Alzheimer's disease does not just affect the memory of the person afflicted. The disease impacts the lives of family and friends, who often provide long-term care for their loved one.
It's estimated that almost 15 million people in the U.S. are providing care for a person with Alzheimer's or another form of dementia. Alzheimer's is the most common form of dementia, affecting an estimated 5.4 million Americans.
The disease takes a toll on caregivers, who deal with the stresses of daily life and the emotional burden of providing long-term care for a loved one with an incurable disease.
If you're caring for a person with Alzheimer's, it's important to get support and resources for long-term care giving. There are strategies to help deal with daily life with Alzheimer's and for long-term planning as symptoms intensify.
How to deal with diagnosis
The news of an Alzheimer's diagnosis is frightening and stressful. At the early stages of Alzheimer's, your loved one might have some memory loss, and trouble remembering the names of places or people. But both you and your loved one will have to come to terms with the meaning of the diagnosis, and share the news.
If your loved one is capable of understanding the information, they might not want to tell other people that they have Alzheimer's, for fear that it will change the way they're treated, or others might feel uncomfortable around them. In this case, talk with them about how to handle the situation and tell others.
Friends and family may already suspect that something is wrong. The sooner you tell others, the sooner they can help support you with the diagnosis.
When you talk to others about the diagnosis, explain the disease. Share resources about Alzheimer's. Most importantly, tell other people what they can do to help support you in care giving. Even doing small tasks may reduce our stress. Share your feeling and concerns, and let them share theirs. It's valuable to have a close support system in place throughout the duration of care giving.
How to cope with changes
Because Alzheimer's affects the brain, the patient has increasing difficulties remembering things and thinking clearly as the disease progresses. They become forgetful, get confused easily, and might start behaving in strange ways. The disease can even change their personality. Remember that these changes come from the disease, not the person.
It will get harder to communicate effectively with your loved one. They may have trouble finding the right word, or lose their thoughts while talking. It can be frustrating for them if they feel like they're not being heard or understood.
When speaking with them, talk in a loving manner. Make eye contact with them, and call them by name. Be conscious of your body language – your body might indicate that you are tense, frustrated, and angry, which might make the person with Alzheimer's feel frustrated themselves. Making physical contact also helps. Hold their hand or touch them while speaking to them.
Keep things simple for your loved one. Offer step-by-step instructions to tasks that they used to know how to do. Ask yes or no questions, and rephrase your question or request if they don't understand the first time. It's still important to treat them like an adult – don't use baby talk or talk about them to others as if they're not present in the room.
You might notice your loved one getting angry or upset more easily. They might try to wander away from home, or even start becoming violent. Your loved one might stop caring about how they look, even if they were impeccably dressed during the rest of their lives. This is hard to deal with, but it's important to stay patient.
Make sure your loved one knows that they are safe, and that you are there to help and support them. Don't argue, or show your frustration. Try to take breaks for yourself when care giving becomes too much. Ask the person you're caring for for help with small daily tasks. It will help them feel involved and useful.
How to care for yourself
It's not easy being a caregiver. It's physically and emotionally demanding. As the disease gets worse, it can become a 24-hour, seven-days-a-week job. It's okay to ask for help and take time off.
Remind yourself that you don't have to do everything yourself. Friends and family may be willing to spend time with the person, cook a meal, or help clean. Home health and adult day care services exist to give caregivers a break. And there are plenty of resources out there to pay for help. Take advantage of support groups, both in person and on the internet. They may help you cope with your position.
Keep track of your emotional health. You may experience anger, frustration, and grief on a daily basis. Know that you're doing the best that you can, and that your loved one has problems because of the disease, not because that's who they are. Enjoy the time that you have to spend with the person, and the moments when things are peaceful. Remind yourself why you chose to take on the task of care giving – and to find alternatives when it becomes too much.