Resources for Dementia Caregivers

iStock_66221483_MEDIUM Care Advisors 2.jpgFor those with dementia, a safe comforting environment can have a great impact on their overall quality of life. There are many enhancements that can be made to the environment of your loved one who is dealing with dementia. Many of the suggestions are easy but can make a big difference in improving safety and overall quality of life. Here are some tips for caregivers of dementia patients.

Quality of Life and Environment:

A caregiver can help maintain a dementia patient’s quality of life by trying the following:

  • Incorporate activities that can be done together, for example, listening to music.
  • Introduce activities that are similar to previously enjoyed activities. If your loved one was involved with housework, have them help fold towels.
  • Keep bathrooms neat and clean to avoid falls and consider installing shower rails.
  • Open blinds and shades so that there is more light exposure to help regulate body clock. This can help sundowning problems and sleep patterns

Typical Dementia Behaviors

While dementia affects everyone slightly different, there are some typical behaviors that your loved one may exhibit. This behavioral resource for caregivers of dementia patients outlines such behaviors. They include:

  1. Repetition of questions. This is a typical behavior that occurs with many dementia patients. It takes a great deal of patience to be able to answer questions repeatedly. If you feel overwhelmed or frustrated, take a deep breath (inhale and exhale at least 3 times) or consider walking out of the room if possible for a short break.
  2. Changing behaviors at night. Dementia patients may become more agitated at night, often known as “sundowning.” It is believed that this happens because there is a change in the individual’s circadian rhythm. Possible recommendations include: increasing light exposure during the day, reducing large meals at night, keeping the individual calm at night with a warm blanket and soothing music, and having the individual evaluated for possible pharmacological interventions.
  3. Incontinence. Consider the use of adult diapers and/or placing the individual on a schedule for toileting. A schedule for toileting may be helpful during the earlier stages whereas adult diapers may be needed at night or during the later stages.
  4. Appetite changes. It is not unusual to see changes in a dementia patient’s appetite. They may refuse to eat entirely or may prefer only certain types of foods, like sweeter foods. Often close friends or family members will try to have the individual eat a well-balanced diet and to schedule regular meals. It is a good idea to keep a schedule for meal time, but if the individual refuses to eat certain foods, there is no need to worry as long as appropriate calories are consumed based on a doctor’s advice.
  5. Lack or change of emotions. You may notice a lack of emotion on the face of a dementia patient or unusual periods of crying or neediness. This is a usual pattern of the disease and should be expected. However, it is understandable that this may cause alarm or distress for the caregiver. Ask your loved one’s doctor for dementia patient caregiver tips. They can give you reassurance so that you do not worry unnecessarily.
  6. Disinterest in activities. Worry may occur when your loved one no longer enjoys previously enjoyed activities, hobbies or interests. This will occur as the disease progresses and symptoms change. It is important to introduce variations of previously enjoyed activities as well as possible new activities that match their cognition level.
  7. Attachment to one caregiver. Neediness and fear of being alone is a behavior that is often seen in dementia patients. When a dementia patient is taken to a day care center, for example, it is not unusual to see crying and tantrum-like behavior. Fear of being alone, accompanied with anxiety, will occur when attending new places or meeting new people. However, once a place and people are identified as a normal part of their routine, the fear of abandonment should usually subside.
  8. Aggression. An individual suffering with dementia may become aggressive as the disease progresses. This is most likely caused because of increased confusion and periods of agitation. Attempt to soothe the individual by speaking in a calm voice, changing venues, seeking outside help when needed and considering pharmacological help.
  9. Lack of filter. Many dementia patients may say comments that are inappropriate and may be embarrassing to loved ones or others. The decline in brain structures or neurons is often associated with these behaviors. Try to understand that this is not your loved one speaking but “the disease.” Try not to get angry at your loved one. Use distraction by changing topics and venue.
  10. Childlike behaviors. Dementia patients may act like young children by eating food with their hands, being very clingy to loved ones, speaking like a child and engaging in tantrums. Once again, accept these behaviors as part of the disease. If needed, take a break by engaging in relaxation exercises, walking out of the room, or getting outside help.

Stress Management Tips for Dementia Caregivers

It is very stressful and overwhelming to be a caretaker. Many often feel alone and don’t know where to turn for advice. They rarely think about ways to reduce stress in their lives, which can lead to burnout and depression. However, there are many steps that can be taken to help manage caregiver stress.

