Designing a multiculturally sensitive dementia care home

Marloes Pieper, 4006194maus.pieper@gmail.comThe Healthy Environment: User Centered Research (Spring 2015)Irene Cieraad Research Seminar AR3Ai155May 2015

Abstract

In this report I have focussed on the argumentations behind creating a multicultural sensitive dementia care centre in the centre of Rotterdam. With our ageing population it has become clear that the number of elderly suffering from dementia will increase and the need for appropriate healthcare facilities has become bigger. Within the multicultural complexion of the inhabitants of Rotterdam it only seems logical to also consider elderly from non-Dutch communities and creating an environment where they will feel welcome too. My research question is ‘What are the current obstacles non-western immigrant elderly experience when considering a traditional nursing home?’ with the sub-question ‘What would make them feel more welcome?’ By literature analysis, documentaries, interviews and a large case study I have found a series of obstacles; the limitation (or lack of) speaking Dutch, the cultural and religious responsibility children see in taken care of their parent, the taboo and unawareness of dementia characteristics, the lack of appropriate food, no possibility of practicing personal beliefs or religion and most of all; the heavy burden of accepting that you will not return to your home country and die somewhere that is not your home. From these points I have gathered conclusions for the requirement of care giving, the requirements of the building as well as for individual spaces. These stay on a practical level. Further I have made a deeper conclusion which talks about the change that needs to happen within the tight-knit communities where the immigrant elderly are living now, the need of showing respect and listening to your vulnerable user group and the subject of universal beauty; because in the end, a good space is a good space, no matter where you’re from.

Table of contents

Introduction

The problem

Design goals

Location

Demographics of location

Friction within statistics

Conclusion from statistics Research question

Research methods

Research findings

Demographics Language obstacle

Child-parent relationship

Taboo/uninformed

Food and cooking

Religion

Mindfulness

Case study

The Beukelaar, Rotterdam

Conclusions

Sensitive practicalities

Shared responsibility

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5

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7

9

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10

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12

13

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15

16

17

22

23

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Introduction

The word dementia finds its origin in Latin where it translates into madness, and is equivalent to dement; out of one’s mind.1

It suggests an absence of spirit, an absence of self even. Our spiritual self being is constructed somewhere in the midst of tangling brain. Four main aspects shape our spirits, namely thinking, judgement, feelings and memories. These perform and act with correlation and links so tightly knit, it is often hard to separate them. Together they create our awareness of the world around us and make sense of what our eyes see, our ears hear, our hands touch, our nose smells and our mouth tastes. But what happens when these four core values of our lives untwine, detach and disconnect into four separate strands which will never touch again?

All types of dementia are the consequence of damage to the brain cells. It covers as a general term the decline in mental abilities. The specific complications of the disease differ however per person. Just like any normal functioning brain has its own personality, every demented brain has its own characteristics. People with dementia might experience the same problems with practical tasks which require focus and sensitive approaches. Actions such as getting up, washing, getting dressed, using the bathroom, drinking and eating all belong to these practical tasks. However problems with psychological actions are much harder to notice and differ from person to person.2 The lacking ability to form a plot is one of these mental actions which are difficult for a demented person to complete. Our lives are made out of a sequence of little things happening all throughout the day, creating tiny stories with plots as they happen. Let’s say you’re going shopping; we get into a car, drive to the store, choose your products, pay for them and go home again. If this was to be experienced by a demented person it would be impossible to link the car ride, the store, the products and the payment to each other. They will keep asking themselves where the car is taking them, why there are so many people in the store, why and what product needs to be bought and why you have to pay for them.

Along with the inability to form a plot there is the loss of speech, language, and most commonly known, a loss of memory. I see these things as tools which we use to express ourselves. But when these tools slowly stop working it becomes even harder for a demented person to explain themselves – with failing tools trying to bring across an already unclear plot in their heads; no wonder the demented often find themselves overtaken by stress, confusion, anxiety and anger.

Having a partner, mother, father, who is suffering from a type of dementia can be an extremely difficult and painful situation. In fact, you could say that the disease, with the same intensity, but of a different form, also sickens the direct people around the sufferer. As I have seen from my own experience in the early stage of severe dementia, trying to talk to a demented family member is just a constant battle between two worlds that do not fit together anymore. It is a pain that never really goes away, saying goodbye after a visit leaves you damaged rather than satisfied. Yet, there must still be something there, although

1 www.dictionary.reference.com

2 Keizer, 2012

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3 Deckers, 2014

the name might suggest there is nothing, for we still love our demented. Even when all personality and the little characteristics that we thought made them who they were, have gone, we love them unconditionally.

From the 16.8 million Dutch people, 256.000 have diagnosed type of dementia, as we speak. 12.000 Of which are under the age of 65. By the end of 2040, half a million people will be diagnosed with dementia.3 These numbers show the relevance and acute action that has to be taken do we want to be ready for this group of extremely vulnerable elderly. Right now, the average number of years elderly live with dementia is 8 years. A large part of these years will be spent inside a dementia care facility. The quality of life within these facilities depends largely on the design decisions we make today.

A dementia care home, in my eyes, should be a local facility of which the surrounding elderly are already aware, long before there is even any mentioning of dementia. It should be a sensitive place where dementia patients live in small scale homes. In the ideal situation the still healthy elderly would already be using the home for different functions, such as a hobby club or community meetings. In this way both the location as well as the building will already be familiar and give a sense of safety and belonging. In order for the facility to address the local elderly in their needs an awareness of the local inhabitants is vital. If their needs are not being met the elderly will have no reason or even want to interact with the building. The facility should be a reflection of their lifestyle and culture. If any boundaries exist when elderly consider a care home, it should be made sure that these get taken away. Only then a multiculturally sensitive dementia home can be established where everyone feels welcomed and respected.

