Starting the Conversation about Long-Term Care: 10 Things You Should Know

BY April Brown  May 30, 2013 at 12:11 PM EDT

I’ll admit it — I don’t like to talk about death, dying or getting older. And long-term care or end-of-life issues are not subjects I really want to discuss with my parents on the few occasions each year when I travel cross-country and spend time with them. But after working on the first story in PBS NewsHour’s series on long-term care, I bit the metaphorical bullet and started that conversation.

One night, over a family dinner, I described the experience following small-business owner Rebecca Wyant as she also tries to manage being the full-time caregiver for her mother Mary who suffers from Alzheimer’s disease. I also mentioned that the Wyants had not done any planning for this possible eventuality, which had caused some stress when it became clear Mary was becoming increasingly unable to care for herself.

Rebecca Wyant helps her mother Mary, who suffers from Alzheimer’s, out of bed. Photo by Mike Fritz


Talking about the Wyant’s experiences provided a natural segue to ask my parents if they had made any arrangements for long-term care, or considered what kinds of health-related decisions they might want made on their behalf, should it ever become necessary.

Starting the discussion was also made easier because my sister, who had joined us at the dinner table, was quick to “second the motion” that we all start looking ahead, and make plans for some situations we hope we never find ourselves in.

As a family we still have quite a bit to discuss. But at least the conversation has begun. And there are resources to help broach the subject of planning for the later stages of life. The SCAN Foundation, a non-profit charity with the mission of changing health care to encourage the independence and preservation of dignity for seniors, has created several lists about aging and long-term care.

10 Things Every Family Should Know About Aging with Dignity and Independence:


1. You are not alone

Today, there are nearly 67 million people in America providing assistance to a spouse, parent, relative, or even a neighbor. As individuals grow older, they are more likely to need assistance that will enable them to live with dignity and independence in their homes and communities. Start preparing today by talking with your family about what aging with dignity means to you, and ask for help if you need it.

2. Different people need different kinds of support

Older people with health conditions and difficulties with daily activities have a variety of needs such as preparing meals, getting in and out of bed, getting dressed or going to the bathroom, and running errands like going to the grocery store or the doctor. All of these routine activities that we often take for granted as part of our everyday lives are vital to allowing individuals to age with dignity and independence.

3. Support that family members give counts

Family caregivers make up the backbone of support to older Americans. There are usually three different ways that families can help an older loved one get the support they need: physical or hands-on care, financial support, emotional support to their loved one, especially as health issues become more complicated. Whether you are providing one of these types of support or all three, a little bit of care from family can go a long way towards helping loved ones stay in their homes and communities as their abilities change.

4. Long-term care is expensive

Paying for daily support services can add up. In 2011, the average cost of having a part-time aide come to your home averaged about $21,840 per year, and the average cost of a semi-private room in a nursing home was $78,110. Such high costs are often unaffordable for the majority of the nation’s middle-class families.

5. Medicare doesn’t pay

Many people mistakenly believe that Medicare will pay for long-term services and supports. The reality is that Medicare only pays for short-term rehabilitative care.

6. Talk to your loved ones

Planning ahead is important. Do not wait for an emergency or other critical incident to start discussing care needs of your loved ones. To ensure that they receive the best care possible that honors their wishes and desires, begin a dialogue about these issues now.

7. Talk with your loved one’s doctor(s)

People’s health needs can change over time. There are a number of important conversations to have with your loved one’s doctor(s) to make sure he or she is getting the right care at the right time and from the right professional.

8. Build a circle of support

Your loved one may have identified a surrogate decision maker in case he or she is unable to make health decisions on their own, so be sure to find out who that person is. There may also be others who are counted upon to help make important decisions, such as attorneys, financial planners, insurance providers, family members and others.

9. We all want to age with dignity, choice and independence

This means being able to live life to the fullest, regardless of our daily abilities or physical limitations. Find out how your loved one defines living with dignity, choice and independence and have that be part of your master plan for securing care and services for him or her.

10. Your voice is important

Decisions are being made at the state and federal level that could impact the services that are available to you and your loved ones. It is important for you to stay informed, get involved, and take action. Talk with your local, state, and federal officials about what kind of support you want as you grow older.

Full English and Spanish language versions of lists on aging with dignity can be found on the SCAN Foundation’s website.

The SCAN Foundation is an underwriter of the PBS NewsHour.


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