Thursday, September 15, 2016

More on Staying at Home – Adult Day Services as a Valuable Option

One of the most critical, yet least used services to help older people stay at home is adult day services.  For many people, adult day services can make the difference between staying at home and going into a nursing home or assisted living.

I have written before about adult day services, but I just got back from attending a board meeting of the National Adult Day Services Association (NADSA) and made some observations that I think are worth recounting. 

Perhaps what has stood out for me most during this meeting and during past board meetings and the annual NADSA conference is the idealism of the people involved in running adult day services programs.  They genuinely care about the people they serve and about doing the best possible job.  During the board meeting this past week, we were talking about new directions and goals for the association and for individual programs.  One board member, who was trained as a CPA and who has been in the business for a while stood up to talk.  You might think someone with his background would talk about money.  Instead, he passionately argued that the main focus has to be on the quality of life of the people adult day programs serve.  In my time on the board, I have never heard a discussion of how to increase profits, but only how programs can reach more people and improve how they serve them.

I also heard about some innovative adult day service programs.  One of the biggest problems that adult day service programs face is an initial reluctance of families to enroll a parent or spouse.  People see these programs as nothing more than baby-sitting for elders, with meaningless activities.  But good programs provide a rich program of activities that provide cognitive, social and physical stimulation.  When done well, these activities may help keep people active longer.

A program in Indianapolis has overcome this initial reluctance to use an adult day services program.   Along with regular activities, the program provides physical and occupational therapy for individuals who need it.  For everyone else, there is a regular walking program as well as other activities.  According to the director, families are not reluctant to use the program, because it offers therapy.  Ongoing or intermittent PT and OT may also lead to gains in functioning or at least prevent or slow decline.  In its “penny-wise-pound-foolish” way regarding anything except medical tests and procedures, Medicare does not see the benefit of this type of maintenance. 

Why don’t more adult day service programs do something like this?  Here the answer is money.  Most programs would have trouble covering the cost.  Medicare will pay for OT and PT for a limited time following a hospitalization or other new problem.  OT and PT can be offered on an outpatient basis, including in an adult day program that meets Medicare regulations.  Indeed, it would be a cost-effective way of doing so compared to a nursing home or rehabilitation hospital, since the participant would be living at home.  But once Medicare coverage runs out, the adult day program would have to charge the full Medicare rate for participants to continue, whether or not they are able to pay.  Medicare does not allow different rates for different people or sliding fee scales.  The Indianapolis program, which is a religious-sponsored non-profit, covers costs not by billing Medicare but by raising donations, and they have been successful in doing so for 20 years. 

But the bottom line is that, with or without PT and OT, adult day services can provide meaningful activities that support cognitive, social and physical functioning.  Participants can engage in enjoyable activities, whereas at home, they are more likely to be inactive.  Furthermore, there is an increasing emphasis among adult day service programs to offer person-centered programming, that is, activities that are tailored to each person’s preferences.  And their family caregiver will get time away from caregiving.  Finally, the program is likely to be run by energetic and committed people, who, like the NADSA board members, place quality of life as the central goal.

If your goal is to stay at home no matter what, a good adult day services program can do this.  A couple of program directors talked about how they are able to maintain people until near the end of life, when they are discharged from adult day services directly to hospice, usually at home.  People are able to live and die how they want, not in the sterile and often demeaning nursing home environment.

As a postscript, let me explain Medicare’s reasoning.  They provide support for OT and PT for only a limited time, because they view it as a specific treatment response to an acute problem, such as a fall or a stroke.  They believe that after a certain amount of time, all the potential gain that could be made, has been made.  How was this determined?  Not by empirical evidence.  At some point in the past, a physician who may or may not have been a rehabilitation expert may have stated a number of days after which no further benefits would occur.  Or even worse, a health economist may have concluded that the cost-benefit of additional days of OT and PT was not worth it.  Medicare would also argue is also no evidence that treatment such as done at the Indianapolis adult day services program helps maintain functioning over time. But does it work?  As far as I know, evidence is limited although a recent article suggested that OT in the home along with other services led to improved functioning.

About the photo:  The NADSA Board Meeting and Annual Conference was held at the Crown Plaza Union Station Hotel in Indianapolis.  The hotel is built into the old railway station.  I stayed in one of about 24 rooms that are located in renovated train coaches.  It was very cool and quite comfortable.

The Boss Looks Back and Ahead

Attending a Bruce Springsteen concert triggered some thoughts about aging.  Bruce is Steve’s favorite singer—in fact the favorite of all the boys in the family.  Steve and son Matt went to see Springsteen and the E Street Band in Pittsburgh on Sunday, September 11.  Bruce is releasing an autobiography, September 27.  Like many of us, he has reached an age when he is looking back over his life. 