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Fig 1, 2, 3; The work of Jetske Visser. “In the work ” Forgotten memory” you step into the world of dementia. An invisible and hidden world is exposed. How look everyday things through the eyes of someone suffering from dementia. How do they experience their environment? What is a teapot if you don’t know what a teapot is?”

The problem

Design Goals

For my design process I have selected four main focus points which will be the core values of the dementia home I will design. They have derived from personal fascinations as well as the knowledge I have gained during the writing of the first report; ‘Salutogenesis for dementia patients; the potentials of a healing environment’ and especially from the second report; ‘An exploration of the possibilities for a combined community centre & dementia care facility’.4 They all tie in to the overall concept of creating a multiculturally sensitive dementia home.

The mingling of user groups is something to be encouraged, opposing the more traditional attitude towards demented elderly which meant locking them inside of a facility. By creating an interaction – which can be as simple as only seeing and watching – between user groups the demented are giving a more respectful position. Activities such as singing, cooking and gardening, if done together with children for example, could give the demented a sense of enjoyment. Trying to integrate functions which will attract users who would otherwise never be in contact with a demented person leads to the second focus point; raising awareness of dementia. If the dementia can be diagnosed early on the person who is suffering from it can still have a lot of say in what happens when the dementia gets severe. Also the family around the demented person can adjust to the situation much slower. If something were to happen at home when a demented is still living individually, a watchful neighbour would know how to calm the person and seek help. In order for everyone to feel free to call in the assistance of a dementia home, the facility needs to be welcoming all local cultures. This is the third point of focus. Non-native people, who do not understand or have different values than the Dutch, should be helped too. If the local inhabitants show diversity in culture the dementia home should as well. By using small scale living groups within the context of a larger dementia home, which is the fourth focus point, specific cultures can be highlighted. The group home will become like a new family with whom they share their living spaces.

Location

As I have stressed that the local social context and the location are so important to the dementia home, we must look into the area of my design location in detail. The location of the new to build dementia home is in the area of Rubroek which lays on the edge of the Kralingen-Crooswijk neighbourhood of Rotterdam.

Rubroek is an area where green lawns and large housing blocks dominate. Of all the different areas in Kralingen-Crooswijk, Rubroek lays closest to the city centre and borders with the Stadsdriehoek in the South along the Goudsesingel. Unlike the name suggests this is not a canal (anymore) but a busy street with a combination of pedestrians, bikes, cars and trams. In the North Rubroek is bordered by the Crooswijksesingel, which is still a water feature, and merges into the river Rotte which shapes the West border of Rubroek. The East border is made by the

4 Pieper, 2015

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Fig. 4: The design goals

Mingling of user groups

Local awareness of dementia

Small scale living in large scale building

All local cultures welcome

Boezemweg, which is off the same scale as the Goudsesingel.5 The area has four main streets of liveliness, the Vondelweg, the Admiraal de Ruyterweg, the Lombardkade and the Goudsesingel. Except for the Admiraal de Ruyterweg, which comes to an end right in front of the design location, there are no busy roads surrounding the site. Especially the border in the North, along the Crooswijksesingel is one of beauty and calmness. Concerning the urban relation one could state that on the North edge the site has a private and quiet atmosphere, while in the South it is more public and hectic.

When Rotterdam was bombed in the Second World War many neighbourhoods around the city centre had to be completely rebuilt. But since only the South of Rubroek was bombed; only this part got replaced in years directly following the bombing, in 1942 to 1955. The Northern part, where the design location is, housed mainly workers from the Jamin candy factory. When the factory moved to the outskirts of the city in 1970, many people lost their jobs or moved away, letting the area fall into despair. Quickly the city management demolished the pre-war housing and by 1978 a new neighbourhood was created.6 This consisted mainly of large social housing complexes, which make up for 50% of today’s homes in Rubroek.7

Besides housing the Rubroek area holds quite a number of public functions that can be useful to a dementia home. Along the busier streets, the apartment blocks have small shops and businesses on the ground floor. These are of great variety, from flower shops to nail salons. Directly on the site there is even an Albert Heijn. There are a large number of schools nearby, ranging from kindergarten to high schools, with which a relationship might be beneficial. As well as several healthcare functions such as a physiotherapist and a doctor’s office.

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Fig. 5: The location

5, 6 Municipality, 2015

7 Municipality, 2014

Demographics of location

When looking at the demographics of Rubroek it is important to also incorporate the figures of the Oud-Crooswijk area. This is situated just above Rubroek, but since the design location sits to the very North edge of Rubroek, it will be right in the middle of Rubroek and Oud-Crooswijk.

As can be seen from the illustrated graphs, the population of Rubroek and Oud-Crooswijk seem to be fairly similar to the overall population of Rotterdam. The number of elderly is the same, just as the number of western immigrants8 and the percentage of single households is only slightly more. However, it is with the non-western immigrants, the native population and the social housing percentages that we see bigger differences. These factors also happen to be the most important ones to consider when talking about the local social context.The number of the native Dutch people in Rubroek is 48%

7

84%Oud-Crooswijk

Rotterdam

Population 65+

15%

15%

14%

Rubroek

Oud-Crooswijk

Rotterdam

Western immigrants

12%

12%

10%

Rubroek

Oud-Crooswijk

Rotterdam

Single household

48%

56%

49%

Rubroek

Oud-Crooswijk

Rotterdam

Non-western immigrants

37%

40%

56%

Rubroek

Oud-Crooswijk34%Oud-Crooswijk

Rotterdam

Native population

51%

48%Rubroek

Rotterdam

Social housing

46%

51%Rubroek

8 With the term ‘immigrant’ I refer to a person living in the Netherlands but born in a foreign country and who has at least one parent also born abroad. The ‘country of origin’ is the country in which that person is born.

