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How Hogeweyk “normalizes” dementia

Last month, my column was about my recent visit to the Netherlands for a tour and workshop at Hogeweyk, famously known worldwide as the “Dementia Village.”
The first thing I learned was that no one ever refers to Hogeweyk as a “dementia village.”

This is the term Sanjay Gupta coined some five years ago in his visit and story for CNN. Gupta used that term so his American audience would quickly grasp what he was talking about. But not only do the managers not use the term; they really don’t like it!

Their choice to avoid the term “dementia village” reflects their essential commitment to an atmosphere and practice of “normalcy” in their environment and techniques of dementia care. They are not hiding what they do. They are not ashamed of it. They simply believe that NOT separating people living with dementia from the world in which they grew up is the key to better care and quality of life, and this belief permeates how they think and everything they do.

For example, the people at Hogeweyk actually laughed when one in our group used the term “pet therapy.” We could tell from the blank stares among our delegation that something was going on that we did not understand.
Then they gently explained, “Do you use the term ‘pet therapy’ when little children respond well to animals? No, they simply love animals! It is a natural human response. There is no ‘therapy’ to it. It is the same with people with dementia. Our need to think of their natural love of animals as some kind of ‘therapy’ that we discovered is an example of us setting them apart from the rest of the world, whether we realize it or not.”

This is why, as I mentioned in my column last month, their care staff do not wear scrubs, uniforms, or even name tags. They are just people living in the village with their friends with dementia. As I began to gasp this concept, I began to notice how hard they try at Hogeweyk to pursue normalcy in every little detail.
I also mentioned last month the Hogeweyk has an open gate, but very little trouble with wandering. This is because their residents are comfortable where they are. There is nothing unfamiliar to alienate or frighten them, so they feel little reason to “escape.” Hogeweyk actually encourages mobility, which is not the case in too many of our dementia care facilities in our own country.

Here in America, we certainly grasp this concept of “normalcy,” but we have not yet even begun to dip our toe into the water. For example, we place familiar objects in the rooms of our residents living with dementia, but the moment they leave their room they step into the hallways of a medical factory.

Yes, I use the term “factory!” Our medical care has evolved from the concepts of efficiency and replication spawned by the industrial revolution. This may work well for many kinds of physical illness, but it does not work well for diseases of the mind when change and unfamiliarity can be confusing and frightening.

I wonder if we harm our loved ones with dementia even more by toying with little tokens of nostalgia and familiarity in parts of their environment, then thrusting them into common areas that are similar to the emergency rooms of hospitals or the lobbies of hotels. Surely this must be confusing and jarring to minds that are already struggling to understand why, who, and where they are.

Here is the link to the video of Sanjay Gupta’s visit to Hogeweyk.
https://www.youtube.com/watch?v=LwiOBlyWpko

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]

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Hogeweyk: A model for person-centered compassionate care

November is National Alzheimer’s Month. This will be used by many organizations to supercharge their efforts to solicit donations for a cure. Well and good, but I would like to see an equal level of enthusiasm directed toward funding to support family care partners and organizations that promote person-centered compassionate care. For those already in the journey, a cure cannot come soon enough.

I have just returned from the Netherlands where I spent two priceless days of learning at Hogeweyk, otherwise known worldwide as the Dementia Village. It is, in my opinion, a world-class model of best practices in person-centered care. Since its founding some 20 years ago, this organization has continued to seek, find, and implement better practices of compassionate dementia care.

The goal of Hogeweyk is to provide a “normal” environment. Seniors classified with severe to end-of-life dementia live in “villages/homes,” not in little rooms in big buildings that look like hospitals, factories, or hotels. Hogeweyk simulates four different Dutch lifestyles, and residents are evaluated to live in the village that best duplicate the lifestyles in which they were raised and lived prior to dementia.

Because daily shopping for groceries is still a society-wide practice in the Netherlands, Hogeweyk has its own market where residents go each day to shop. There is a restaurant, but most residents eat in their own apartments which are carefully outfitted with the furniture, tableware, and decorations consistent with their “lifestyle.”
It is a gated community, but not locked down. Residents are free to go where they choose, but wandering outside rarely happens because they are comfortable and have what they need in the environment that has been created for them. Hogeweyk is studiously maintained to NOT look anything like a hospital or health facility. Care staff do not wear scrubs; rather they wear normal street clothes with no name tags.

“Normalcy” is so well maintained that people come in from the town to enjoy Hogeweyk’s restaurant, which helps supplement the community’s income. Sometimes, it is a bit difficult to tell residents from the visitors. And among the residents, I saw very few using wheel chairs. Most residents are mobile, spending their time outside, in social activities, or interacting with the people of the community.

My mind is still spinning from this experience, trying to process the things I saw that were so different from the kind of senior care we are used to. I expect I will be sharing more of my thoughts about Hogeweyk in future columns.

Could these techniques of person-centered compassionate care be implemented on a national scale through our system of institutional care? I don’t know, but I think we should be doing everything we can to find out. This is why we recently created in Citrus County a nonprofit organization with the stated vision to create an institute for researching, teaching, and promoting techniques of compassionate care, including nonpharmacological therapies.

It does work; I’ve seen it work. And I believe pursuit of the methods I’ve seen at Hogeweyk is the best way we can use the resources we have until someone comes up with that illusive cure.

Here is the link to the video of Sanjay Gupta’s visit to Hogeweyk.
https://www.youtube.com/watch?v=LwiOBlyWpko

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]

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What are the stages of dementia, and should you really care?

