Anyone who has been a caregiver for a loved one with dementia knows how challenging and all-consuming this important role can be, both physically and emotionally. Dementia doesn’t just affect the patient. In fact, caregivers are often called “the hidden patient” because as the disease continues to progress and destroy brain cells, patients increasingly depend on caregivers’ assistance for simple tasks such as getting dressed or preparing a meal.

As they cope with the manifestations of dementia and the demands associated with this role, it’s not uncommon for caregivers to feel stressed or as if they’re nearing a breaking point.

Caregiving Can Take a Toll

Caregiving can be very challenging because it often involves an evolution of your own life to take on numerous new tasks to care for a family member, all while trying to manage your own health and personal life. Research indicates that caregiving is often associated with poorer health, both physically and mentally.

In fact, more than 80% of caregivers report that they frequently experience high levels of stress; nearly half state that they suffer from depression and 68% of caregivers will die before the patient due to complications of stress.

A UCLA study found the following about caregivers:

• 10% are using alcohol or prescription drugs to cope
• 16% are smoking to cope
• 28% are obese

Common Emotions and Feelings of Caregivers

Because dementia is a progressively worsening disease with a rate of progression from mild to advanced varying widely from 3-20+ years, it’s no surprise that dementia caregivers are particularly vulnerable to burnout due to the long process of decline.

A caregiver is often juggling multiple responsibilities with their own spouse, children and careers, and they then turn around and intimately care for others and instinctively turn off their own needs. The selfless tasks associated with caregiving activities are an invaluable gift to those in need, yet these unpaid, long hours often make caregivers more prone to injury from overexertion, chronic pain and depression.

Common emotions of caregivers can run the gamut, including:

• Optimism by believing your work is making a difference
• Gaining satisfaction in helping others
• Experiencing feelings of guilt or believing you’re not doing enough to help
• Cynicism and distrusting motives of others
• Feeling unappreciated

Warning Signs of Caregiver Burnout

There can be physical, behavioral and emotional signs of caregiver stress and burnout. Below are several red flags to look out for:

• Lack of concentration or short-term memory problems from added stress
• Repeating actions or chores without thinking
• Neglecting your appearance or neglecting other family members
• Changes in eating habits that result in weight gain or loss
• Anger, anxiety, denial and/or depression
• Exhaustion, irritability or sleeplessness
• Health problems
• Social withdrawal

Tips To Create Balance

Even in the best of situations, family caregivers need support and that often starts with making time to intentionally seek a balanced and healthy lifestyle.

Getting organized, prioritizing and making lists can help establish a routine that will allow you to carve out time to care for yourself. Here are a few places to start:

• Accept your own limits and be open to asking for and accepting help from others. Create a support team from friends, family, church, doctors or home health providers
• Schedule time for yourself: social activities can help you feel connected
• Make your own health your first priority and make time to see your doctor
• Eat a balanced diet and get quality rest
• Exercise regularly at least four days a week
• Laugh and know when to take a break
• Find out about community caregiver resources through the Alzheimer’s Association, Dementia Friendly Forth Worth and James L. West Center for Dementia Care

Caregiver Tips

Despite the reality of additional stress that the caregiving dynamic can create, it’s also an opportunity for personal growth, building new strengths and skills, and practicing resilience.

• Breathe deeply and stretch: While sitting or standing, reach as high as you can overhead while breathing deeply, shrug your shoulders and roll forward then backward.
• Relax: This can reduce stress, decrease muscle tension, increase concentration, improve problem solving abilities and soothe emotions.
• Focus on the present moment and practice mindfulness. Stay in the here and now, and stop fretting about yesterday (which can lead to depression) or worrying about tomorrow (anxiety).
• Practice positive thinking: What would you say to someone else in your situation?
• Imagery: Think of your favorite places to be and go there in your mind for a few moments.
• Listen to music that relaxes you, use aromatherapy and surround yourself with photographs that offer a reminder of your why.
• Water: drink plenty of it and limit your caffeine intake. Run water over your hands and face as a refresher.

When you’re taking care of someone, it’s important to identify what stressors are affecting your life and make necessary changes to decrease the stress. Actively practicing caregiver self-care is a vital part of the process of equipping you to care for both yourself and your loved one.

James L. West Center for Dementia Care provides insightful, life-enhancing resources for all levels of dementia care, including respite care and caregiver education. Learn more about our services and programs here or by calling 817-877-1199.