Millions of people around the world care for loved ones who live with a disability or chronic condition. This role can sometimes take a toll on mental health, but what is the impact on caregivers during a pandemic? Medical News Today finds out.
All data and statistics are based on publicly available data at the time of publication. Some information may be out of date.
All around the world, millions of people have found themselves in a position where they provide some level of care for loved ones who live with a disability or chronic condition.
According to the International Alliance of Carer Organizations (IACO), there are at least 43.5 million people in the United States, 6.5 million in the United Kingdom, and 2.86 million in Australia who act as caregivers for a family member.
The Centers for Disease Control and Prevention (CDC) say that “informal or unpaid caregivers (family members or friends) are the backbone of long-term care provided in people’s homes.”
However, offering ongoing care to loved ones as they need it can take its toll on mental health, as caregivers may worry about their loved ones’ health or face shifting relationship dynamics and drastic lifestyle changes.
But if caregivers face a heightened risk of mental health issues anyway, what extra challenges do they face during the pandemic — a time of turmoil and increased insecurity?
To find out, Medical News Today spoke to two people with family members who live with disabling conditions, asking them about their experiences during the pandemic.
We also spoke to Christine Mortimer, a counselor with extensive experience in advising people with chronic conditions and their caregivers. Mortimer is affiliated with Relate North & South West Sussex, a registered U.K. charity that provides relationship support and mediation.
Mortimer cautioned, first of all, that each care provider will face different challenges from the outset, depending on the specifics of the condition with which their loved one lives.
“The mental health challenges for the carer can [include] lack of sleep because of 24-hour care and the toll that [fatigue] takes on the ability to function, which, in turn, can affect the ability to help with the physical needs of the patient and the effect that can have on the mental well-being of the carer,” she explained to MNT.
“Feelings of failure at not being able to ease the pain and anxiety of the patient can impact on the carer’s own self-esteem and sow seeds of doubt that they are not good enough for the job, leading to feelings of guilt and then low mood when depression could take hold,” Mortimer went on to add.
And this impact becomes even more serious in the context of a public health emergency, such as the current pandemic that has taken the world by storm.
A recent paper in the Journal of Pain and Symptom Management explains how the pandemic is likely to raise the stress levels of family caregivers and affect their mental health.
Some of the factors contributing to poorer mental health among caregivers in this period are:
- an increased sense of isolation and reduced access to official sources of support due to physical distancing measures
- increased financial strain
- delays or cancellations in formal primary care services for themselves and their loved ones
Mortimer agreed that caregivers are likely to face an outsized sense of strain at this time.
“In the current […] pandemic crisis, the challenges that carers face normally are exacerbated and heightened by the restrictions and changes to schedules and activities.”
– Christine Mortimer
“Day centers where carers can go and meet with other carers will have been closed. Parents with children [with severe disabilities] will [have] to cope at home because of the risk of sending them to […] a specialist school,” she explained.
“Group meetings for [people with chronic conditions] that offer some respite time for carers will all have been stopped for the time being […], thus adding to the pressure on the carer, which could impact on their mental health.”
Given the shifting social and healthcare conditions during the pandemic, those with family members living with disabling conditions are finding new ways of adapting to the current context.
MNT spoke to Camille, who has a parent with dementia who lives on her own. Camille explained how her parent’s condition has affected her and how the pandemic has exacerbated the situation.
“I think that dynamics in all my family relationships have changed. The relationship I have with my mom — [who has] dementia — has changed,” this contributor told us.
“Her dementia is progressing. I understand that her cognitive awareness of who I am has diminished and that there have been times when she has described me as ‘someone who comes in.’ […] I do think that this has featured more recently.”
Research that the International Journal of Geriatric Psychiatry published in 2018 explains that those who care for someone with dementia see a strong impact on their quality of life, including on their social relationships and their relationship with the family member with dementia.
Adding to the stress inherent to these shifting dynamics, during the pandemic, family caregivers face the additional pressure of becoming frontline providers for their loved ones.
“At the beginning of the pandemic, we were told to only leave the house for essential purposes, including supporting vulnerable people. From this point, I think I decided that I would just visit to make sure she was well, deliver food, and do any jobs that were required,” Camille told MNT.
“I think I turned my role into that of a ‘professional’ carer rather than that of a daughter. If I think about it, it was possibly a relief to see this as a job rather than take on the emotional side, as we were and still are all dealing with this isolation in the best way that we can.”
But this change in roles and in the relationship with the person on the receiving end of care and support can also turn into a defense mechanism for the caregiver.
“Maybe seeing my mum as a ‘client or service user’ is giving me the ability to move on and get things done without the emotional turmoil. Protecting my mental health, maybe,” Camille explained.
