Taken care of a loved one with brain issues

Caregiver Research 


  1. Common mistakes caregivers make and how to avoid them
    1. Mistakes commonly made
      1. Don’t: Ask “Do you Remember?”
        1. Can be anxiety provoking and disheartening if they do not remember 
        2. Do: re-introduce people regardless of how close they are
      2. Don’t: Correct Facts
        1. Arguing with them about incorrect facts will not help and may cause confusion/anger
        2. Do: Just agree and change the topic
          1. If they are acting out, distract them with another topic or a task to do to get them to focus on something else 
      3. Don’t: Avoid the Past
        1. Pleasant memories can help lessen the load when things begin to get heavy
        2. Do: Ask them what they liked to do as a child, listen to music from their past, and/or go through photo albums 
      4. Don’t: Believe You Should Never Get Upset
        1. It is okay to be annoyed → all feelings are normal/valid 
        2. Do: If you get upset/annoyed and no one is available to give you a break, try to step back, take a few deep breaths, and remember that what you are feeling is valid and completely normal. We are all human and even our loved ones can get under our skin. 
      5. Don’t: Forget to Laugh/Feel bad for enjoying your life
        1. Don’t feel guilty for laughing or experiencing happiness
        2. Do: Although the patient may not understand what is going on, just hearing someone laugh or seeing someone smile may lighten their mood 
      6. Don’t: Ease Off on Physical Activity
        1. Staying physically active is important for both patient and caregiver
          1. Benefits both physical and mental health
        2. Do: Take them on walks/get them moving even if it’s just around the house. Have them complete tasks like putting dishes away, gardening, or cooking simple recipes (with supervision of course)
      7. Don’t: Hide the Illness from Friends and Neighbors
        1. Do: Share the illness with them. They can act as another set of eyes or a helpful presence if something ever goes wrong 
          1. The more people know, the more they can help 
      8. Don’t: Refrain from Asking for Help
        1. Do: Allow others to help you, and ask for help when feeling overwhelmed. Caregiving is a 24/7 job and is both physically and mentally taxing, no matter how much you love the individual
          1. Be direct with your needs, some may not know how to help
      9. Don’t: Refrain from Taking Time for Yourself 
        1. Your effectiveness as a caregiver decreases if you are not taking proper care of yourself
          1. Similar to putting on your oxygen mask on first before helping others 
        2. Do: Take breaks throughout the day (even if only for a couple of minutes). Participate in activities that make you happy/help you relax
      10. Don’t: Make Promises You Might Not Be Able to Keep 
        1. Many promise their loved ones that they will never “put them in a home”
          1. Sometimes this is necessary, both for the patient and the caregiver
        2. Do: Be honest/realistic both with the patient as well as with yourself (Say that you will always do what is best for them, even if they may not see it that way) 
    2. Often times both caregivers and patients have trouble accepting the severity of the illness
      1. May lead to ignoring/dismissing the person’s symptoms, which is not helpful 
      2. Denying their symptoms may lead to a delay in them obtaining medical attention while also impairing your own mental and emotional adjustment to your loved one’s needs 
  2. Strategies to help caregivers avoid burnout and feelings of frustration (towards themselves and those they are caring for)
    1. Caregiver Burnout: a state of physical, emotional, and mental exhaustion
      1. May be accompanied by a change in attitude, from positive and caring to negative and unconcerned. May experience fatigue, stress, anxiety, and depression 
      2. Burnout occurs when caregivers do not receive the help they need or if they try to do more than they are able (either physically or financially)
      3. Other factors that can lead to burnout: role confusion, unrealistic expectations, lack of control (over situation), and unreasonable demands
    2. Symptoms of Burnout
      1. Withdrawal from friends, family, and other loved ones
      2. Loss of interest in activities previously enjoyed
      3. Feeling sad, irritable, hopeless and helpless
      4. Changes in appetite, weight, or both/changes in sleep pattern
      5. Getting sick more often
      6. Emotional and physical exhaustion 
    3. How to Avoid Burnout:
      1. Find someone you trust to talk about your feelings and frustrations
        1. Can also turn to a support group (local organizations may provide these) → can also provide time away from the patient 
      2. Set realistic goals and accept that you may need help with caregiving 
        1. Delegate tasks between yourself and others 
        2. Know your limits and be honest with yourself about your personal situation
      3. Be realistic about your loved one’s disease → acknowledge when the patient may require nursing services or assisted living 
      4. Take time for yourself 
        1. Taking care of yourself is not a luxury. Rather, it is an absolute necessary for caregivers 
      5. Talk to a professional (therapists, social workers, and clergy members)
        1. Develop new tools for coping → use humor to help deal with everyday stresses 
      6. Educate yourself → the more you know about the illness, the more effective you will be in caring for the person with the illness
      7. Stay healthy by eating right and getting plenty of exercise and sleep 
      8. Accept your feelings
        1. Having negative feelings about your responsibilities of the person for whom you are caring is normal
        2. It does not mean you are a bad person or a bad caregiver
    4. Feeling angry/frustrated/guilty is natural and valid. These emotions are human and unavoidable. If possible, remove yourself from the caregiving role whenever these feelings crop up or take a few deep breaths and remind yourself of the importance of your role if you cannot get away.
  3. Deescalating an outburst caused by feelings of frustration/anger
    1. Causes:
      1. Physical Discomfort
        1. May have an infection that they are unable to articulate or identify due to loss of cognitive function
        2. They might be tired or hungry/thirsty
        3. Their medications may also be causing side effects, especially if their are taking multiple medications at once 
      2. Environmental Factors
        1. May be overstimulated by loud noises, physical clutter, or an overactive environment 
        2. They may feel lost
        3. Most dementia/Alzheimer’s patients function better in the mornings, so take this into account when making appointments or scheduling activities