Fig. 6. Municipality, 2015 & 2014

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combined with a much lower 34% in Oud-Crooswijk. This means half of the people living here have a different cultural background. Of these different cultures, 40% of the people are of a non-western origin in Rubroek plus a 56% of people having a non-western background in Oud-Crooswijk. The social housing percentage in Oud-Crooswijk is much higher than in Rubroek. This is due to the The Jamin factory and the Heineken brewery moving away and leaving a much bigger part of the city open in Oud-Crooswijk compared to Rubroek (which was mainly housing for the workers). This gave the city municipality a lot more freedom to build larger and more social housing complexes in Oud-Crooswijk rather than Rubroek.

Combining the four focus points I have established for my design with the demographic information, does not seem to give any contradicting issues. The area is rich in social mixture, cultures and public functions, creating a logical selection of different user groups to integrate in the facility. However quite soon after I had concluded this was going to be a multicultural open dementia home, I stumbled across some figures which were the least to say, troubling.

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Friction within statistics

As we have such a rapidly aging population a lot of time and effort is being put into researching what effect this will have on our healthcare system. Several different issues are being looked at. One of which for example focusses on how the younger generation, who will be greatly outnumbered, will be able to financially support the large group of elderly. Another point is the aging and wellbeing of elderly within immigrant communities, how they differ from native Dutch elderly for example. Looking at the local context and the ambition I have for my building, the focus on immigrant communities is vital for my personal research. In 2011, the Social and Cultural Planning Office have conducted a national research into the wellbeing of immigrant elderly.9 They concluded several statistics concerning the health, doctor’s visits and usage of healthcare facilities. Comparing these to the same percentages for native Dutch elderly gives some surprising results;

70% of non-western immigrant elderly visit

doctor regularly

20% of native elderly have serious health problems

55% of native elderly visit doctor regularly

40% of non-western immigrant elderly have serious health problems

9 Draak, 2011

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1% - 3% of non-western immigrant elderly lives in a nursing home

20% of native elderly lives in a nursing home

In the group of immigrant elderly the health problems seem to be much more severe than the native elderly. As a result they visit a local doctor quiet often. Yet only a tiny 1% to 3% makes use of healthcare facilities or supported care at home, against 20% of the Dutch elderly.

Research question

Looking at these statistics there must be something, or more than one thing, preventing these immigrant elderly from using the healthcare (both in facilities as well as at home) possibilities available. Since the desire of my dementia home is to reflect its local context, trying to include these immigrant elderly will be a large part of the design solution. My research question is therefore formulated as;

What are the current obstacles non-western immigrant elderly experience when considering a ‘traditional’ nursing home?

And what would make them feel more welcome?’

Fig. 7. Draak 2011

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Research methods

For this research I have used several different methods. I have read a collection of articles which focus on culturally sensitive dementia care. Together with more demographic focused research reports and other graduation/phd reports this made for a good solid base of knowledge. For the more in-depth experiences I have watched a series of documentaries and read a non-fiction novel by Mohammed Benzakour. It is called Yemma and tells the story of his own mother in a Dutch elderly care home. It is quite hard to imagine that this is a non-fiction story. Mohammed his mother has lost her speech and is paralyzed in one half of her body due to a stroke. She is completely care-dependable and without her son as translator, she would be lost in the world of hospital bureaucracy. It is a constant battle between culture differences and human dignity.

For more in-depth knowledge I have also interviewed two professionals; Roelf Steenhuis and Bea Sitaram. Roelf Steenhuis is an architect and has designed an apartment block for care-supported living in the South of Rotterdam. This apartment block has been especially designed for Turkish elderly. The group of Turkish elderly used to live separately all over the city of Rotterdam. Independently they approached a senior housing corporation to ask whether a specialized building could be possible for them. Together with Roelf they developed a design which takes into account some specific cultural values. The interior is decorated with some beautiful local Turkish materials, Turkish tiles and furniture pieces that the elderly can refer too. The homes have closed kitchens, large amounts of storage space and a little private outside space on a patio or in a garden. While speaking with him we talked about the communication with the elderly, how standardized building methods can be adapted to different cultures and the importance of making a flexible space. We also discussed the arguments the Turkish elderly had for not wanting to do to an already existing facility, which will be explained a little later on.

Bea Sitaram is the team manager of the Laurens care facility, the Beukelaar. When I got to the location she first showed me around the facility and afterwards I interviewed her. We discussed several practical building issues but for example also spoke about the difficulties of reaching a tight knit, inward facing, community. Bea is a passionate and hard working woman who has made it her personal goal to bring back all forgotten and hidden away elderly into the world. The Beukelaar is quiet unique in its culture-specific care homes and programmes, which is why I have investigated a little further and treated it as a case study. The case study can be found on page 17.

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Research findings

While reading and learning about the obstacles non-western immigrants experience towards care facilities it became quite clear that the reasons differ from one culture to the other. Thus, before any details of these obstacles can be given first it must become clear who we’re talking about.

Demographics

The direct surrounding non-western immigrant group of the Rubroek consists basically of five large communities. The smallest community is that of the Cape Verdeans who make up for 7.5%. The second group is Antillean with 8%. The Turkish community is third with 13.5%, followed by the Moroccan with 18%. The biggest group of non-western immigrants are of a Surinamese origin with 24.5%.

Because of the way the research question is formulated there is a freedom in naming the specific problems that occur when non-western immigrant elderly consider a traditional care home. The difficulties might be experienced before the search of an elderly home, during the search or while staying in one. To eliminate this difference the problems have been categorized by themes and will be discussed linked to one, two or more separate cultures.

