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.




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