“Family caregiving is not simply about caring for the person who’s receiving care, it’s also about caring for everyone in the family through this whole process.” Dr. Barry Jacobs
Are you struggling to pull your family together to create a working support system for someone living with dementia? Do you find family members disagreeing on what needs to be done or how to help? You’re not alone, and there’s a path forward.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned that transforming family dynamics into effective teamwork is one of the most challenging — yet most rewarding — aspects of the caregiving journey.
We spoke with Dr. Barry Jacobs, a clinical psychologist and family therapist who brings both professional expertise and personal caregiving experience to this conversation. Barry cared for his mother with vascular dementia and his stepfather with Alzheimer’s disease for seven years. Barry co-authored the AARP Caregiver Answer Book with his wife, psychologist Julia Mayer.
This content aligns with Step 8 of our Navigating Dementia Caregiving Roadmap: Start Planning for the Next Stage of Care — particularly when building your personal support network of family and friends.
We’re exploring four essential tips for transforming your family into an effective caregiving team.
Tip 1: Create Consensus
The first major challenge families face is agreeing something needs to be done. One of the biggest obstacles to creating consensus is the uncertainty around the dementia diagnosis — it can be difficult to discern what are normal age-related changes versus something more pronounced.
Why family members often disagree: Family members have very different perceptions and experiences with their loved one. The daughter living close to Dad who sees him every day notices the cognitive slippage — he doesn’t recall things as well, can’t organize like he used to, and struggles with tasks that once came easily. Meanwhile, her brother, who lives an hour away and calls once a week for 10 minutes, may not see these issues at all. During those brief calls, Dad can hold himself together pretty well.
When the daughter says, “Let’s have Dad evaluated,” and the brother responds, “Dad doesn’t need an evaluation — you’re always an alarmist.”, conflict begins before caregiving even starts.
How to build consensus:
- Share as much information as possible. Don’t spend time trying to convince skeptical family members. Share as much information as possible with everyone. For example, share every medical office visit summary, MRI report, and blood test result. Let family members calculate what they’re seeing from the same information.
- Encourage extended time together. Suggest that distant family members spend several hours with your loved one — watching a football game, going somewhere together, or hosting them for a weekend. Ten-minute phone calls aren’t enough to get an accurate impression.
- Be patient. Consensus builds over time with more firsthand experience and information sharing. The sooner you begin building consensus, the more supportive it will be as the journey continues.
Keep in mind: Consensus doesn’t mean everyone agrees completely. Consensus means everyone is on the same page that something needs to happen.
Tip 2: Define an Ongoing Format for Decision Making
Talk together as a group: Once you have some consensus, it’s essential that families talk together as a group. This isn’t accomplished through “whispering down the lane”, where one person tells another who tells a third person.
Establish regular family meetings: Dr. Jacobs recommends that families initially meet at least quarterly, ideally in person or via video platform. Set aside a good hour or two to:
- Share information about what’s happening
- Discuss what your loved one needs
- Plan how you can help as a group
- Check in on what’s working and what isn’t
- Share concerns
- Talk about how needs are changing as the condition progresses.
Include your loved one early on: If your loved one has already been diagnosed and is still in the early stages, they may want to attend these meetings. They have the biggest stake in these conversations and can share their wishes — such as hoping to live in their home for as long as possible.
Check in on individual capacity: Part of these quarterly meetings should include each person indicating:
- What they are willing to do
- What they are available to do (considering their own life circumstances)
- What they are able to do (physically and practically)
- Their boundaries of what they won’t do.
The hidden benefit: When these planning processes go well, they do much more than help your loved one — they strengthen family relationships. Siblings who may have lived separate lives in different parts of the country find themselves collaborating on an extremely important project. These strengthened bonds can last long after caregiving ends.
Nancy shared how 25 years of supporting her parents through her father’s Parkinson’s journey transformed her relationship with her sister from friends and sisters to best friends. Sue described how quarterly meetings with her husband’s adult sons helped them all stay in alignment, even when they lived in different states.