Cape Verdean7.5%

Turkish13.5%

Moroccan18%

Antillian8%

Surinamese24.5%

Others28.5%

Fig. 8. Municipality, 2013

Language and speech

One of the most prominent issues that the Turkish and Moroccan cultures run into is the Dutch language. All of the other cultures have some familiarity with the language; the Surinamese even speak Dutch themselves, and thus find themselves informed enough to be aware of the elderly care facilities and possibilities. However many Moroccan elderly speak only the dialect of Berder (or Amazigh), which is a verbal language only; it has no official script.10 To officially diagnose an elder with dementia a logopedic test must be completed which is based on reading, speaking and writing Dutch. Naturally this causes some problems if there is no understanding of the language. Without an officially stated diagnosis the elderly have no right to professional dementia care.11 Learning a new language would be impossible because, besides their age and possible dementia, 90% of the Turkish and Moroccan elderly women have never had any education beyond primary school. With the men this percentage comes to 80%.12

Their children are often needed as translators to help them through formalities and tests. As Roelf Steenhuis explained, in his conversations with the Turkish elderly to design their new homes, it became quite clear that the children were vital part in the process. He never spoke directly to any of the women, who were nevertheless always present, but always through their children.13 However, even if the Dutch information is translated literally, the meaning of the words might still be different in other languages. This makes it extremely hard to communicate, both from the perspective of the professional as well as from the (possible) patient. General information for the awareness of dementia doesn’t reach the Turkish and Moroccan elderly either because of the language barrier.

Child-parent relationship

Being a translator to your parent is really one of the more simple ways of helping them. In the Turkish, Moroccan and Surinamese cultures the children take on a lot more responsibility. The elderly in these communities receive great amounts of informal help, often from their direct surroundings. Naturally from their families, but also from the neighbours, the Mullah or Priest, the local baker, really anybody they have daily contact with. The help that they receive covers cleaning and tidying of the household, controlling the administration, washing and bathing and often also the use of medicine or other medical related issues.14 This might seem like a social and appreciative aspect of family bonds yet the reasons for doing this lay heavy on the shoulders of, especially, the children. It is deeply rooted into the Turkish, Moroccan and Surinamese cultures that the children should take care of their parents just as their parents have cared for them. The parents should live in with the children and be a part of the family live.15 In the Turkish language you speak of Bakim, which literally translates as ‘taking care of ’. Unlike in the English (or Dutch) language this phrase is directly linked to a family relation. The concept of taking care of somebody cannot be seen separate from family. This shows how embedded the expectancy of the child to take care of the parent is.16 As long as the parent is ageing healthy and does not have any major problems this would work quiet well. However, the professional medical help

13

10 Goudsmit, 2011

11 Goudsmit, 2011, Burger, 2008

12 Burger, 2008

13 Steenhuis, 2015

14 Burger, 2008, Versprille, 2012

15 Hoffer, 2005, Versprille, 2012

16 NTR, 2014

a demented elderly needs cannot possibly be given by a non-professional caretaker. In the documentary by the NRT, a son, Hahsan, speaks of his mother who lived with his family in his home. Because both Hahsan and his wife worked fulltime jobs to take care of their four sons, his mother would be alone all day long. As there had been accidents of his mother walking into other people’s homes and having very aggressive behaviour, they had to keep all of the doors locked so she would not be able to get out. Mohammed explains how he was constantly divided by the cultural pressure of the community to take care of his mother himself and the possibility of giving her a dignified place where she would be able to receive proper care and not be locked in a room.17 This example seems to be a reflection of the situation with the traditional first generation elderly and their second generation children who have adapted a more Western lifestyle. The shame of not being able to take care of your own parent makes the children do the impossible causing great amounts of stress and depression.

Taboos

The pressure of the community for the inward-facing caretaking comes from the taboo and shame that still lies on dementia. It is often not even seen as an official disease but rather a set of complications that just occur as you get older. This is most dominant in the Turkish and Moroccan cultures.18 As family problems or illnesses are not discussed outside of the direct relations many people are unaware that their situation might be a lot more common than they presume. The children juggling their life and caretaking at the same time, in their own place, do not seek help or advice. This is because they think that the care given by a professional can never beat the care a close family member gives. The professionals in an elderly care home are seen as authorities, people who will tell you what to do and feel no compassion towards their parent.19 There have been some cases, as Bea Sitaram describes out of experience, where demented elderly would be suffering from depressions, anxiety or more physical problems unknown to staff. All the while the children would know but they never mentioned it to staff. Bea even said some of the children tried to hide it. The staff would eventually find out much later, when the complications were already so advanced they were very difficult to treat.20 Another big boundary that the professional caretaker experiences versus the family care taker is physical intimacy. The washing of the body within the Islamic culture has very specific values; these are difficult for staff to follow when they have to be efficient and work by rules they are given which do not take these values into account.21 In the elderly care homes that now exist the separation of men and women is not taken into account either which can be experienced as disrespectful and rude. In the Turkish and Moroccan societies specific activities are to be done only by women, or only by men.22 Feeling at home and comfortable in a traditional elderly care home can be very difficult for these elderly when there is no place for their morals and ethics.

14

17 NTR, 2014

18 Baas, 2004, Yerden, 2013

19 Baas, 2004, Hoffer, 2005

20 Sitaram, 2015

21 Burger, 2008

22 NCRV, 20014

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Food and eating

Something that might sound like a small issue but is actually found to be a big barrier across all cultures is the lack of culture specific food in current elderly care homes. There is often no possibility of having Kosher, Halal or other detailed diets besides vegetarian. Compared to traditional dishes the non-western immigrants are used to, the food is of a low variety and the use of spices limited.23 When the tastes senses become numb, it is especially spices that can trigger them again. Mohammed Benzakour describes in his book Yemma the lack of possibilities for bringing homemade food. His mother is not very fond of the dry potatoes and carrots she is given every day. Her weight is declining and the doctors want to put her on tube feeding. Instead Mohammed cooks some of his favourite childhood dishes and brings it to the care centre where his mother lives. Soon after they start eating, his mother clearly enjoying the familiar tastes, the chef of the restaurant pays them a visit. He explains that homemade food is not welcome in the restaurant. Mohammed takes his mother outside to the garden and they continue eating there. Unfortunately the Dutch weather is very unpredictable so as the weather gets cooler they try to find a space inside of the facility where they can eat. His mother’s room is too small to sit with more than one person; they end up in a cloakroom where the Christmas decorations are stored.24