Many people think their understanding of dementia depends on knowing what “stage” their loved one is in. On average, dementia lasts eight to 12 years between diagnosis and death. It is progressive, irreversible, and fatal since no cure has yet been developed. But the symptoms and progress of dementia can be unique to the individual, often defying any tidy organization into “stages.”

First, there is no single system to identify stages of dementia. Some dementia practitioners say there are three stages, some say four, and some say there are five. Perhaps the most widely recognized scale among neurologists is the Global Deterioration Scale developed by Dr. Barry Reisberg in 1983, which identifies seven stages. But then there is FAST — the Functional Assessment Staging Test – that subdivides these seven stages into 16! Confused yet?

I can understand how these analytical approaches to categorizing the progress of mental and physical deterioration caused by dementia can be helpful for scientific research into therapies that can improve quality of life, but how can identifying and talking about the “stages” possibly help our care partners who struggle daily with real-world dementia? Your assigning your loved one a “stage” does not make him or her feel any better; nor does it make your task any easier.

I believe that focusing on the so-called “stages” of dementia is at best irrelevant to good care, and at worst detrimental to a care partner’s emotional health and wellbeing. Not only can it paralyze the care partner with fear when they must look down that long road of future “stages,” but it also can cause them to focus on the medical aspects of the disease – which they can’t do anything about — rather than the immediate quality of life of the person they are caring for.

In short, talking or worrying about “stages” gets in the way of our living in the moment and focusing on the quality of life of our loved one in the here-and-now, rather than what they are going to be like at a later “stage” of the process.

I am all for care partners knowing as much as they can about the medical aspects of Alzheimer’s disease and other forms of dementia, but not if it distracts them from seeing their loved one as a human being who is experiencing real suffering that cannot be relieved one bit by wrapping it in a label that defines and numbers it as a “stage.”
We know there are going to be changes as the disease progresses, but fixating on when they will come and what they will look like takes us out of the moment and distracts us from helping our loved ones through the process with compassion, empathy, and understanding.

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]

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Managing Expectations with dementia

As we hope for the decline of COVID, all of us are looking for opportunities to return to “normal,” which often includes travel. It is no different for care partners and their loved ones living with dementia, except for them traveling can present greater challenges.

Recently, I got a call from a member of one of my support groups who had just traveled to a northern state. She told me she thought everything was going well, until the day after her arrival when she experienced a complete emotional melt-down. She said she didn’t see it coming, and was confused that it had happened.

I asked about details of the trip and learned that they had departed Florida late in the day, which created a problem finding a room where they discovered they had left behind medications and dog food. Turns out, they were traveling not with a mature dog, but with a puppy! Their trip covered 1,200 miles over a four-day period, which included stopping to attend a funeral. In addition, our friend who solely manage this journey, including caring for her husband with dementia, is 80 years old!

Wow! This would have been a daunting and trouble-fraught task for a person half her age, and I was quite puzzled that she was puzzled that she had paid an emotional price.
I think the lesson here is that some of us may make assumptions that the “new normal” will be just a continuation of life as we knew it before COVID. Believing this, we think we can jump back into life as we knew it, and as we previously managed it.

I don’t think we can. First, as care partners we have all aged during a time of our lives when aging can bring on significant changes, including decline in our physical abilities. Second, our loved one with dementia has likely declined more than they would have over the same period without COVID. We have seen clear and frequent evidence of this!

I believe it is healthy and important for us to get back into the world, but I wonder if we should greatly moderate our expectations. We can do this by planning to take on less than we think we can handle. We can always ramp up our plans and responsibilities, but not fulfilling them can lead to the kind of emotional toll my friend experienced.

Find ways to ease back into a semblance of your previous life. Don’t make assumptions that you have your pre-COVID strengths and abilities. Pace yourself and watch closely for signs that you may be taking on too much.

As for travel, it has always been a serious challenge for families living with dementia. It is never easy. But there is plenty of good guidance out there. For example, check out the suggestions on Teepa Snow’s web site at https://teepasnow.com/?s=travel+planning.

And continue the support group connections you have made during COVID. Even when you travel, arrange your schedule to check in with the others who care about you. None of us should try to manage dementia alone.

Until next time remember: “We all deserve the Best”

Send your comments and stories to [email protected]

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Alzheimer’s and Violence; A common misconception!

Alzheimer’s and Violence; A common misconception

Often, when I am counseling a family that has just received a diagnosis of Alzheimer’s disease, someone will ask, “When will they become violent?”
This question reveals one of the most common and tragic misconceptions about the disease; that Alzheimer’s leads to violent behavior; that their person will become unpredictable and dangerous.
It is true that one of the results of Alzheimer’s – and many other forms of dementia – is personality change. But this change is not consistently toward violent behavior. If your person has a cooperative personality, this is likely to continue. If they have been a difficult and combative, dementia is not likely to cause them to improve! But Alzheimer’s does not invariably change a person toward unpleasant, confrontational, or violent behavior. Continue reading “Alzheimer’s and Violence; A common misconception!”

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Communicating with a person with dementia

Successful communication is a special challenge when we are caring for a loved one with dementia.
The best foundation for communication with a person with dementia is compassion. We must understand that they are coping with cognitive and sensory deficits, but we must also understand that they are still functional on an emotional level. Their “feelings” are very much intact, and how they respond to what we say depends to a great extent on how we make them feel. Continue reading “Communicating with a person with dementia”