Without Consensus: If these meetings don’t go well and families don’t learn to make decisions together, it can create lasting schisms that make the pain of loss even harder.
Dr. Jacobs shared a painful example from his own family. When his father had brain cancer as a teenager, a terrible schism occurred between his mother and grandmother about treatment decisions. They stopped talking to one another for about 20 years until his grandmother died, making the pain of his father’s loss much harder because the family was torn in two.
Tip 3: Build a Family Caregiving Plan
Once you have regular meetings established, the next step is putting together the nuts and bolts of an actual plan.
What goes into the plan:
- Who is going to do what
- When they’re going to do it
- Clear commitments that everyone understands and can hold each other accountable for before the next meeting.
Keep it documented: Take notes during meetings (or use an AI app to keep notes). These notes become a working agreement — not a legal contract, but a basic understanding of commitments. Everyone listens to what each person is committing to and can refer back to these notes.
Make it a living document: Your Family Caregiving Plan should be constantly revised and updated at each meeting as:
- Your parent’s condition progresses
- Family circumstances change
- New needs emerge.
It’s important for the plan to reflect the current reality, while also anticipating what may be coming down the road. This ongoing revision process ensures the plan remains practical and sustainable.
Tip 4: Plan to Deal with Conflict
Throughout this entire process, there’s significant potential for conflict. It’s important to distinguish between disagreement and conflict.
Disagreement versus conflict:
- Disagreement is a natural part of families — people have strong feelings about what a parent needs.
- Conflict is when disagreements turn disrespectful — voices are raised, accusations are made, feelings are hurt.
Disagreement is fine and even healthy. Conflict weakens families in the present and long after caregiving is over.
How to handle disagreement respectfully:
Family members must respect each individual’s decisions about what they’re willing to commit to. Conflict often occurs when one family member feels another should be doing more or doing something different.
Every individual makes their decision based on three factors:
- Availability: How much time do they have? Can they get time off work?
- Ability: Can they physically do the tasks being asked? Can they handle insurance forms or other administrative work?
- Willingness: Have they had a relationship with the parent that makes them willing — or not willing — to do what’s being asked?
When each family member respects every other family member’s determination of their availability, ability, and willingness, conversations remain respectful — even when there’s disagreement.
When to bring in a facilitator:
If conversations become really heated, abusive, or threatening to fall apart, consider getting a facilitator. This could be:
- A trusted friend
- A religious leader you all know and respect
- A professional like a psychologist or family therapist.
A facilitator acts as a referee, ensuring people speak respectfully and — more importantly — truly listen to one another instead of simply reacting. A good facilitator slows the conversation down so people can better take in what each person is saying, making it easier to negotiate differences without sliding into lasting conflict.
The stakes are high: When family members are kind and respectful to one another, relationships are strengthened for years after the parent dies. When people point fingers and lapse into conflict, it leads to schisms that also last for years.
Moving Forward Together
Transforming your family into an effective caregiving team isn’t easy. It’s worth the effort — not just for your loved one with dementia — but for every member of your family.
These four tips provide a framework:
- Create consensus (everyone on the same page).
- Define an ongoing format for decision making (regular meetings with clear rhythm).
- Build a family caregiving plan (who does what and when).
- Plan to deal with conflict (don’t let disagreements become disrespectful).
Everything discussed in this blog post including running effective meetings, dealing with siblings, and managing conflict — and other topics — are covered in detail in the Jacobs’ book, the AARP Caregiver Answer Book. It contains 150 questions and answers about all aspects of family caregiving and is available at major book outlets and through www.caregiveranswerbook.com.
Family dynamics can be one of the hardest aspects of dementia caregiving to navigate. When you approach it with intentionality, respect, and regular communication, you can create a caregiving team that both supports your loved one and strengthens family bonds for years to come.
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