Jordan & White founder Jonathan White was quoted this week in an article from The Wall Street Journal on why standard advance directives often fall short for people diagnosed with dementia. You can read the full Wall Street Journal article here. Below, we expand on what Jonathan shared, and what Massachusetts families should understand about their own advance directives.
Where a Standard Living Will Falls Short
A living will and health care proxy are built around a single moment: the point at which someone becomes incapacitated. Dementia does not work that way. It moves in stages, sometimes over many years, and a person can lose the ability to direct their own care long before any of the usual triggers apply.
What Is a Dementia Directive?
A dementia directive spells out care preferences at each stage of the disease, from mild to moderate to severe, so family members and doctors are not left guessing which version of a person’s wishes still applies. Someone might want every available treatment continued at an early stage, then only comfort-focused care once the disease has progressed further. A standard directive rarely draws that distinction. A dementia directive is built around it, and it can stand on its own or attach to an existing health care proxy as a supplement.
The Massachusetts Wrinkle
Massachusetts is one of three states that does not give living wills legal force. The health care proxy, not the living will, is the document providers are bound to follow here. A living will still matters. It guides the person holding the proxy, even though no court or hospital is required to honor it directly. That is close to the exact role a dementia directive plays elsewhere in the country: not a binding order, but the written record that tells whoever holds decision-making authority what to actually do with it.
Why Getting It in Writing Matters
Jonathan’s point in the article was a simple one. Verbal wishes are not the same as written ones. As Jonathan explained in the Wall Street Journal article: “It’s nice to have a paper backup, because if you’re in a position that you have to make a decision, it’s nice to have reassurance that you’re doing what the person wanted you to do.”
Families under stress do not always remember conversations the same way. A written directive removes the guesswork at the exact moment guesswork is hardest to live with.
If You Already Have an Estate Plan
This is a natural addition, not a rewrite. Most existing plans can be supplemented with a dementia directive without disturbing anything already in place.
If You Do Not Yet Have One
This is one more reason the conversation is worth having sooner rather than later, particularly for anyone with a family history of dementia or Alzheimer’s.