A friend of mine owns her own business. If she does not work, she has no income. She is also a care partner for her spouse, who has dementia. When I was at her place of business last week, I saw the toll from caring for a person living with dementia.
I saw her interactions with her clients being constantly interrupted. Jan would be in mid-sentence and her phone would chime. Glancing at the caller ID, Jan would apologize: “It’s the home health aide. I have to take this.” The clients mumbled understanding, but I could see their patience wearing thin after the third interruption in the space of 15 minutes. The interruptions were more than an inconvenience for Jan. She had to mentally regroup after each interruption, which meant that her mind had to exert extra effort to return to the conversation.
Here But Not Here
Like most business owners, Jan’s work week is greater than 40 hours…more like 60. She cannot afford to hire a sitter for 60 hours/week to stay with her spouse while she runs the business. Always creative, Jan has a sitter for a few hours during the busiest times of her day. Because her shop is next to her home, Jan has planned times where she leaves her sole employee to run over to the house and check on John. This arrangement seems good on the surface, but the reality is that the back-and-forth movement gives Jan no time to think or to be proactive in either role. She is constantly reacting to issues at her shop and problems in her home. By dividing herself up between two places, she is never really present in either one.
Care partners who remain in the work force often do so out of necessity, for income, retirement, benefits, or some combination of the three. According to AARP, family care partners of persons with dementia spend an average of $11,000 per year; this is twice the amount spent by family care partners of adults without dementia. The $11K does not include lost income from cutting back hours, turning down promotions, or losing business as in the case of people like Jan.
No Workplace Is Spared
I believe that many corporations and businesses underestimate the effect of dementia caregiving on their bottom line. When I was caring for my mother-in-law, I re-arranged my work schedule to take her to her many medical appointments. I was lucky that I had that type of flexibility. She spent some time in long-term care, but my responsibilities did not wane. I received nearly daily phone calls at work about some issue or problem. I made sure that I left work early enough to visit with her around dinner time, to make sure she was eating. I know that caregiving siphoned off hours of productivity. My grant submissions and publications decreased during my time as a caregiver. My teaching evaluations weren’t bad, but they were not stellar. The only place I felt like I made a difference during the time I was a caregiver was in clinic, because I understood the challenges faced by families of my patients.
Can Family Caregivers Receive Payments?
In some states, the Medicaid programs pay family members to provide care to persons with dementia, as long as certain criteria are met. There is a program for veterans that also provides payment to family members who are providing in-home care. Area Agencies on Aging also offer a variety of home and community-based services for care partners.
I would love to see more options for people in the workforce who are care partners of persons living with dementia: reimbursement for elder care, access to emergency sitter care, and workplace programs that increase care partners’ knowledge and skills. One answer may be partnerships between companies and academic health centers…perhaps a caregiver coaching program similar to one that my team and I developed. I welcome ideas and suggestions from all of you who are caring for a person living with dementia.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.