Tuesday, February 20, 2018

Traveling Halfway Around the Globe to Find Good Dementia Care



Some of the cabanas

So much Alzheimer care is mediocre at best that it is always stunning when we come across a program that gets it right. Following up on some old newspaper stories about an Alzheimer care facility in Chiang Mai, Thailand, we tracked down Peter Brown. Brown was appalled at the poor care his mother had been receiving in the UK and brought her to live in the resort in Thailand that he and his wife run. When his mother responded well to the setting and the Thai caregivers, Brown began taking in other people from the UK and USA with dementia, gradually converting the facility into a residence for persons with Alzheimer’s disease.

The setting is idyllic—cottages spread out on a large property with winding paths, lush greenery, and a couple of pools. But as Brown explained, the key to good care is simple. Treat people with Alzheimer’s disease with dignity, allow them to live as they want, and have enough caregivers to give them help with the things they cannot do.

The staff to resident ratio is an unprecedented 1 to 1. If a resident wants to go out of his cottage, instead of being blocked by a locked door, the resident can walk out freely and a staff person follows along. If a resident needs help with something, a staff person is there, doing what’s needed but not taking away independence for the things the person still can do. There is no infantilizing, but rather respect and understanding.

Residents can do what they want to do. If they don’t want to come out for meals, their food will be brought to their room. If they want to socialize, there are opportunities, but no one will force a resident out, just in the name of checking a box on a form for “socializing.” We observed two residents sitting together in a shaded area, occasionally conversing and watching activities, human and animal, around the pools and lake. It was a natural event, not contrived.

Brown knows the importance of allowing residents to feel autonomy. Residents live in their own cabanas. There are no roommates, except where a spouse or other relative might share the space. Residents have keys to their cabanas and can lock the door, whether they are in the room or out and about. Staff have backup keys, if needed, but the goal is helping people feel safe and secure with their own personal space. Staff are taught never to walk into a resident’s space without knocking and being invited in first. This type of autonomy was intrinsic to Sweden’s wonderful experiment of group dementia homes, which unfortunately was dismantled for all the wrong reasons, primarily cost and bureaucratic obtuseness,

Why would someone travel halfway around the world for care? Brown has found that families may spend a total of two weeks visiting the dementia patient, spread over a year in the UK, and those visits may be very stressful depending on the setting.  He has family cottages (really luxury Thai resort-style rooms), where family members can come for a relaxing vacation while they visit with their loved one. Some very organized families spread out visits, so different family members come for a week or two every other month or so.  These visits tend to be much more enjoyable for everyone. 

There are other individuals who seek out this type of arrangement, far from home, because they have some awareness of their decline, and they do not want those they care about to see their diminishing abilities.  They are content to be in a very pleasant setting with all of their needs attended to by people who did not know them as they were before.

And then there are the quality issues. The Thai culture is very family-centered, and there is respect and love for those who are elderly.  For those most part, this is a Buddhist culture, where doing the work of caring for those who cannot care for themselves is seen as an honorable occupation that allows the worker to live their beliefs. For this they expect to be rewarded in the afterlife. 

And finally, the cost for this compassionate care in this idyllic setting?  Only $2400 a month.  Really.  Little wonder that almost half of the people in the facility are from the United States, where in most urban areas, a dementia care facility can easily run $10,000 per month.  And prices are comparable in Europe as well.

 Clearly, this is an alternative that will work only for a select group of people. But It is an example of what can be done by putting dignity and respect for residents first. Over the years we have seen some excellent examples of care. It’s often in small facilities where there’s a director like Peter Brown who has a vision of what care should be like, and makes sure staff understands that, too. In the for-profit sector, making money pushes aside concerns about quality and the regulatory agencies are focused on safety (as well as rules for their own sake) but don’t have a clue about the quality of life of the person with Alzheimer’s. So let’s raise a glass to salute Peter Brown and the other people around the globe doing this hard work and translating their vision of what they want for their families and ultimately themselves into doing Alzheimer’s care the right way.




Saturday, January 6, 2018

Steve: Cold weather thoughts



I tried to take down the Christmas menagerie in the yard and found that three of them are frozen solidly to the ground, so they'll be with us until we have a thaw.  The bitter cold this week also reminded me that one of the many things that happens as we get older is having more difficulty adjusting to extremes of cold and heat.  One of my favorite things to do when it is this cold is to sit inside where it's warm and read, enjoying the beauty of the snow from the inside of the house.  Here are a few things I have been reading that may be of interest to you.

