Care for the Caregivers: Managing the Stress of Caring for Someone with Cognitive Decline
Whether it’s for a parent, spouse, or someone else in your life experiencing cognitive decline, the job of a caregiver can be deeply rewarding, but emotionally and physically exhausting, too. Caregivers—whether family members, friends, or professionals—take on responsibilities that can be overwhelming, leading to heightened stress, burnout, and even health issues of their own.
But there are everyday strategies caregivers can employ to help manage stress, and there are national and local resources
available to caregivers who seek them out. Yet despite the variety of helpful strategies and the many sizable challenges associated with caregiving, most caregivers go without much support. “It’s the sad reality of the society we’re living in,” says psychiatrist Felipe Jain, MD, director of Health Aging Studies at Massachusetts General Hospital.
Dr. Jain, who devotes much of his research and clinical practice to caregiver challenges and solutions to their hardships, says it’s imperative that caregivers find ways to manage their stress and prioritize their own well-being.
He also acknowledges that many people “lose themselves in the caregiving role” and find it difficult to make time for themselves.
“Caregiving is a marathon,” Dr. Jain says. “Unless people attend to their own needs, they’re not going to make it to the finish line.”
Sources of Stress
Caring for someone with Alzheimer’s disease or other type of dementia, or even individuals in earlier stages of cognitive impairment, can bring on unexpected and ongoing obligations, as well as a range of heavy emotions. From providing personal care to managing medical appointments, household chores, and home finances, it can often seem like there is no end to the work. On top of that, there is the emotional hit you can take watching a loved one in the grip of cognitive decline.
“These burdens are not small,” Dr. Jain acknowledges. “They can be really challenging to figure out. Caregivers also want to know ‘What is my future like? Can I go out as much? Can I see my friends as much as I used to?’”
Family dynamics can also complicate caregiving or make the process one that is shared by multiple relatives. In some families the caregiver role is shared by more than one person. But in many families, Dr. Jain notes, the caregiving responsibilities aren’t shared equitably. It’s common for a spouse or one child to take on most or all of the caregiving obligations.
“Some people can start to feel resentful or embittered,” Dr. Jain says. “Someone who is caring for a spouse may want the children to step up, and if they don’t, it can become a real problem.”
Many spouses and caregivers also find themselves taking over responsibilities that they never had before. These can include things like handling the finances, cooking, cleaning, doing laundry, as well as assisting a relative with very intimate things
like toileting and bathing. “These can be very difficult tasks to assist with,” Dr. Jain says, adding that individuals in cognitive decline often experience many other changes besides memory loss. “There may be hallucinations, paranoia—they may think relatives are stealing from them, for example—anger and aggression, sleep disturbances, and other
changes.”
Seek Out Support
So how do you make it all work? The first step, Dr. Jain advises, is to explore the many resources available to caregivers and their families. He suggests reaching out to the Alzheimer’s Association (alz.org) or the Area Agency on Aging in your community.
You can learn about organizations that provide in-home care or adult day care centers that allow you to see your doctors and run errands or enjoy a little down time for yourself. You’ll get help finding online or inperson support groups for caregivers, as well as advice about topics related to your well-being and that of the person in your care.
“Accessing resources should be the first step for many caregivers,” Dr. Jain says. You may be surprised to find out what kind of assistance is out there. And don’t be shy about asking the doctors who treat the person in your care for advice or assistance.
Lower Your Stress Levels
Caregivers may be inclined to downplay their stress or other concerns, in part because they feel it’s without question their responsibility to look out for a loved one in need, and because they may not quite know what to say or how to explain their feelings. Stress can interfere with your ability to see things with a different perspective—one that could actually be helpful.
To that end, Dr. Jain recommends practicing mindfulness. It’s a state in which you are wholly present in the moment, aware of your senses, and allow your thoughts and feelings to be experienced without judgment. Mindfulness can be part of a meditative practice, but can also be a way of handling everyday moments—the good, the bad, and everything in between. “If stress comes up, you become aware of what emotions you’re having,” Dr. Jain says. “But you can also be aware that the stressful moment will be over soon and a new moment will be right in front of you. Remember, there are a lot of neutral or positive things to savor.”
Dr. Jain suggests taking time throughout the day to be thankful for simple things, like having a body that is healthy and can move, that there is food to enjoy, and, if you are fortunate enough to have a home of your own, you have that space to find comfort and peace.
If mindfulness sounds a little too touchy-feely, understand that it’s a concept that has won over many skeptics in the past. Dr. Jain recalled a study he led of older adults who were totally naive to meditation and mindfulness practices. He said some people gravitated to it rapidly, though others had some difficulty getting on board.
What’s important for caregivers, and everyone really, is to find ways that help them bring down their stress levels and recharge their batteries for whatever challenges they face. Rediscover how much a hobby helps, even for a few minutes a day.
Dr. Jain says he also has found that caregivers can often find relief in attending community events or getting together with friends just to maintain a sense of social connection. You may also benefit by connecting with nature, just through a five-minute walk outside, enjoying a starry night or a bright, blue sky.
Takeaway
Whether you’re new to a caregiving role or you’ve been at it for years, you can always benefit from more help, whether that’s in the form of more hands on deck in the home or from support groups and resources in your community or online.
“Reach out and ask for support from doctors and other family members,” Dr. Jain says. “Be firm about it. One person can’t always take care of all of it, so ask for help.”
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