Across all cultures the act of having a large meal together with the family is equally important. Yet, family members are often restricted to visiting hours, which are not during lunch or dinner. The family members cannot spontaneously walk in and join; this takes a great deal of joy and pleasure out of eating for the elderly.25 When Roelf Steenhuis came to discussing the kitchens of the apartments with the Turkish elderly, they signified the importance of having a large cooking space with a lot more storage compared to traditional Dutch kitchens. Ingredients are bought in bags of 5 kilograms, not 500 grams.26 Besides, the words restaurant or café do not always indicate the informative and pleasurable associations that the western society might have with these words. A café is directly linked to alcohol, something unacceptable in many cultures and religions.

Religion

The religions across the different cultures vary greatly but can be seen as categorized as Catholic, Islamic, Jewish and Hindu. Current elderly homes often have a room for silence in the form of an off-white antonymous space, lacking any form of expression. But in all religions the use of special artefacts and objects takes on a big role. Not having the opportunity to see and feel these objects, these spaces mean nothing to demented elderly. Next to a place for prayer there is also the lack of a space for ritual washing.27 Festivities and rituals that have been practiced all their lives, are not integrated into the life of demented elderly at a care home. While these special days or periods are perfect for familiarisation and might give a sense of awareness. Simple habits like taking the off shoes when entering a home are often not possible in an efficient workflow of staff. Even though, this might be very offensive in some religions.28

23 Baas, 2004

24 Benzakour, 2013

25 Baas, 2004

26 Steenhuis, 2015, Genderen, 2012

27 Baas, 2004, Hoffer, 2005

28 Yerden, 2013

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Religion overall is often a last-resort for demented patients. It is the one thing that has never changed over the whole of their lifetime and rooted into their habits, body and mind. A god is often a last hope in despair.

Mindfulness

Across all cultures there are some common mental issues all the elderly and their families seem to deal with. Besides dementia, many elderly suffer from depression. If these two are infected at the same time it is really difficult to diagnose and the depression is often associated as one with the dementia. However, the treatment for depression is a lot different and could benefit both the elder as well as the family a great deal.29 Next to this there is the increased chance the immigrant elderly have at getting dementia. Often because of the hard physical labour the immigrants have done their physical wellbeing ages much quicker compared to native Dutch elderly. If they reach the age of 55 they are often considered ‘old’ and expected to do things old people do. This means no sports, no job, creating a great lack of activity for elderly immigrants. This causes obesity and a high blood pressure which are both causes of dementia.30

In almost all the countries of origins an elderly care home is for those who have no money or no family. It is a shame to be dependable on one and marks a lonely and empty end of your life. This association seems very hard to let go, creating a great barrier.

The biggest and maybe most difficult problem to solve however is one which is only in peoples’ mind. Almost all of the first generation non-western immigrants came to the Netherlands for work or studies. All along the plan has been to go back to the country of origin once enough money was made or the studies were complete.31 Deciding to seek for help and find a care home here means that this is never going to happen. The elderly have always thought that they would return home and finish living their life there. The acceptation of growing old in a country that is not your own, and possibly dying here is extremely difficult for them.

29 Hoffer, 2005

30 Versprille, 2012

31 Burger, 2008, Yerden, 2013, Hoffer, 2005

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Case Study; The Beukelaar

At the edge of the Rotterdam neighbourhood Hillesluis the dementia care centre the Beukelaar forms the completion of an intimate urban square. The other edges are defined by a primary school, an elderly housing complex and the largest mosque in the whole of the Netherlands, the Essalam Mosque. The Beukelaar is situated on the end corners of the Beukelaarsstraat and the Varkenoordsweg. This is where the two streets come together to form the end of a triangular urban pattern, giving the complex its angled shape. The facility is run, both care and business-wise, by the Laurens healthcare organization.

Location

Unlike the Northern neighbourhoods of Rotterdam, including my location Rubroek, the Southern neighbourhoods almost all find their origin in the Rotterdam harbours. Hillesluis in which the Beukelaar is located, is one of these. Just after the 20th century had begun, the harbours were expanding and in need of a large workforce. The industrial revolution created many jobs and as a consequence the need of large new neighbourhoods, one of which was Hillesluis. The houses were built fast, cheap and relatively small which has caused some problems with the modernisation. Like many other places the once bustling area lost its charm in the mid-eighties and has only very recently recovered. Many financial injections and co-operations of the city council were needed to bring the problematic areas back to life.

With a total of 12.000 inhabitants the area has a high density which can be seen by the narrow streets and relatively high houses, filled with 3 to 4 apartments. In Hillesluis is the largest part of the population consists of children and elderly. The largest part of the population has a non-western background which, together with the large number of children, makes for a lively multicultural neighbourhood.

