A growing body of literature shows that caregiving can be demanding and burdensome – physically, emotionally, and financially. Too often, family members become caregivers. Family members are forced into the caregiving role when no other plan exists to address the financial costs and burdens of aging and health.
Long-term care services are often provided by unpaid, informal caregivers, often family members, friends, or even neighbors. These informal caregivers are usually untrained and unprepared for this demanding job.
People require long-term care services and support due to illness, accidents, or the impact of aging. The need for long-term care can happen at any age but increases as we get older and experience changes in our health, body, and mind.
An estimated 53.0 million adults in the United States are providing unpaid caregiving services to family members, according to a 2020 study published by The National Alliance for Caregiving (NAC) and AARP. One in five people are now caregivers.
Long-Term Care Happens at All Ages
While many people think of long-term care as something that happens to the elderly, this is not always the case. With the advances in medical science, people survive health events more than ever before.
The problem is that sometimes the treatment creates a need for extended care. We may recover from an illness or injury but not completely. As a result, this leaves too many people who need help with routine activities of daily living.
Longevity itself is a risk for long-term care. With advances in medical science, things that used to kill us no longer do. Our lifespans get longer, and our need for long-term care services increase.
The National Alliance for Caregiving (NAC) studied those who provide extended care at home for those who have cancer compared to other long-term care caregiving.
The NAC notes that while cancer affects the individual with cancer most directly, its impact extends to friends and family members who provide extended care at home for the person who has cancer and the consequence of cancer treatment.
Today these informal caregivers are often central in providing care or assistance in both immediate and long-term cancer management. This is not dissimilar to those who require long-term care services and support due to the impact of aging.
Since cancer patients are receiving extended care at home more often because of the advances in treatment and other healthcare changes, care at home has become more common.
One of the problems is long-term care services are generally not paid by regular health insurance or, for those 65+, Medicare and supplements. Traditional insurance will only pay for a limited amount of skilled services but not custodial care, which is help with routine activities of daily living. Medicaid will pay for long-term care services, but the care recipient must have little or no income and assets to qualify.
Therefore, the stress and pressure of caregiving are placed on family, friends, and neighbors unless the person receiving care has substantial assets to pay for paid care.
Long-Term Care Insurance Provides Access to Choice of Quality Care
Those who purchase Long-Term Care Insurance have access to their choice of quality care, either at home or in a facility. These policies have become key to asset protection and reduce the tremendous stress and burden placed on these informal family caregivers.
There are some differences in caregiving for cancer patients, for example, and those who require long-term care services for other aging or health reasons. For instance, caregivers caring for those people with cancer are significantly more likely to be caring for someone age 65 to 74, while caregiving for non-cancer related issues tends to be age 75+, according to the NAC.
The type of care provided by a family caregiver generally covers the major activities of daily living. These include something as simple as helping a person get dressed or things like bathing or dealing with incontinence or bowel issues.
Those who have cancer often need help with ADLs due to the nature of cancer and the treatment for the disease. This care can vary depending on the type of cancer, the progression or stage of the cancer, and the type of treatment being used.
The NAC says survivors experience common side effects such as pain, fatigue, mental confusion or memory loss, and appetite loss, all of which might adversely impact daily functioning and lead the recipient to require greater assistance.
While many people think of long-term care services and supports as age-related, cancer and other diseases and accidents cause the need for help with daily living activities at all ages.
In addition, with the normal ADLs, people also require help with “Instrumental Activities of Daily Living” or “IADLS.” These are activities that people need help with to support their everyday living. These include housekeeping, preparing food, communication, telephone usage, laundry, transportation, medication management, bill paying, shopping, mobility, and general home maintenance.
Family Caregivers Face Many Challenges
Caregiving is always stressful for a family caregiver, no matter why the person needs care. Caregivers usually have their own careers, families, and responsibilities. On top of other responsibilities, attempting to be a caregiver places a tremendous amount of stress and burden on that family member and their family. The more care the person requires, the more significant the stress and burden on the caregiver.
The NAC study showed that cancer caregivers and non-cancer caregivers do not vary in terms of their own job status. The report says these caregivers are employed at similar rates, have similar workplace benefits, and experience similar needs to make workplace accommodations.
“Caregiving is an issue that affects people of all different backgrounds—men and women,” said C. Grace Whiting, president of the NAC.
“We are really talking about caregiving across a lifespan,” she said.
Another NAC study conducted in cooperation with the AARP reported 60% of caregivers are women.
Since women often become caregivers, this often places significant stress on mid-career women.
Family leave laws will help some of those caregivers. Still, the best way to address the issue is to plan in advance so that family members don't have to juggle their careers and families with the duties of being a caregiver.
Professional care is getting more expensive due to greater demand for care services and increasing labor costs. Funding quality care could be financially devastating unless a Long-Term Care Insurance policy were put in place before the person needed care.
You cannot purchase a Long-Term Care Insurance policy when you need care; it must be purchased with reasonably good health. Most people purchase coverage in their 50s as part of retirement planning.
Seek the help of a qualified and experienced Long-Term Care Insurance specialist who understands the differences and pricing of all the top insurance companies.
