Providing care to someone who has Alzheimer’s disease or dementia can feel overwhelming at times. It’s a role that calls for patience and understanding, and a strong support system is essential.

At the same time, caregivers must make self-care a priority, or they risk burnout and other consequences. According to the American Association for Geriatric Psychiatry, up to half of primary caregivers experience psychological distress, including depression. For the 13 million Americans caring for people living with Alzheimer’s, caregiver stress can take a serious toll on their own health. 

This month, in honor of Alzheimer’s and Brain Awareness Month, we’ve created a guide for caregivers that includes insights on how to support someone with Alzheimer’s and dementia, while also caring for their own health.

  1. Early on, involve your loved one in making decisions about their care. An Alzheimer’s diagnosis can be shattering. But it’s important to come together to discuss the next steps and talk about their expectations, goals and wishes. Early in the diagnosis, it may feel too early to discuss these kinds of plans; however, depending on how quickly the disease progresses, it can be valuable to talk about these things sooner rather than later. If you’re not sure where to begin, visit The Conversation Project, which creates resources aimed at making challenging conversations easier when it comes to health, and offers a free guide for caregivers of people with Alzheimer’s and dementia.  
  2. Establish a routine and stick with it. Day-to-day consistency can help both the person with Alzheimer’s and their caregiver, because everyone knows what to expect. People with dementia have trouble forming new memories, so change can be challenging, whereas a routine can help keep them grounded, according to Brown University Health. Use a whiteboard or calendar and write down what will happen and when on any given day. If there’s a change to the daily routine, such as a visitor or a doctor’s appointment, note that on the calendar or whiteboard as a reminder.
  3. Make the home a safe space. In addition to impacting a person’s memory, Alzheimer’s can lead to changes in a person’s demeanor; they may also experience confusion and struggle with balance. By taking precautions around the home, you can help create a safer living space. For starters, the Cleveland Clinic suggests taking the following steps (see the full list here):
    • Create a list of emergency contacts, including the police, fire department, doctors, family members and neighbors and place copies near phones and on the refrigerator.
    • Be sure stairways have handrails.
    • Consider a medical alert system or alarm system.
    • Remove locks from interior doors.
    • Examine the home for fire safety: be sure smoke alarms and carbon monoxide detectors work and have a fire extinguisher available. 
  1. Reconsider their wardrobe. Independence is important, and what your loved one is able to do will change as time passes. Encourage them when it comes to daily tasks, such as bathing themselves and dressing themselves. To make dressing easier, Alzheimers.gov suggests purchasing loose-fitting, comfortable clothes that aren’t difficult to put on. Aim for items with elastic waistbands, fabric fasteners and zippers, instead of buttons, buckles and laces.
  2. Keep communication simple and kind. Some people experience changes to their personality with Alzheimer’s, and they could become agitated, unpredictable, anxious or socially withdrawn. The Cleveland Clinic advises caregivers to speak in a reassuring manner and to engage in calming activities, like listening to music, taking a walk or talking about memories. Try to simplify the way you talk, so that you’re speaking in short sentences and using easy-to-understand words. If you observe changes in behavior, including symptoms that could be related to side effects from medications, notify your healthcare provider.
  3. Take care of yourself. Caregiving can be deeply meaningful, but that doesn’t mean it’s easy. To take care of your loved one, you must take care of yourself. The National Institute on Aging offers the following advice when it comes to caregivers and self-care:
    • Take breaks daily
    • Schedule time with your friends
    • Eat healthy foods
    • Exercise regularly, or as often as you can
    • Keep up with your own healthcare needs, including regular check-ups
    • Make time for your own hobbies and interests
    • To manage stress, talk to a mental health provider or social worker
    • Try different stress-relieving techniques, such as meditation, yoga or tai chi
    • Update your legal, financial and health information
  4. Ask for help—and accept it. Build a supportive network for yourself and your loved one, and learn to communicate what you need. When people offer to help, take them up on it, and assign specific tasks when possible. Consider joining a virtual or in-person support group, like the ones offered by the Alzheimer’s Association. When you need a break, you may be able to get help through a home healthcare provider or day care service. For assistance paying for care, look into the resources available locally and nationally. To speak with a licensed social worker trained in dementia care, call the Alzheimer’s Foundation of America’s 24-hour toll-free helpline at 866-232-8484 or send a text to 646-586-5283.

With an Alzheimer’s diagnosis, everything changes. That’s true for the person living with the disease as well as their care partner. By educating yourself about the condition and what it entails, you can be better prepared to navigate the future. Some good places to start include The Alzheimer’s Association, Alzheimers.gov, Alzheimer’s Foundation of America and The National Institute on Aging. Alabama resources include the Alabama Department of Senior Services, Alabama Public Health and the University of Alabama’s Caregiver Connect.