Founding

For years the Laurens healthcare group had been active within the neighbourhood of Hillesluis, just as in almost every other neighbourhood in Rotterdam. They noticed that although most native Dutch elderly were choosing to continue their lives within an elderly care centre when this became impossible individually, most non-native elderly did not. This was especially true for the elderly suffering from dementia. From their research they distinguished several reasons for this phenomenon, all of which are similar to or overlap with my own findings. First and foremost they concluded an unawareness of the possibilities and facilities that were already available. The language difference and the inward facing community around non-native elderly are just two of the causes. The taboos that still lay on the hardships that come with becoming older also play a large part. Instead of naming the illness, dementia, and therefore accepting its seriousness, family tends to refer to a more general ‘forgetfulness’ and ‘confusion’. These problems are not considered

Fig. 9, 10: The Beukelaar

severe enough to terminate the individual living. The relevance of finding out information of the different healthcare facilities and possibilities then becomes secondary. The Laurens team also found that the role of the children was much more dominant in the care taking process with non-native elderly compared to native. The act of choosing for an elderly care centre and leaving your parent there is seen as disrespectful. But, especially for woman, the combination of a fulltime job and taking care of your elder becomes increasingly difficult. No matter how important the involvement of family is, there is always a need for professional care, especially when severity of dementia increases. Together with Alzheimer Nederland, SPIOR (Stichting Platform Islamitische Organisaties Rotterdam) and NOOM (Netwerk van Organisaties van Oudere Migranten) the Laurens organization set up an informative network aiming to increase the awareness for dementia in Rotterdam. During these meetings it became obvious that a special place for culturally focused dementia care was needed. The Beukelaar was opened in April of 2013 as a result of this.

Different cultures

The facility is based on 6 small-living groups. Each of the groups consists of 8 elderly who share a living room and kitchen. They all have their own individual rooms with private bathrooms. Each group home has an interior and lifestyle focused on a specific culture. There are 2 Dutch groups, an Afro-Caribbean, a Hindu, a Turkish and a Moroccan home. During the design process the architect and the Laurens team often discussed the specific life and care demands of the different cultures. The final placement of bathrooms and kitchens is based upon the traditions and values of the specific cultures – yet also leave room to use the spaces for possible different functions in the future. Next to the group homes the Beukelaar also has six apartments on offer for elderly who only need help occasionally. These are first offered to the partners of the demented elderly who are placed in the Beukelaar, after which they fall under the regular elderly living organization of Woonstad.

All caretakers have received special training in order to be able to understand and respect the different rituals of their patients. Plus, since speech and understanding of the Dutch language (if spoken at all) decreases as the dementia increases, all professional caretakers speak the language of their patients and are familiar with their habits.

Kitchens

The kitchens play a large role in the life of the elderly at the Beukelaar. They are specifically designed in an open and accessible way to make sure even elderly in wheelchairs can access the space. The senses become more numb as dementia increase. The kitchen is thus the perfect place to focus on smell, touch, sight and especially taste. Even the elderly who do not participate in the kitchen space itself experience the sight and smell from quite far away. The familiar smell of traditional dishes is encouraged in order to increase the feeling of home, safety and awareness. The professional care takers also take on the role as

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Fig. 11, 12, 13: The Moroccan living room

cook. At the Beukelaar the families of the demented elderly are encouraged to cook at the facility and share the meal there with the group home.

Family

The direct family receives a special key which gives them access to the home of their elder. There are no special visiting hours, or even a reception desk. You can just walk in and use the common spaces free of any restrictions. Sleepovers, birthdays or special rituals can be enjoyed together at the facility. There is one room designated for prayer and religious celebrations. All the cultures share this space and are offered a specific corner where they can place their own artefacts or objects. It includes a tiny space for ritualistic bathing and washing.

Visuals

From the outside the building blends in with the structure of the other buildings. The architectural language does not resemble a healthcare institution. Instead it is made to look like the continuation of the neighbouring housing block. Only in the railing, on the roof and along the French balconies, a special type of detailing is shown to relate to the more decorative nature of other cultures.

The interior however is adapted fully to the different cultures. In all of the common areas, highly decorative furniture and fabrics are used. All of the staff area shows mainstream clinical materials and colours (white, light wood, shiny and metallic finishes) but every group home interior has its own concept. Each culture was specifically analysed and a selection of furniture and fabrics were made to decorate the living room. All the living rooms also include a solid shelving system which is made out of different sized open compartments. The elderly of the specific home are asked to contribute an item to the shelving system. In such a way a culturally rich and personal collection of objects is created in every room. Next to this space the elderly also have a little niche right next to their bedroom’s door where personal items can be placed. This is encouraged for recognizing their room. The staff also uses these items for a moment of distraction when patients are lost in their own confusion or show signs of anger and aggression. Having the focus on personal items calms them down and gives them a feeling of safety.

Comments

Aiding to the needs of the direct local community surrounding the facility, the Beukelaar has definitely proved itself to be a welcome addition to the healthcare facilities already there. It has made quite an impact on the life and awareness of dementia patients and their families, especially those from non-native cultures. The biggest achievement is the relationship with the Essalam mosque which has become very solid. By having such a direct link to the otherwise ‘closed’ community; many people are quickly reached and find themselves informed of the possibilities for elderly care. The mosque also plays a large role in breaking the taboos and child-care expectations that still live within the

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Fig. 14, 15: The individual rooms

more traditional families.

However during my visits and conversations with the staff several points came to my attention which seems to be troubling. Firstly, not all the places at the facility are filled. There are currently only 5 elderly in the Moroccan home and 7 in the Turkish, from the available 8. As derived from my own research, these two immigrant culture groups are the hardest to reach. At the same time a waiting list has formed for the places in the Dutch and Afro-Caribbean group homes. The Laurens organization has recently begun to look into the possibilities of placement across cultures. Dutch elderly in a Moroccan home for example. But obviously there are some issues with this type of placement which will first need to be solved. The facility can only be completely economically feasible if all places in the homes are filled thus the relationship with the mosque will become of increased importance. The focus in the coming months will be on raising awareness and informative meetings with different communities and families in the mosque.

What struck me most during my visit is the lack of outdoor space for the demented elderly. The plot is quite narrow and in order to create the best possible indoor space, it had to be fully built. Only the ground floor group homes have a small, completely paved, outdoor patio area. The group homes on the second, third and fourth floor have a narrow balcony running along their facades. Both the patio and the balconies are not wheelchair accessible, meaning patients will never be able to go there by themselves. The Beukelaar has chosen clearly to use the kitchen as central focus point for triggering senses, but has failed to see a garden space can do the same.

