Scientists have identified a gene that appears to increase the risk of Alzheimer's in women, providing a potential new clue as to why more women than men are diagnosed with the disease. (Rido/Adobe Stock via CNN)
As family caregivers embark on a journey of compassion, selflessness, and dedication to those who need them most, behind the scenes lies a profound emotional burden that often goes unnoticed. The emotional aspects of family caregiving can be overwhelming, impacting the caregivers’ mental health and ability to provide the best possible care. It is crucial to shed light on the realities of this demanding role and acknowledge the dire need for adequate support.
Family caregivers like “Jane” might feel isolated and overwhelmed and unsure of where to turn for support. Jane has a full-time job and also cares for her elderly and chronically ill mother. Jane’s job has good benefits, and her mother has some retirement savings, but Jane is still unable to afford more than occasional in-home care, and assisted living is far outside her budget. Like many caregivers, she and her mom have too much money to qualify for public benefits like MediCal but not enough to pay for long-term care. Juggling work and caregiving means she spends her days worried that something will happen to her mom when she can’t be there, and she doesn’t feel like she can then leave her mom alone to see friends or do things for herself.
This reality has a toll.
Recent statistics reveal the gravity of the emotional challenges caregivers face. According to the 2022 annual California Caregiver Resource Centers report, caregivers reported mental health concerns, with more than half experiencing strain (59.8%). A significant portion reported moderate to severe depressive symptoms (21.2%), indicating the profound impact caregiving has on their emotional well-being. Furthermore, 32.7% reported sleep disturbances, and 22.8% admitted to experiencing significant loneliness.
The emotional journey of a family caregiver, especially those who have challenging relationships with their family member, is riddled with unique hardships. Witnessing a loved one’s decline or dealing with the unpredictability of their condition can lead to immense stress and anxiety. The constant need to stay strong and maintain composure further compounds the emotional burden, often resulting in feelings of helplessness and frustration.
Moreover, the societal expectation that caregivers should “just cope” or “handle it all” without seeking help can be harmful. Caregivers might hesitate to express their emotional struggles due to fear of judgment or perceived inadequacy. This emotional suppression can exacerbate their distress and hinder their ability to provide the best care possible.
One of the glaring realities is the lack of adequate support for caregivers. Society must recognize that caregiving is not a solo mission but a collective responsibility. As caregivers navigate the complexities of their roles, they need a robust support system to lean on. This includes emotional support, respite care, access to counseling services, and educational resources to help them better understand and cope with their challenges — such resources will be available at the September 2023 virtual Caregivers Count Conference.
Caregiver support groups can play a vital role in providing a safe space for sharing experiences, emotions and coping strategies. Furthermore, policymakers, health care providers, and employers must collaborate to develop comprehensive support programs that address the unique emotional needs of caregivers. California’s Master Plan for Aging and Santa Clara County’s recent report on caregiving includes policy recommendations to support family caregivers — these solutions could involve flexible work arrangements, financial assistance and mental health resources tailored specifically for caregivers.
The emotional aspects of being a caregiver are profound and often overlooked. Still, by standing together, we can address and alleviate the emotional burden on caregivers and create a more compassionate world for those who give so much of themselves to care for others.
Christina Irving is the client services director of the Family Caregiver Alliance. Vanessa Souza is the senior manager of community engagement of the Alzheimer’s Association.
Originally published at Christina Irving, Vanessa Souza