Having the Hard Conversations: Planning Ahead After a Dementia Diagnosis
Written by: Shari Flight, CDP, Owner & co-founder of Ember Holistic Care LLC
A diagnosis of dementia changes everything—but one of the most important shifts isn’t medical, it’s conversational. Suddenly, families are faced with decisions they never wanted to think about: future care, medical wishes, and end-of-life planning. These are not easy discussions, but avoiding them often leads to confusion, conflict, and crisis later on.
The truth is, early and honest conversations are one of the greatest gifts you can give to everyone involved.
Why These Conversations Matter Early
In the early stages of dementia, the person diagnosed can still express their wishes, values, and preferences. This window is critical. As the disease progresses, communication becomes more difficult and eventually impossible.
When decisions are made with them rather than for them, it preserves dignity and reduces guilt for caregivers down the road.
Understanding the Key Pieces
These discussions often revolve around several important documents and care decisions:
MOLST (Medical Orders for Life-Sustaining Treatment) This outlines what kind of medical interventions a person does or does not want—such as resuscitation, intubation, or hospitalization. It turns wishes into actionable medical orders. Additionally, these can be changed and updated at any time. So, if you would still like all life sustaining measures to be taken early on in the dementia journey, but verbalize that you no longer want these life sustaining measures when you are in the mid to end stages of dementia, then you (or your HCP) can update this with your doctor.
Health Care Proxy (HCP) This designates someone to make medical decisions if the individual can no longer do so. Choosing the right person is critical—they need to be able to advocate clearly and confidently under pressure. You can have your discussions with them early on, so that when the time comes that you can no longer make your needs and wishes known, they can confidently make decisions on your behalf.
Power of Attorney (POA) This allows a trusted person to handle financial and legal matters. Without this in place, families can face significant barriers when trying to manage bills, assets, or care expenses.
Hospice Care Hospice is often misunderstood. It is not about “giving up”—it’s about prioritizing comfort, dignity, and quality of life when a disease reaches its later stages. Having early conversations about hospice can remove fear and help families recognize when it’s the right time. Additionally, there are specific things that are looked at by a hospice company when looking into hospice eligibility. They follow something called the FAST Scale to confirm eligibility, so familiarizing yourself with this will help you to inquire about hospice sooner than later so that you can take full advantage of all the support available to you through insurance.
Why Families Avoid These Talks
These conversations are emotionally loaded. Many people fear:
Taking away hope
Saying the “wrong” thing
Upsetting their loved one
Facing their own grief
But avoidance doesn’t protect anyone—it delays the inevitable and often makes decisions more stressful later.
How to Approach the Conversation
Start simple. It doesn’t have to happen all at once.
Pick the right moment: Choose a calm, private time—not during a crisis.
Lead with empathy: “I want to make sure we honor what matters most to you.”
Ask open-ended questions:
“What does quality of life look like to you?”
“What would you want if you couldn’t speak for yourself?”
Normalize the discussion: Frame it as planning, not giving up.
Involve professionals if needed: Social workers, nurses, or care consultants can guide these conversations neutrally. Ember Holistic Care can assist with having these conversations and answering any questions you or your loved ones may have.
The Reality Caregivers Face
Without clear plans in place, caregivers are often left making impossible decisions in emergency situations—guessing what their loved one would have wanted. This can lead to guilt, family disagreements, and prolonged suffering.
Having these conversations early doesn’t eliminate the difficulty—but it replaces uncertainty with clarity.
Reframing the Narrative
These discussions are not about death—they are about control, dignity, and respect.
They are about ensuring that when the time comes, decisions reflect the person—not the panic of the moment.
Final Thoughts
If you’re facing a dementia diagnosis in your family, don’t wait. Lean into the discomfort now so you can avoid crisis later.
Because in the end, the goal isn’t just to care for someone—it’s to care for them in the way they would have chosen.
