There are 42 million family caregivers in the US alone – and it can be a 24/7 job.
Family caregivers are generally unpaid and, as the population continues to age, there will be fewer of them available to provide much needed care. More than 90% of older adults living in the community receive care from unpaid family caregivers primarily from wives and adult daughters.
Two thirds of those at home receive all their care from unpaid family caregivers!
The next big wave of older adults who will need care begin turning 80 in only twelve years. They will need help to continue to remain independent and their caregivers will need all the support and assistance we can provide.
Because much of the support will come at the state level, where you and your aging family live could make a big difference in the programs, policies and infrastructure in place to help you provide the best care while caring for yourself.
There is a new report, Raising Expectations, 2014: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers, produced by the AARP Policy Institute, that provides a state level performance score for five areas or key dimensions. The five areas are
- affordability and access
- choice of setting and provider
- quality of life and quality of care
- support for family caregiver
- effective transitions.
Because this is the second edition of this report (the first one was published in 2011) its findings can be compared to prior results measuring the same data. The authors tell us that there is some improvement in the scores, especially in those states that have enacted specific public policy directed at improvement, such as a Medicaid safety net and support for caregivers.
Unfortunately, they feel that the progress is slow and will need to accelerate at a greater speed to meet the needs of this burgeoning population.
As we will see as we review the findings, some states have a distance to travel. If you want to see your particular state’s results, check out the scorecard here.
Support for Family Caregivers
Focusing specifically on how states are supporting caregivers, we find some states scored highest for a variety of factors. Of the highest ranking states overall, there are some but not all who also rank highest for caregiver support. They include Minnesota, Washington, Alaska, Hawaii, Vermont and the District of Columbia.
Other states that also performed well in terms of caregiver support, but who were not at the top of the overall rankings, include Illinois, South Dakota, New York, Texas, Georgia, Louisiana, Rhode Island, Arkansas, Nevada, and Oklahoma.
Some states with the lowest scores might surprise you, including Florida, Utah, and Massachusetts.
The report states that a fear for family caregivers of older adults who don’t have adequate support in their states, safety nets, financial assets to cover their own care, or long term care insurance will be the inability to pay for necessary services. Caregivers will then deplete their own savings and financial resources in order to meet the needs of the loved ones in their care, thereby endangering their own well-being.
Home care allows for a more affordable, and desirable, care for most families, but the report states that “at an average of 84% of median income, the typical older family cannot sustain these costs for long periods.” Unfortunately, as we are witnessing, an 80 year old in a good state of health has the potential to become a centenarian. Will we have the funds to support twenty more years of home care?
When families exhaust their personal assets, the care of our older adults will fall to the Medicaid system. Long term care insurance is costly and out of the reach of many aging adults. The number who actually have these policies is dwindling to 10% of those over 50. Medicaid therefore becomes most people’s safety net.
Finance is one major concern, along with the health of family caregivers. If they can’t pay for assistance, they could damage their own health and ability to serve as a caregiver, leaving many older adults with few options.
Here are some particular findings that can impact family caregivers:
- Some states, such as Florida, do not allow registered nurses to delegate health maintenance tasks to direct care workers which could lessen the burden on family caregivers. These tasks include taking medications, giving tube feedings or giving an enema most of which become routine for caregivers and can be taught by nurses. Allowing direct care workers to do what caregivers are already doing could relieve family caregivers from these jobs to do other more important items.
- Some states including, Tennessee, Utah, Georgia and South Dakota, do not allow those receiving Medicaid to receive care in the home. States who do allow in-home care funded by Medicaid include Alaska, Minnesota and New Mexico. Providing in-home care for older adults receiving Medicaid would greatly help family caregivers who are now paying for these services and possibly putting their own future needs in danger.
- Some states are attempting to transition older adults who have spent more than three months in a nursing home back to home. The ones doing the best (15% of people) were Utah, Arizona and Oregon and those doing the worst (5%) were New Hampshire, South Dakota, North Dakota and Iowa. We want to be at home where quality of life is improved and it is less costly for everyone – states, older adults and caregivers.
- Because staying at home is universal, the shift to providing support services at home and the community becomes critical. However, even the top five states overall only allocated about 62% of their long term care dollars for older adults which was four times what the bottom five states did at almost 17%. The average across the nation is only 39%. Some states with poor infrastructure in place to provide older adults with the needed services find that there is no choice but to leave home to enter a center because family caregivers can’t provide care without support and are left with no choice.
- In many states, the person requiring care cannot direct their own care or hire the caregiver of their choice. Making our own choices about what works best for us is fundamental.
- More states are creating policy that supports caregivers, such as extending the reach of the Family and Medical Leave Act, mandatory paid sick day provisions, and prevention of discrimination against working caregivers. These policies will be critical to prevent burnout of working family caregivers which are expected to be the norm in the future. Caregivers will need support to maintain their own health and financial future.
The report does highlight states that are improving, albeit at a slow rate.
More than half of states have improved their Medicaid safety net for lower income people with disabilities, allowing them to receive care before they exhaust their own and family caregivers’ funds.
Infrastructure improvements in all states have been impacted by Aging and Disability Resource Centers that help all older adults access the services they need.
Future improvements that all states, including the top performers, must strive to achieve include growing the availability of trained health providers who can meet the needs of the older adults where they live, building support systems that allow aging in place including transitioning out of care homes, and building the effectiveness of Medicaid programs as a safety net.
Family caregiver training is needed so that unpaid caregivers can perform health monitoring and health care tasks safely without injuring themselves or their the loved one for whom they care.
The Good News
Senior Care Corner is happy to find a silver lining in this report. The good news is that, among family caregivers from this report, more than half reported themselves without much worry or stress, with enough time, and being well-rested.
We are including this graph to show state by state how family caregivers responded. The report tabulated data from the Gallup Healthways Well-Being Index which surveys 1,000 caregiving adults each day.
Because many caregivers report having difficulty with feelings that their responsibilities weigh them down, interrupting their sleep, creating stress (it was reported that 55% of caregivers feel stressed), and failure to care for themselves, it becomes very important to ensure support is available for all family caregivers.
What support do you need to be a family caregiver that you would like your state to provide?