The current tour, which began in Pittsburgh January 16 with Matt and Steve in the audience, was originally designed to celebrate the 30th anniversary of the release of The River, a double album with many of Springsteen’s most popular songs (Hungry Heart, The River, Sherry Darling).   That first concert last January had the feel of visiting a museum, familiar and pleasant.

Last Sunday’s concert was a different story entirely--high energy, inventive, electric.  When it was over, Matt and I turned toward each other and said it was the best concert we had ever seen.

Springsteen didn't mention or hype the autobiography, but he has obviously been thinking about his whole career.  He played a lot of songs from his first two albums, like “New York City Serenade,” “It’s Hard to Be a Saint in the City” and “Kitty’s Back,” but they were done in new, fresh and energetic ways that highlighted the unique blending of jazz and rock from the early years.

Springsteen also marked the anniversary of the 9/11 attacks by playing intense versions of songs from his post 9/11 album, The Rising.  When he played “My City of Ruins,” the song he did for the 9/11 Benefit Concert about 3 weeks after the attack, he had the audience in a frenzy as he repeated the refrain, "Rise up, come on rise up."  Another song he did was "41 Shots," which he wrote in 1999 about the killing of Amadou Diallo by New York City police.  I have heard the song several times live and in recorded concerts, but never before with this intensity.  The anger was palpable but there was also sadness.  And Springsteen did all the standards like “Badlands” and “Born to Run” with energy and humor.   The concert started around 7:45 and ended at 11:40 with a rousing version of “Shout.”

This did not feel at all like a concert in a museum.  It was loud, raucus, and inventive, pushing old songs in new directions.  Bruce is looking back, not just out of nostalgia. He is rethinking, revising, making the songs and sound relevant again.  Part of the gift of aging is the knowledge and experience we have gained over the years.  But for Springsteen, it’s not enough just to retell “boring stories of Glory Days.”  He doesn’t just go through the motions of singing so that songs sound unchanged from 30 or 40 years ago.  Instead, he is making the past fresh, new and exciting.   

That’s a good lesson from The Boss.

One postscript.  Those of you who have been to Springsteen concerts know he takes requests from the audience.  In introducing one request, he told the audience it had been written on a copy of the constitution with the words “F*** Trump” written on it.  He smiled and then played the request.  It was a quiet and lovely song, “Long Walk Home.”

Alternatives to Staying at Home: Part 3 of “There’s No Place Like Home”

We continue our series on staying at home as you grow older.  We previously wrote about how it is necessary to plan ahead (May 30, 2016) and how you need to be willing to accept help (June 11, 2016).  Without a plan and a willingness on your part to accept and pay for help when you need it, your preference to stay at home will founder.  Someone--your children, neighbors or social worker—will decide it is unsafe for you to stay at home or just too inconvenient to arrange the help you need to stay at home.

Here we will explore two types of housing alternatives for older people, 55+ Communities and Continuing Care Retirement Communities (CCRC).  We also briefly look at other housing alternatives.  We present advantages and disadvantages of each type of housing.   We also want to emphasize that within each category of housing there is a great deal of variation.  Our thumbnail sketches do not capture the full range of what you are likely to find.  If these types of housing are appealing to you, you will want to visit the programs available in your community or the community you are interested in moving to, preferably several times.  You need to get a feel for a place and whether or not it seems like a good fit for you. 

55+ Communities

Fifty-five plus communities have been around at least since the 1970s, and they include several national chains (probably best known is Del Webb).  Ownership is restricted to people who are 55 and over.  Communities typically have facilities like a social center, gym, or pool.  The community takes care of tasks like maintenance of the outside of the buildings and snow removal.  Residents organize activities, outings and social clubs.  Many residents are retired, but some may continue to work.  

These are communities that are designed for people who are healthy and active. 
They can be great places for someone who likes to be around other people and to be involved in various clubs and social activities.  Judy’s sister Connie moved into a 55-plus community near her son and his family about a year ago and has enjoyed the activities and made a lot of friends.  The community is also located just outside of a mid-sized town that has cultural activities, restaurants and shopping.

One potential drawback is that 55+ communities do not generally offer help in case a resident has health problems or becomes disabled.  Your contract covers your residence and the community’s facilities, nothing more.  There may be a care manager or home care agency that the community will refer you to, but you or someone else will have to make arrangements and you will need to pay for the services.  In the event that you can no longer drive, there may be no transportation in the community to take you for shopping or appointments.  In fact, since 55-plus communities are often built in places where land is cheap, shopping and other amenities can be at a distance.  There is also usually no place to get meals on the community grounds.  So you may end up moving again if your needs outstrip what is offered.

