What Does Wellness Look Like for Dementia Caregivers?

Anyone providing care for a loved one with dementia knows how stressful it can be. Not only can the tasks involved be challenging and exhausting, but there is a very emotional level as well. It can be hard to see someone you care about or unable to remember the memories you shared or behaving at times like a different person.

Statistics on the wellness of family caregivers are sobering. Here are just a few which represent the challenges faced:

• According to The National Alliance for Caregiving and AARP’s Caregiving in the U.S. 2020 report, 40 percent of caregivers find caregiving highly emotionally stressful, and about one and five caregivers report: 
  • Worse health since they began caregiving
  • More difficulty caring for themselves
  • Higher physical strain
• Caregivers are more likely than non-caregivers to develop a chronic condition, such as heart disease or stroke
• Over 40 percent of caregivers show symptoms of depression
• Around 17 percent of caregivers report their feelings of loneliness as “severe”

On top of this, caregiving can also negatively impact finances and existing work-life balances. But even with all these challenges, caregivers often neglect self-care, infrequently check in on their own health and either don’t know about or don’t use opportunities for respite.

Looking after your own wellness as a dementia caregiver

One of the most important first steps is recognizing that your needs matter. Of course, this doesn’t need to mean neglecting or de-prioritizing your loved one with dementia. It just means recognizing that you aren’t in an either/or situation. You can take care of your loved one while also taking care of yourself.

However, it may mean reevaluating your current care situation. If there is no time for yourself in your regular schedule, it’s time to make a change. A care plan that leaves no room for anything outside of work and caregiving isn’t sustainable in the long-term, and can even lead a drop in your quality of care due to exhaustion and burnout.

Here are some ways you can take better care of yourself as a dementia caregiver:

• Find a relaxation method that works for you: Relaxation isn’t just yoga, mindfulness or a long bath. Relaxation can be whatever gives you a moment of peace, pulls you away from your stress and reenergizes you. In that sense, relaxation can take on different forms for different people, so if the thought of meditating or listening to classical music doesn’t work for you, remember that even high-energy activities like mountain biking or attending a concert can be a form of relaxation if they help you de-stress and boost your mood. The key is finding ways to incorporate your favorite method into everyday life. You can’t go to the art museum every day, for example, but you can enjoy coffee table art books or time lapse drawing videos on YouTube.
   
• Express—instead of bottling up—your emotions: Dementia can be devastating emotionally. It can spark a lot of different feelings beyond just grief, too. Many dementia caregivers struggle with feelings of anger towards their loved one, and even deep hurt if their loved one says or does something that feels personal. However, these feelings can be hard to talk about. When your loved one is suffering, it can feel selfish to complain about your feelings, especially when your loved one isn’t in full control of what they do or say.
  
  Bottling up these emotions and not giving them an outlet can contribute to feelings of depression. If you feel you cannot talk to any of your friends and relatives about what you’re going through, there are many other options, such as journaling, support groups, therapy, counseling and even online forums. Some also find creative outlets helpful, and release emotions through art, writing, music or other similar methods.
   
• Set aside time to exercise: We’ve all heard the line about exercising releasing endorphins—feel-good signals to our brain. But most of us have also had an experience when at the gym or participating in an activity where we just feel sweaty and sore and wonder, “What feels good about this?”
  
  The key is finding an enjoyable form of exercising. Luckily, physical activity comes in many forms. If none of the equipment at the gym sparks joy, consider biking, long walks, swimming, dancing, going to the batting cages, jumping rope or hula hooping.
   
• Talk honestly with your doctor: Many caregivers don’t prioritize their own health over their loved one’s. On top of that, most people—not just caregivers—tend to dismiss health issues they think “everyone” has. For example, “Isn’t everyone stressed these days?” or “Anyone would feel sad about this situation—it’s not a big deal.”
  
  But it can, in fact, be much bigger than it seems on the surface. It’s important to tell your doctor about any symptoms you’ve been experiencing, especially those you don’t recall experiencing before you became a caregiver. Even if your symptoms don’t require medication, doctors can often give advice about lifestyle changes you can make to help.
   
• Seek out and ask for help: One of the most important parts of wellness is recognizing when you’re carrying too much on your shoulders. Asking for help can be harder than it sounds, but it can make the difference between what you can and cannot handle. Consider which of your current responsibilities could be safely handled by someone else, and reach out to people you think would be appropriate to help. There are also many services that can be helpful. Home care/care manager support is an option, but something as simple as getting your loved one involved in a senior center or day program can provide you with more time for yourself. Care coaching services like WeCare…Because You Do can also put you in touch with consultants who can help you work through difficulties, connect with services and build a plan for the future. If you’re not sure what’s available in your area, the Eldercare Locator is a great place to start.