Doctoral Students Publish a Review to Support Caregivers
November is Family Caregivers Month, a time to recognize caregivers, raise awareness of caregiving issues, and increase support. Palo Alto University (PAU) PhD students, Nicole Greenberg and Amanda Wallick, published a review to highlight the unique struggles of caregivers of those with dementia as a result of the COVID-19 pandemic. The review, which was a collaboration with PAU professor Lisa Brown, PhD, also offered recommendations regarding how to best support dementia caregivers.
“In 2020, there was a lot of media attention on how the pandemic was affecting nursing homes, but there wasn’t much coverage about the impact on older adults who lived at home and those who cared for them,” says Greenberg, a fifth-year neuropsychology practicum student in PAU’s clinical psychology PhD program. “In our investigation, we discovered the lack of current empirical literature on caregiving during global pandemics, highlighting the need for further research in this population.”
Due to the pandemic, stress greatly increased among caregivers because they had to manage their own physical, mental, and emotional needs in addition to their duties as caregivers. Also, the majority of these caregivers did not get paid for their efforts as most of them were caring for family members.
The review revealed challenges that were specific to caregivers who care for individuals with dementia. Due to the pandemic, physicians and nurses wore masks when administering care in private homes. For many patients, the visual of people wearing masks in their homes was confusing and, for some, caused behavioral issues that the caregiver needed to manage. Conversely, some healthcare providers discontinued home-care visits during the pandemic, which resulted in a disruption in daily routines and structures (which is particularly distressing for people with dementia), not to mention the stress of caregivers having to perform minor medical tasks such as tube feeding, injections, or catheter care.
Also, before the pandemic, many caregivers brought their patients to a nursing home or adult day program to offer themselves a break from their duties. Therefore, when nursing homes and adult day programs closed their doors to visitors, this had a big impact on the well-being of caregivers.
“People didn’t realize that when nursing homes closed their doors to visitors this had a big impact on older adults living in the community,” says Greenberg. “Since there were no more visitors, game nights, or any group activities at nursing homes, the burden on caregivers of individuals with dementia increased, and subsequently this had a negative impact on the care they provided.”
Although shelter-in-place orders were intended to keep communities safe, these restrictions increased levels of social isolation and loneliness—not just for people with dementia but also for their caregivers.
“The increase of social isolation and loneliness in older adults due to COVID restrictions should have had more attention in the media and in research,” says Greenberg. “A lot of older adults report themselves as socially isolated and lonely and since we know that these are risk factors of dementia, I think we should be doing something about it.”
Recommendations to Support Dementia Caregivers
The purpose of this review was not only to identify the unique challenges of dementia caregivers but to also provide tangible solutions and strategies for these challenges, as well as reduce feelings of loneliness and stress.
“We recommend that caregivers think creatively about solutions for behavioral issues,” says Greenberg. “For example, if the patient is confused due to people wearing masks in their home, the caregiver can role-play a character from an old movie where someone had to wear a mask. The patient may not remember what they ate for lunch, but they might remember a movie from their childhood, and this could reduce fear or resistance.”
Other creative examples that provide structure and routine for the dementia patient include doing chair yoga, going for a drive close to home, taking advantage of online art or cooking classes, and streaming live religious services or musical events. Also, setting home-based goals for the day (such as organizing a closet) can provide a feeling of accomplishment for people with dementia.
Since good hygiene is essential (particularly during the pandemic), caregivers are encouraged to model thorough hand-washing routines and other hygienic protocols to promote safety.
“It is helpful for caregivers to leave visual cues, such as hand-written notes, next to the task the patient needs to do,” says Greenberg. “For example, leaving a note that says, ‘wash hands with soap and water for 30 seconds’ next to the bathroom sink, or, ‘remember to wear a mask’ next to a stack of masks near the front door.”
Lastly, Greenberg advises caregivers to take care of themselves and their own well-being. She recommends that caregivers ask their friends or family members to watch their patients for short periods of time so that they can go for a walk, runs some errands, or get some extra rest. Friends and family members of caregivers can also offer to cook a meal, do their grocery shopping, or include them in small group socializing.
“Social engagement is really important for mental health and caregivers need to feel supported, cared for, and not alone,” says Greenberg. “We recommend that caregivers create safe and trusted groups of friends to socialize with to mitigate feelings of isolation and loneliness.”