Why Advance Care Planning Is Essential for People with Dementia

Lisa Fields
Added: 06.24.2022
5 minutes read
After your parent is diagnosed with dementia, having them spell out their wishes regarding their medical and financial decisions should increase the chances that their preferences will be followed when they’re unable to make choices for themselves. Document their desires as soon as you can.

“It has to happen pretty quickly for somebody with a diagnosis of dementia, because we don’t know what capacity’s going to disappear,” says certified senior advisor Michele Buenger, RN, BSN, a senior patient advocate MatureWell Lifestyle Center at St. Joseph Health in College Station, Texas.

One document must be completed by your parent’s doctor. An elder law attorney can help with the rest. Here’s what to address:

Specifying their medical wishes

To make it more likely that your parent receives medical care that aligns with their wishes, they should:
  • Designate a medical power of attorney. Whomever your parent chooses will make medical decisions on their behalf, once they’re deemed incapable of making their own decisions.
  • Complete an advance directive or living will. Your parent can specify medical interventions they want or don’t want, including going on a ventilator or being tube-fed. The medical power of attorney should use this document as a guide when making healthcare decisions on their behalf.

“Medical power of attorney doesn’t... give you power to make medical decisions,” Buenger says. “It gives you the authority to advocate for what the patient has designated they want. The burden is really there for the patient to communicate very clearly what their wishes are to that medical power of attorney, and the [advance directive] helps with that.”
  • Consider completing a do-not-resuscitate (DNR) form. If it aligns with your parent’s wishes, they can choose to forego CPR if their heart stops or they stop breathing. The document must be completed by your parent’s doctor, and it becomes part of the medical record. To have it honored outside a hospital, you must show it to emergency medical technicians, or your parent will receive life-sustaining care. 

“They have to physically see that out-of-hospital DNR form in order for it to be followed; they will not take family’s word of mouth,” Buenger says. “If somebody’s bed-bound, you put it in a clear sleeve and you stick it on the wall next to the bed.”

Indicating their financial wishes
Your parent should designate a power of attorney to ensure that once they’re incapable of handling their financial affairs, someone will manage the house payments, bills and other obligations. Meeting with an elder law attorney ensures that you don’t make misguided decisions that cause future problems. 

“It is worth $2,000 to make sure you set it up right,” Buenger says. “There are questions, [like] ‘Do I share an account with my parents, or do I have special privileges?’ There are differences... because if my mom, down the road, needs nursing-home care and she’s Medicaid-eligible, if I’ve joined her bank account, all of a sudden, our assets are considered shared.”

Online resources can help

It can be difficult to discuss advance care planning, but documenting your parent’s decisions should provide everyone with peace of mind.
“Then it’s not an emotional decision made in a crisis situation,” Buenger says, “it’s a very clear boundary line.”
These resources may help you start talking, to help ensure that your parent receives care according to their wishes:
  • The Conversation Project, an initiative from the nonprofit Institute for Healthcare Improvement, provides conversation starters to help someone select the right person to advocate for their healthcare wishes
  • Advance Care Planning, a resource from the National Institutes of Health’s National Institute on Aging, provides medical and financial informational resources for people with dementia and their loved ones 
  • Five Wishes, a program from the nonprofit Aging With Dignity, provides a guide to help families discuss advance care planning and understand someone’s healthcare wishes