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Kathleen Kelly, Executive Director, Family Caregiver Alliance

Do you find that people need to take early retirement, leave a job, or cut down on hours to provide care?

What we find over the years is about a third of caregiving families either cut back their hours, take an early retirement, or leave the workforce.  Many of the caregivers who are doing this are predominantly women.  So what happens is that there’s a great impact on their own retirement prospects.  So for women, that can be a very serious consideration and the financial impact of taking that time away from the workforce or taking early retirement can be a financial disaster for many women.

In fact, they estimate that the cost for doing that is approximately $600,000.  So you have to think about whether to leave the workforce – you’ll leave your benefits, your health benefits, your other kinds of benefits.  Your Social Security is no longer accruing, and your pension and other kinds of retirement benefits might be cut.  So it’s a very serious consideration to cut back or leave the work force.

Is it true that it’s less expensive to have in-home care versus putting a family member or spouse in a nursing home?

In-home care versus a nursing home care or assisted living care will vary depending upon how much time a caregiver has to spend with that individual and also how much care that individual needs.  If you have somebody who needs care 24 hours a day, then you have to weigh those kinds of financial considerations pretty closely.  Most family members really spend, on average, between 8 and 40 hours per week on care.  But if you have somebody that has a dementing illness such as Alzheimer’s disease, that time may be actually up to 80 hours a week.  So when you really look at the cost of care and the types of service options, you have to really think through what level of assistance that you need.

What is the anticipated cost of 24-hour care if provided by a family member?

Well, the cost of care for a family can widely vary.  It can be as little as a few thousand dollars a year,  to cover, perhaps, the cost of incidentals or having somebody come in and do some home repair or shopping or do light errands. If you were really talking about somebody who needs a significant amount of care, you may need to pay for some in-home assistance, and that can range from $10 to $15 an hour, if you need to pay for that privately.  Daycare programs can range from $50 to $60 a day.  And if you’re looking for out-of-home assistance, even if you want to have a couple of weeks of respite or some time to yourself, then that can range into the thousands of dollars.  The economic value of family caregiving is about $375 billion a year.  It far outstrips the cost of any formal care that people are purchasing or that the government pays for through any source.  So families really are the backbone in the long-term care system in this country. 

What kind of help does Medicaid offer and who is eligible for it?

Medicaid is a state-by-state program.  It’s a program that matches federal and state dollars to help those low-income individuals with long term care needs.  Now most Medicaid dollars do go for nursing home care that’s part of the Medicaid plan, but there are many, many states that are now doing what’s called a rebalancing effort.  They’re really trying to broaden the array of what’s called community home and community-based services, and those would be services like someone to come into the home and care for the individual, such as in-home health aides, as well as homemaker services, chore services and those types of assistance to really keep people in the home. But I have to say that for Medicaid services, you have to be very low-income in order to qualify and most people do not qualify.  If you have a really older adult who has run out of their assets, out of their savings, and their home and so on, then they may qualify.

Can you talk about how long-term care insurance can factor in?

Long-term care insurance is actually something that families should take a look at.  I think when you are caring for somebody, that individual is probably not going to be eligible for long-term care insurance because they already have a condition.  But what we find is, the adult children who have gone through the experience of caregiving, understand what kind of impact it can have on a family, the financial, the emotional, just the physical exhaustion from caring.  So the adult children are really the ones who are looking at long-term care insurance as one of the options to consider.  It’s not for everybody.  It can be expensive.  But it’s one option that people really ought to seriously consider.

Can you explain the different kinds of caregiving relationships?

There’s a wide variety of caregiving relationships, and through the years what we’ve seen is that for people who are contacting us, those relationships have tended to change over the years.  For example, 20 years ago we had more spousal caregivers contacting us.  What we see now is more adult children caring and contacting us for assistance.  I think what we’re going to see in the future, however, when the baby boomers are into the age group where they themselves are going to be needing assistance, we’re going to see more what I call peer-to-peer caregiving relationships, what we call “families of choice.”  Groups of friends are probably going to end up taking care of one another.  It’s another way of looking at the caregiving constellation.  So when we define family here, we have to define it very broadly. 

Would you talk a little bit about the importance of respite for caregivers?

We really encourage families to take some time for themselves, to take a break every day.   Caregiving responsibilities can, at some times, seem overwhelming to individuals, particularly if you’re dealing with somebody who has a memory loss and you really do need to provide that 24-hour-a-day supervision for that individual.  In that case, it’s really important for people to take a break, because your own sense of frustration comes into play in terms of your relationship with that individual.  Everybody wants to do the right thing.   It’s really important to be able to take a break, take a pause, and to go back to be able to do the right thing and to be able to deal with your frustration in a very positive way.

- This is an edited transcript of an interview conducted March 6, 2009.


1 comment


Subject: Caregiver insurance

I’m currently 46 and although I feel young and keep active looking forward to my retirement years to enjoy my freedom again along with my husband (also 46) I wonder what can we do to avoid becoming a burden to our children or one another when we become dependent of a caregiver. Is there an insurance company or organization that I can contact to get information and see if I can set money aside for this purpose? Is there such program or insurance plan?

Hopefully someone has an answer.

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