There is no such thing as an “average” caregiver. Specific families, cultures, and expectations concerning duties they are supposed to perform — even the amount of pressure they feel to take on the caregiving role in the first place — are all variables that affect the experience of a caregiver. And because every caregiver experience is a unique situation, knowing how one caregiver experiences the role tells us very little about how other caregivers, even if they are performing similar duties, experience their own role.
When trying to identify challenges and prevent caregiver burnout, most people tend to focus on these duties of caregivers — how many hours are spent cooking, cleaning, providing personal care, and more. However, through our 35+ years of research, we have discovered that burnout is not a result of the hours put into doing laundry or picking up medication from the pharmacy. Instead, it’s a result of identity discrepancy.
The first time a woman bathes her mother-in-law. The first time a wife has to take away her husband’s car keys. The first time a person ceases to see themselves as a daughter or wife — but instead as a caregiver.
We call this Identity Discrepancy — a conflict between how a caregiver sees themselves in relation to their loved one and the caretaking tasks they are now required to provide. Taking on new responsibilities as a caretaker makes caregivers see themselves as more of a nurse or a home aide, rather than a loved family member. And this conflict between their identities is what can cause distress. The level of distress depends on how much a caregiver’s current identity within their relationship clashes with what the caregiver duties they are now responsible for.
Caregiving is a series of transitions that result from changes in the caregiving context. Over time, the needs of a family member will increase in quantity and intensity, and so naturally, the duties of a caregiver will increase as well.
In the beginning, caregiving might look like picking up groceries for mom on the way home from work. Over time, it could evolve into the caregiver moving in with mom to give them 24/7 care. The visits become less about “catching up and spending time” and more about “cleaning, cooking, and taking care.” Through these changes, caregivers will experience different stages of caregiving.
The process of identity change in caregiving often includes some of the below phases:
A son may start taking his mother shopping for groceries when it becomes difficult for her to go on her own. A wife may take on financial tasks when her husband’s dementia progresses even though, at one point, it was part of his responsibilities in the household.
In many cases, these activities involve helping a loved one with personal grooming. For some caregivers — adult children, for example — and for recipients, this type of care can cause varying levels of discomfort. This phase may require duties that the caregiver is not comfortable with, and can cause the caregiver to leave their caregiving role. This can cause other changes like a move to a nursing home for a family member.
Caregivers see themselves more as caregivers than a loved one who occasionally drops by. And although the option of moving the care receiver into a nursing home is considered at every stage, it is now reconsidered more frequently.
Informal caregiving doesn’t end here, but the new arrangement allows the caregivers to recover a part of their original identity. Typically, the responsibilities of the caregiver now include legal, financial, and future care planning of the recipient in the new living environment.
Not every caregiver goes through every phase, and transitions aren’t always necessarily in one direction. The only uniform part of the process is that caregivers experience distress when their identity doesn’t match up with the activities they are doing — and this prompts a movement between phases. Their distress is relieved by the transition, as their identities once again begin to match up with their caregiving activities.
TCARE is grounded on focusing on identity discrepancy as the primary driver of the emotional drain on a caregiver. By addressing these transitions in a caregiver’s journey, and tailoring interventions specific to their needs, we have found great success in reducing caregiver burnout. Currently, 84% of caregivers report lower levels of stress and depression in as few as six months after a TCARE intervention, and nursing home placement is delayed by 21 months.