Alzheimer's disease is called a family disease, because the chronic stress of watching a loved one slowly decline affects everyone. An effective treatment will address the needs of the entire family. Caregivers must focus on their own needs, take time for their own health and get support and respite from caregiving regularly to be able to sustain their well-being during this caregiving journey. Emotional and practical support, counseling, resource information and educational programs about Alzheimer's disease all help a caregiver provide the best possible care for a loved one.
Absolutely the easiest thing for someone to say and the hardest thing to accept is the advice to take care of yourself as a caregiver. As stated by one caregiver, "The care you give to yourself is the care you give to your loved one." It is often hard to see beyond the care tasks that await you each morning.
Through training, caregivers can learn how to manage challenging behaviors, improve communication skills and keep the person with Alzheimer's safe. Research shows that caregivers experience lower stress and better health when they learn skills through caregiver training and participate in a support group(s) (online or in person). Participation in these groups can allow caregivers to care for their loved one at home longer.
When you're starting out as a family caregiver, it's hard to know where to begin. Perhaps you've only recently realized that a loved one needs assistance and is no longer as self-sufficient as he or she once was. Or perhaps there has been a sudden change in their health.
Now it is time to take action, and take stock of the people, services and information that will help you provide care. The earlier you get support, the better.
The resources listed at the end of this fact sheet will help you locate local training classes and support groups. (See two of FCA's fact sheets: Caregiver's Guide to Understanding Dementia Behaviors, and Dementia, Caregiving and Controlling Frustration; as well as the article, Ten Real-life Strategies for Dementia Caregiving).
The role of the caregiver changes over time as the needs of the person with AD change. The following table offers a summary of the stages of AD, what kinds of behaviors to expect, and caregiving information and recommendations related to each stage of the disease.