By: Dr Daphna Grossman
When we talk about dementia, there is so much to talk about.
We talk about safety.
We talk about the enormous burden on care-partners—the countless hours of caregiving, the physical and emotional exhaustion, and often the financial strain.
We talk about how difficult it can be to keep someone at home when home care support is limited and families cannot afford to hire private caregivers.
And we talk about what happens when staying at home is no longer possible. There are limited long-term care beds with wait times as long as years. Palliative care units (PCU) are often not options because despite the burden of care at home, prognosis is often longer than the 3 months required for PCU admission.
But there is another important gap in our care of people living with dementia: we don’t always talk about what lies ahead early enough.
For people living with other chronic illnesses such as advanced cardiac or lung disease, they are aware of the burden the illness puts on them and therefore can evaluate their wishes for medical interventions and make decisions for themselves, even in the advanced stages of their illness.
Dementia is totally different.
In the advanced stages of dementia, the person can no longer appreciate the burden of their illness, and they can no longer make medical decisions for themselves. This leaves family and care-partners struggling to make medical decisions on their behalf.
People think dementia is only about memory loss. But as the illness progresses it causes so many other issues. Dementia affects communication, mobility, eating and swallowing. Dementia exemplifies the connection between the mind and the body. An acute illness accelerates dementia and dementia makes a person more susceptible to illnesses such as infections and less responsive to treatment.
Yet many families are not prepared for this.
They may not realize that eventually they could be asked to make decisions about feeding, hospitalization, antibiotics, procedures, or other medical treatments when their loved one can no longer tell them what they want.
And by the time these decisions arise, it is too late to have the conversation with the person who matters most.
We need to talk about what dementia can look like as it progresses—how it can eventually affect communication, relationships, physical abilities, eating and swallowing, and the ability to participate in healthcare decisions.
These conversations need to happen early, while the person diagnosed with dementia is still able to tell us what matters to them.
This isn’t about asking someone to predict every medical decision they will ever face.
It is about understanding the person behind the diagnosis.
What makes life meaningful to them?
What would they consider an acceptable quality of life?
What are they most worried about?
What would they hope their family understands if they can no longer speak for themselves?
And who do they trust to make decisions for them?
These conversations can be very difficult.
But making a decision on behalf of someone else when you have no idea what they would have wanted…
That is even more difficult.
