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Disruption in the Dementia Care-System: You need guts and an innovative mindset!

In 2002 Eloy van Hal did something unconventional. Something no-one had dared to even dream of before. He founded a place where elderly residents can live a normal life, in a normal neighbourhood. A place where they have total freedom of movement, all the while living in a “nursing home”. Here’s the unconventional part: every resident at this “nursing home” has Alzheimer’s or Dementia.

It is Eloy’s mission to deinstitutionalize Dementia Care. Instead of “locking patients up” and taking away their independence, his approach has been to look at what people with dementia CAN do, and what is important to them.

His holistic and individual approach was first put to the test in 2002 when he founded the Hogeweyk: a nursing home in the shape of a Dementia Village in the Netherlands. The Hogeweyk looks just like any other neighbourhood. Complete with a supermarket, fountains, parks, squares and lots of opportunities for social interaction.

In 2021, the Hogeweyk is still a leading example in Dementia Care. World-wide there are 50 facilities inspired by, or more or less just like it. Eloy is no longer considered “the crazy Dutchman who wants to change the system”. He now travels all over the world with his company Be Advice, as a consultant/inspirator improving care and living situations for Dementia patients on a global scale.

The Medical Arts Health Research Group was fortunate enough to interview Eloy about his global efforts, how to successfully deinstitutionalize Dementia Care, and his aspirations for the future.

What are the most important success factors when setting up a “Dementia Village”?

“I believe the most important thing is to offer a place where people can live their life according to their own personal preference and lifestyle. A dementia care facility should offer this for all its residents, not a one-size-fits-all approach.

What goes wrong in traditional care is that it’s too institutionalized. The lives of the residents, who are referred to as patients in these settings, are led by the regulations of the organization rather than their own personal choices.

In 1993 we launched a pilot, based on common sense and a bit of research, there wasn’t much data available back then. We started this pilot in an existing, traditional nursing home. Our objective: “How to normalize care and support for people living with dementia”.

Based on this pilot we developed the Hogeweyk, the dementia friendly village. In turn, Be Advice developed a concept that can be applied to any dementia care facility in the world. This concept, the Be Advice paradigm consists of 7 pillars and 4 domains.

  1. Favourable surrounding
    Gives residents an environment they recognize and where they experience a sense of freedom. This includes everything from the design of the village, to nurse uniforms, to choice of language. For example, if all the nurses wear white uniforms this doesn’t contribute to normalizing but instead makes residents feel like they are at a hospital.
  2. Lifestyle
    We take into account that everyone is different and has different preferences. In a community like the Hogeweyk, people who share a lifestyle live together. This also includes caregivers being aware of the residents’ lifestyles.
  3. Health
    It’s important to discuss residents’ health choices with them. Do they want to add quality to their days or add days to their life? Other choices are medications they are willing to take, and dealing with side effects. For people living with dementia their medical choices are often made by their caregivers, a regulatory party or health care providers. We encourage people to continue to make their own decisions.
  4. Life’s pleasures & meaning of life
    People have to be able to do the things they enjoy and give their lives meaning. We create an environment where they stay involved in daily live. At Hogeweyk for example, some residents weekly visit the next-door Tennis Club.
  5. Formal & informal network
    In a dementia village, a support network is very important. The formal network refers to doctors, nurses and other Village staff. The Informal network refers to the resident’s family and friends. The informal network contributes to normalization and is an important part of the resident’s daily life.
  6. Organization
    Implementing the Hogeweyk concept calls for new leadership. Transformational leadership. Deinstitutionalizing traditional care system. You need guts to challenge the existing regulation. There are always ways to think differently. An example is that regulations might state:“It’s not possible for residents to cook together.”, due to hygiene reasons. We then look at what the purpose of the regulations are and how we can work around the regulation while still abiding by the purpose.
  7. Social inclusion & emancipation
    It’s very important to realize that people with dementia are people first. They should be included and participate in society. Increasing education and awareness on dementia will make people understand this better on a societal level. Dementia is just a disease but people who have this disease are a lot more than just patients.

We look at all these pillars from 4 domains: individual, home, society and organization & processes.

What are the difficulties when creating a Dementia Village?

The problem is that we don’t dare to discuss change. We are so stuck in our ways and this is the main problem. The stigma in our society on what health care should look like has become a roadblock for change. Applying the 7 pillars to our everyday society will create enormous benefits for people living with Dementia.

How has the Be Advice paradigm evolved since the development of the Hogeweyk?

The Hogeweyk was the first outcome of the Be Advice paradigm. Back in 2002 it was a very untraditional concept and many people thought we were completely insane. The concept has evolved over the last 20 years, and luckily our society and outlook on healthcare has also evolved.

If I were to set up the Hogeweyk today, I would develop different types of housing. Not just for people with dementia but also for other people, for example for families or students. This would create an intergenerational community, which is very important in the normalization aspect. 

What is your plan for the future? 

We want to create a movement that transforms the way we think about people with dementia, and that improves the living environment of people living with Dementia. I hope we can inspire societies, healthcare providers and governments with our Be Advice paradigm.

The Be Advice paradigm could be applied to different conditions too. Now, we are specialists in dementia care, and there is enough to do in dementia care. But of course, there are others who specialize in other conditions where this paradigm could also be applied, for example addiction care. This is something where we could form collaborations in the future to expand our reach in improving health care!

The Medical Arts Health Research Group is commited to improving Health. This includes improving the living conditions of people living with a disease or condition.

It’s our mission for 2022 to answer Eloy’s call for action.  We will be actively working on establishing Dementia Friendly Communities in Penticton, Kelowna, Kamloops and Vancouver!