The first is an amusing column written by Calvin Trillin in the New York Times Book Review, “When All Thumbs Becomes a Compliment.”  As we get older, we all recognize our growing difficulty keeping up with new technology.  Trillin points out that language changes, too, over time, and the words and phrases we use may become obsolete or the meanings may even change.  Think about what describing someone as “all thumbs” means to you, and then compare it to young people who can work wonders on their cell phones with their two thumbs.  Trillin identifies other expressions where the meaning is changing or may not be understandable to someone under 40 years of old. 


In a more serious vein, I am reading The Warmth of Other Suns, a book by Isabel Wilkerson about the migration of large numbers of African Americans from the South to the North and West.  I had wanted to read the book since I saw a review when it was originally published in 2010, but had never bought it.  Thanks to our daughter-in-law, Cindy, I received a copy over the holidays.  The book is compelling.  Ms. Wilkerson interviewed three people at length who made this journey and interweaves their stories and briefer accounts from other people with a history of how Jim Crow laws in the South re-created a harsh form of servitude, and ultimately led millions of African Americans to leave to seek a better life.  Ms. Wilkerson does not preach, but lets people tell their stories. 

Another interesting story in the NYT underscores how the Dutch are a practical people.  When they recognize a problem, they come up with solutions.  The article, “Afraid of Falling? For Older Adults, the Dutch Have a Cure,” describes an approach to reducing falls among older people.   Falls are quite common and can lead to serious injuries or even death.  There has been excellent research in the US and other countries on risk of falls and on efforts to reduce falls in hospitals.  But less has been done to bring fall prevention into the community.

What the Dutch have hit upon is a combination of creating awareness of the conditions that lead to falls with learning how to fall safely.   The developers of this program argue that fear of falling creates a self-fulfilling prophesy where an older person restricts activities that could lead to a fall and thus becomes more frail and less flexible and more likely to fall.  The program builds people’s confidence to engage in activities.  There are terrific photos and video with the article, so you can see how the program works.
For our own fall prevention, it helps to de-clutter the house and remove hazards like throw rugs and poor lighting.  Grab bars in bathrooms are useful.  Exercises that improve strength, flexibility and balance can also be helpful.


Finally, I mention a story that you almost certainly have not read.  It was in our local newspaper this morning.  A car crashed into a cow.  The cow had gotten past a fence and went into the road.  The car was disabled by the crash, but neither the driver nor the cow were injured.


Sometimes it’s great to live in a place where a cow versus car story makes the news.

Friday, December 8, 2017

Old and Poor

         
When Judy and I first became involved in Gerontology, one of the major concerns was that people would outlive their money and end up old and poor.  This was not just a worry among economists.  Having lived through the Great Depression, older people were haunted by the specter that the economy might crash again, leaving them without basic resources to get along.   There were places in the US during the Depression where as many as one half of people over 65 lived in poverty, with no pensions or possibilities of work.  Their plight, which was described in a report by economist Paul Douglas, proved influential in passing Social Security. 

Since Social Security was originally passed, the financial situation of older people has been shorted up by indexing benefits to the cost of living, reforming private pension, and of course by passage of Medicare, which takes away much of the burden of health care costs.  But the safety net that protects older people from poverty is being threatened.

The threat comes from the new tax bill.  Even with the most optimistic estimates of the potential stimulus to the economy, the tax bill will lead to a gigantic deficit.  Depending on the final wording of the tax bill, that deficit may trigger an existing law that will make automatic cuts in Medicare and Social Security.   And conservative politicians like Marco Rubio and Paul Ryan are already crowing about the prospects of doing away with both programs.  This has been a long-term goal of many conservatives, but they did not talk about it openly, because Medicare and Social Security are popular among voters.  It’s clear they no longer fear the voters.

Adding to the threat to Medicare and Social Security, the Trump administration is unraveling the protections that were put into place in our financial system to prevent another meltdown.  Even something as basic as being able to get redress from a financial manager who knowingly sells you a bad investment has been pushed aside. 

A new book, Nomadland, by Jessica Bruder, may be a harbinger of the future of old age in America.  She describes the lives of a group of 50 older people who were hit particularly hard by the Great Recession of 2008, losing their homes and other investments.  They now roam across the country, travelling where there are jobs, and then moving on when the job ends.  They often do hard labor that would place stress on a younger person.  Maybe the future will not be Mad Max riding through the country in a super-charged car, but us old folks driving down the road like the Oakies in the 1930s looking for a job.


I don’t think I am overreacting.  The threat is real. 

Friday, November 10, 2017

What Nobody Wants to Think About...


Sognfjord, Norway

Today's topic is one that is difficult to think about, but very necessary in order to go into the future with confidence:  Who will make decisions for you if you cannot?

