It doesn’t take a huge stretch of the mind to understand why caring for someone with Alzheimer’s disease is challenging — especially when that someone is a loved one.
It can be physically taxing work, particularly in later stages of the disease when the person needs more and more help with daily functioning. The disease progresses, so care strategies that may work one day may need to be re-written the next.
Caregivers fill a lot of roles, explains Shilpa Krishnan, PhD, a physical therapist and assistant professor in Emory University’s Department of Rehabilitation Medicine’s Division of Physical Therapy. “Sometimes the caregiver is a chef, sometimes a medical assistant, sometimes a personal assistant, and more.”
And, caregivers face the emotional challenges of losing a relationship with their loved one (or losing that loved one as they once knew them). “It can be emotionally overwhelming,” says Krishnan, whose research focuses on better understanding the needs and preferences of people with Alzheimer’s disease and their caregivers.
Add to those challenges specific burdens among specific populations that Alzheimer’s caregiving tends to fall to, she adds.
Many Alzheimer’s caregivers are in the “sandwich generation” — those (who tend to be in their 40s or 50s) who are caring for aging parents as well as supporting their own children (either raising children in their home or supporting grown children financially). They have a lot of responsibilities to juggle, Krishnan says.
Other Alzheimer’s caregivers may be older themselves and face their own chronic conditions (such as heart disease, obesity, diabetes and others), which they need to manage along with caregiving, Krishnan says. Research suggests these scenarios can take a toll — individuals with more than two chronic health conditions may be by default at increased risk for cognitive impairments themselves.
And among certain populations and ethnicities, it’s part of the culture for caregiving to happen at home by loved ones rather than turning to formal care. These people may be more likely to avoid or delay seeking caregiving help or residential care even though the care they are providing is a major burden, Krishnan says.
The bottom line is that being a caregiver of someone with Alzheimer’s disease is difficult in any capacity. And there are many additional challenges that Alzheimer’s caregivers commonly face that make the task even more difficult.
So, it’s probably not surprising that being under too much stress, the burden of caregiving can lead to depression, anger at the person with dementia, social withdrawal, anxiety, sleeplessness, irritability, and both physical and mental health problems. That’s why it’s so important that caregivers recognize that there are resources they can turn to when they need help.
How to avoid burnout as a caregiver
Krishnan and her colleagues published a set of evidence-based recommendations in a 2017 article in the "Archives of Physical Medicine and Rehabilitation" to reduce risk of burnout among those caring for people with Alzheimer’s disease.
Here are some of those tips, as well as a few others from Krishnan (and why they work).
1. Learn how to be a caregiver
It may sound obvious, but seek out information about Alzheimer’s disease, what types of behaviors to expect, and strategies that are recommended for specific challenges you might face. Organizations, including the Family Caregiver Alliance and the Alzheimer’s Association, have extensive information published online about Alzheimer’s disease and tips for caregivers.
2. Schedule breaks
Following a daily routine can be helpful for those with Alzheimer’s disease (as it helps lessen confusion they face) and it adds predictability for caregivers. Caregivers can (and should, according to Krishnan), schedule breaks. Whether it’s for a few hours, a full day, or a weekend — look to family members, friends, or respite care services — taking those breaks are important, she says. “They let you come back and resume your caregiving tasks with a fresher perspective and you feel less frustrated in the day-to-day activities.”
Research shows, for example, that when caregivers of persons with Alzheimer’s disease take restorative mental breaks (ones that involve “both rest and engagement in absorbing activity”), doing so supports productivity and does not compromise the well-being of the person being cared for. And caregivers who take breaks to engage in leisure activities reap physical health benefits, too, like helping keep blood pressure under control over time.
3. Ask for help (whether someone offers or not)
Caring for someone with Alzheimer’s disease — especially if you are the primary caregiver — is a huge burden, Krishnan says. It’s okay to ask family members or friends to help out with caregiving tasks, with other tasks you need, or just to come over and provide some company for a few hours at a time.
“Many caregivers avoid support from their own family members,” Krishnan says — whether it be because they underestimate the burden they’ve taken on, they undervalue self-care, they view asking for help as a weakness, or a host of other reasons.
But even having another family member or friend help for a few hours can provide a huge boost to the caregiver’s mood and energy, prevent stress, and decrease burnout. The number of hours spent caregiving has been shown to directly correlate to burnout rates.
4. Ask questions when you have them
Don’t hesitate to ask questions or speak up when you don’t understand something. You’ll likely be communicating with several health care professionals about the individual with Alzheimer’s you are taking care of. Make sure those providers understand your role and the challenges you face. Let them know about new challenges or changes in behaviors or health of the person with Alzheimer’s disease.
5. Ask about financial aid
Alzheimer’s care is expensive. Ask about financial resources available in your community. There may be local or national aid available to help with respite care or home-delivered meals. Ask health care providers or those in your support network in your area. Or organizations like the Alzheimer’s Association helps connect caregivers with needed resources.
6. Always look for ways to grow your support system
Remember, caring for someone with Alzheimer’s disease requires caregivers to start dealing with a whole host of new challenges they likely are not used to dealing with. Getting support from a counselor, friends, or peer support group can help immeasurably.
7. Make sure your support system involves other caregivers
There are peer support groups in every state for people with Alzheimer’s disease and for Alzheimer’s caregivers, Krishnan says. Growing relationships with others facing the same challenges that you are can help you learn strategies to cope; learn about new resources in your community; and feel reassuring to talk about shared experiences.
8. Journal about what’s going on
What the individual with Alzheimer’s disease is going through one day may change a month later and with it, your caregiving strategies may need to change, too. Actually writing all of those challenges and victories down in a daily journal can help you appreciate the small steps you are taking in what otherwise may feel like a daunting role. “Looking back can help you appreciate the progress [you’ve made],” Krishnan says.
9. Take care of your own health
Eat nutritious foods. Exercise regularly to protect your physical and mental health. And do not feel guilty about taking care of your own needs, along with those of the individual you are caring for, Krishnan says. You might feel inclined to always put your loved one’s needs first, or you might feel too exhausted to take care of your own needs after worrying about your loved one’s — but ignore your own needs too much, and you won’t be able to take care of anyone.