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8 new facts about LTC caregivers who suffer

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One new message for your clients may be this: The government has data showing that relatives who feel nervous about caregiving often hate at least some aspects of providing care.

A team of researchers has published data on how caregiving affects the caregivers in a major new report on caregiving prepared for the Office of Disability, Aging and Long-Term Care Policy, an arm of the Office of the Assistant Secretary for Planning and Evaluation (ASPE) at the U.S. Department of Health and Human Services (HHS).

In one section of the care needs report, the researchers use data from the 2011 National Health and Aging Trends Study (NHATS) to show what kinds of problems plague the people providing either general care or help with self-care, mobility and other “activities of daily living,” for their loved ones.

Like a companion report on unmet care needs, the caregiver impact report provides sobering data on what a lack of access to appropriate formal care can do to the caregivers.

Only 3.7 percent of the caregivers who say they are in excellent health and provide general help say they have seen substantial negative aspects as a result of caregiving. The percentage with serious problems rises to more than 30 percent for caregivers helping with ADLs who suffer from anxiety.

The researchers classified a caregiver as facing “substantial negative consequences” if the caregiver reported feeling exhaustion, a sense of having too much to do or a sense of having little free time.

One question long-term care (LTC) planners might ask clients is: If you expect to be a caregiver for someone else, how much anxiety do you feel already? Can you deal with more anxiety?

A question for clients who think they might need formal or informal care would: When you think about potential caregivers, just how calm are they today?

Here’s a look at how common various mental and physical problems are among the caregivers who provide help with ADLs, and how those factors correlate with the likelihood that the caregivers will suffer substantial problems as a result of providing care.

Woman with a worn face

1. Breathing problems that limit activities

Frequency among:

Caregivers helping with ADLs: 7.8 percent. 

Caregivers reporting substantial negative aspects of caregiving: 22 percent.

Fortunately, this devastating problem is relatively rare among caregivers, but caregivers who face that challenge often report suffering from serious caregiving-related stress. Of course, the caregivers who must deal both with problems with breathing and severe stress may be at high risk for needing care themselves.

Image: Beornbjorn

An anxious woman who's covering her face with her hands

2.  Anxiety

Frequency among:

Caregivers helping with ADLs: 15 percent.

Caregivers reporting substantial negative aspects of caregiving: 30 percent.

Not surprisingly, this problem is common among caregivers. It’s about as common among those providing any care as well as those helping with ADLs. 

Caregivers who report that they suffer from anxiety are more likely than any others to report that caregiving is a burden. Note that mild anxiety — like mild depression — is a condition that might, in some cases, be prevented, identified or addressed with relatively simple measures, such as online or telephone-based support programs.

Image: Ammentorp Photography

A depressed woman

3. Depression

Frequency among:

Caregivers helping with ADLs: 15 percent.

Caregivers reporting substantial negative aspects of caregiving: 29 percent.

Depression — anxiety’s energy-draining sibling — may make caregiving seem overwhelming.  

Image: kieterpix

A woman in poor health

4. Fair or poor general health

Frequency among:

Caregivers helping with ADLs: 21 percent.

Caregivers reporting substantial negative aspects of caregiving: 18 percent.

Caregivers who are in poor physical health may be somewhat better at dealing with caregiving than those struggling with anxiety or depression — but it is sobering to think of how many of the caregivers who are providing informal care are in poor health themselves. Families planning for long-term care expenses might want to think long and hard about what kind of support an ailing family caregiver might need.

Image: Raulumnate

A man suffering from weakness

5.  Weakness that limits activities

Frequency among:

Caregivers helping with ADLs: 29 percent.

Caregivers reporting substantial negative aspects of caregiving: 16 percent.

Of course, activity-limiting weakness could be especially burdensome for informal caregivers who are trying to help loved ones with tasks such as getting out of bed, or bathing.

Two hundred pound husbands who are thinking about the informal care they could probably get their loving wives, daughters or daughters-in-law might need to think for a moment about how easy — or difficult — it would be for the women in their lives to help them up out of bed.

Image: nandyphotos


6. Exhaustion that limits activities

Frequency among:

Caregivers helping with ADLs: 30 percent.

Caregivers reporting substantial negative aspects of caregiving: 28 percent.

Exhaustion is common among informal caregivers. One lesson for couples considering limited-benefit long-term care (LTC) benefits arrangements might be that even having just enough formal care benefits to get the caregiver an occasional day off might be worth something.


7. Pain that limits activities

Frequency among:

Caregivers helping with ADLs: 31 percent.

Caregivers reporting substantial negative aspects of caregiving: 22 percent.

Maybe one conclusion that could be drawn from the chronic pain statistic is that the agents and brokers who sell long-term care insurance and related products ought to be much quicker to learn about and sell disability insurance as well as long-term care insurance. It seems as if even many working-age caregivers end up being well on their way toward suffering from disabilities that could interfere with their ability to work before they reach the normal retirement age.

A man who can't sleep

8. Sleep problems

Frequency among:

Caregivers helping with ADLs: 45 percent.

Caregivers reporting substantial negative aspects of caregiving: 17 percent.

The kinds of statistics in the new ASPE caregiver impact report could cause anyone who reads it to toss and turn at night, but the caregivers themselves already face restless nights.

Image: Kim Carlson


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