It was 3 am and my parents heard their bedroom door knob rattle, the lights flickered on, and someone asked “is anyone in there?” Little did they know, this was going to be Grandpa’s nightly routine. If you ever lived with someone who has Alzheimer’s disease, you may have experienced this same situation. The Alzheimer’s Association found that caregivers of people with dementia lose about 3 hours of sleep per week, however, I believe this is an understatement in some households. It is easy to see how quickly the strain of caring for someone you love can spiral into complete exhaustion.
Caregiving for those with Alzheimer’s disease can be extremely stressful and can affect our emotional and physical well-being. In addition to this, there is the financial burden for the extra services that may be needed to help care for them. A diagnosis of Alzheimer’s disease for a loved one is so much more than another chronic illness. Regardless of the extent of the disease, it can cause caregivers to have mood changes, fatigue, and social isolation. The Alzheimer’s Association reports that almost 75% of caregivers are concerned about their own health status and feel they have a lower quality of life than those who are not caregivers. This stress can lead to increased risk for chronic illnesses such as hypertension, heart disease, and poor immune function. Since there is no cure for Alzheimer’s disease, the progression of this disease can only exacerbate these negative effects.
Each type of caregiver has their own, unique relationship to the person with dementia. Whether you are a spouse, child, close friend, healthcare provider or volunteer, caring for someone with memory loss is challenging. It is unimaginable seeing your spouse deteriorate over time. You think back to your wedding vows “in sickness and in health” and never believed that you would have to care for your spouse who may not even remember your name or your child’s name. My Grandpa had severe Alzheimer’s and my Nonnie would get so hurt that he could not remember who “Vinny” was, which was their only son. One time, Nonnie asked Grandpa to get Vinny in the other room. Grandpa proceeded to go into the kitchen and look at my parents and say “is there anyone with the name Vinny here?” There was so much pain in all their faces. It is no wonder why there is an increased risk of depression for caregivers.
Children of those with Alzheimer’s suffer somewhat differently. They see someone so capable in their years, yet, now they are “parenting” their parents. As we age, we tend to regress to child-like behaviors: diapers return, and we need someone to take care of us 24/7. I remember we had to “childproof” our home by removing all the gas stove knobs, zip-tie the cabinets and lock any doors that may potentially cause harm.
Safety concerns are also an issue for healthcare workers in nursing homes. They are providing direct care for those with dementia and feeling the strain of being overworked and understaffed. It is not reasonable to care for 20+ patients per shift and have that be the normal daily routine. Healthcare provider burnout directly impacts these workers and is the reason why there is such a high turnover rate in these types of facilities. The Alzheimer’s Association recognizes about 2/3 of nursing assistants are leaving their jobs yearly due to these staffing challenges. At what point do we create a universal safety culture for both patients and healthcare providers? Improving care and increasing resources for caregivers may help decrease the burden of caregiver’s stress.
Community resources, such as National Alzheimer’s Buddies, can help alleviate some of the burden from caregivers by providing additional support from college students. To further improve stress, the Alzheimer’s Association has several recommendations for self-care. Some of these include deep breathing exercises to promote relaxation, increasing physical activity, improving healthy eating habits, taking advantage of any respite care available, and making light of the changes by finding humor in the situation. When thinking of humor, it is not laughing at the person with dementia but laughing at ourselves in the extreme measures we may need to do to protect our loved one. There is also finding humor in the stories told by someone with Alzheimer’s. Grandpa would tell stories of his childhood memories and included the names Mario and Luigi. To our knowledge, these people did not exist in his life, but they were the names of the Nintendo characters he heard from the video games in our home. It brought a smile to our face, even in the most difficult times.
If you are a caregiver, please remember, you are not alone in the struggles surrounding Alzheimer’s disease, but some of these interventions may be helpful for coping. You never know, a 10-minute walk or 15 minutes of meditation may be all that you need to get through the day.
Medical Disclaimer:
The information on this site is for informational purposes only. It is not intended or implied to be a substitute for professional medical advice, diagnosis, or treatment. Please seek help from a healthcare professional, if needed.
References
Alzheimer’s Association. (2022). Alzheimer’s disease facts and figures. https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf
Alzheimer’s Association. (2023). Caregiver stress. https://www.alz.org/help-support/caregiving/caregiver-health/caregiver-stress