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Locus of Control: What You Can and Cannot Change in Dementia Caregiving

When dementia takes over so much of your loved one's life and your own, it can feel like you have no say in anything. This article helps you understand the concept of 'locus of control' and shows you exactly where your power still lives. You will learn concrete steps to shift your focus from what you cannot change to what you can, reducing overwhelm and helping you feel more capable and less stuck.

Key points

  • You cannot control the disease, your loved one's behavior, or other people, but you can always control your own response.
  • Focusing on what you can control reduces anxiety, depression, and helps you make better decisions.
  • Use the 'next right step' question to break down overwhelming situations into one small, doable action.
  • Guilt can be a positive motivator if you use it to change your behavior; let go of guilt that keeps you stuck.
  • Self-care is not optional. If you do not take care of yourself, you cannot care for your loved one.
  • It is okay to set boundaries and to decide that a different care arrangement is needed for your health.

The Core Idea: Internal vs. External Locus of Control

In caregiving, it is easy to fall into a pattern of thinking that everything is outside your control. You cannot stop the disease, you cannot make your loved one understand, and you cannot control how other family members act. This is called an 'external locus of control' — believing that your life is mostly shaped by outside forces. Research shows that when caregivers stay in this mindset, they tend to feel more anxious, depressed, and have a harder time making decisions. It makes the entire caregiving journey much harder than it needs to be.

On the other hand, an 'internal locus of control' means you recognize that while you cannot control the circumstances, you can always control how you respond to them. This is not about pretending everything is fine. It is about noticing your worry and fear, but then choosing to focus your attention on something you can actually do. For example, you cannot control the fact that your loved one is sundowning, but you can control whether you respond with frustration or with a calm, redirecting activity. This shift in focus is a powerful tool that can lower your stress and improve your ability to care for both your loved one and yourself.

Why This Matters for Your Stress Level

If you do not change anything about how you approach caregiving, your stress level will likely get worse over time. Many caregivers start with a certain level of stress, and without actively taking control of their own responses, that number tends to climb. The good news is that you can learn to take control of your experience. You can decide how you want to feel, how you want to respond, and how you want to look back on this time. This is not about being perfect; it is about making small, intentional choices that protect your health and your relationship with your loved one.

Guilt often plays a big role here. You might feel guilty for not doing enough, or for feeling angry. But guilt can be a positive motivator if you use it to change your behavior. For example, if you overreacted and yelled, you can forgive yourself and decide to do differently next time. But if you let guilt become overwhelming and unproductive, it will keep you stuck. Accepting what is happening — including your own feelings — is the first step to moving forward and solving the real problems you face.

General caregiving information, not medical advice. Check medications and major care changes with your clinician.

Step-by-step

  1. Pause and name what is outside your control: disease progression, your loved one's behavior, other family members. Say it aloud or write it down.

  2. In any difficult moment, choose your response. If your loved one is agitated, respond with a calm voice and gentle redirection instead of matching their frustration.

  3. Identify your next right step right now, not the whole day. If exhausted at 1:15 AM, the step is to go to bed.

  4. Set a boundary with yourself about what you will not take on. Learn to say no to responsibilities that exceed your capacity, such as a family dinner request or volunteer commitment.

  5. Use guilt as a motivator, not a trap. Ask: 'Is this guilt productive (prompting a behavior change, like apologizing) or destructive (keeping me stuck)?' Forgive yourself and move on.

  6. Create a daily anchor ritual: one small, consistent practice like drinking tea in silence for five minutes or listening to one song.

  7. Give yourself permission to step back when overwhelmed. If the current care arrangement is destroying your health or marriage, explore hiring help or memory care.

What not to do

  • Do not try to control your loved one's behavior or force them to understand. Focus on your own response and the environment you create.

  • Do not stay stuck in guilt or resentment. Accept the situation, forgive yourself, and take one small action toward a solution.

  • Do not neglect your own health because you feel you cannot take a break. If something happens to you, your loved one loses their caregiver.

  • Do not try to do everything alone. Reach out to community programs, workshops, or professional services for even a few hours of help a week.

Practical tools

  • The 'I Can Control' Checklist

    Write two columns: left column for what you cannot control (disease, loved one's mood), right column for what you can (your response, self-care, whether you take a break). Refer to it when feeling powerless.

  • The 'Next Right Step' Question

    When overwhelmed, ask: 'What is the next right step for me right now?' If exhausted, rest. If in a difficult interaction, take a deep breath and say, 'I need a moment.' Keep this question on a sticky note on your mirror or fridge.

  • The 'Permission to Step Back' Script

    Use: 'I need a few minutes to take care of myself. I will be back soon.' Say it calmly and firmly, then walk away. This protects your ability to care for your loved one.

  • The 'Productive Guilt' Question

    When guilty, ask: 'Is this guilt helping me change my behavior for the better, or just making me feel stuck?' If productive, make a plan to do differently. If destructive, say: 'I forgive myself. I am doing the best I can.' Then let it go.

  • Boundary-Setting Phrase

    When asked to take on more than you can handle, say: 'I care about you and want to help sustainably. Right now I can do [specific thing], but I cannot take on [specific thing].'

Discuss with your clinician

If you are experiencing severe anxiety, depression, or thoughts of harming yourself or your loved one, discuss this with your doctor or a mental health professional immediately.

If you are considering medication to help manage your own stress or sleep, talk to your clinician about options that are safe for you.

If you are unsure about the stage of your loved one's dementia or what to expect next, ask their doctor for a clear assessment and care plan.

If you are struggling with physical health issues due to caregiving (e.g., high blood pressure, exhaustion), discuss this with your primary care provider.

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