The tragedy of Alzheimer’s disease is that, in the early stages, the patient appears perfectly healthy. Unlike cancer or heart disease where patients may have pain, Alzheimer’s disease affects an individual’s behavior. Family members may find a patient’s forgetfulness or lethargy irritating and not realize the behavior is related to a serious illness.
An accurate diagnosis can provide the patient and family with access to the expertise and support that can buffer the impact of the illness.
While everyone becomes more easily distracted as they age, not everyone develops dementia, of which Alzheimer’s disease is the most common form. Dementia is not a natural part of aging. An older person’s confusion may be the result of depression, poor nutrition, infection, thyroid issues or reactions to medication.
Most related health issues that cause confusion or depression can be treated, and the patient and family members will see some improvement. Alzheimer’s disease, however, currently has no cure. An accurate diagnosis can provide the patient and family with access to the expertise and support that can buffer the impact of the illness.
Alzheimer’s Affects Families
After an Alzheimer’s diagnosis is made, patients and their families have many immediate and ongoing needs that need to be addressed. Alzheimer’s disease not only takes over the life of the patient, it takes over the life of the family as well.
Witnessing brain degeneration can be just as difficult as experiencing it. No longer being able to share common memories, or worse, no longer being recognized by your parent or spouse, can be heartbreaking. Making decisions about the patient’s independence, particularly driving and living situations, can be challenging when the patient is a parent or a spouse.
Isolation and guilt are common feelings for caregivers of patients with Alzheimer’s.
Isolation and guilt are common feelings for caregivers of patients with Alzheimer’s. Here are some ways that you can make it easier on yourself and your loved one.
Tips for Caregivers
- Meet with the healthcare provider together as a family.
- Create an ongoing means of communication with all family members.
- Educate yourself. Understand the stages of the disease, including what happens to an individual’s mind and body as the disease progresses.
- Discuss legal, financial and insurance issues.
- Consult with an elder law attorney about planning for possible long-term care needs and estate planning.
- Talk about an advance directive — a written statement of a person’s wishes regarding medical treatment that helps ensure that the person’s wishes are carried out even if he or she cannot communicate them to a doctor (theconversationproject.org is a great resource).
- Join a support group for the patient or the family. Support groups can provide important socialization opportunities for the patient. For the caregiver, they offer an opportunity to share the situation with others who are experiencing something similar, offer ideas on coping and provide both validation and a little relief.
- Tap into community resources such as adult day services, respite assistance services. Meet with a social worker for help navigating the complicated network of resources available.
For more information about how you can support Alzheimer’s disease research, please contact us.
Barbara Moscowitz, MSW, LICSW, has been a medical and geriatric social worker at Massachusetts General Hospital for more than 30 years. She specializes in the care of adults with dementia, as well as counseling caregivers for both short and long-term periods. She has produced an award-winning film on Caregiving and Alzheimer’s, is the 2007 winner of the Kenneth B. Schwartz Center Compassionate Care Award and is the director of MGH Senior HealthWISE, a program of the MGH Center for Community Health Improvement and MGH Geriatric Medicine.