. So, I would plan for transportation alternatives at the same time as planning for driving retirement. That frames the conversation differently: we’re not just removing the keys but offering other ways to get around and participate in life.

What About Legal and Financial Planning After a Diagnosis?

Legal and financial planning should begin while the person with dementia can still contribute, if possible.

In this area, I encourage families to get professional advice rather than relying on a generic checklist from the internet. It’s simple: you won’t find an example that directly replicates yours, so I always recommend individualized expert advice.

An elder law attorney can help families understand what they need. They’ll consider specific circumstances and local laws, giving unique advice.

In general, this is the time to review documents such as a will, powers of attorney, trusts where appropriate, and plans for finances or property management if the person could no longer manage them on their own.

Families should also know where any important information literally is. If there’s a dusty old box of important documents in an attic, someone needs to know.

Are there retirement accounts, pensions, insurance policies, long-term care insurance, property, debts, or benefits that somebody else may eventually need to manage?

But bear in mind that planning ahead isn’t necessarily the same as taking away someone’s independence. Nobody is saying that the person with dementia is relinquishing control at this stage. It’s just that the circle of knowledge may need to become a little wider after a dementia diagnosis.

These kinds of tasks are easier when there is time to deal with them properly. Even if nobody particularly relishes the prospect of contacting an attorney to rifle through all the paperwork, it can be very beneficial.

Another thing to consider: the reality that dementia care can be expensive. Any financial planning should also include an honest look at what future care might cost.

Could we bring support into the home? Is there long-term care insurance? Are there benefits the person may qualify for? What resources would be available if we needed more substantial care later?

What Health Care Decisions Should You Discuss?

Families should talk about the person’s values and preferences before someone else has to make medical decisions on their behalf.

We often reduce advance care planning to the paperwork, but I think the conversation behind the paperwork is just as crucial.

You can’t predict every medical situation somebody may encounter. A proxy may someday face a question that was never specifically written down. In that situation, it helps if they understand how the person thinks.

• What does quality of life mean to them?
• What abilities or relationships are especially important?
• How do they think about aggressive medical treatment if the likelihood of recovery is very small?
• Who do they trust to speak for them?

Again, those can be difficult questions without easy answers.

But imagine the position of a spouse or adult child who has to make a major medical decision without ever having discussed any of this. You don’t want to draw a blank when someone says, “What would they have wanted?”

I would much rather give that person some understanding of their loved one’s values than leave them trying to guess, even if the situation is still messy and unclear.

Advance directives should also be shared with the appropriate people and health care providers and revisited as circumstances change.

When Should Families Start Exploring Future Care Options?

Families should explore care options before the current situation becomes unsustainable. Explore care options before someone needs to move.

Families sometimes avoid looking at home care, adult day programs, assisted living, or memory care because researching those options feels like admitting that a change is inevitable. It’s not a comfortable thing to explore, and I’ve found we’re typically good at avoiding unpleasant things.

But I would try to see it as gathering information and creating options rather than committing to a decision. It can also help to think differently about what accepting support could achieve.

For example, if your goal is to keep someone at home, understanding what home care is available may help you do that longer. An adult day program may provide social engagement for the person with dementia while giving a spouse or family caregiver time to rest or take care of other responsibilities.

These scenarios can be seen as compromises: Yes, we give up some independence, but we do get something beneficial in return.

And if residential care does eventually become appropriate, learning about your options before a crisis gives you far more control over that decision.

We should also include the caregiver in this calculation.

In Why Is the Caregiver Part of the Dementia Care Plan?, I talk about what I sometimes call caregiving creep. One task gets added, then another. The family adapts each time, and because changes happen gradually, it can be difficult to see the burden placed on one person.

A care plan that only works if an exhausted spouse provides round-the-clock supervision is not really a sustainable care plan.

So, when families consider future care, I would look at both sides of the equation: What does the person with dementia need, and what can the people around them realistically continue to provide? If that equation becomes too unbalanced, that’s a clear-cut sign that something needs to change.

What Should Be on a Dementia Planning Checklist?

A truly useful dementia planning checklist should help families keep track of the major decisions they may need to revisit as circumstances change.

After a dementia diagnosis, I would make sure you start thinking about:

• Home and personal safety – medications, falls, cooking, getting lost, emergencies, and whether living alone remains manageable.
• Driving and transportation – how you monitor driving and what transportation could eventually replace it.
• Legal planning – wills, powers of attorney, estate documents, and who can make decisions if the person can’t.
• Finances – accounts, bills, insurance, benefits, care costs, and who can help manage them.
• Health care wishes – a health care proxy, advance directives, and conversations about values and treatment preferences.
• Future support – home care, adult day programs, respite, assisted living, memory care, and other options that may become useful.
• The caregiver’s capacity – whether the current plan remains realistic for the people providing day-to-day support.

Remember also that dementia care changes over time, and your plan will change with it.

But the earlier families begin these conversations, the greater the chance that the person living with dementia can shape the decisions themselves.

I believe that’s ultimately what good planning should accomplish. And when your loved one’s participation in these decisions diminishes, this planning should help preserve their voice as the circumstances around them change.

Continue Exploring Dementia Care

Planning is one part of the wider care process after a diagnosis. In What Happens After a Dementia Diagnosis?, we look more broadly at treatment, follow-up, and building a care plan, while Why Is the Caregiver Part of the Dementia Care Plan? explores how the health and capacity of family caregivers can shape what is realistic over time.

You can also explore the full Dementia Care Pathway, browse additional dementia and caregiving resources, or find upcoming caregiver support groups and educational events from Bridges® by EPOCH.