Nobody has a crystal ball, so we don't know what kind of challenges may be up ahead.  Maybe you'll get really lucky and stay reasonably healthy, cognitively intact, and able to make your own decisions until you are quite old, and then have a short, precipitous decline...that's the best case, I think.  Not quite as desirable is a period of illness, but with cognitive abilities intact.  And, of course, nobody's first choice is gradual intellectual decline.  Somehow, we have to plan for all of those contingencies.  

Let's be honest, this is about maintaining control of outcomes, and if you don't make serious plans, you are actually choosing to roll the dice.  For example, if you don't have advanced directives the default is for medical professionals to do everything they can to save your life, regardless of the outcome.  That may be your wish, but if it is not, if you do not want to be maintained on life support when there is no possibility of recovery, it will happen anyway.  Regarding your finances, if you don't designate someone to act in your best interest should you become incapacitated, eventually a court appointed guardian will be appointed to do so, but it is also possible that someone could exploit your resources before that happens.

So, how do you choose the person or persons who will be able to make decisions for you if you are no longer able to do so?  Let's consider health care advanced directives first.  It is important that the person you designate lives near you, since they may be needed in an emergency.  It should be someone that you have discussed your wishes with, and ideally that person shares your views on how much medical care you wish to have under different circumstances, or at the very least, is willing to honor your wishes.  Who might this be?  It may be an adult child, and if you have several children, it may be possible to name more than one, or one to back up the other, which spreads the responsibility around somewhat.  

But what if, for a variety of reasons, your children are not a good choice or you do not have children or other relatives who could take on this responsibility?  Or let's say your family members have a different view of how much medical intervention is desirable.  You may want no extraordinary measures taken because you feel you are at the end of a good long life, but your family may want everything done because they are not ready to let you go. We have seen situations where there have been complicated relationships between parents and children that make it difficult to either discuss this issue or to rely on children when the time comes.  Or what if you have always been an independent, autonomous person, and you don't want to burden your children with making these decisions for you? 

Sometimes trusted friends are a better choice than family.  The nature of a peer relationship makes it easier to discuss such sensitive issues, although it may be necessary to choose someone somewhat younger (or at least healthier) than you are to ensure the arrangement endures for your lifetime.  When thinking about who to ask to take on this important responsibility, we suggest you look for someone who has the emotional strength necessary, and ideally someone you have known for a very long time.  What you are really looking for is someone who has no other agenda and no personal stakes in the outcome.  In other words, you can count on them to do what you want.  

We have known people to enter Continuing Care Retirement Communities as a way to not be a burden to their children.  And this does work, in a certain way, as the facility will take over to make decisions.  However, it is also true that the facility may have its own agenda that can subtly drive those decisions, as we've mentioned in previous posts (See:  Thinking About What Comes Next, 3/15/16).

Remember when Judy's mother was alive we had a Geriatric Care Manager who also had Medical Power of Attorney when we were out of town?  In the end, that allowed her to accompany Avis in the emergency room, and she was familiar with her wishes.  This worked for us, in part, because Judy had worked with the woman for many years and trusted her.  If there is a trusted professional that you have a long relationship with, whose honesty you have seen demonstrated, and who has no investment in the outcome other than honoring your wishes, it would be possible to designate them to make decisions for you.  

The financial issues are definitely more complex, just because of human nature.  One of the reasons that my mother chose me to be her Financial POA is because she knew that I did not need the money.  She also knew my philosophy, which was that the money was there for her use, and I encouraged her to spend it for her own comfort, not to try to preserve the estate.  These are questions you can ask yourself about whomever you are considering for this role:  Is this someone whose judgment in money matters matches mine?  Do I have confidence that this person will watch out for my best interests?  You will be asking the person to take on a responsibility, so is this someone who would not mind doing that?

What if you feel you do not have anyone you can rely on fully when it comes to managing your money or who might be overburdened by the responsibility?  When I think of an ideal arrangement for someone who wants peace of mind about what will happen should they be incapacitated I'm unfortunately reminded of the many cases I saw where someone was exploited.  It makes me wary of the motives of those who might be seen as the obvious people to turn to, such as attorneys and accountants, and even in some sad cases, family members or paid caregivers.  

I struggled to come up with a recommendation. What I have come up with may be a little more complicated than just naming someone as your Financial Power of Attorney, but it may also provide a little bit of a safety net.  I would suggest that perhaps the same person you have turned to for Power of Attorney for Health Care could be designated to supervise a bookkeeper or accountant who would take over the day-to-day finances.  That way you are not overburdening your friend or relative with the bill-paying, and the POA for Finances (your friend) can keep an eye on the overall financial situation (including investments and savings).  Likewise, the bookkeeper or accountant could make sure money is handled in appropriate ways. I would suggest monthly statements from the bank and other financial institutions go to both the bookkeeper and the POA.  It is very important to choose someone you trust for both positions.  You also gain the added security of not relying just on one person, but having a second person for oversight. 

