Dementia Series: When You Are a Neighbour or a Friend
You may have seen a neighbour or a friend struggle with increasing cognitive decline and frailty, and you didn’t get involved until there was no doubt they were in trouble.
Unless you have been named as Health Representative, you will likely feel powerless - because you essentially are.
This discussion is about frail and cognitively impaired adults who live alone. They may have limited family involvement; they may not recognize or are in denial about their precarious situation or resist support.
Note: this article does not cover abuse. That is another topic for another blog.
Common Scenarios
There are two common scenarios:
“A dear friend of mine is no longer managing. I don’t know what to do.”
“A neighbour of mine is no longer coping. I never see any family. Someone has got to do something!” That someone and something are vague concepts in their mind.
Things to Consider Before Stepping In
If you feel compelled to step in, consider:
How close you are to that person (the further away they are from your orbit of friendships, the less likely you will feel you can or should step in)
Your own physical and emotional limitations
The amount of time you have
If there will be gratitude versus resentment or anger about your involvement.
For too many vulnerable adults, especially those who are frail with cognitive decline or dementia, there often is no one else.
Who Can I Call?
Until recently, concerned individuals could reach out to the Public Guardian and Trustee. Unfortunately, they no longer get involved in health and personal matters. There is no longer another specific agency that will get involved, and it is up to our fragmented healthcare system to pick up and carry the adult as best as possible.
Many vulnerable adults have been isolated for a long time because their family lives away or they have no family at all. Sometimes, there is family, but they are not actively involved for many reasons. Sometimes, the family is present, but they are just as stuck about what they can do. And, sometimes, it is the dementia itself with accompanying confusion, denial and paranoia that cause the adult to isolate themselves. Whatever the reason, it puts them in a hazardous situation, and you in a bind.
If the person lives alone, you actually have a chance of being able to help. However, if a spouse or family member is in denial, protective, or oppositional, their ability to create change is more complicated. You can still do things… if you’re willing to go down this challenging path.
If you read the first article in this series, you might have seen, “The adult is considered capable until they are no longer capable…”. It is the vaguest statement in the world. Case managers and social workers seem trained to say, “Adults have a right to make poor decisions.”
We may feel compelled to support the adult as best possible. The tipping point often is when they are no longer making safe decisions for themselves or others: they might have forgotten to pay their bills, and their power has been cut off, or they are wandering and lost in the street, having frequent falls, or lighting a pot on fire and potentially engulfing the whole apartment building in flames.
Anyone can reach out to:
What Else Can I Do?
There are a few other things you can do, depending on how close you are to the adult.
If you have known them for some time and you are in a position of trust, and you are just beginning to see concerning signs of cognitive decline, sit down with them and gently tell them what you have observed, what your concerns are, and say you would like to help.
If they are still in the early to moderate stages of cognitive decline if they trust you to speak for them, and only if you have the time and energy to take on the role, offer to be their Representative under a Representation Agreement Section 7. (An estate lawyer is best suited to assess and write the agreement.)
If they have a spouse, gently and carefully consider having the same conversation.
If they have family, try to find out their names and phone numbers, and tactfully reach out to them, as they are often unaware of the degree of decline. If the adult is paranoid, getting these numbers can often involve necessary deception such as, “I’m putting together a block-watch list, and I need your emergency contacts,” or, “I know you’ve got a birthday coming up. I would like to have a party for you and invite your family. Would you give me their names and phone numbers?”
If you know the name of their primary care practitioner, call and ask the medical office assistant if you can send a letter or fax regarding your concerns. (You can talk to the practitioner, but they cannot share information about the adult with you.)
Anyone can refer to the local community health branch; it doesn’t have to be from a doctor, social worker, or family member. Call and ask for “Intake,” leave the adult’s name, health number if you can get it, address, contact information, and your concerns.
If the adult is in mental or physical crisis, take them to the Emergency Department or call 911. Stay with the adult and explain what you have been observing to the paramedics and the admitting RN – and, wherever possible, the social worker. If the adult is discharged, keep making these calls until there is action because the squeaky wheel gets the grease.
In a crisis, call the emergency or non-emergency line of the police department, explain what you have been observing in as much detail as possible and ask for a ‘wellness check.’ Most municipalities now have a psychiatric nurse and officer team who attend to the situation and evaluate it. The adult should be considered under the Adult Guardianship Act.
It is a really tough position to be just a friend in situations like this, even if you might be the one most qualified to step in. Know that if you do step in, you might be saving your friend's independence, dignity, and maybe even their life.
I hope you will be the friend who steps in to help and be there until the adult is adequately housed and cared for… but there is no judgment and there should be no guilt if it is too much and you need to walk away.
