Connecticut Advance Directive for Dementia: Planning Before Capacity Is Lost

A standard advance directive covers what happens if you become terminally ill or permanently unconscious. Dementia creates a different problem — a gradual, unpredictable decline in decision-making capacity that can stretch over years. Connecticut's statutory framework does not have a dementia-specific advance directive form, which means families must work within the existing combined directive to address scenarios the standard language was not designed for.

Here is how to create a Connecticut advance directive that accounts for progressive cognitive decline, when it must be executed, and the coordination steps that prevent gaps in care.

The Timing Problem

Connecticut requires that you have decision-making capacity when you sign an advance directive. Once dementia has progressed to the point where you cannot understand the nature and consequences of the document, it is too late to execute one.

This creates a narrow window. In early-stage dementia, the person often retains enough capacity to sign legal documents. But families frequently delay planning because "they're still doing fine" — and by the time a crisis hits, capacity has been lost.

If there is a dementia diagnosis or even early cognitive concerns, completing the advance directive now is not premature. It is the only option.

What to Include Beyond Standard Language

Connecticut's combined advance directive form includes general sections for end-of-life wishes, health care representative appointment, and organ donation. For dementia, you need to go further by adding specific instructions in the "additional instructions" section of the form:

Treatment preferences at different stages. A person with early-stage dementia may want aggressive treatment for a broken hip. That same person with late-stage dementia — unable to recognize family, unable to feed themselves — may not want hospitalization at all. Standard advance directive language does not capture this progression. Write out scenarios:

• "If I am diagnosed with moderate to severe dementia and develop pneumonia, I do not want to be hospitalized. I prefer comfort care at my current residence."
• "If I can no longer recognize my immediate family members, I do not want CPR, mechanical ventilation, or artificial nutrition."

Feeding tube decisions. This is one of the most emotionally difficult decisions in dementia care. Artificial nutrition via feeding tube has been shown to provide limited benefit in advanced dementia, but families who have not discussed it in advance often default to insertion during a hospital stay. Include explicit instructions.

Facility transfer preferences. Specify whether you want to remain in your home or current facility versus being transferred to a hospital for acute care. Many families are unprepared when a nursing home calls to say they are sending a late-stage dementia patient to the emergency room for a condition that will not meaningfully improve their quality of life.

Appointing the Right Health Care Representative

For dementia planning, the choice of health care representative is especially important because they may need to make decisions over a period of years — not a single medical event.

Consider:

• Proximity. A representative who lives across the country will struggle to attend care conferences, visit facilities, and respond to urgent calls.
• Emotional readiness. A spouse who is also aging may not be able to handle the ongoing decision-making burden. An adult child or trusted friend may be more practical.
• Willingness to honor difficult wishes. If your directive says no feeding tube in late-stage dementia, your representative needs to be someone who will enforce that even under pressure from other family members or medical staff.

Name an alternate representative who can step in if your primary is unavailable or unable to serve. With dementia cases, the timeline can span a decade — circumstances change.

Coordinating With a MOLST

The advance directive establishes your general wishes and appoints a representative. A MOLST (Medical Orders for Life-Sustaining Treatment) translates those wishes into actionable medical orders that paramedics and emergency personnel follow immediately.

For someone with dementia, this coordination is critical:

1. Complete the advance directive early — while capacity exists — with dementia-specific instructions in the additional instructions section.

2. When the clinical picture warrants it, work with the physician to complete a MOLST that reflects the current stage of disease. The MOLST should be updated as the condition progresses.

3. The MOLST travels with the patient. If the person moves between home, assisted living, and a nursing facility, the MOLST must move with them. Paramedics responding to a 911 call look for the MOLST, not the advance directive.

Without the MOLST, a dementia patient in cardiac arrest receives full resuscitation by default — even if the advance directive says otherwise — because the advance directive requires a physician's activation and the living will only applies when the statutory trigger conditions are met.

The Conservator Designation

Connecticut's combined advance directive includes a section to designate a preferred conservator. For dementia cases, this is worth completing.

If cognitive decline reaches the point where a court determines that a conservator is needed — to manage daily care decisions, residential placement, or finances — the court considers your stated preference first. Without a designation, the court appoints someone based on its own assessment, which may not match your wishes.

Practical Steps

1. Complete the advance directive as soon as there is any concern about cognitive decline — do not wait for a formal diagnosis
2. Add detailed dementia-specific instructions in the additional instructions section
3. Choose a health care representative who can commit to long-term involvement
4. Complete the optional notarized witness affidavit to protect against future challenges
5. Discuss MOLST completion with the primary care physician
6. Give copies to the representative, physician, and any care facility
7. Review and update the MOLST as the disease progresses

The Connecticut Advance Directive & Living Will Kit includes guidance on dementia-specific planning language, a MOLST conversation guide, and a document distribution checklist to ensure every facility and provider has current copies.

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