Caring for the Alzheimer Caregiver First During COVID-19

COVID-19 has fundamentally changed the daily routine of people around the globe. Older adults are at higher risk of severe symptoms if diagnosed with COVID-19 and have been encouraged to isolate. Isolation and disruption of daily routines for persons with Alzheimer disease and other dementias is especially difficult for their mental and physical health, but the health of their caregivers is just as important. Health care professionals need to educate caregivers and family members to manage their stress and anxiety during the COVID-19 health crisis, so that they can thrive in the “new normal” and continue to provide care to the vulnerable persons and family.

It is no secret that COVID-19 has thrown a wrench into the everyday lives of the global population. But how has isolation and the fear of exposure impacted individuals who are most vulnerable and who are unable to recognize and remember the severity of the situation, such as older adults with dementia? This is a population that often struggles with receiving additional care in the home, and COVID-19 has not only disrupted care within the home, but also opportunities for respite outside of the home. Fear of exposure to COVID-19 has led caregivers to reduce or eliminate any contact with anyone that does not live in the home whenever possible. Social distancing and stay-at-home guidelines, according to Azarpazhooh et al, are the most effective way to protect persons with dementia (PWD).¹ We have learned that many informal caregivers have reduced or completely cut off any outside help due to the paid caregiver’s own health conditions or due to concern of someone else coming into the home that would expose the family and the PWD. Adult day care facilities have been forced to shut down their operation, which has kept usually socially active PWD physically and socially isolated at home. The sandwich generation and informal caregivers² are now struggling to work from home, homeschool their children, and provide care for a PWD.

Informal caregivers were propelled by COVID-19 into a situation where their caregiving responsibilities have increased or changed drastically. Caregivers now live and share the same space with the person with dementia 24 hours a day. The need for constant supervision has resulted in increased stress, anxiety, and depression for both the caregiver and the PWD. The caregiver is dealing with unusual circumstances from the impact of COVID-19 on their daily routines and responsibilities. On the other hand, PWD have experienced changes in their daily routines because of the stay-at-home restrictions and inability to understand the changes imposed on them. The numerous changes that emerged unexpectedly from the COVID-19 pandemic have placed additional obligations on caregivers experiencing a higher level of stress, anxiety, and depression. Caregivers worry about the impact of exposure on the PWD and themselves and also worry about their own physical and mental health. A more sobering point is that dementia is a predictor of death after exposure to COVID-19,¹ and it is important to continue any ongoing medical treatment via telehealth and available technology.³ 

The COVID-19 pandemic has affected all PWD and their caregivers in some way; however, it has placed an extreme burden on Latinos and African American communities due to multiple factors, including access to caregiver resources, financial instability, access to health care services, comorbid conditions, residence in high-density communities, and residence in multigenerational households.⁴  Health disparities are more evident in impoverished communities as a result of extreme poverty and lack of adequate services, and racial and ethnic differences are a factor in higher rates of hospitalizations and death.^5,6 These communities also have a higher risk of exposure to COVID-19 due to social determinants of health. The impact of COVID-19 on racial and ethnic populations has propelled into focus the reality of health disparities, requiring attention to the role of social determinants of health as interventions are developed and implemented to address disparities in living and working conditions of disadvantaged groups.⁵

As health care professionals, we need to educate caregivers and family members to manage their stress and anxiety during the COVID-19 health crisis so that they can thrive and adapt to the “new normal” while providing care to the PWD. Professionals can instruct caregivers to follow the below suggestions to reduce potentially avoidable stress and to encourage calmness in the PWD, hopefully making the symptomatic behaviors of the disease more manageable.  

Advice for Caregivers on How to Adapt to the “New Normal” Stay Informed

It is essential to encourage caregivers to stay informed about the pandemic, to be aware that the information changes from day to day, and that there is much disinformation due to the newness of the disease. Caregivers must recognize that this health crisis has affected the entire world and be aware of incorrect, inconsistent, or inaccurate information. Information about COVID-19 can be obtained from many sources and in many forms; however, it is essential to explain that not all sources have the most updated or accurate information. Caregivers need to get their information from a trusted official or governmental source to ensure that the information is precise and current, as unofficial information can lead to unnecessary fear and anxiety. 

