Family caregivers feel the emotional, physical and financial strain of caregiving for those that they love — along with fulfillment from knowing they make a difference.
Many would like to know what can be done or what help they could get to ease the strain.
Most caregivers don’t feel caring for senior loved ones is a burden but see it as a way to repay love given them through the years.
They also feel a sense of obligation — duty when they’re spousal caregivers — and honored to be called upon to help someone we love.
Let’s face it, not every day Is joyous or easy.
A recent caregiving report, conducted by AARP Public Policy Institute and the National Alliance for Caregiving, details a wide range of concerns faced by unpaid family caregivers.
Caregiving Report Highlights
We want to share some of what we learned in the report so the caregivers among our readership know they’re not alone — and other family members understand what the caregivers face on a daily basis.
The report, which was sponsored by several organizations and conducted in 2014, surveyed 1248 online participants, including all ages and ethnicities.
They remind us that caregivers are very different, come from differing backgrounds, and have individual needs, but all share similar feelings of positivity as well as struggle when caring for family members.
- 43.5 million unpaid adult caregivers in the prior 12 months
- 34.2 million have provided unpaid care to someone over 50 years
- 60% of unpaid caregivers were female
- Eight out of ten (82%) were caring for only one person
- Average age 49
- One in ten providing care for spouse with an average age of 62.3 years and 49% caring for parent or parent-in-law
- One in ten are over 75 years themselves; these often have no other unpaid help
- Average providing unpaid care for 4 years, 24% providing for 5 years or more
- 65% of care recipients were female and 69.4 years on average
- 48% of care recipients lived at home, the more time needed for care correlated with the caregiver living with the care recipient
- Three in five had a long-term physical condition
- 26% had a memory impairment
- 53% were hospitalized in the prior 12 months
What Caregivers Say They Do
The tasks caregivers perform each day are very different. Depending on the functional level of your senior loved one, you may need to do more or less different jobs each day.
This report found that most caregivers need to do at least one activity of daily living for their loved ones each day. Most help their loved ones in and out of bed or a chair.
When a senior needs more hours of caregiving each day, the caregiver usually is performing all activities of daily living for their loved one – dressing, grooming, feeding, toileting, transferring, etc.
One in four participants of this study said that they have difficulty performing these tasks. Personal care duties like toileting, incontinent care, and bathing or showering are the most trying tasks.
There are seven instrumental activities of daily living such as housework, managing money, cooking, giving medications, transportation, and grocery shopping. Caregivers reported doing 4.2 out of 7 for their senior loved ones. Those who required the most hours of caregiving were completing all 7 functions.
Family caregivers not only provide hands on assistance but also are the ones responsible for communicating with healthcare providers, managing a medical condition in order to adjust treatments, and advocate for their loved ones.
Providing Increasing Skilled Care
Because doing so many different and often demanding tasks adds a burden to caregivers, the researchers asked participants to describe what they felt was their level of burden. They found that 40% felt they had a high burden, 18% reported a moderate burden and 41% reported a low burden.
Caregivers are being put in the position of providing more and more duties that require knowledge and skills most often provided in the past by a nurse.
These tasks are called medical/nursing tasks, including tube feedings, injections, catheter care, colostomy care and many other responsibilities.
6 in 10 caregivers reports assisting with medical/nursing tasks. Those caregivers who provide the most hours of care, report doing these medical tasks more often.
Is Anyone Else Helping Caregivers?
Caregivers who participated in the study reported the medical and nursing tasks were difficult for them. 42% report they had no preparation to perform these medical tasks. 14% report they had some training.
This report found that only about half of caregivers had help from another unpaid caregiver. 57% of those providing the most hours of care and 78% of those who are spouses have no additional unpaid help.
Only 32% of caregivers had paid helpers from people such as aides, housekeeper or others.
One in three have no help from others – paid or unpaid!
Strain of Caregiving
The strain or stress caregivers feel is a matter of perception. Unfortunately, since half of family caregivers report that they had no choice in whether they wanted to or had to care for their loved one, obligation may be driving them. They are likely the most in need of support.
48% of participants reported they felt their health was excellent or very good. However, 22% reported that their health had gotten worse since caregiving.
When we consider those caregivers especially older carers who themselves are in poor or diminished health, their physical burden is higher.
One in five report a high level of physical strain and 38% report it being emotionally stressful. Over half, 53% of those who stated they had no choice in caregiving said they felt high levels of emotional stress.
Caregiver Finances Strained
Financial strain is not uncommon for caregivers.
In this study, one in five caregivers said they felt financial strain. 21% said they had more worry about financial strain when they lived over one hour away. Most likely because 41% of long distance caregivers report paying for help.
The longer the duration of caregiving, the more financial pressure was experienced.
To add to the strain, six in ten caregivers report being employed during the past year. An added financial strain was felt for those caregivers who were older and on a fixed income trying to make ends meet.
Many caregivers who are employed report that their employers are aware of their situation, many offer flexible hours, paid sick days, employee assistance programs and telecommuting to help them be caregivers.
Most benefits cited by caregivers, however, are afforded to full-time employees only. That makes it hard on caregivers who need to devote more time to senior loved ones instead of work.
What Caregivers Need
Given the commitment and caring that drives family caregivers, it’s not surprising many state their needs are related to providing better care for senior loved ones rather than benefiting themselves.
Caregivers want more information about or services they would like:
- How to keep loved ones safe at home
- How to manage their personal stress
- How to manage challenging behaviors
- How to deal with incontinence
- Few have asked for financial help
- Few have used respite services (15%)
- 4 in 10 want hospitals to demonstrate medical tasks and inform them about medical decisions
- Get paid for caregiving
- Get an income tax credit to offset cost of care
- Help making end of life decisions
- Finding education materials in their native language
We hope this report and the data behind it will help public policy makers understand the unique needs of family caregivers and encourage organizations to create programs that will support caregivers.