Utah Advance Directive for Dementia: Planning Before Capacity Declines

By the time a dementia diagnosis becomes obvious, it may already be too late to execute a legally valid advance directive. Utah law requires that the person signing the document understand the consequences of appointing an agent and the general nature of their medical choices. Moderate-to-severe cognitive impairment can disqualify someone from meeting that standard.

The window to complete an advance directive that addresses dementia-specific scenarios is before significant decline begins — ideally at the first signs of mild cognitive impairment or immediately after an early-stage diagnosis.

The Capacity Standard for Signing

Under the Uniform Health Care Decisions Act (Utah Code Title 75A, Chapter 9), any competent adult can execute an advance directive. "Competent" means the person understands:

• That they are appointing someone to make healthcare decisions
• The general nature of their personal and medical relationships
• The consequences of the choices they are documenting

A person with early-stage Alzheimer's or mild cognitive impairment can often still meet this standard. The key is acting while the person can still articulate their values, recognize their healthcare agent, and understand what the document does.

If capacity is borderline, having the signing witnessed by a physician who documents the person's cognitive state at the time of execution provides additional protection against future challenges.

Dementia-Specific Instructions to Include

A standard advance directive covers terminal conditions, persistent vegetative states, and irreversible coma. Dementia introduces additional scenarios that the standard form does not explicitly address:

Feeding assistance. Specify whether you want tube feeding or IV nutrition if you lose the ability to eat independently. Many dementia patients eventually cannot swallow safely. The directive should state whether you want a feeding tube placed or whether you prefer hand-fed comfort care only.

Hospitalization thresholds. Repeated hospital transfers are disorienting and often harmful for dementia patients. Document whether you want to be treated in place (at home or in a care facility) rather than transported to a hospital for infections, falls, or other acute episodes.

Antibiotic treatment for late-stage infections. Pneumonia is the most common immediate cause of death in advanced dementia. Specify whether you want aggressive antibiotic treatment for recurrent infections or comfort-focused palliative care.

Restraint and sedation preferences. Some late-stage dementia patients experience agitation or aggression. Document your preferences regarding chemical or physical restraints.

Cognitive testing consent. State whether you authorize cognitive assessments and how results should be communicated to family members.

Coordinating With a POLST

As dementia progresses, your healthcare agent should work with your physician to translate your advance directive's instructions into a POLST (Provider Order for Life-Sustaining Treatment). The POLST is a clinical order that paramedics and emergency responders follow directly — it determines whether CPR is initiated during a 911 call.

A POLST is particularly important for dementia patients because they may call 911 during a confused episode, fall and sustain injuries that trigger emergency response, or experience a medical crisis in a care facility. Without a POLST, paramedics are legally required to perform full CPR and transport to the emergency department regardless of what your advance directive says.

The advance directive guides your agent and hospital providers. The POLST controls the emergency response. For dementia patients, both documents need to be in place and consistent with each other.

Choosing a Healthcare Agent for Dementia Planning

The healthcare agent for someone anticipating cognitive decline needs different qualities than a standard agent:

• Long-term availability. Dementia progresses over years, not days. Your agent needs to be available for an extended caregiving timeline, not just a single medical crisis.
• Decision-making stamina. Your agent will face dozens of treatment decisions over months or years — each one emotionally difficult. Choose someone who will not burn out.
• Alignment with your values, not their own. The agent must honor what you documented in your directive, even when their personal beliefs differ. This becomes harder as the patient can no longer advocate for themselves.
• Proximity or willingness to relocate. Active involvement in a dementia patient's care requires regular presence at medical appointments, care conferences, and facility visits.

Name at least one alternate agent. Caregiver burnout is common in long-duration dementia care, and your primary agent may need to step back.

The Utah Advance Directive & Living Will Kit includes dementia-specific planning guidance, including treatment preference scenarios that go beyond the standard statutory form's terminal-condition focus.

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