Maintain a New Routine

Routines are vital for caregivers—whether they have been taking care of a person or are new caregivers thrusted into this role due to COVID-19. We recommend that caregivers focus on their personal power and remain positive. It is essential to maintain or adopt routines at home to ensure that the PWD is fully engaged. The routine should include scheduled mealtimes, rest, and relaxation, in addition to engaging and fun activities. For the PWD to actively participate in an activity, it is important to ensure that the activity is appropriate to their level of cognitive function. 

Similarly, it is also important that caregivers also schedule some free time for themselves to be able to do something pleasant and enjoyable. Most caregivers state that they do not have time for themselves because of their caregiver responsibilities. Making time for a cup of coffee or tea, a phone call for pleasure, or time to read a book can be a relaxing and energizing activity. Caregivers need to be as sensitive to their own needs as they are to the PWD needs, if not more. Caregivers have expressed that, due to COVID-19, their usual responsibilities have become more stressful. There is much more anxiety and concern for the PWD as a result of being isolated in the same space, and it can affect their emotions throughout the day due to more conflict with PWD, which can result to added feelings of confusion and terror for what the future may hold.  

Socialize Regularly With Others

It is very important for caregivers to maintain social connections with friends and family and to feel a part of their communities. Thanks to advances in technology, caregivers can connect with family and friends via video platforms and also participate in support groups and educational activities. Many social service agencies have moved their services from in-person to phone and online, providing caregiver activities during the pandemic that can be attended virtually from the safety of the home. It is essential to encourage caregivers to reach out to neighbors and friends to establish new social activities that they are comfortable with during COVID-19. Encouraging physical activities such as walking, gardening, and performing low-risk daily activities can also contribute to their overall well-being. Caregivers should not change their schedules too much, though, because that could create potential behavior changes in the PWD. If behavior changes do occur, a caregiver may provide rewards to address symptomatic behaviors and redirect the PWD. Caregivers should inform the physician following the PWD’s disease progression of any changes in behavior, cognitive functioning, or mood immediately. 

Conclusion

Adapting to the changes that the COVID pandemic has brought into the lives of people with dementia and their caregivers and families is an ongoing challenge. We are all learning together how best to support PWDs and caregivers as the crisis evolves. What works and what does not work might not be the same for everyone, but by focusing on the caregiver as well as the PWD is essential to the health and well-being of both. 

References

1. Azarpazhooh MR, Amiri A, Morovatdar N, et al. Correlations between COVID-19 and burden
of dementia: an ecological study and review of literature. J Neuro Sci. 2020;416(117013). doi:10.1016/j.jns.2020.117013 

2. Parker K, Patten E. The sandwich generation. Pew Research Center. January 30, 2013. Accessed November 3, 2020. https://www.pewsocialtrends.org/2013/01/30/the-sandwich-generation/ 

3. Steinman MA, Perry L, Perissinotto CM. Meeting the care needs of older adults isolated at home during the COVID-19 pandemic. JAMA Intern Med. 2020;180(6):819-820. doi:10.1001/jamainternmed.2020.1661

4. Centers for Disease Control and Prevention. Health equity considerations and racial and ethnic minority groups. Updated July 24, 2020. Accessed November 6, 2020. https://www.cdc.gov/coronavirus/2019-ncov/community/health-equity/race-ethnicity.html 

5. Lewis NM, Friedrichs M, Wagstaff S, et al. Disparities in COVID-19 incidence, hospitalizations, and testing, by area-level deprivation-Utah, March 3-July 9, 2020. MMWR. 2020;69(38):1369-1373. Accessed November 3, 2020. https://www.cdc.gov/mmwr/volumes/69/wr/mm6938a4.htm

6. Platt L, Warwick R. Are some ethnic groups more vulnerable to COVID-19 than others? The IFS Deaton Review. May 2020. Accessed November 3, 2020. https://www.ifs.org.uk/uploads/Are-some-ethnic-groups-more-vulnerable-to%20COVID-19-than-others-V2-IFS-Briefing-Note.pdf