ACP with Cognitive Decline and Dementia
It always seems too early until it's too late.
The healthcare system will do everything in its power to get the adult’s consent for treatments and procedures or withdrawal of treatment. In order for Advance Care Planning documents to be enacted, the adult will have to be very seriously ill (and likely requiring powerful pain medications), seriously injured, or in a state of advanced cognitive decline (dementia).
This can leave adults with mild to moderate cognitive decline – especially those with an undiagnosed decline in their executive function abilities (ability to foresee consequences, pay their bills, get their own groceries and manage their medications) – in potentially life-threatening situations.
Vulnerable adults must have someone to advocate for them. It is vital to put a Representation Agreement in place prior to loss of capability… even if you are the spouse or the adult child.
We often hesitate to have these difficult discussions with our aging elders because it may seem unkind to suggest to the person we love that they are losing their mental ability. We are often afraid when we see the clues and the symptoms, and then hear the diagnosis.
Listen for cues from your loved-one, as to when and if they would want this discussion.
Think back to discussions that might have come years before, such as:
“I don’t ever want to get like [my father].” Your response might be: “Tell me more about that dad? What would you want to happen if you were diagnosed with dementia?” Then start to gently dig into the conversation. Consider doing the Values and Beliefs homework with them.
“I am so tired of all of this. I’m just done.” Your response might be, “I’m sure you are tired, mom. Your body has been through so much lately. Tell me more about how you’re feeling. I would like to support you in any way I can.”
These conversations generally take time and will grow and develop after the door has been opened. In the case of cognitive decline, be proactive in keeping the conversations going, especially when you see evolving changes to your loved one’s health, especially if you observe further cognitive decline.
A special note for spouses: We often assume that we know what the other’s values and preferences are but we often get it wrong. We are also often unaware of subtle changes. These are the most important conversations to have.
Put copies of your ACP documents on or beside your fridge – or a clear note on your fridge where they can be found! Have originals readily available: if you are going to put them in a safe deposit box, your Representative must have access.
Patient Pathways provides one-on-one support in helping patients access BC healthcare services and determine Advance Healthcare Directives. See our Services and Fees.
