When is a caregiver needed?
Do you know when is a caregiver needed? Answer these questions and see if you think it is time to consider a caregiver:
|my loved one has been needing more general assistance in performing daily living tasks|
|my loved one, neighbor or friend just had surgery and finds it difficult to get around or take care of themselves|
|my loved one is showing early signs of dementia and I worry about leaving them home alone|
|my loved one has a medical condition that limits their mobility and/or their ability to perform daily tasks
(may be an obvious condition since birth or sudden onset)
As you can see a caregiver may be needed at several times in one’s life. It is not a new concept. It is not just limited to old people. It is not a solitary task. It is not a job people actively seek (in the unpaid setting). However, millions of people find themselves needing some level of assistance each year, much of which comes from family members and other loved ones in a home setting. Most seniors want to “age in place” meaning they want to spend their later years at home surrounded by the people and things they loved and cherish. For this to happen they need a caregiver to help them with those daily tasks to allow them to stay in their home. This could be a professional paid caregiver or loving family member that is willing to provide this care, usually at no cost.
According to the National Alliance for Caregiving and AARP, over 43 million caregivers have provided unpaid care services to children and adults in 2015. Of that number over 34 million caregivers have provided unpaid care services to adults over 50 years of age in 2015. That represents a large and growing senior population that need ongoing care. In fact it is estimated that the cost of providing these unpaid services is over $470 billion! And with a growing baby boomer population this number and need for care will only increase!(1)
Who provides the needed care?
Most of the care is provided by an unpaid spouse, family member, friends and neighbors in attending to the daily needs and medical assistance of a loved one. The industry refers to these people as “informal caregivers”. “Formal caregivers” are paid care workers hired by the family to provide care services either directly in the home or in a facility, such as a day care, residential facility, long-term care facility.
The mental toll
Most families chose to provide care services themselves as hiring a professional caregiver usually is cost prohibitive and not paid by most insurance plans. However, providing care for a loved one at home can take a toll on family finances and health consequences for the caregiver. Health problems range from depression, anxiety, chronic illness and most of all burnout. In fact most decisions to move a loved one to a professional care facility are not based on money rather than on the declining health of the caregiver.
The physical toll
In addition to mental fatigue are the various hoops and knowledge bases caregivers need to develop in order to navigate the medical and insurance systems. As most people know and have personally experienced for themselves, the healthcare and insurance systems can be quite formidable to navigate. Trying to determine if services, medications, procedures or equipment are covered can be a lengthy and frustrating tasks. This also doesn’t take into account the caregiver needs to provide transportation services for medical appointments, hospital stays and picking up medications. It further adds to the stresses of providing home-based care.
The financial toll
The financial impact of informal caregivers can also have significant impact on a family when caring for a loved one at home. An AARP report states that the average informal caregiver family is spending about $7,000 per year in out of pocket expenses with the largest portion for general household expenses (2). The report says Latino, Hispanic and low income caregiver families are paying even more in out of pocket expenses at 44 percent of income. This is a major problem for families as expenses rise and more money is spent on the member needing care which means less money in the families pocket!
Here are some out of pocket (OOP) facts from AARP that indicates the financial toll providing care for a loved one has on the family(2):
- Family caregivers of all ages spend $6,954 in OOP costs related to caregiving on average.
- Family caregivers earning less than $32,500 are under significant financial strain, spending an average of 44 percent of their annual income on caregiving.
- Family caregivers for adults with dementia reported nearly twice the OOP costs ($10,697) than those caring for adults without dementia ($5,758).
- Hispanic/Latino family caregivers spend an average of $9,022, which represents 44 percent of their total income per year. By comparison, African American family caregivers spend $6,616, or 34 percent; white family caregivers spend $6,964, or 14 percent; and Asian Americans/Pacific Islanders spend $2,935, or 9 percent.
- Long-distance family caregivers had the highest OOP costs at $11,923 compared with family caregivers living with or nearby their care recipients.
