All families have patterns and processes developed over time and lived out repeatedly. When a family member is diagnosed with dementia, those family dynamics play a role in how family members react.
A dementia diagnosis is like dropping a boulder into the middle of a family – there are ripple effects that impact everyone in the individual’s life from spouses and children to friends and acquaintances.
“Dementia impacts everything about your loved one’s life,” said Hollie Glover, director of education and family support services at the James L. West Center for Dementia Care. “Unlike other diseases, the impact of dementia diagnosis is considerable. Impacts the person and everyone in their life.”
Understanding dementia
Although memory loss is most commonly associated with dementia, there is a wide range of symptoms including difficulty with mental tasks, confusion, language challenges, communication issues, hallucinations and sleep disturbances.
“Dementia is an irreversible, permanent, progressive, terminal disease,” Glover said. “Dementia is not a normal part of aging. Everyone’s experience will be different based on their age when they begin to have symptoms, comorbidities, environment, et cetera.”
The progression of dementia happens over years, which means families are often in it for the long haul.
Introducing family dynamics
Wanting to keep a loved one at home is the No. 1 reason caregivers give for deciding to be a caregiver, followed by keeping their loved one near familiar places and other family members or friends. Obligation is the third reason given.
Even though most say caregiving is rewarding, caregivers often suffer from extreme emotional, financial and physical challenges. Dealing with unhealthy family dynamics can add to the anxiety, depression, high emotional stress and physical health problems caregivers experience.
“Somebody taught you how to brush your teeth, change your clothes, and bathe,” Glover said. “Did anybody teach you emotional hygiene? Did anyone teach you how to deal with your feelings and emotions, or did you learn from observing what the adults were doing?”
Children don’t know what’s healthy or unhealthy in the way people relate to one another, and as adults often fall back into the roles they developed when they’re with their family.
Common family roles include:
- The Peacekeeper attempts to keep the peace between everyone no matter what is going on.
- The Scapegoat is the one who is known as the “problem child” or the “difficult one.”
- The Caretaker tries to placate chaos as much as possible and is often an enabler.
- The Mascot or Clown uses humor, achievements, talents or personality to ease the stress and divert attention away from difficulties.
- The Hero overachieves as a way of overcompensating for difficulties and works to create a sense of normal.
- The Lost child keeps quiet and to themselves to avoid drawing attention.
When stressed, we often fall into these patterns of behavior, even if we’ve worked hard to break the patterns. We may anticipate issues and ready ourselves for confrontation, opening the door to slip back into that familiar role.
Dementia and family dynamics
Every relationship has patterns and processes they follow. Everyone who knows the person with dementia is part of the overall family dynamic.
Changes affecting family dynamics and family members’ roles change the rules. A dementia diagnosis changes family rules. This can cause family members to act out of grief, fear, or anger.
Dealing with big emotions and stressful situations often enhances negative family dynamics.
“Just because the pattern is familiar doesn’t mean you have to relive it,” Glover said. “You don’t have to go back to the role you used to play, and other people don’t either.”
There is a lot of grief and loss that goes along with caring for a person with dementia. The feelings come in waves and show up physically, emotionally, spiritually, professionally and socially.
“Grief is unexpected, unpredictable and personal,” Glover said. “We may have some folks who are in denial about what’s happening with our loved one because they aren’t around, or we haven’t told them what’s going on.”
Managing family dynamics in dementia
“You can’t change others, but you can change your pattern,” Glover said.
If you stay aware of what is going on around you, you can better control your response to it. If you expect the best, you approach the situation with more energy and positivity.
“The difference between a reaction and a response is a single deep breath,” Glover said.
Deep breathing is one technique the James L. West Center’s education team promotes in their stressbuster class for caregivers. Taking a deep breath before acting or speaking gives you time to adjust your thinking and prevent a release of the stress hormone cortisol.
Controlling your response can help create a safe space for communication. Offer education on what’s happening and what will happen as the disease progresses and normalize the disease. Validate the other person’s feelings.
“The way each person responds to the news of the dementia diagnosis will be different because their relationships are different. Don’t expect others to react the same way you do,” Glover said.
Handling conflict
Conflict will happen.
“Conflict is just people seeing things differently,” Glover said. “It’s not inherently bad, but there are those of us who want to avoid it at all costs.”
Viewing conflict as an opportunity to learn about another person’s point of view can reframe our response to it. If you stay in the driver’s seat and set aside your perspective to learn about theirs, you can keep the conversation from becoming defensive.
Be curious about their views, but don’t challenge them. Ask questions, then listen attentively with your undivided attention. Empathize even if you don’t agree and reflect on them to show you heard them.
And finally, be willing to accept your part in the conflict.
The James L. West Center for Dementia Care offers free education courses for family caregivers, such as “Family Dynamics in Caregiving: Coping with Conflict and Engaging Family Members in Care.” The Education Calendar lists upcoming events, and past programs can be viewed online.
Read more about Asking for Help with Caregiving and Caregiver Health.
