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August 15, 2020

Impact of COVID-19 on In-Home Dementia Caregivers

The impact of COVID-19 on caregivers over the past five months has been an intense issue we need to acknowledge. Caregivers of persons with dementia deal with a unique set of challenges.  For example, many persons with dementia wander or become incontinent.  Some may roam at night.  All of these symptoms command constant supervision.  Bathing, eating, toileting, taking medications and getting dressed require some or complete assistance.  The loved one may lose their ability to communicate.  If they are experiencing pain, depression or paranoia, their method of expression may be agitation, anger or even violence.  

Caregivers are Stressed Out Beyond Belief

According to the Alzheimer’s Association, caregivers of persons with dementia are more highly stressed compared to those caring for persons without dementia.  Their level of anxiety and depression is higher.  They are more prone to emotional, financial and physical difficulties.  If employed, they are more likely to reduce their hours, turn down a promotion or retire early.   

For dementia caregivers, COVID-19 has spawned a stress level on steroids.  They and their loved one are more isolated from extended family, friends and social activities.  Critical resources such as in-home help or respite care may no longer be possible.  They now have little to no time for themselves.  They may worry about their loved one or themselves being hospitalized during the pandemic. Caregivers fear what will happen to their loved one if they get the disease.

Some caregivers have lost their job and are afraid of possible eviction from their home.  The caregiver may also be caring for children no longer going off to school.  While the person with dementia may not be able to comprehend what is going on, they will react to the increased anxiety of the caregiver.

People who have Dementia are Struggling Too

In addition to caregiver stress, COVID-19 compounds confusion for the person with dementia.  Their daily routine has significantly changed.  They may become agitated about new rules and visitor restrictions.  They may be bewildered when they encounter people with masks.  If they accompany their caregiver in a store, they might take their mask off.  They may approach strangers without social distancing.  Washing their hands or using a hand sanitizer may be something they refuse to do.  They may ignore their caregiver’s pleas to not touch their face. All these possibilities are often racing through the caregiver’s mind throughout the day.

The person with dementia might keep asking why things are different.  The caregiver may have to repeat the details of the pandemic over and over again.  Although desperate for relief, the caregiver may feel it too risky to place their loved one in a care facility.  They may feel hopeless and trapped, substantially imperiling their health. The never-ending cycle of chaos can be overwhelming.

Caregivers Could be the Next COVID-19 Victims

A recent survey on the effects of COVID-19 found that 80% of Alzheimer’s caregivers reported having one or more symptoms typically found in persons experiencing severe stress.  Among the reported symptoms were sleep problems, constant pressure to be vigilant, trouble concentrating, being irritable, and difficulty feeling positive.  With the added stress of increased isolation, worry, fear and financial concerns, their disconnection from support services could push them to the breaking point.  Without relief, some dementia caregivers are at risk of becoming the next COVID-19 “victims.” 

During the pandemic, the Alzheimer’s Project is providing many support services that can help.  We offer telephone counseling and online support groups over Zoom. We also have a virtual Support Group on Facebook where we do sing-a-longs, coffee chats, ageless grace classes, crafts and bingo.  For further information, please call us at (850) 386-2778 or contact us.  Also, through the Livable Florida initiative, your loved one can receive a robotic pet to play with or a MP3 player to hear their favorite music.  If interested, please click here to submit a request.

You Can Help Provide Relief

If you would like to support caregivers and their loved ones with dementia, there are many ways you can help! We are currently looking for AmeriCorps and Relief Volunteers to provide in-home respite care for families in the Florida Big Bend. If you cannot help in person, consider donating or giving your time virtually. Call (850) 386-2778 and we would be happy to discuss more volunteer details with you!

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