As for the interior, there has been a large effort made to decorate the rooms according to the lifestyles of different cultures. However, since this has stayed limited to detachable furniture and fabrics I feel there is still a long way to go. The architecture of the interior could have played a much larger role in making the spaces feel culture appropriate. Now all of the living rooms, bedrooms and common rooms share a similar light clinical atmosphere which is really only appropriate in the interior of the Dutch homes. Just a small change such as a painted wall or the usage of wallpaper would have done a great deal for the other cultures. Just like the other spaces, except for the living rooms, the interior of the individual bedrooms show no signs of appropriate cultural living. Family of the elderly are encouraged to decorate the room with personal belongings. If and when this however cannot be completed by the family the room stays empty, with the exception of an extremely large and clinical looking bed.

The hallways which run along the bedrooms are long, straight and have no focus point at the end or beginning. The orientation for demented elderly is therefore quite difficult. The staff explained that they prefer to keep the door to the living room closed so patients do not try to go back to their own rooms and find themselves mistakenly in some else’s space. This is another major negative aspect; patients are not encouraged to wander and walk freely through the facility.

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The kitchen, which so purposefully has been left completely open to the living spaces, can also be the cause of some trouble with the elderly. Many of the food smells will linger around the living rooms for quite some time and attach to the clothing of the elderly and staff. Staff working in more than one group home find it unpleasant to still have the food smells around them when they are somewhere else. Family tend to find it unhygienic if they arrive and their parent still smells like what they had for dinner yesterday. Even the bedrooms of the elderly have to have their doors closed when somebody is cooking.

Despite the many efforts the facility has made towards creating a multicultural dementia centre there still seems to be some problems; both in architectural solutions as well as in the connection with the local communities. Naturally the financial feasibility and standardized building methods have played a large role in the anonymous architecture. Yet, the expression of the building (and interior) could be of a bigger importance for the community to accept the facility as a form of help than we may think.

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Case study references:

Two visits to location the Beukelaar on 10.05.2015 and 15.05.2015

Laurens Zorg, Factsheet De Beukelaar

Sitaram, B., Interviewed by Marloes Pieper, Information about the Beukelaar and culture specific care. Rotterdam; 10-05-2015

Internet sources:

http://www.rotterdam.nl/hillesluis (19.05.2015)http://www.wam-architecten.nl/projecten/01160_Essalam_Moskee.php (19.05.2015)

Fig. 16: The floorplan , with in the very front the outside space visible. The green is common areas.

Conclusions

The ambition is to create a multiculturally sensitive dementia home where everyone feels welcome and is respected. Creating this situation however, will be a lot harder than I had previously imagined. By focussing on the local context of the site many new cultures have come forward which will have to be integrated in the facility. The boundaries experienced as non-western immigrant elderly consider a traditional nursing home are varied. Many even differ from one culture to the other. They can be grouped however under six themes; the limitation (or lack of) speaking Dutch, the cultural and religious responsibility children see in taken care of their parent, the taboo and unawareness of dementia characteristics, the lack of appropriate food, no possibility of practicing personal beliefs or religions and most of all; the heavy burden of accepting that you will not be returning to your home country and possibly dying somewhere that is not your home. These are delicate matters within the delicate minds of demented elderly. This vulnerability of the user group really demands the facility and building to be sensitive.

Sensitive practicalities

The practical sensitivity of the place depends on three main aspects, the caregiving, the building and the individual’s space. For the professional caregiver it has come forward that speaking the language of the demented elderly is crucial. Not being able to clearly communicate with someone who might be of a different culture than you is bound to deliver hurtful miscommunications that were never intended. Also, sending the professional caretakers into the neighbourhood and visiting elderly at home could remove the barrier that the elderly or family has towards approaching a care home on their own. The first contact can be made inside the safety of their own environment. Once inside of the facility the care should symbolize the lifestyle of the different cultures on aspects such as food, music and festivities. This can easily be applied when small scale living groups are used within the dementia home. The home should also be open to family members at all times. Spontaneous visits and joining of lunch or dinner is then possible. The family will still contribute to the caregiving but leave the professional to the more difficult tasks. In this way they will not feel as if they are leaving their parent behind.

The architecture of the building should in itself represent an open and welcoming place. It might be blended in with the surrounding buildings, making it look less institutional, yet the architecture could also play a big role in raising awareness. By exaggerating the building’s language it will be noticed by more people and take in a dominant orientation point in the neighbourhood. By combining the dementia home with another function like a community centre the architecture could focus on this as well. Adding more public functions makes it easier to mingle with the user groups as well as raise awareness for dementia. Organizing day-care for elderly who still live at home, especially for the non-western elderly, would greatly increase their physical activity and social wellbeing. Adding a Hammam or a library would also grow the public’s interest in the facility.

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The building should by any means give space to the different religions. This includes ritualistic washing facilities and space for religious objects and artefacts. These could also be used as part of the community centre, making them public. The interior of the dementia home should reflect the different cultures present, yet also the local heritage. Rotterdam has had quite a turbulent history of which the location has gotten its fair share. The goal is not to fool the demented elderly that they are ‘at home’ but rather show that their lifestyle is respected within the dementia home. The interior decoration can be focussed on the traditional decoration from the particular cultures, including use of walls, transparency, placement of rooms, but also simple pieces of furniture.

Inside of the small scale dementia homes it is important to create different spaces of privacy. In this way visitors can choose where and how they want to structure their visit. There should be enough space within the private rooms of the elderly to sit with at least four people. In the shared living space all the elderly of that particular home should be able to sit comfortable together with at least one visitor. Creating a space with separated areas, but leaving them connected, ensures that the demented patients will not be confused or lost. The kitchen in the home should be a flexible space which can be both open to the living space as well as closed. Also, in the shared living spaces there should be the possibility to separate the men from the women if wanted. This can be as simple as a curtain or folding wall.

