We talk a lot about the effect that Alzheimer’s disease, dementia and other memory-related illnesses have on the seniors who have it, but it’s easy to forget about the friends and family around them who are affected as well. Caregivers, especially, carry a heavy burden during this time. While caring for a loved one can be rewarding, it’s never easy, and most caregivers can experience severe psychological impacts from their ever-changing role.
Doctors sometimes call caregivers ‘hidden patients’ because of the difficulty of their role. Diseases such as Alzheimer’s and other dementias have a significant psychological effect on family members and caregivers, and many of them aren’t prepared for that.
In a 2020 survey, it was found 92 percent of Alzheimer’s caregivers carried high levels of stress. Part of this was due to the extra strain that came from caregiving during the coronavirus, but even before COVID-19, dementia caregivers have reported poor mental health. In the same survey, 80 percent of these caregivers reported having one or more symptoms that are typically found in individuals experiencing severe stress. The top reported symptoms of caregivers include sleep problems (36 percent), vigilance/being ‘super alert’ (34 percent), difficulty concentrating (29 percent), irritable/angry behavior (25 percent) and trouble experiencing positive feelings (23 percent).
How Changing Family Dynamics Affects Caregivers
While the relationship between adult children and a senior parent changes drastically during the course of Alzheimer’s disease, dementia and memory loss, sibling and spousal relationships are significantly affected as well. According to the survey, caregiving can serve to strengthen these relationships but, unfortunately, it’s more common that caregivers feel a lack of sibling support and wish their spouses or partners would help them out more.
So many individuals feel like they’re alone, which is why acknowledging the issues and having a supportive network is so important. These diseases are hard work and are difficult for everyone involved, but it becomes much easier when you know you’re not the only one going through it and that you have a loving, supportive team of people who are willing and able to help.
Stress
It should come as no surprise that stress – whether physical, emotional, mental, financial and others – is the biggest psychological issue affecting caregivers. Caregiver stress can manifest in many ways, including denial about how the disease is affecting their loved ones, anger at the individual, irritability in general, a lack of concentration, sleeplessness, overwhelming exhaustion, crippling depression and declining physical health.
Isolation and Loneliness
Because of stress, caregivers may begin turning down opportunities to socialize with friends or family. They may also find themselves too busy or too exhausted to reach out to others. This can snowball until the caregiver finds him or herself socially isolated, which leads to feelings of loneliness, boredom and increased depression. It also means that the senior with dementia will become socially isolated as well, since the caregiver won’t have the energy or desire to get them out of the house and doing activities.
Grief
We often think of the grieving process as something that’s reserved when a loved one passes away, but it’s also a common occurrence when someone you love has dementia. Since these diseases gradually take away the person you love, you may find yourself moving through the different stages of grief. Some days, you may be accepting, while other days you may be in denial, or you find yourself angry or guilty. These feelings are common and should be recognized and accepted.
Guilt
Caregiving is an admirable task, but it’s also incredibly hard – made harder by the guilt you may have because of your thoughts and feelings during this time. You may feel guilty because you feel like you aren’t doing enough, or because you didn’t spend as much time as you should have with your loved one before the diagnosis. You may also feel guilty because you want more time to yourself, or you’re often angry, disgusted or embarrassed with your loved one even though you know they can’t help themselves.
Mental Health Checklist for Caregivers
Caring for yourself is one of the best gifts you can give your loved one with dementia. Don’t think of it as a selfish act – in fact, being healthy means you’re able to provide better care. Here are some things to be aware of to help you make sure your mental health is as good as it can be.
- Know what help is available in your community. Senior centers, visiting nurses, adult day programs, meal delivery, respite care and in-home assistance are all helpful services to help relieve your burden.
- Use relaxation techniques. Breathing exercises, meditation and yoga are great ways to calm yourself, keep your blood pressure down and keep stress to a minimum.
- Join a support group. Sharing with others who are in your position can be very therapeutic. If you feel like you could use a little more than commiserating, consider a therapist or counselor to help you deal with everything.
- Exercise. Even 10 minutes of exercise per day can help improve your overall well-being. Go on a walk or run, garden, go dancing or do another activity you enjoy.
- Stay healthy. Eat well, rest as much as you can and visit your doctor on a regular basis.
- Find time for yourself. Do things that bring you joy, such as reading, taking an exercise class or simply napping.
- Reach out to friends and family. To avoid loneliness and isolation, make plans with friends or ask family members and neighbors to help you when needed. Stay involved in your usual activities like book club or weekly lunches with friends.
- Plan ahead. It’s not always enjoyable to think about the future, but by having financial and legal plans in place, you’ll be able to gain peace of mind. Make plans with family and work with elder law attorneys and financial advisors so as your loved one’s needs change, you won’t have to make any rushed decisions.
- Accept what you can and can’t do. You’re only human, so don’t expect superhuman things from yourself. Understand and make realistic decisions about the things you can control, and accept and let go of the things that are beyond your control.
Enhancing Quality of Life
Bridges® by EPOCH memory care communities have been developed from the ground up to anticipate, meet and exceed the needs of our residents and their families. Our team of remarkable people, the exceptional care and services we offer, and the purposeful design of our buildings all combine to create the most rewarding, secure and nurturing lifestyle possible for our residents.
Bridges® by EPOCH communities are located in Connecticut, Massachusetts and New Hampshire, in the following towns: Norwalk, CT; Stamford, CT; Trumbull, CT; Andover, MA; Hingham, MA; Lexington, MA; Mashpee, MA; Pembroke, MA; Sudbury, MA; Westford, MA; Westwood, MA; and Nashua, NH.