Family and Friends Provide Substantial Amounts of Care in Long-Term Care Facilities - Study
Family and friends have been the backbone of long-term health care. Family caregivers, friends, neighbors, and others from the community (like churches) become caregivers even though they are usually not adequately trained or prepared for the role.
Many families don't even think of long-term health care until a crisis occurs when a parent declines due to an illness, accident, or aging. It is at this time when they discover health insurance, including Medicare and supplements, will not pay for most long-term care services. Medicaid isn't an option for many people since it requires the care recipient to have little or no income and assets.
If the care recipient has Long-Term Care Insurance, the problem is eased since there will be funding for quality care options - but typically, nobody thought of insurance in the years before the health decline.
Families Struggle to Find Care Plan
Now the family struggles to develop a care plan. The care plan can include professional care, but that is very expensive and drains income and assets quickly. The adult children then decide which one of them - or their spouses - becomes a caregiver. That person must then juggle their career, family, and other responsibilities with their new caregiver job.
Caregiving is physically and emotionally demanding. The burdens on loved ones are numerous. There are financial strains, fractures in family relationships, and the caregiver also finds they face their own health problems because of the pressure of being a caregiver.
If there are financial resources available, assisted living or a nursing home is considered because some of the pressure would be reduced on the rest of the family with access to quality care for their loved one.
LTC Facilities – Are They Providing Adequate Care with Available Staffing?
It is assumed that the care recipient's needs for care services are met by the paid staff at the assisted living facility, relieving the burden on family and friends. However, this might not be the case.
A new study in Health Affairs challenges this assumption. The study shows that family and friends continue to provide substantial amounts of care in these long-term care facilities. It amounts to an "invisible workforce" that provides more than an extra "shift" of care every week in nursing homes and two "shifts" in assisted living facilities, on average.
The study's authors, Norma B. Coe, Ph.D., and Rachel M. Werner, MD, Ph.D. from the Perelman School of Medicine at the University of Pennsylvania, used data from two national surveys from 2015 and 2016. It showed that residents at long-term care facilities were receiving a large portion of their care with activities of daily living from informal caregivers.
The study authors say that it is unknown if this informal care was the preference of the family and the care recipient or due to lack of available services at the nursing home or assisted living facility.
Dr. Coe and Dr. Werner
" ... it raises concerns about the adequacy of staffing levels in nursing homes. It also raises questions about how needs are met among people who don't have informal caregivers. Are their needs going unmet, or do staff spend more time with these residents, creating an implicit cross-subsidization between residents with and without family helpers?"
Staff Shortages or Not Enough Staff in the First Place?
The study's findings could explain nursing homes' staffing shortages and burnout during the COVID-19 virus crisis despite no apparent drop in staff hours. Visitor bans were put in place early during the crisis preventing friends and family from visiting care recipients.
"The bans essentially eliminated this invisible workforce, increasing the care demands on the staff, on top of the extra work of the COVID protocols and infections themselves," Coe and Werner said.
Quality care is still the primary concern families have when their loved one requires long-term health care in any setting. Whether in-home care services or care inside long-term care facilities, families expect - and deserve quality care.
Need for Quality Care Doesn’t Mean Ignoring Family Burden
The need for quality care should not mean we ignore the stress and anxiety family caregivers - and other informal caregivers face when providing care. The burdens caregivers face are real. While more people today are planning for the costs and burdens of aging, it is still a minority of all Americans. A lack of planning means a crisis on family and finances.
Long-Term Care Insurance would provide the resources to ensure quality care options. There is no question LTC Insurance reduces the stress and burdens otherwise placed on the family. Still, the study suggests some facilities are understaffed and unable to provide enough care.
Virus crisis or not, our loved ones deserve better. Yet, without some plan, like Long-Term Care Insurance, a crisis will happen in the decades ahead. Planning cannot occur at the time of the crisis. Long-Term Care Insurance is unavailable for those who already need care services. Most people purchase LTC Insurance in their 50s when premiums are much lower and reasonably good health still allows planning to be put in place.