How The Pandemic Has Affected Caregivers Of A Loved One With Alzheimer's

Know how the pandemic has impacted the lives of Alzheimer’s caregivers as they try to balance multiple responsibilties. 

The pandemic has hit all of us hard and many Alzheimer’s caregivers have been impacted adversely, with stress taking a toll on them, over the last few months. Tanvi Mallya, a Neuropsychologist, and the founder of Tanvi Mallya’s ElderCare Services, Mumbai, says: “Lockdowns, stay-at-home orders, and fear of COVID-19 infection means family caregivers are caring for their loved ones at home 24/7, with little or no help from home health aides, or visits from therapists.

The challenges that the pandemic has thrown on caregivers

Non-availability of medical help, household helps and paid caregivers: Pandemic has had a massive impact on caregivers as they are unable to take their loved ones with Alzheimer’s to the doctor in case of an emergency, believes Anupama G who was a caregiver to her late husband for over a decade.

“This has significantly increased the burden of work for the caregivers. Being just at home 24/7 for the past six months and taking care of a loved one with Alzheimer’s or Dementia is a tedious job for a primary caregiver,” she says.

Increased caregiver burnout: COVID-19 related anxiety has made it harder for Dementia caregivers and led to increased levels of stress in some cases. Some caregivers now lack support thanks to social distancing, says Mallya. “Not only are caregivers increasingly isolated from the outside world, they now have the heightened fear of transmitting the Coronavirus to the elderly they’re caring for,” she adds.

Caregivers in India often find themselves working from home, caring for out-of-school children, and tending to a sick parent or spouse—all while being isolated from extended family, friends, and resources like visiting therapists, house help, nurses and attendants.

Mallya thinks the pandemic has added to the caregiver’s burden. “The pandemic and lockdowns have disrupted routines of the elderly, which can have a devastating impact on someone with Alzheimer’s and other forms of Dementias. It may increase anxiety among them and in some cases make other symptoms worse. Dealing with this in the absence of or lowered external help has further added to the challenges of caregiving in the pandemic. All these factors have boosted caregiver burnout in general.”

Adverse impact on caregivers’ mental health: The constant cycle of worry, panic and anxiety without relief is the worst outcome of the pandemic. “With no entertainment outside the four walls of the house and constant diet of unending misery from the news feeds, TV news and newspapers are some of the worst things that all of us go through. And when you have to remain upbeat for your loved one, regardless of your feelings, emotional exhaustion is just around the corner,” says Indrani Bose, who has been a caregiver since 1994, first for her ailing in-laws and then for her parents.

Tips to relieve caregivers during the pandemic

• Acknowledge the importance of support and understanding for caregivers.
• It is important for caregivers to take breaks from their responsibilities when possible.
• If the elderly live with more than one caregiver, that is, with the family, it might be a good idea to distribute chores, thereby splitting the burden of caregiving.
• It is also a good idea to digitise the elder’s routine. So, if there was a particular time where they went for walks/met a friend/had a therapist visiting – it might be a good idea to see if some of these can be done online. These periods will serve as a respite for the primary caregiver and also might be additionally beneficial for the elderly.
• The caregivers must focus on medication and listening to music as it is helpful for Alzheimer’s patients as well. Play light music in the room wherever your loved one with Dementia and Alzheimer’s takes rest.