  1. Take walks. It has been suggested that exercise and time to clear your mind is helpful for caregivers. Exercise often releases “feel good” hormones that alleviate feelings of stress.
  2. Listen to music. Engaging in a soothing activity can be very helpful. Music can be very calming for many people and can be utilized in active or solitary form.
  3. Write it down. Journaling can be very helpful when times are stressful or overwhelming for caretakers. Writing down thoughts and feelings can be a very soothing and calming process.
  4. Ask for help. Caretakers often shoulder all responsibilities for their loved one alone. It is difficult to ask for help from family, friends, or to consider using the services of an outside professional. But asking for help can be the most important thing a caregiver does, for themselves and for their loved one. A small break or attending a support group can be very helpful.
  5. Talk to a professional. It is not unusual to feel overwhelmed and it can be helpful to speak with an impartial individual during difficult times.
  6. Seek spiritual or religious counseling. Many individuals find it helpful during times of stress to find relief and comfort from spiritual and/or religious practices. This may come in the form of individual or group practices.

Emotional Issues

donate-image.pngEmotional stress affects all caregivers but may take many different forms. No matter how hard you try, one’s body may still react with anxiety, depressed mood, grief or some other emotional reaction. It is essential to find ways to manage these emotions since, unfortunately, the life of a caregiver is often a fulltime job. Most caregivers will also experience grief at various times as their loved one is undergoing many loses that will never be regained.

  1. Anger. This is a natural reaction that can be managed with exercise, therapy, journaling, attending support groups with other caretakers and normalizing your feelings.
  2. Anxiety. The use of relaxation and breathing exercises has proven successful in reducing anxiety. Consider also employing mindfulness practices, exercises, therapy and medication.
  3. Depression. Another natural reaction to the daily loss of your loved one. Exercise, relaxation exercises, challenging your negative thoughts with cognitive behavioral therapy, medication, and engaging in activities you enjoy are all helpful ways to reduce depressed mood.
  4. Social withdrawal. It is a normal reaction to feel uncomfortable socializing with others when your partner is not able to or cannot function in a way they once were able. You may feel guilty or ashamed of enjoying yourself when your loved one is unable to participate in previously enjoyed activities. However, it is helpful to push yourself to not withdrawal as this will only increase the potential for depressed mood which is not good for you or your loved one.
  5. Blame. Many healthy individuals may accept blame for the illness of their loved one. They may feel that a symptom was missed or a test should have been performed. Self-blame is not a cure for dementia but a destructive path that only increases the emotional suffering of the caretaker. Challenge your negative thoughts and replace them, even if for a few seconds, with positive ones.
  6. Sleep problems. Caretakers may have a hard time sleeping due to racing thoughts and ongoing fears. If tossing and turning results, then one should not stay in bed to sleep but should read a book, watch a boring television show, or drink a hot cup of milk or tea.
  7. Grief. It is natural to grieve the loss of the former individual that you loved and the good times that you shared. It is helpful to engage in forms of relaxation and other exercises, receive support from friends, consider therapy and try not to assume all responsibilities on your own.

Caregiver Burnout Quiz

Sometimes as a caregiver, we may not even realize that we are headed toward burnout until it happens. However, being aware of signs that you may be overworked and stressed can help you make changes before a bigger problem occurs. Are you headed toward burnout? Take our quiz to help you identify signs.

(If you answer yes to 4 or more questions, you might want to consider getting assistance before a burnout occurs.)

 

If you think you may have, or could have, caregiver burnout, therapy, hiring outside caregiving services, or scheduling time for yourself are all possible steps to take to help you feel better.

Next Steps

It is very challenging to be a caregiver. It is important to take time for yourself by learning about the disease, joining a support group, learning about ways to relax including relaxation exercises, mindfulness, meditation and engage in exercise, spiritual or religious activities. There are many ways to approach caregiving. It is important to realize that one solution does not work for any individual or family. Also, different caregiving solutions will work at various parts of the disease’s progression. See the following resources for dementia caregivers:

If you need immediate help caring for your loved one, Abramson Care Advisors can help you locate the services you need for free. Call, 24 hours, seven days a week 215-371-3400.

Further Research

There are many helpful resources for dementia caregivers. It is very helpful to stay abreast of developments in the medical and caregiver community. New studies, medications, support groups, recommended books, newsletters, activities and even humor are all helpful to the caregiver. It is important to know that you are not alone. Consider reading information at