‘I doubt that my mom understood any of this’
Mortimer also told MNT that those who have a family member with dementia might struggle to explain why certain adjustments are necessary during the pandemic.
“A particular challenge […] might be the need to try to explain to [the person with dementia] why changes to their routine have become necessary, managing the confusion that the turmoil might be causing, and the resulting frustration of trying to remain calm and composed in the face of an open-ended situation outside of the carer’s control,” she said.
Camille also offered an example to this effect: “I […] [have used] the lockdown protocol as an excuse not to stay so long, saying to mom ‘I can’t stay too long because of social distancing,’ or ‘I can’t stay too long because the government says we can’t.'”
“These were good excuses for me. However, I doubt for one moment that my mom understood any of this. In hindsight, this makes me feel very guilty,” she told us.
With reduced access to formal support for themselves and their loved ones due to the pandemic, caregivers may increasingly turn to friends and family members where possible.
“As a family, we have not turned to any outside support yet, so we have managed this together, my sister and I helping each other,” Camille told MNT.
“Although I do the majority of the caring, my sister is integral support for me and mom, visiting regularly. This is important, as I feel that I am getting a break,” she emphasized.
Another contributor who reached out to MNT — Stella, whose partner uses a wheelchair — reported that the pandemic has been a “mixed bag” for her family.
Stella told us that, in some ways, the pandemic has actually ended up strengthening familial bonds.
“In a weird way, lockdown has made things a bit easier for us in practical ways. Our adult children are at home and helping out a lot, which has taken a massive weight off my shoulders,” she said.
“[My partner] is happier too, as he has his family around him. There is always someone in the house, so he does not feel as isolated as he did when it was just me and him, and I had to go out to work, leaving him alone. Our son is around to go out with him and keep him company, while our daughter and I work from the kitchen table. So we can thank lockdown for that!”
Yet Stella also expressed a worry that being in close quarters with her family members because of the pandemic may eventually also take a toll on mental health.
“The situation has undoubtedly changed my relationship with [my partner], and I sense that it is changing my relationship with [the rest of my family], but I am not sure how,” she told us.
Stella wondered whether the pandemic and ensuing lockdown might also have led to a role reversal between herself and her children: “Do they feel sorry for me? Are they trying to protect me? Do they think I’m a bad person? Are they parenting me? Or, am I using them? Am I being divisive and trying to get them on my side? This makes me confused and anxious!”
“Easing the lockdown will help us all. The freedom to go out and meet other people (however limited) will lift the pressures of living in each other’s pockets and give us all some space,” Stella added.
Both Camille and Stella reported increasing anxiety, frustration, resentment, emotional detachment, and guilt in relation to the heightened sense of stress and pressure that the pandemic has created.
“I feel anxious some of the time, and I feel a little resentful at other times. I feel cross with myself for not being able to really reach down and find the emotional attachment or even want it if I do find it,” Camille told us.
Stella similarly said that she “often felt resentful and guilty.”
But both Stella and Camille reported trying to minimize the sense of unease that they were experiencing.
“It’s not all about me,” Stella told us. “Coping with disability is very hard for everyone — particularly for the individual, but also for their partner, children, parents, and friends. I know that some of what I feel at the moment is circumstantial and will pass. Some of it will take more time!”
So what can people who care for loved ones do, right now, to minimize the impact of the pandemic on their mental health?
Christine Mortimer emphasized that the first step is to acknowledge that they also need and deserve support and understanding.
“It is now more important than ever for carers to think of their own well-being. Self-care is not selfish,” she pointed out.
“You can only care for somebody else if you are fit and well enough yourself. […] It sometimes takes enormous patience to be a carer, and in order to be able to stay calm and show patience and understanding to those people we are caring for, we need to be able to show ourselves the same patience and understanding.”
– Christine Mortimer
Mortimer also said that it is important for caregivers to take breaks from their responsibilities when possible — something that is particularly important at this time.
“Taking time out from caring duties is always important, but at the moment, that respite is crucial to the emotional and mental well-being of the carer,” she told MNT.
“So just being able to take some time during the day to go for a walk, ring or Zoom a friend, read a book, take a calming yoga class, or just go to the end of the garden and be alone for a while could make all the difference to the mood and ability to cope with the caring role,” she suggested.
Disclaimer: Camille and Stella are pseudonyms. We have changed the names of these interviewees to protect their identities.
For informal caregivers and their families who may need some extra support at this time, here are some online resources that provide additional information and advice:
- CDC caregiving guidelines
- U.S. National Alliance for Caregiving
- Carers U.K.
- Carers Canada
- Carers Australia
- Caregiver Action Network