Another disadvantage is that like any social group, cliques may form that may or may not be welcoming to new residents.  When Judy and her sister looked at the available communities in the area she was interested in, there were three.  The first was about twenty years old, and the condos looked it. We visited the clubhouse, which was busy and had lots of activities, but the average age of the residents looked to be on the north side of 80.  The second place we saw was a probably only a few years old, but the amenities were quite limited.  There were not many people out and about, and we wondered if many of them were still working.  The third place we saw, and the one she ultimately chose, was still under construction and had gorgeous recreation facilities.  The age range was much wider, but the average age was close to 70.  One of the advantages of a new build is that there were lots of people still moving in, and so everyone was looking to make friends.  That may not have been the case in the well-established communities.  In any case, you need to explore what the social life is like in a community so that you know that you would be comfortable there.

Continuing Care Retirement Communities

Unlike 55+ Communities, Continuing Care Retirement Communities (CCRC) (also called Life Care Communities) offer both independent living residences and facilities that can take care of you when you might need help.  This model is based on a realistic understanding of growing older:  sooner or later everyone will need some help.  These communities are run by non-profit organizations and by private companies.

The idea of the CCRC is that you pay a sizable entry fee, which functions like an insurance policy that helps defray the costs of services when you need them. The amount of the entry fee varies by facility.  The entry fee or some portion of it is not refundable. 

CCRCs typically have three levels of care: independent apartments, assisted living and skilled nursing.  Independent living is just that, though many communities require you purchase a meal plan for at least one meal a day.  House cleaning may be included or may be available for a fee.  Assisted living is housing for people who need help with everyday activities (such as dressing), but who do not need much medical care.  Nursing homes are for those residents who do need a lot of care.  Many CCRCs also have memory care programs, that is, assisted living for persons with dementia.  The idea behind the CCRC is that people will be able to live independently for as long as possible, but when they cannot manage in their own apartment, they can get the help they need in assisted living or nursing care right on site.

Besides the entry fee, people pay monthly rent and additional fees if they move to assisted living or the nursing home.  Originally, CCRCs were designed so that the entry fee would cover all these costs, even if the resident ran out of money.  That is no longer the case, except possibly for some non-profit facilities.

The rules in most CCRCs are that new residents must be healthy and able to live independently.  That way the entry fee can accrue interest and go farther in paying for care when it is needed.  There can be exceptions.  We have known couples who moved to a CCRC when one of them needed care.  In those cases, the entry fee was higher and the person needing care lived in assisted living. 

The advantages of CCRCs are obvious.  No matter what happens you will be cared for, and in the meantime you will be able to live in a congenial community with on-site activities and amenities like a gym and pool and activities.  Medical care is often part of the contract, and so doctors and nurses will be on site.  There are many high quality CCRCs throughout the country.  Judy’s clients who lived in one of the several CCRCs in our community, told her that giving their children peace of mind was the number one reason they made that choice.  The second most common reason is that there were people they had known all of their lives in that particular facility, so it had the feel of familiarity.

There can also be disadvantages to CCRCs.   You will be in close proximity to people and so you need to figure out if you will fit.  As with 55+ Communities, you may find that social groups have already been formed and are not particularly welcoming to new people.  One of the CCRCs here had a high concentration of educated and professional people from the local community who organized their own “cocktail hours” in their apartments and went to meals together.  This group was impenetrable to newcomers, and there were newcomers who felt left out.  This was a particularly difficult community for anyone who did not have a college degree, as well.

Furthermore, communities, like individuals, age.  When a CCRC opens up, there is an influx of new people, most or all of whom are independent and do not need help of any kind.  Over time, however, more persons need care and that can create considerable financial pressure on the community.  Bankruptcies have been a problem in the past, as persons lived longer and needed more care than expected and the money wasn’t there to cover the costs.  Current financial models where residents’ monthly costs rise when they need more expensive care may address the problem.  But there were bankruptcies following the housing crisis in 2008-09.  Bankruptcy, of course, means that residents will lose some or all of their original investment and any other benefits in their contract. 

Another problem is that the administration of the CCRC can change.  The new administrators can introduce new policies that alter the character of the facility.  We are familiar with one religious-affiliated CCRC that had a forward-looking idealistic director when it opened.  He left after a few years, and was replaced by someone who was more interested in the bottom line than in maintaining quality of life in the community.  Undoubtedly, the new director was responding to economic pressures, but the sense of community, and the extent to which residents had a say in what happened eroded.  Of course, when you move into a CCRC or any other type of specialized housing, it is hard to know if management will stay in place, or if someone new will come in and change everything around.

