Taking Care of The Caregiver

By Janet Goss, LCPC

Today it is estimated that 5.4 million Americans of all ages have been diagnosed with Alzheimer's disease (AD). By 2050 that number is expected to grow to nearly 13.8 million. Because of this, more and more family members and loved ones are being thrust into the role of caregiver. Right now there are more than 15 million caregivers tending to Alzheimer's and other patients with dementia in the United States. No one is ever prepared for the devastation of AD and many do not actively make the decision to become a caregiver. Those caring for individuals with Alzheimer’s disease struggle with conflicting feelings such as anger, frustration and guilt, as well as loving, caring feelings about their loved one with AD and their role as caregiver. These feelings are not always discussed or addressed. The following interventions are essential in assisting caregivers with coping and preventing burnout.

Schedule a family meeting. These meetings can help family members acknowledge fears and set the stage for working together. It is critical to identify the ways in which the disease may disrupt family life and clarify the tasks and roles of family members. There are several crucial skills needed when it comes to caretaking: organizational skills, physical and emotional stamina, financial planning, and the ability to deal with repetitive and unpleasant tasks. Understanding in advance what is required and recognizing your own limitations can help in delegating some of the responsibilities.

Secure a strong support network. While asking for help isn’t always easy, most caregivers have other responsibilities in their lives. There comes a point when you realize you might not be able to handle it all. Letting others know you need a break or just time to talk, can lower the risk for the caregiver of becoming isolated, scared and depressed. Schedule time for yourself and participate in activities that you enjoy and that allow you to re-energize. Support groups can help caregivers understand the many different emotions that come along with their new responsibilities. In a study comparing caregiving spouses to non-caregiving spouses, 25% of the caregiving spouses were found to suffer from depression in contrast to only 5% of the non-caregiving spouses. A therapist trained in counseling caregivers can assist in sorting through feelings and dealing with the anger, pain, and confusion caregivers may be experiencing.

Seek information. Patients and their families often cope more effectively when they have a better idea of what to expect as the disease progresses. With time, an individual diagnosed with AD will change in so many fundamental ways that they, in effect, become a different person. When dealing with AD, one needs to learn to expect the unexpected. Those with AD eventually exhibit behaviors that don’t conform to social norms and that appear with no apparent reason or cause. Having a team of physicians and other healthcare professionals, such as nurses, physical or occupational therapists, and social workers, is crucial for providing optimal care.

The job of a caregiver is very time consuming, as well as emotionally and physically draining. People often lose sight of their own needs while focusing exclusively on the patient. When the diagnosis is AD, the family as well as the affected individual need support, education, information and encouragement.