Caring for a loved one with dementia is an important responsibility, and it’s not one you can do alone. Creating a cohesive family care team is key to reducing stress and providing the best care to a loved one with dementia.
Building a solid support system is essential no matter where you are in your caregiving journey. Family members are often key members of our support systems, and including them in the care team can lead to a more collaborative and practical approach to dementia care.
Creating a cohesive family care team can reduce stress and keep you, the primary caregiver, from feeling overwhelmed by the related responsibilities. Whether family or friends, your dementia care team may contribute to a more productive, active and engaged life for both of you.
Accept you’ll need help
Caring for a loved one with a chronic condition takes a toll on the caregiver. Caregivers for those with dementia often report higher incidences of isolation and depression than other caregivers. Acknowledging that you need help caring for your loved one is the first step toward building your cohesive family care team.
Adult children often want to be involved. It’s up to you to tell them what you need. Adult children are often just waiting to be asked.
“If you are telling your adult children that everything is fine, then they think everything is fine,” said Hollie Glover, director of education and family support services. “Be honest about how things are going and what’s happening. Be honest when you need help and ask for it.”
Your need for assistance will change right along with the changes in the symptoms of the disease. Creating a cohesive family care team will provide support not only for your loved one with dementia but for you as well.
Determine needs and roles
Your care team is the group of people you will rely on to provide help, care, support and connection throughout the progression of the disease. It starts with your loved one’s physician, but there are many other roles you’ll need to fill.
Your care team should include:
- Family members, whether living nearby or across the country
- A close friend or friends
- Neighbors or others who may help with day-to-day tasks
- Your primary care physician, neurologist, counselor or other specialists
- A volunteer from a community organization, members of your church, or other social group
When building your care team, identify who in your network will be willing to help – family members, neighbors, or friends. The easiest way to determine who is willing to serve is to ask.
Some family members may initially resist getting involved due to fear, denial, or uncertainty about how to help. By showing empathy, patience, and support, you can help overcome resistance and encourage them to participate in your care team.
You have certain comfort levels around doing different things, and so will the people you ask for help. Be patient and don’t get discouraged if someone says no. See if they would be interested in assisting with something else that could really help you out.
Offering specific options with different commitment levels when asking for help can make it easier for you to recruit.
Communicate openly
Open and honest communication is critical to setting up your family care team for success, says Glover. This helps ensure that everyone in the family is on the same page and can contribute effectively to the individual’s care.
Tell adult children about the diagnosis early. Allow time for them to process the information and work through their own feelings before their assistance is needed.
Encourage them to learn as much as possible about dementia. Point them toward resources like the free caregiver education available through the James L. West Center and the local Alzheimer’s Association.
The symptoms change, sometimes frequently, throughout the disease. Understanding what’s happening to the brain and coping strategies can help smooth the transitions.
Alzheimer’s and dementia support groups are a tremendous resource for the whole family, not just the primary caregiver. The James L. West Center offers support groups several times a week in both in-person and virtual formats.
Keep adult children updated regularly. Invite them to visit frequently and spend quality time with you and your loved one. Spending time with beloved family members can improve the overall quality of life for the person experiencing dementia.
Talk openly about your and your loved one’s wishes to ensure everyone knows your preferences about end-of-life choices. Bring the family together to discuss care needs and make decisions together.
Handling healthy conflict
Opinions and emotions run high when family members face a difficult diagnosis like dementia. To navigate through conflicting views and feelings, it is essential to prioritize the well-being of your loved one with dementia. Be open to compromise and find common ground to provide the best care possible.
Have regular family meetings. When major care decisions need to be made, involve the family care team. Talk through pros and cons, financial considerations and possible alternatives together. Taking the thoughts and opinions of the whole team into account will help avoid hard feelings, grudges and resentments.
To manage conflicting opinions and emotions effectively, keep the lines of communication open. Use “I” statements to express your thoughts and feelings. Avoid blaming or criticizing others. Practice active listening and give full attention to others when they are speaking. Show empathy.
If the conflict cannot be resolved, consider bringing in a mediator or a professional counselor to facilitate discussions and help reach resolutions that benefit everyone involved.
Remember that everyone aims to provide the best care and support for your loved one with dementia. Respect each family member’s input and ideas.
Encouraging family members to take an active role in the care can help distribute responsibilities and foster a sense of teamwork. Family meetings, open communication, and involving family members in critical decisions promote a collaborative approach to care.
Resources for Family Caregivers
With the James L. West Center as a resource for information and support, families can feel empowered and prepared to care for their loved one with Alzheimer’s or dementia as part of a cohesive family care team.
Learn more about educational offerings and support groups at the James L. West Center for Dementia Care.