The ideal goal of some CCRCs is to maintain people in their apartment for as long as possible, bringing help to them if it is needed.  While good intentions may be present, there are financial realities that may undercut the best of them.  The most expensive level of care (skilled nursing) also costs the most, so as soon as a bed becomes available, there is pressure to fill them from the ranks of the assisted living residents.  In subtle or sometimes obvious ways, the administration assesses residents in assisted living, and the most vulnerable one will be targeted to move to skilled care. The family and resident will be told that they are no longer “safe” in a lower level of care or that they are requiring too much care to stay where they are.  We’ve seen administrators who are quite adept at convincing themselves that they are doing it for the benefit of the patient, but often it is truly motivated by the financial agenda of keeping the more expensive beds filled.  Likewise, as places in assisted living bed become available, administrators start to look to fill those spots from the independent living group. We have even seen couples separated, one remaining in independent living and the other going to assisted living, even though it was clear that the person who was moved could have remained in the apartment with a small amount of help.  We have observed this happening in both private and non-profit facilities. 

This is, in a way, an underlying conundrum in CCRC.  People move in order to have some control over what happens to them, to be assured they will get good care if they need it.  Yet control can be taken away.  You may not have a say in whether or not you stay in your apartment.  That decision may be made by the facility.  They may be looking after your best interests or their own best interests.  But unlike staying in your own home (or a home in a 55+ community), you won’t have the final say in the decision.

Other Types of Housing

Some facilities offer the same range of care as at a CCRC, but on a pay-as-you-go basis.  In other words, there is no entry fee, and you pay for the care you need.  The facility may help bring in home care to help support people living in apartments, but may also push people to move when there are vacancies in assisted living.

Many assisted living facilities are free-standing and don’t require you to be part of a CCRC.  If you find you cannot manage at home, you can move to one of these residences.   The idea behind assisted living is that it provides a homelike setting that allows people to be as independent as possible.  Most disabled older people just need a bit of occasional assistance and meals, and assisted living can provide that.  In the best (and most expensive) places, you will have your own apartment and a certain amount of autonomy. 

In Sweden, there was a type of housing similar to assisted living called Service Hus (literally, Service House).   Older people had their own apartments, but could receive help if they needed it.  Meals were also available on site.  This type of housing was gradually (but not completely) phased out, and instead, the government tried to support people in their own apartments by bringing help in.  Now the government is reversing course and reverting to the Service House model.  The reason seems to be it is more efficient and less costly to bring services to people in one location, than when they are spread out across the community.  Service Houses are also very popular among older people themselves and there has been considerable demand for service house apartments. 

Steve has visited Service Houses on several occasions, most recently this past May.  In the particular facility he visited, the apartments were new, bright and modern.  As is typical throughout Sweden, people had their own apartments.  They have a lease and a key to the door, which is far more autonomy that in assisted living.  Steve and his students had lunch in the facility’s restaurant—the same food residents got, and found it very good.  Residents could go to the restaurant to eat or have meals delivered to their apartment, or prepare meals in the kitchen in their apartment. 

This is a model that is appealing.  People can have independence and autonomy, but get the help they need.  Unfortunately, many assisted living facilities in the USA are uninspired programs that do not have much to offer to support quality of life.

Another option in the USA is federally funded housing, which is available for low-income seniors.  These facilities have traditionally been for people who are independent, but there has been more effort in recent years to provide some services so that people with disabilities, both over and under 65, can continue to live in their apartment.  In other words, there is some movement toward the Service House model, though meals are not typically available.

What Should You Do?

The bottom line is that there is no one perfect solution and the best solution for one person may not work for someone else.  For many people, a 55+ Community or a CCRC is an excellent choice, offering them a good quality of life, and in the case of the CCRC, the assurance that good care will be available when they need it. 

Maybe in part because we have worked as gerontologists, what’s important to us is having control over the decisions of where and how we live.  Staying at home serves that purpose best, but we also recognize that requires planning and compromises.  For others of you, being part of a community with lots of activities may be the most important thing.  Or knowing that if you need help, it will be provided.  This is why doing planning now is so important.  Find out what’s available.  Visit communities where you might live.  See what feels right to you.

About the Photo

The photo is of a classic Renault owned by a Swedish friend of ours, Gerdt Sundstrรถm.  The translation of the slogan on the back window is “Old – but vital.”

For definitions and more information on Life Care and Continuing Care Retirement Communities, see