The 7 stages of Alzheimer's are relatively consistent from person to person. The six identified stages of caring for a person with Alzheimer's are not quite as consistent since individuals assisted by caregivers are diagnosed at different times during the disease progression. However, these 6 stages can provide insight for the caregiver into what to expect for him or herself.
The National Alzheimer's Association and the National Chronic Care Consortium collaborated to make this information available to help caregivers. The information provided below is from the model for intervention developed to help professionals help the caregivers. A link to more detailed information is provided below.
The Six Stages of Caregiving for Alzheimer's Patients
During this time there is a growing awareness that something is wrong. Both the family and the person with dementia are trying to decide how seriously they should take memory lapses, functional impairments, or periods of confusion. This phase may last for years. A major task for the family is to monitor things over time to see if they get better, stay the same, or get worse. The primary issue during this time is arriving at a realistic understanding among family members about the illness.
Sooner or later, as symptoms of cognitive impairment accumulate or a single, critical event occurs—making it impossible to believe nothing is wrong—families will obtain a diagnosis. The family must deal with the emotional issues of fear, sadness, anger, and denial that will be present and begin to process the meaning of the diagnosis. They must decide whom to tell about the diagnosis and find a way to maintain family morale and hope in the face of lost dreams for the future.
- Role Change
With the progression of impairment, the person with dementia changes from a competent, independent adult into a person who requires help with all activities of daily living. Family roles also change as the caregiving system is organized and the family begins to take greater control over the elder’s life. Tasks must be assigned to different family members with a means to monitor and encourage each to take a fair share. The family must understand what the person with dementia can and cannot do and adapt situations to maximize his or her participation. Both the person with Alzheimer’s and the family must deal with issues of significant loss.
- Chronic Caregiving
With the continued loss of abilities, the person with dementia requires greater amounts of help with activities such as dressing, bathing, grooming, toileting, and feeding. The major challenge for the family is to stave off the physical and emotional exhaustion of caregiving. Support systems must be alert to signs of exhaustion, burnout, or depression among all family members, including the person with dementia, and plans must be developed to provide respite and maintain energy in daily life. Family members can be organized as case managers to help identify appropriate services in the community and develop the means for using these services with the least amount of stress on the primary caregiver and person with dementia. At this phase the disease crowds out normal family life.
- Transition to Alternative Care
As caregiving resources are exhausted, it is often no longer possible to care for the person with dementia at home, necessitating placement in a nursing home or other care facility. The family must be provided assistance to help identify the point at which placement should occur, making sure to consider the needs of all family members. This traumatic event marks the end of personal caregiving and requires a shift into collaborative caregiving with appropriate role expectations.
- End of Life
Families are faced with many decisions regarding care and the treatment of potentially life threatening illnesses. The family must not only witness but also participate in the dying of the person with dementia. Based upon the foundation of values and benefits unique to each family, the ethical dilemmas faced in making end-of-life treatment decisions must be resolved. The family must be helped to develop an image of a “good death,” including important rituals and legacies, which will help bring closure and meaning at the point of death.
Progressive Changes in Alzheimer's - a Detailed Description of Behaviors