Sharing responsibility

All these practical changes aside, the building’s flexibility must still be guaranteed. When in the future the second generation of immigrant elderly will be dependable on a care centre there will be fewer boundaries and complications. They are more familiar with the Western lifestyle, often speak fluent Dutch and their children might feel less pressure to be the only caregiver. There is however a change needed from within these culture communities. The initiative to erase the taboo that still lies on dementia and the use of professional care must come from the inside. The dementia home should take the responsibility to provide a place and space for this to happen. For example in the shape of culture specific day-care, information sessions and home visits by professionals. It is important to prevent the creation of a Disneyland environment where the interior tries to imitate the origin of the elderly. Instead the interior should reflect the respect the different cultures deserve. By referencing to their traditional lifestyles and incorporating them in a modern way, it shows that they’re being listened to. Unfortunately there is not one magic element to apply to make everyone feel welcome in the dementia home. It is a combination of feeling valued and being inside a space that is not autonomous but speaks to you as individual. The vulnerability of the user group demands a sensitive approach to creating a beautiful space. Because in the end, a well-designed space should make my grandmother feel content, safe and comfortable, and any other grandmother out there, no matter where they are from.

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References

Baas, N. 2004 Naar een Cultuurspecifiek Dementie-Aanbod. Tilburg: Brabants Ondersteuningsinstituut Zorg (BOZ) in samenwerking met Palet, steunpunt voor multiculturele ontwikkeling in Noord-Brabant.

Benzakour, M. 2013 Yemma: Het Stilleven van een Marokkaanse Moeder. Rotterdam: Uitgeverij De Geus

Burger, I. 2008 “Zijn de care-voorzieningen klaar voor de groeiende groep Turkse en Marokkaanse ouderen in Den Haag?” Epidemiologisch Bulletin 43, 2/3; 13-29

Deckers, K., 2014 Nieuwe Ontwikkelingen in Dementie-onderzoek, Theorie en Praktijk. Maastricht: Maastricht University

Draak, M. den & Klerk, M. de, 2011 Oudere Migranten: Kennis en Kennislacunes. Den Haag: Sociaal en Cultureel Planbureau

Genderen, C. van 2012 “Huize Orchidee voor Turken.” AD Rotterdam 70, 62: 13

Goudsmit, M., J.L. Parlevliet, J.P.C.M. van Campen & B. Schmand 2011 “Dementiediagnostiek bij oudere migranten op de geheugenpolikliniek: obstakels en oplossingen.” Tijdschrift Gerontologie Geriatrie 46, 1; 204 - 214

Hoffer, C. 2005 “Allochtone ouderen: De onverwachte oude dag in Nederland.” Onzichtbaar-Onmisbaar: Ouderen in Rotterdam, Essays 4, 1; 7-30

Keizer, B., 2012 “Waar blijft de ziel?” HUMAN Duivelse Dilemma’s

Municipality of Rotterdam, 2015 Wijkprofiel Rubroek. Rotterdam

Municipality of Rotterdam, 2014 Wonen in Rubroek. Rotterdam

Municipality of Rotterdam, 2013 Bevolking van Rubroek. Rotterdam

Pieper, M., 2015 Salutogenesis for dementia patients; the potentials of a healing environment & An exploration of the possibilities for a combined community centre and dementia care facility. Unpublished reports: TU Delft

Versprille, H. 2012 “Tajine en couscous voor dementerende.” Het Parool 75, 155; 8-9

Yerden, I. 2013 Tradities in de knel: Zorgverwachtingen en zorgpraktijk bij Turkse ouderen en hun kinderen in

Images

All retrieved/made on 20.05.2015

Figures 1,2,3:Jetske Visserhttp://jetskevisser.nl/Forgotten-memory/

Figure 4:Marloes Pieper

Figure 5:Marloes Pieper

Figure 6:Marloes Pieper

Figure 7:Marloes Pieper

Figure 8:Marloes Pieper

Figure 9, 10:KOW, http://www.kow.nl/?project=de-beukelaar-rotterdam

Figure 11, 12, 13:Laurens Beukelaar,https://www.laurens.nl/voor-klanten/locaties/de-beukelaar

Figure 14, 15: KOW,http://www.kow.nl/?project=de-beukelaar-rotterdam

Figure 16:KOW, http://www.kow.nl/?project=de-beukelaar-rotterdam

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Nederland. Amsterdam: Faculty of Social and Behavioural Sciences

Interviews

Sitaram, B., Interviewed by Marloes Pieper, Information about the Beukelaar and culture specific care. Rotterdam; 10-05-2015

Steenhuis, R., Interviewed by Marloes Pieper, Information about Orkide housing complex for Turkish elderly. Delft; 22-04-2015

Documentaries

Mantelzorg & Naastenliefde. Marokkaanse ouderen in verzorgingshuis (NCRV, 21-10-2014). From Internet Archive, NPO Spirit Archives. MPEG video, 04:38. http://www.spirit24.nl/#!player/showlist/program:46330334/group

Gonzo. De Ouderenzorg (NTR/NPS, 31-04-2014). From Internet Archive, NTR Archive. MPEG video, 25:16. http://programma.ntr.nl/10111/gonzo/detail/aflevering/6000013352/Gonzo

Internet Sources

http://dictionary.reference.com/browse/dementia (19.05.2015)http://www.rotterdamrijnmondincijfers.nl/home?ReturnUrl=%2f (19.05.2015)http://www.scp.nl/Publicaties/Terugkerende_monitors_en_reeksen/Rapportage_ouderen (18.05.2015)https://www.google.nl/maps/@52.0132089,4.3564452,15z (18.05.2015)