Advance Care Planning for Loved Ones with Dementia

Caring for someone with dementia is an act of deep love—but it also brings daily uncertainty. One of the most powerful ways to reduce confusion and protect your loved one’s dignity is through Advance Care Planning.

Advance Care Planning (ACP) is the process of making decisions about the future medical care of someone who may eventually be unable to speak for themselves. For people with dementia, the need to plan early is especially urgent. Dementia is progressive and often unpredictable, gradually eroding the ability to make or communicate healthcare decisions. Having a documented care plan ensures that your loved one’s voice is still heard—even after they can no longer advocate for themselves.

Advanced Care Planning is not just about choosing whether or not to be resuscitated; it encompasses treatment preferences, comfort priorities, and the appointment of a trusted healthcare agent. According to the National Institute on Aging (NIA), these discussions and decisions are most effective when they begin early—ideally at or shortly after diagnosis.

“Families often wait too long to start these conversations. By the time the person with dementia
can no longer make decisions, caregivers are left with guilt, confusion, and unnecessary conflict.”
— Dr. Susan Tolle, OHSU Center for Ethics in Health Care

For those with dementia, Advance Care Planning plays a critical role in ensuring that care decisions remain person centered even as cognitive function declines. When preferences are unknown or undocumented, families may be forced to make difficult choices without knowing what their loved one would have wanted.

Some of the key benefits include:

• Reduced caregiver stress. Knowing your loved one’s wishes can lighten your emotional load, particularly in medical crises or at the end of life.
• Avoidance of unwanted interventions. People with dementia often receive burdensome treatments that offer little benefit late in the disease. ACP helps reduce unnecessary hospitalizations and invasive procedures.
• Preserved dignity and autonomy. A documented plan honors your loved one’s beliefs and values, even when they can no longer express them.
• Better alignment with hospice and palliative care services. Early planning helps your care team know when to shift toward comfort-focused goals.

It’s never easy to talk about illness, decline, or death—but waiting too long can mean your loved one loses the ability to share their voice. If your family member is still in the early stages of dementia, encourage them to express their values and medical preferences now.

You might ask:

“What does a good quality of life look like to you?”

“Are there medical treatments you feel strongly about—either wanting or avoiding?”

“If you couldn’t recognize people or talk anymore, would you want your doctors to keep trying everything to extend your life?”

These questions can open the door to meaningful planning. If your loved one can no longer participate in these conversations, the decisions will fall to you or another designated surrogate. In that case, try to make choices based on what you know of their values, not your own beliefs.

For dementia caregivers, understanding and completing the right documents is essential. These are legal tools that ensure your loved one’s care preferences are followed when they can no longer speak for themselves.

• Advance Directive/Living Will: Outlines treatment preferences for scenarios like artificial feeding, breathing machines, or permanent unconsciousness. Even in later stages of dementia, this can be updated if the individual retains some decision-making capacity.
• Durable Power of Attorney for Health Care: Appoints someone (usually a trusted caregiver or family member) to make healthcare decisions. This is critical in dementia care, where the person may gradually lose insight and judgment.
• POLST: (Physician Orders for Life-Sustaining Treatment): Especially helpful in advanced dementia, this is a medical order signed by a doctor outlining which treatments the person does or does not want. It travels with them across all settings—hospital, assisted living, or home.