The State of Caregiving in United States

REPORT 📊

Aging In Beauty
Jul 20, 2017 · 18 min read

Table of Contents

  • Introduction
  • Overview of Key Statistics
  • Section 1: Spouses versus Adult Children
  • Section 2: Men versus Women
  • Section 3: Caregiver Support
  • Issue Spotlight: Cancer and Alzheimer’s, a Tale of Two Support Systems

Introduction

The first ever State of Caregiving report uses the results of an online survey of more than 3,300 family caregivers to dive deep into the demographics, financial circumstances, living situations and support systems used by people caring for an aging loved one. This analysis offers unprecedented information about this vitally important group of men and women.

Overview of Key Statistics

The State of Caregiving survey reveals a series of illuminating insights into the circumstances of family caregivers.

Here are 10 key conclusions from the survey:

Moms are most likely to need care

Dementia is the dominant concern

Alzheimer’s/dementia and general aging issues (i.e. frailty, hearing loss, mobility problems) top the list of health concerns that require caregiving, with 51% and 23% of family caregivers, respectively, reporting that these conditions are the reason they must provide assistance to their loved one. Parkinson’s demands the efforts of about 8% of the caregiving population, while stroke comes in a distant fourth, at 5%.

Long-term care is the norm

For the most part, family caregivers are in it for the long haul. Nearly 57% of caregivers have been in their role for more than three years.

Sibling rivalry is real

Older adults often live at home

Older adults overwhelmingly express a desire to age in place, and this trend does appear to be playing out the realm of elder care. Eighty-three percent of family caregivers report that their loved one lives either in their own home or the home of a family member. The remaining 17% of older adults in need of care reside in senior living facilities such as Independent Living, Assisted Living, Memory Care or a Skilled Nursing Facility.

Companionship is the top caregiving task

Across genders and situations, the vast majority of family caregivers devote 10 or more hours each week to providing companionship for their loved ones. Other top tasks include: running errands, managing finances and preparing meals.

Men are more likely to hire home care

While 54% of family caregivers have not hired a home health aide (or other professional home care provider) for their loved one, men are more likely than women to seek outside assistance with caregiving duties.

Discussing money does make a difference

The average family caregiver spends between one and five hours each week helping their loved one with financial management tasks (i.e. paying bills, managing accounts, etc.). Fifty percent of family caregivers have either had to dip into their personal savings or take on significant financial debt to care for their aging loved one.

Families plan ahead, but avoid talking about hospice

When a loved one becomes ill, it’s critical for families to have conversations about power of attorney (POA), financial planning and health care preferences.

Caregiving can deal a major career blow

Becoming a caregiver for an aging loved one can deal a serious blow to a family caregiver’s career. Since the vast majority of spousal caregivers are either in or nearing retirement when their partners start to require care, it is the careers of adult children that are hardest hit by caregiving responsibilities.

Section 1:

Spouses versus Adult Children

Despite being more than 65 million strong, the American population of family caregivers is often viewed as a homogenous group. Policymakers and program coordinators tend to overlook the crucial differences between people who are taking care of an ill spouse and those who are looking after an aging parent.

Health conditions

As far as ailments go, an overwhelming proportion of spousal caregivers are caring for a partner with Alzheimer’s or some other form of dementia (61%). Parkinson’s is the next most common health condition that leads to spousal caregiving, affecting 11% of the spousal caregiver population.

Day-to-day care

Nearly twice as many spouses (60%) spend 30 or more hours a week caring for their loved one, compared to 39% of adult child caregivers.

Hiring home care

Spousal caregivers tend to feel less comfortable with the prospect of bringing in an outside professional to provide care for their loved one. Sixty-six percent of spouses abstain from hiring home care, and wives are less likely than husbands to employ home care services for their partner.

Talking it out

When it comes to having tough discussions about finances, future plans and legal issues (POA, DNR, etc.) an equal (and significant) percentage of adult child caregivers and spousal caregivers have talked through each topic with their loved one.

Financial considerations

The vast majority of adult children spend between $0 and $500 of their own money on their parent’s care, each month. Approximately 55% of spousal caregivers report monthly care expenses in that range as well, though more than 20% say they spend between $500 and $1,500 per month on their partner’s care.

Emotional response to caregiving

Adult children tend to experience more frequent feelings of guilt than spousal caregivers. Twenty-two percent of sons and daughters grapple with guilt multiple times a day, whereas only 13% of spouses say the same.

Section 2:

Men versus Women

Male and female caregivers may not be from Mars and Venus, but they do appear to approach caregiving from two distinct perspectives. Each gender has certain stereotypes attached to it and, when it comes to caregiving, some of these stereotypes ring true, while others are less black and white:

Women are the caregivers and the care receivers: True

An overwhelming percentage of caregivers are women — 91% of adult child caregivers are daughters, while wives constitute 76% of the spousal caregiver population. Also, more than 50% of care receivers are either mothers or wives.

Men provide less hands-on care: Partially True

This also appears to be true…to a certain extent.

Women are more emotionally invested in caregiving: False

The majority of caregivers, male and female, husbands and wives, do periodically feel guilty about their ability to take care of their loved one. Women are only slightly more likely than men to report having feelings of guilt “multiple times a day.” The most common source of this guilt is the feeling that the caregiver is not doing enough to help their loved one:

  • “No matter how much I do, things still slip through the cracks…I hate that!” says one husband.
  • “Am I doing enough for mom? Am I being too selfish?” a son asks.
  • “I feel like I fall short most days,” says one daughter.

Section 3:

Caregiver Support Comes Online

Caregiver support comes in many forms, from in-person gatherings, to programs run by religious groups, to online communities of caregivers. Close family and friends also play a pivotal part in helping caregivers cope with the stresses of their role.

Each support provider brings a different element to the equation.

Family and friends tend to be the people who are most well-acquainted with the caregiver and, typically, the care recipient as well. Their unique perspective allows them to offer highly personalized emotional assistance, and is probably the driving force behind why the majority of new caregivers immediately turn to close family and friends for succor.

  • “Be prepared for a total change.”
  • “Even though you will have guilty feelings, always know that you are doing the best you can for your loved one. And somewhere inside, they know it and appreciate everything you’re doing.”
  • “Research and discuss all options with your spouse/siblings and an elder law attorney. Don’t make decisions based on guilt.”
  • “Make boundaries and stick to them before much of your life is over and you start to realize how much joy you could be having if you weren’t stuck in an unhealthy-for-you situation.”
  • “Balance your life with friends and activities and don’t just shrink into the caregiving world with no outlet.”
  • “Ask for help early. Don’t assume everyone can read your mind.”
  • “Put systems in place, before you need them, so you can take care of your own needs.”
  • “I have several friends also taking care of their mothers — there is this unspoken camaraderie that we have surrounding our circumstances. The only advice I give them is to join these forums and vent because this is so difficult and painful for each of us.”
  • “Do your best and leave the rest.”

A closer look at the caregivers

Cancer is one of the costliest diseases of aging; oftentimes outstripping the enormous expenses associated with Alzheimer’s/dementia care. Cancer patients and caregivers also tend to be on the younger end of the spectrum; many of them are in their 50s and 60s, as opposed to Alzheimer’s patients and caregivers, many of whom are 70 or older.

An understanding employer is key

As discussed in previous sections, caregiving can have a dramatic impact on a person’s career. This is especially true for people taking care of a loved one with cancer, Alzheimer’s or another form of dementia.

More money, better support?

In 2015, the National Institutes of Health is expected to allot $5.4 billion to cancer research, whereas Alzheimer’s is set to receive $586 million.


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