Caring for Patients with Dementia: The Hard Questions

When caring for patients with dementia, some of the hardest moments don’t come from the diagnosis itself—but from the complex, emotionally charged decisions that follow. From driving safety to end-of-life planning and managing agitation, there are no easy answers. Here’s a practical guide to help you navigate the challenges, support families, and make thoughtful, patient-centered decisions in the clinic.

Diagnosing Dementia: Is the Clock Drawing Test Necessary?

The clock drawing test is a widely used screening tool for cognitive impairment. It evaluates multiple cognitive domains, including visuospatial skills, executive function, motor execution, attention, language comprehension, and numerical understanding.

While not required for a dementia diagnosis, it’s included in both the Mini-Cog and the Montreal Cognitive Assessment (MoCA) but not in the Mini-Mental Status Exam (MMSE).

Many Gen Z people can’t read analog clocks easily, so we are left wondering what might replace clock drawing in the future. Alternatives are emerging; some tools replace it with serial subtraction or multi-step performance tasks, showing promising results. In the meantime, if there is a concern about a person’s underlying abilities to draw an analog clock, you should use a validated tool that does not involve the clock-drawing test, like the MMSE.

Regardless of the method, a comprehensive evaluation—including history-taking, neuroimaging, and laboratory tests—is essential for accurately diagnosing dementia.

How Do We Address Driving in Patients with Dementia?

Driving is a significant concern for dementia patients and their families. While not all early-stage Alzheimer’s patients are unsafe drivers, cognitive decline can eventually impair reaction time, decision-making, and spatial awareness.

Signs of unsafe driving include:

• Increased accidents or near-misses
• Frequent traffic tickets
• Difficulty judging distances and speeds
• Confusion between gas and brake pedals
• Extended travel times for routine errands

It can be challenging to convince someone to stop driving, and families often ask clinicians for help. Early conversations about driving cessation can ease the transition: ask the patient early on when they might want you to help them stop driving.

When it’s time, try limiting the person’s need to drive by having meals and groceries delivered and having family members offer to drive the person. Encourage the patient to stop driving due to the risk their driving poses to themselves and others.

If a patient refuses to stop driving, family members may need to limit access to car keys or disable the vehicle.

What Do We Need to Discuss Early in Dementia?

Planning for the future allows patients to maintain control over their care as their condition progresses. Key components of advance care planning include:

• POLST (Physician Orders for Life-Sustaining Treatment) or MOST (Medical Orders for Scope of Treatment): Ensures clear documentation of a patient’s wishes for emergency care.
• Healthcare Power of Attorney (HCPOA): Designates a decision-maker if the patient becomes incapacitated.
• Five Wishes: A legally binding document in most states that outlines care preferences and end-of-life decisions.
• The Conversation Project: Offers an Alzheimer’s-specific guide to help patients articulate their care goals.

These conversations aren’t easy, but clinicians should encourage patients to discuss their preferences early while they’re better able to consider their options. Encourage patients to make sure documentation is easily accessible, such as placing POLST forms on the refrigerator for emergency responders.

How Can We Manage Agitation in Patients with Dementia?

Agitation and aggression are among the most distressing symptoms of dementia, impacting both patients and caregivers. The first step in management is identifying underlying causes, such as pain, depression, or unmet needs. Non-pharmacologic approaches should be tried first, but medication may be necessary.

Non-Pharmacologic Approaches:

• Establish a calm, structured routine
• Use gentle speech and touch
• Avoid confrontation and arguing
• Provide reassurance and create a safe environment
• Encourage engagement in familiar activities

When non-pharmacologic approaches fail, family members may come to us asking for help. We should start by trying safer medications such as acetaminophen for pain and antidepressants. If behavioral symptoms become so severe the patient and/or family are at risk, it may be appropriate to use atypical antipsychotics. The key is determining whether the benefits outweigh the risks of these medications.

Pharmacologic Treatments:

• Pain management
  • Scheduled acetaminophen can alleviate discomfort.
    
    
• Depression treatment
  • SSRIs, SNRIs, bupropion, or mirtazapine may be beneficial.
    
    
• Atypical antipsychotics
  • Many side effects, including increased risk of mortality
  • Used in cases of severe aggression or psychosis when behavioral strategies fail. Options include:
    • Olanzapine (2.5 mg daily, up to 5 mg BID max)
    • Quetiapine (25 mg at bedtime, titrated up to 75 mg BID max)
    • Brexpiprazole (Rexulti®), FDA-approved for agitation in Alzheimer’s dementia 

Warning: there is an increased risk of mortality when treating elderly people with atypical antipsychotics, so these medications should be used only with shared decision-making and informed consent.

Caring for patients with dementia goes beyond initial diagnosis and medications. By knowing how to address difficult conversations and manage difficult symptoms, you’ll be able to better serve your patients and their families.