Caring for a loved one with Alzheimer's disease (AD) is an experience full of love, frustration, patience, and heartache. According to the National Institute of Neurological Disorders and Stroke (NINDS), by the time AD has progressed from minor memory lapses to severe loss of cognitive and mental functioning, caregivers may witness dramatic changes in their loved one's personality, behavior, and abilities to communicate and care for themselves. Thus, the demands upon and responsibilities of caregivers ebb and flow with their loved one's changing needs.
In the early stages of AD, the role of "care partner," as the Alzheimer's Association describes, is one of emotional support, companionship, and help in planning for the future. As minor changes in the ability to think and learn emerge, care partners might assist their loved one with developing strategies to remember important things, continue living independently, manage daily tasks, stay organized, and maintain regular routines.
As AD progresses to the middle stage, and communication and completion of daily tasks become increasingly difficult, the responsibilities of caregivers grow more demanding, requiring even greater amounts of flexibility and patience. As loved ones become frustrated, angry, and even exhibit uncharacteristic behaviors, caregivers must adapt daily routines, stay in regular contact with doctors, use a calm voice even in difficult situations, and provide their loved one with reassurance and encouragement.
As if the demands of the middle stage of AD weren't enough to bear, in the late stage, caregivers find themselves providing their loved one with intensive, round-the-clock care. Their loved one, during this latter stage, is likely to have difficulties with eating and swallowing, walking, personal care, and may be unable to communicate verbally. The role of caregivers is to promote the quality of life and dignity of their loved one, all while finding those fleeting moments of connection with the person that seems lost. Individuals with AD now experience their world through the senses, so caregivers might begin to show their love and support through sounds, smells, tastes, sights, and gentle touches. During this latter stage, it often becomes necessary for families to make the difficult decision to call upon hospice care, or even place their loved one in a facility that specializes in the care of individuals with AD and dementia.
As the demands of caregiving grow and change, it is especially critical that caregivers pay close attention to their own self-care, and reach out to organizations, like the Alzheimer's Association, for support and helpful resources. Caregiving is a difficult, and sometimes beautiful, journey that does not need to be taken alone.