Family Caregiver Guide
Care Decisions: Walking the Same Path, Looking in Different Directions
Living with neurodegenerative diseases like Alzheimer’s or Parkinson’s often becomes a challenging test for families—even more than for the patient themselves. Navigating the slowly changing, sometimes unrecognizable world of your loved one requires not just patience but also strong solidarity. Yet, in many families, disagreements emerge at the most sensitive crossroads: “What should we do, how should we proceed, which care option should we choose?” During this difficult time that no one is fully prepared for, care decisions can sometimes lead to family conflicts, emotional pain, and even a breakdown in communication. So, what should you actually do, and above all, how should you feel?
What Are the Root Causes of Disagreements?
When families have differing opinions about care decisions, it's not always due solely to a lack of communication. Here are some common causes of disagreements:
Emotional Burden: Everyone experiences loss and copes with anxiety differently. Some want to stay by the patient's side, while others see a care facility as a safer option.
Personal Values and Beliefs: Some family members see in-home care as a traditional or spiritual obligation, while others believe professional help is essential.
Level of Knowledge and Awareness: Lack of information about disease progression, care requirements, and available options can be the basis for poor decisions or biases.
Financial Concerns: Budget planning and sharing the economic burden often become central to family disagreements.
Common Disagreements in Care Decisions
Research shows that families dealing with diseases like dementia and Parkinson’s most frequently disagree in the following areas:
Home care vs. institutional care
Medication and treatment choices
Who will be responsible for caregiving
Meeting daily needs (dressing, nutrition, hygiene)
Financial matters and sharing resources
For example, a Canadian care study (Canadian Journal on Aging, 2018) reported that 43% of families of individuals with dementia experienced at least one serious disagreement regarding care options; this rate was even higher for those needing intensive care.
First Step When Disagreement Arises: What Are We Really Opposing?
During crises, feelings of anger and resentment may mask deeper emotions. Sometimes the weight of responsibility or fear for the future comes across as a differing opinion. Recognizing your own feelings and those of other family members is the first condition for healthy communication. In this sense, taking a short break and asking “What is our actual concern, why are we so sensitive?” can be healing.
"It’s very easy to lose sight of the real focus while trying to make decisions together: Protecting our patient’s comfort, safety, and dignity."
Scientific Perspective on Brain Health and Care
As brain diseases progress, the individual's ability to express themselves and make choices typically decreases. From a scientific standpoint, in moderate to advanced stages of Alzheimer's disease, decision-making capacity is lost by more than 60% (Alzheimer’s Disease International 2020 data). Therefore, considering the patient’s past values and habits in care decisions is ethically important. However, the abrupt changes brought by the disease make it hard for loved ones to adapt; some disagreements stem from this "grey area."
Creating a Positive and Safe Ground in Disagreements
Open Communication: Avoid accusatory sentences that start with "You," and instead clearly share your feelings and thoughts. Phrases like "I think" or "I feel" are much more constructive.
Find Common Ground: In reality, everyone shares the same concern: What is best and safest? Focusing the discussion on this common goal helps ease tension.
Break Big Decisions Into Smaller Steps: You don't have to solve everything at once. For example, discussing a weekly care plan first can be a solid foundation for broader decisions.
Seek External Support: Getting help from a professional (e.g., social worker, psychologist, physician, or patient organizations) can often be crucial in resolving conflict. Research also shows that families who receive counseling experience fewer care-related conflicts.
Make Room for Emotions: Allowing space to talk about grief, anger, fear, and guilt, rather than suppressing them, can help soften disagreements.
A Realistic and Compassionate Approach
Siblings who haven’t seen each other in a long time, spouses living in the same house, family members contributing from afar… Everyone’s life and caregiving capacity are different. Being compassionate does not mean agreeing with every opinion. However, accepting what the other person is experiencing helps prevent the relationship from being damaged. Saying, “I’m sorry you feel this way,” can reduce the tension in a disagreement more than we might expect.
Sharing Responsibility in Care: Small but Effective Steps
When the burden of care falls on just one person, it can lead to both physical and emotional burnout. Numerous studies show that in families who share responsibilities, both the quality of care and the level of conflict improve. Concretely:
You can create a care schedule and clarify who is responsible on which days.
You can assign weekly tasks to all family members—even by phone; for example, “Who is responsible for supplying medications?” or “Who will track the bills?”
Remember, asking for support is not a weakness; it’s a step that fosters love and solidarity.
Do Disagreements Last Forever?
Over time, most families manage to establish a healthier collaboration after the initial major disputes. Having a mindset open to change is all that’s needed. Separating old resentments from the resolution process, and letting go of the expectation to "start from scratch" each time, makes things easier.
Sometimes, however, certain topics (e.g., end-of-life care) may never be fully resolved by consensus. In such cases, it’s possible to "put the issue on hold" or revisit it later. Saying, “We are not ready to decide right now,” is also a decision, and gives the family some breathing space.
The Emotional Burden Caused by Conflict
60% of caregivers report increased feelings of anxiety, guilt, and loneliness during periods of frequent disagreement (Journal of Geriatric Psychiatry, 2022). Excessive self-criticism often makes things harder in these situations. At such times, reminding yourself, “I am doing my best,” is both healing and empowering.
Throughout the long care journey, you will make peace with some issues and not with others. However, goodwill, openness, and a common goal are powerful enough to mend any rift. Remember, your love and effort may often go unseen, but they are the strongest bonds of all.
Brief Summary: What Can You Do When You Disagree?
First try to understand emotions, then share your views.
Invite all parties to communicate openly.
Seek help from a professional if needed. This is not a failure, but a shared need.
Divide big decisions into small steps.
Share responsibilities and tasks. Every contribution matters.
Don’t forget to show compassion to yourself and others.
Care decisions are a part of life, and so are disagreements. Wishing you a journey where you grow together, learn, and keep listening to one another.
Resources
Alzheimer’s Disease International (2020). World Alzheimer Report.
Canadian Journal on Aging (2018). Family Conflict and Decision-making in Caregiving.
Journal of Geriatric Psychiatry (2022). Emotional Effects of Family Disagreement during Dementia Care.
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