Outlook for “Informal Caregivers”
A report by AARP outlines what family caregiving will look like in future years as baby boomers age and will need care.
- In 2015 there were seven (7) family caregivers for each person 80+
- By 2030 there will be only four (4) family caregivers for each person 80+ (due to population shrinkage)
- By 2050 fewer than three (3) family caregivers for each person 80+ (continued population shrinkage)
This is an impending crisis as the burden to provide care will greater by spreading the care responsibilities over half as many family members. This will certainly jeopardize the level of care for the affected loved one and put even more physical and mental strain on the members providing the care. (3) You can read more about this impending crisis in the National Academies of Science, Engineering and Medicine’s report in brief: Families Caring for an Aging America (September 2016).
There are some relief outlets for those providing home care. Lawmakers recently enacted and many states have adopted the CARE (Caregiver Advise, Record, Enable) Act which allows adult patients to name a family caregiver on their medical files. This would direct hospital staff to provide instruction to the caregiver on how to provide care to the family member at home, how to manage medications, injections, special diets and how to properly transfer patients from beds to chairs to toilets and back. More states have this bill on their dockets for review and vote this fall. It would also help guide employers in working with employees to craft sensitive leave and paid time off policies.
The US Senate passed the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act this week where it is now in the hands of the House to pass it. According to AARP the House has bi-partisan support and hope to pass the bill. Here is the main focus of the bill (full text):
(b) Contents.—The Strategy shall identify recommended actions that Federal (under existing Federal programs), State, and local governments, communities, health care providers, long-term services and supports providers, and others are taking, or may take, to recognize and support family caregivers in a manner that reflects their diverse needs, including with respect to the following:
(1) Promoting greater adoption of person- and family-centered care in all health and long-term services and supports settings, with the person receiving services and supports and the family caregiver (as appropriate) at the center of care teams.
(2) Assessment and service planning (including care transitions and coordination) involving family caregivers and care recipients.
(3) Information, education and training supports, referral, and care coordination, including with respect to hospice care, palliative care, and advance planning services.
(4) Respite options.
(5) Financial security and workplace issues.
(6) Delivering services based on the performance, mission, and purpose of a program while eliminating redundancies.
There are several non-profits that have opened their doors, recognizing the physical, financial and mental stresses of caring for a loved one on a daily basis. Family caregivers are usually thrust into these situation with little to no warning, without adequate training, have a lack of financial and medical understanding and suffer from burnout. These non-profits, found in your local communities, help provide programs targeting these critical issues for family caregivers. They can learn techniques for handling stress, dealing with loved ones suffering from mental illness (such as Alzheimers and dementia), finding other volunteers who may be able to pitch in and help and perhaps even a small amount of financial help. These programs are vital to keeping family caregivers afloat in their care efforts!
Given that nearly all of us have had to provide care at one time or another for a loved one, family friend or neighbor, we all need to have compassion, empathy and support for those that provide that care on a regular basis. Remember no one is getting paid to provide this care – it is given out of love! So, help a caregiver whenever and wherever you can. That might taking a shift or providing a lengthy break, doing the grocery shopping, running an errand, giving theme a thoughtful gift or card or simply giving them a bug hug and thanking them for their selfless service!
If you need help or some guidance use these links to find some relevant caregiver services:
- Support groups on Caregiver.org available to caregivers
- Available resources on Eldercare.gov to caregivers locally
- Support groups on the National Alzheimer’s Organization available to those caring for dementia patients
- Treatment and support resources on Cancer.org available locally to caregivers and patients
- Family Caring resources available on AARP
Stay tuned for part two when we discuss “formal caregiver” support.
To your (and your loved one’s) improved health…
- (1) Family Caregiver Alliance – https://www.caregiver.org/caregiver-statistics-demographics
- (2) AARP – https://www.aarp.org/caregiving/financial-legal/info-2017/out-of-pocket-cost-report.html
- (3) CASA Companion Home Care- http://www.casacompanionhomecare.com/caregiver-cheat-sheet-the-state-of-caregiving-2017/