Alzheimer’s disease (AD) is the most common form of dementia among older people. Dementia is characterized as a brain disorder that seriously affects a person’s ability to carry out daily activities and functioning. As with a lot of generative diseases, Alzheimer’s begins slowly. It starts by affecting the parts of the brain that control thought, memory and language. People with Alzheimer disease often experience trouble remembering things, people, names, past events, places, etc. When symptoms first emerge many people attribute forgetfulness to “old age”, a natural process that occurs with aging. However, with Alzheimer disease, over time, symptoms get worse. Those suffering from Alzheimer disease may not recognize family members, have trouble speaking, reading, concentrating, or writing. They may forget how to brush their teeth or comb their hair. Later on, they may become anxious or aggressive, or wander away from home. Eventually, they need total and complete care. The need for total and complete care can cause a shift or complete change in familial roles and responsibility. This shift can cause great stress for family members who must now care for a family member that was once independent or served as the family matriarch.
Some of the most common feelings experienced by family members and caregivers include guilt, grief and loss, depression, anxiety, and anger. It is not uncommon for family members and caregivers to feel alone and powerless to control the changes in the family member or the changes occurring within the family. Some family member will experience feelings of guilt, guilt for resenting the way in which the disease has changed their family, guilt at feeling embarrassed by the sufferer’s odd behavior, guilt for losing their temper surrounding the person’s forgetfulness, increased need for care, or guilt for not wanting the responsibility of caring for a person with Alzheimer’s. Part of living well and managing the symptoms related to Alzheimer’s include adjusting to your “new normal” by helping family and friends understand the disease and how it progresses. Knowing what to expect and what resources are available can make the process easier for you and those close to you.
One of the most important things to do when you learn a family member has been diagnosed with Alzheimer’s and there are symptoms present is to acknowledge what is occurring. Often, a lot of people will pretend there is nothing wrong with his or her family member, there has been no change in health, and memory issues are the result of aging. It is important to be transparent with both the individual diagnosed with Alzheimer’s as well as other family members and caregivers. Transparency allows those that love and care for persons with the disease to better understand the changes that are occurring, develop techniques to manage negative feelings, and support the sufferer as his or her health continues to decline. Talking about Alzheimer’s can be a difficult topic to tackle, however, it does not need to occur with everyone at the same time in the same way. Discussions about the disease can be done in many different ways. You can call and talk to people individually, have a family meeting, coordinate a meeting with a trained professional to discuss the disease, or provide family members and caregivers with educational material on the disease to enhance understanding.
7 Familial and Caregiving concerns:
· Caregiving is not easy, and it will become more demanding with the decline in health of those with Alzheimer’s disease.
· Make sure you are not the only person caring for the individual with Alzheimer’s. Set up a system that allows the responsibility of caring for persons with the disease to be shared.
· Conserve your energy as much as possible. It is important to ensure we receive the rest that is needed to both care for ourselves and those with Alzheimer’s disease.
· Acknowledge the changes in health, need, and demands of the member with Alzheimer’s disease. By acting as if there are no significant changes in the suffer and the family system, true understanding of disease and its progression cannot be attained. By recognizing and acknowledging that there is or will be a decline in health allows members and caregivers to properly prepare.
· Work with your family member, spouse, or partner to put together information you may need at a later date regarding caregiving services, important health and legal paperwork, etc., while he or she can actively assist with his or her care.
· People with Alzheimer’s are more likely to wander off as the disease progresses. Create a plan or develop a support system to prevent and or limit the opportunity for the person with Alzheimer’s to wander off or potentially hurt him or herself.
· Adapt activities as needed to allow persons with Alzheimer’s to feel more comfortable and at ease. Change is not easy for a lot of people, however, there will be times when things will need to be eliminated or adjusted so that the member with Alzheimer’s can remain an active part of the family system.
Caring for someone with a degenerative disease is hard on everyone involved. It is important to gain as much information as you possibly can to both understand the disease as well as to identify techniques that can be used to support the member with the disease. Identifying physical, psychological, and emotional needs will allow you to become better equipped to support the sufferer, such as meeting with a social worker, therapist, doctor, lawyer, etc. Another integral way to support those with Alzheimer’s include identifying our own personal needs. In order to effectively support and care for persons with the disease we must recognize our own personal needs and limitations. This can be done by sharing caregiving responsibilities with other family members and providers.