Your goal is to set up a solid safety net so that you are cared for medically and financially in the way you wish, allowing for all of the possibilities and unknowns.  Then, once you have it set up, you can go back to not thinking about it and hope that you never have to exercise those options.  

That's what we're doing.



















Tuesday, October 31, 2017

The Kindness of Strangers? How People Want to Separate You from Your Money

From the Summer of Love Exhibit at the DeYoung Museum in San Francisco

As we all know, there are scam artists, conmen (and women) and sleazy contractors and businesspeople out there, hoping to make a fast buck.  We're all vulnerable to some extent, but as we get older, we can become much more of a target.  It may be a combination of seniors having more assets, and at the same time, not being quick enough to recognize a fraudulent pitch.  By some estimates, 10% of all older people experience financial fraud.

We recently read an article in The New Yorker about a truly nightmarish situation, where private guardians in Nevada with the collusion of some health care professionals and possibly also people working in the courts gained control of older people’s estates.  People were literally seized in their homes and moved into assisted living.  Their homes and possessions were sold off and the guardians used high fees to siphon off money from their estates.  Often, the reason guardianship was awarded was for dubious or trumped up reasons, and the people involved were not present during the court proceedings and were not allowed to have their own counsel.  Their efforts to regain control of their estates were re-buffed by the courts and even their children’s efforts to take over guardianship were brushed aside.   This was plain and simple theft.  Some of the perpetrators have now been indicted, but the damage has been done to perhaps hundreds of people.

This is one of the most outrageous scams that we have heard about.  Most states require an older person to appear in court and to be represented by an attorney in any guardianship proceeding.  Furthermore, the court would require an evaluation by an independent expert to determine the person’s capacity to make their own decisions, but that was not the case in Nevada.  The Nevada legislature is currently working on a law that will give people the right to have legal representation in guardianship cases.  But even in states with more protections, abuse by guardians is frequent.   An organization called Americans Against Abusive Probate Guardianship (aaapg.net) has been formed to publicize abusive situations and to advocate for changes in the law that provide more protections against improper use of guardianship.

One way to protect yourself is to give a trusted friend or family member power of attorney.  This is widely recommended by legal experts so that someone can act in your behalf in the event you are no longer able to manage your own financial affairs or make medical decisions.  We will write another post addressing this particular issue.

Separating people from their money has gone on forever, but since the economic meltdown in 2008, there has been increasing focus on the actions of financial advisors and their investment firms that dumped risky investments like bundled mortgage securities on their clients, and then walked away with the profits, while their customers took the loss.  Another strategy used by financial advisors is to put clients into investments where the advisor or his/her firm makes a bigger profit, rather than what would be the best investment for that person. 

Accusations have recently been raised that an investment company that had a reputation for integrity, TIAA (Teachers Insurance and Annuity Association), had embarked on a path of doing what’s best for the firm and not for its clients.  In an October 21 article, The New York Times summarized allegations by former employees that TIAA had been encouraging clients to move their funds from low fee, self-managed accounts into managed accounts without revealing that the investments have higher fees.  Additionally, it was reported that employees had to meet quotas for how many investors were signed up for these funds.  


To address these types of questionable activities, President Obama issued an order that required investment firms to work in their client’s best interest.  President Trump recently rescinded those regulations.  When people handle money, there is always temptation.  Without rules or oversight, it’s a jungle out there. 

Of course, there are also the everyday scams, door-to-door trolls looking to sell something they won’t ever deliver or that costs more than its true value, as well as telephone, email and other electronic media scams.  Have you received this call? The caller identifies himself as with the Internal Revenue Service and says you owe money at will be fined or go to jail unless you pay.  AARP posts information on various scams at https://www.aarp.org/money/scams-fraud/info-2017/imposter-scams-con-man.html?intcmp=AE-MON-BB-LL2.  The bottom line is don’t give anyone over the phone or by email any financial information, including charities.  Go instead to verified websites.

For more information:

“How the Elderly Lose Their Rights, The New Yorker.  https://www.newyorker.com/magazine/2017/10/09/how-the-elderly-lose-their-rights

“The Finger-Pointing at the Finance Firm TIAA,”  The New York Times, https://www.nytimes.com/2017/10/21/business/the-finger-pointing-at-the-finance-firm-tiaa.html?_r=0