You likely have never heard of Karl Kosloski, but he just died at age 66 and if you are a family caregiver, you owe him some thanks. Kosloski, a retired University of Nebraska at Omaha professor, and his research partner, Dr. Rhonda Montgomery, developed a concept now known as the “caregiver identity theory.” The theory basically legitimizes the crappiness of the caregiving experience and tells it like it really is: It recognizes the stress and depression caregivers feel and emphasizes the need to support them. If ever there was a cheerleader for caregivers in the world of caregiving research, Kosloski would be near the top of the list.
As he once wrote: “Clearly, family caregivers are the core of the long-term care workforce, and their well-being is intricately linked to the well-being of frail older adults. ... If social workers are to effectively serve older adults, it is imperative that they understand the contributions and needs of family caregivers.”
Here are five things his contributing research found that caregivers should thank him for:
1. Figuring out that caregiving impacts women more.
In the absence of a spouse, a daughter is most likely to assume the role of caregiving for a parent. Daughters are twice as likely as sons to become the primary caregiver and in the “hierarchy of obligation” to elderly family members, it is daughters-in-law and not sons who are the next lines of resort, he found. Although the participation of sons as primary caregiver rose by 50 percent between 1984 and 1994, they still accounted for only 15 percent of primary caregivers in 1994.
Men need to step up.
Women caregivers who leave the workforce to care for a loved one suffer the consequences of not just a reduced income, but also a negative impact on their future retirement and Social Security benefits.
2. Figuring out that caregivers need a break.
Respite care is the most frequently requested service by caregivers of dementia patients and the one thing most frequently prescribed by practitioners. The prevailing belief is that a simple break will relieve the burden or stresses associated with caregiving and allow family caregivers to continue doing what they do. It can be anything from having a friend or relative stay with the patient while the caregiver goes out to the movies or an adult day care program where someone else watches the patient for a few hours.
Good luck finding this. Most adult day care places won’t take patients who wander or are incontinent. And of course, you still have to get the patient there and back.
Think about it: Not even trained professional nursing home staff works 24/7 without a break. But family caregivers do.
3. Figuring out that caregiving takes a toll on the caregiver.
The demands of assisting with personal care and dealing with the problem behaviors of the care recipient and the need for constant supervision are stressful and lead to psychological distress, changes in social activities, and negative feelings about caregiving, he noted. Caregivers experience greater depression and anxiety and increase their use of psychotropic drugs.
It’s why we’ve said caregiving sucks and caregivers need support ― lots of it. It’s also why we wish the presidential candidates would talk about the needs of the nation’s 34 million family caregivers instead of who tweets what when.
4. Figuring out that caregiving changes everything in the relationship.
As the needs of the patient increase in both time and intensity, the relationship changes, Kosloski wrote. The initial familial relationship gives way to a relationship characterized by caregiving. Simply put, your partner becomes your patient and you become the parent when you used to be the child.
For most caregivers of persons with chronic conditions or dementia, the change in role identity is a slow and insidious process that occurs in stops and starts. Initially, the care needs of the elder may be relatively small and the corresponding care tasks may represent only minimal extensions of the familial role relationship. For example, a daughter may quite easily and without experiencing stress assist her mother who has some memory impairment with paying bills, shopping, or transportation to appointments. As the disease progresses, the needs of the mother, and resultant demands placed on the daughter, increase. The daughter’s activities gradually increase in intensity and become inconsistent with the norms that she has internalized with respect to her role as a daughter. Consequently the daughter begins to assume a “caregiver” identity. Thus, over time, the caregiving activities transform the initial mother–daughter relationship into a caregiving relationship.
Here are a few other truths about this shift: It’s permanent, irreversible and odds are that at some point, you as the caregiver will resent it.
5. Figuring out that caregivers need the right services at the right time.
The core tenet of the caregiver identity theory is that caregivers experience distress when they they are asked to do things that are inconsistent with how they see themselves. For example, a daughter may be fine assisting her elderly father with shopping and banking matters, but becomes distressed when her caregiving escalates to helping him bathe and cooking his meals. Those activities are now discrepant with her previous role identity, Kosloski said. Further, these things take a bigger bite out of her life and take time away from her other roles as a spouse, mother, friend, employee.
It’s precisely at this intersection when a caregiver needs help. The introduction of in-home chore services, aides to assist with bathing and toileting, respite care, and meal programs can accomplish this. A daughter who cares for her father may maintain her identity standards and have sufficient time for other roles in her life if she can shift some care tasks to helpers.
And the support network for caregivers has so many holes in it that it’s rare to hear of a caregiver getting the help they need. Medicare does not pay for non-skilled personal care such as help with bathing, dressing, eating, getting in or out of bed, and using the bathroom. It does pay for medically necessary skilled care, which is usually available for a short time after hospitalization.
For all of the above, and much more, let’s say a huge thank you to Karl Kosloski.