A growing body of literature shows that caregiving can be demanding and burdensome – physically, emotionally, and financially. Too often family members become caregivers. This usually happens when there is no advance plan to address the financial costs and burdens of aging and health.
Long-Term Care services are often provided by unpaid, informal caregivers who are often family members, friends or even neighbors. People require long-term care services and support due to illness, accidents and the impact of aging.
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 sometimes the treatment ends up creating a need for extended care. We may recover from the illness but not completely. This leaves too many people who need help with normal activities of daily living.
Things that used to kill us no longer do. But if we do recover completely all this does it add to our longevity. Longevity itself is a risk for long-term care.
The National Alliance for Caregiving (NAC) studied those who provide extended care at home for those suffering from cancer and the treatment for cancer compared to other long-term care caregiving.
The NAC notes while the effects of cancer most directly affect the individual with cancer, its impact extends to friends and family members who provide extended care at home for the person suffering from cancer and the impact of cancer treatment.
Today these informal caregivers are often central in providing care or assistance in both the immediate and long-term management of cancer. 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 changes in healthcare, 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. A limited amount of skilled services are paid for and custodial care, which is help with normal activities of daily living (ADLs) are not paid for at all. 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.
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 but also 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 example, 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 are suffering from cancer often need help with ADLs due to the nature of cancer and the treatment for the disease. This 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, and mental confusion or memory loss, as well as 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 support being age related, cancer and other diseases and accidents cause the need for help with ADLs.
In addition, with the normal ADL’s, people also require help with what is referred to as “Instrumental Activities of Daily Living” or “IADLS”. These are activities which people need help with to support their normal living. These include housekeeping, preparing food, communication, and telephone usage, laundry, transportation, medication management, bill paying, shopping, mobility, and general home maintenance.
Caregiving is always stressful on a family caregiver no matter the reason the person needs care. Caregivers usually have their own careers, families, and responsibilities. Attempting to be a caregiver, on top of other responsibilities, places a huge amount of stress and burden on that family member and their family. The more care the person requires the greater 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, they have similar workplace benefits, and experience similar need 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.
This often places major stress on mid-career women - https://www.ltcnews.com/articles/caregiving-growing-burden-on-women-in-mid-career
Family leave laws will help some of those caregivers but the best way to address the issue is to plan in advance, so these burdens don’t get placed on family members.