          1. Sundowning: common symptom of dementia; a state of confusion occurring in the late afternoon and spanning into the night 
          2. Can cause a variety of behaviors, such as confusion, anxiety, aggression or ignoring directions
          3. Can also lead to pacing or wandering
      3. Poor Communication
        1. Make sure instructions are simple and easy to understand
        2. Try not to ask too many questions or make too many statements at once 
        3. They may also be picking up on your mood, especially if you are stressed or irritable 
    2. How to Respond: 
      1. Try to identify the immediate cause
        1. Think about what happened right before their outburst to determine what triggered this behavior 
        2. Try to stay calm, you freaking out will only worsen the situation
      2. Rule out pain as the cause of the behavior 
        1. Pain can trigger aggressive behavior for a person with dementia. Once the pain subsides, typically their outburst will as well
      3. Focus on feelings, not the facts
        1. Consider the person’s emotions, rather than focusing on specific details. Try to decipher their feelings from their words and actions (will help you differentiate between when they are in pain, angry/frustrated, or sad)  
      4. Shift the focus to another activity
        1. The immediate situation or activity may have unintentionally caused the aggressive response → try something different
        2. Try a relaxing activity → soothe them with music, exercise, crafting, etc.
      5. Ensure safety
        1. Make sure both you and the individual is safe
        2. If they cannot calm down, call for help (another family member or caregiver, the Alzheimer’s Association 24/7 hotline, or 911 if it becomes an emergency)
          1. If you call 911, make sure to inform the tell responders that the person has dementia which causes them to act aggressively 
      6. After the fact, share your experience with others
        1. Reach out to other caregivers or professionals (either in person or online) for strategies they have used in similar situations 
  4. How to determine when nursing home/assisted living placement is necessary 
    1. Every case is different (depends on how fast the illness is progressing, the resources their family possesses/whether the family can care for the individual physically/financially, etc.) → varies based on both patient and caregiver
      1. If you wait too long, there is a laundry list of things that could potentially go wrong
    2. Medication Management
      1. The nursing staff administers medications on a strict schedule and ensures the patient takes their meds (either in pill or injection form). They also look for an indications that a resident’s regimen should be changed
      2. While at home, caregivers must administer all medications and look out for signs that more/different medicines are required 
        1. Some signs that it may be time to move the patient to a nursing home is when the medications become too difficult to manage, if the patient’s regimen is frequently changing, or if the patient begins refusing their medications
    3. Mobility Issues
      1. At the end stages of dementia, patients have extremely limited mobility 
      2. It can become incredibly difficult/dangerous (if patient is larger than caregiver) to constantly move the patient around the home 
        1. Facilities are much better equipped to safely handle bathing, toileting, dressing, and other daily activities → they have the proper equipment, training, and manpower to assist residents and prevent accidents
    4. Wandering 
      1. If a patient wanders outside of their home without their caregiver noticing, a number of accidents can happen, with some even leading to a life-threatening situation
      2. When wandering becomes more constant, you  may want  to move the patient to a facility
        1. In these homes, residents are limited to specific spaces in the building and sometimes secured areas outside. These premises are heavily monitored and feature specific security measures to prevent them from wandering and getting lost/injured 
    5. Caregiver Stress
      1. Stress can quickly manifest itself in people of any age and can exacerbate even minor ailments
      2. Be honest with yourself about your emotional and physical limits while caregiving
        1. Placing a loved one in a facility does not mean that you have failed as a caregiver. Rather it reflects that you recognize that your loved one needs assistance that only professionals can offer (the patient deserves the best care, and sometimes we just do not have the training to offer the best care)
        2. Delaying nursing home care in order to not feel guilt/shame is far more detrimental to the patient than placing them in a nursing home even if they do not want it 
    6.  Rely on a plan, not a promise
      1. A patient’s daily care should not be substandard simply because of a promise their family made years earlier
      2. Make a plan before the patient reaches the stage of severe cognitive decline
        1. Allow them to be a part of the decision making process, let them choose the home they want to go to and determine when they want to be placed in said home (i.e., when they can no longer get out of bed without help, when they cannot prepare even basic meals, etc.)
    7. Placing a loved one in a facility does not equate failure. Rather, you are still caring for them and ensuring that all of their needs are met and they are receiving the best care possible
    8. There are also different types of facilities that a patient can move to, such as memory care, assisted living, and nursing homes. Having options is important, especially if your loved one is against going to a nursing home. 



  • The 36 Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Other Dementias, and Memory Loss


  • Charlie’s Place: Provides programs for Alzheimer’s patients as well as tips for caregivers 


  • Alzheimer’s Association: Provides tips for caregivers along with in-person/online support groups and a 24/7 hotline (800-272-3900) 


  • Alzheimer’s Foundation of America – Caregiving Resources (fact sheets, free community classes, webinars, etc.)


  • Memory Cafe Directory (places where those with dementia and caregivers can connect with others in similar situations to avoid social isolation)




10 Mistakes Alzheimer’s Disease Caregivers Make (https://www.healthgrades.com/right-care/alzheimers-disease/10-mistakes-alzheimers-disease-caregivers-make)

Common Dementia Caregiver Mistakes and How to Avoid Them 


9 Mistakes to Avoid When Caregiving for Someone Living with Alzheimer’s 


Caregiver Burnout


Anger and Aggression


When is it Time to Place a Loved One with Dementia in a Long-Term Care Facility


Signs it May be Time for Memory Care for a Loved One with Alzheimer’s or Dementia and Differences Between Types of Facilities



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