Relational Disruptions in Dementia

By Rick Bergh M.Div., CT NT  |  Executive Director  |  Voices in Motion  |  Bereavement Counsellor

She said to me, “When I joined Voices in Motion, we found a place that gave us new friends to replace the ones that had left us.”

Following a dementia diagnosis, you might experience a change in your existing relationships with friends, family, neighbours and colleagues.

People around you may not know how to respond to you or your family. Or they may be absent. They used to stop by for a visit but now they don’t. They stop calling. The invitations to parties, coffees and suppers have stopped.

This is difficult to understand especially since you need more support and a listening ear more than ever. You are trying to manage the transition and now others are acting or responding in a way that is not helpful.

As one of our choristers, Michael Phillips, said in the video about his wife Isabel, “Why hide it? It’s pretty obvious. So forget the stigma stuff. Live your life. Find out who your friends are. Most people want to help. All of it is education. People want to help. Tell them how they can help. Don’t be afraid to ask.”

Michael’s absolutely right: All of it is education.

Giving people a language to speak about dementia and permission to talk about what’s happening leads to de-stigmatization.

Many people seem to search for the words to explain what is happening to them, how they are doing and what they need from us. At first, they may not know what they need, because they’ve never experienced it before – it’s all new.

That’s why it is important to reach out to find resources like those provided through the Alzheimer Society or try to find others who understand and make a wise decision to join a dementia choir like Voices in Motion.

However, no two scenarios are identical. There are numerous types of losses that accompany a dementia diagnosis and journey.

Some of those losses are relationships that change. This might be a very emotional adjustment as some of those relationships may have been significant. You counted on them in the past and now those same people are distant. Your support system appears to be disappearing.

There are a couple of important considerations when this happens.

First, remember that everyone who is close to you is trying to understand this new part of your life. You’ll need to cut people some slack. Give some grace to those who need some space to figure this out.

Secondly, if these people are an important part of your life and their absence is bothering you, you may need to be proactive. Even though you may be saying to yourself, “They should be coming to me, not me to them!” You do have a choice. The relationship might change, but you can respond pro-actively. If it’s important to you, you can pursue the relationship. Even though it might take a little effort on your part.

Here are a few questions to help you sort out any relational reactions that have taken place as a result of what you are now experiencing as a caregiver or a person with dementia:

  • What relationship is different now that your loved one has been diagnosed?
  • What is different about that relationship that concerns you?
  • Is the relationship important for you to continue? Why?
  • Is there something that you would like to say to this person that might help restore this relationship to its prior significance?

If a specific relationship has changed and it’s keeping you up at night, a simple conversation with an introduction like suggested below might be helpful.

Try to avoid giving the person “a piece of your mind.” That just leads to further ostracization.

This takes courage. But you will be empowered once you take that step.

Could you ask this question? “You are an important part of our lives. We feel distant from you since the dementia diagnosis. But I wonder how we can share this journey together?”

 It’s not always as simple as this, but sometimes courageous conversations need to happen in order to understand the relationship:

  • Do they want to be part of our lives?
  • Do they know how they can best help?
  • Are they wondering how to communicate with us?

Remember all relationships are different and you will need to be prepared to let some of those relationships go or change as result of this new “shift” in your life.

Relational reactions to a loss are important to think about – sooner rather than later – because we need people in our lives.