In a World of Our Own by Natalie Cheung

IN A WORLD OF OUR OWN? The phrase implies a curious, nearly contradictory set of meanings when applied to dementia-friendly design: the word ‘world’ implies a sense of freedom, whilst the phrase ‘our own’ suggests a certain exclusion from outside society. There is therefore a paradoxical relationship inherent to dementia design, where the illusion of freedom must be maintained while in reality keeping patients safe and secure from their tendency to forget. To understand and design for this paradox – to try to reconcile the freedom of the patient with the guidelines dementia design requires – is thus the aim of our research booklet.

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INTERVIEWS: INFORMAL CARE 09 DEALING WITH DEMENTIA 09 Gerard and Dora Sanders Dre Teunissen

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INTERVIEWS: FORMAL CARE EARLY STAGES OF DEMENTIA

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DIRECTORS AND INSTITUTIONS

PSYCHIATRICS AND DEMENTIA

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GROUP 10 | HISTORY

A BRIEF

HISTORY OF DEMENTIA Antiquity The history of Dementia goes back many millennia, to the time of Ancient Greece. As far as we know, the first observations and texts on this mental illness date back to the seventh century B.C. The first person to describe the problems related to ageing and old age was Pythagoras, a Greek physician, philosopher and mathematician, in the seventh century. He divided the whole life cycle in six different stages (birth-6, 7-20, 21-48, 49-62, 6380, 81-death). The last two phases were named “Senum” meaning “old age”, a period of life consisting of decline of physical and mental skills, leading to what he defined “imbecility” resembling the first epoch of infancy. In the sixth century there was the first recognition of senile dementia in the interpretation of law by Solon, a judge of Athens. He took into account the senile cognitive decline while discussing the laws inherent to the writing of wills and inheritances. He wrote that the will was accepted “provided judgement was not impaired by pain, violence, drugs, old age, or the persuasion of a woman.”

The preconception of old age as a cognitive decline period without solution or reversion permeates the writings of ancient times and we can speculate that it reflected the social reality of that time. Only between the fifth and fourth century Before Christ there is further interest in the mental disease related to old age. It is Hippocrates, the Father of Medicine, that uses the term “Paranoia” (as synonym for Pythagoras’ “Imbecility”) while classifying the mental illnesses and describing it as the deterioration of mental faculties in old age. He explained it as an imbalance of the four cardinal body fluids (blood, phlegm, yellow bile, black bile), a very diffused diagnostic method in ancient Greece. He also mentioned in the numerous writings that the location of memory and thought might be the brain. His speculation, true and very close to what we know today of the seat of memory and thought and the functions of the brain, was obscured by more influential thinkers following him in the fourth century B.C. Plato and Aristoteles, Greek philosophers, opposing to

Hippocrates’ thought, said that the location of memory and thought was the heart. It was here that the reasoning of mankind had its birth. Being that Aristhotelic thought influenced all middle ages, until the Scientific thinking and the first anatomical researches, for much time it was reckoned that the heart had the functions that today we attribute to the brains. The two philosophers both viewed mental decay in advanced age as an inevitable process that affected old men and which nothing could be done to prevent it. To add to this idea of senile conviction, they also stated that old people were unsuitable for any position of responsibility. These ideas were widespread and can help us think at the social implications of them. Old age was seen as a disease and an incurable one. The Roman Republic and Empire, whom owed a cultural debt to ancient Greece, inherited this view on old age. Only Cicero, a Roman philosopher, wrote about dementia in the second century B.C. stating that “senile debility, usually called dotage, madness or delirium, is a characteristic, not of all old men, but only of those weak in will.” As a lighthouse in antiquity, his statements were more aligned to those of modern medicine,

but the overpower of Arishotelic thought put his observations aside for many centuries. From the first century A.D. on, we have different names that compose the soil on which the medieval and renaissance thinking will stand. Lacking a precise evolution of thought in the matter of mental illnesses, care and health. First of them is Aurelius Celsus, a Roman encyclopedist, that in his De Re Medicina does not mention mental impairment in old age and doesn’t refer to dementia in the section of insanity. He only mentions paralysis in old age. His work, as an encyclopedist, is probably a selection and transcription of Hippocratic Writings. In the second century, Galen, Roman physician whose work influenced the successive 1000 years, put together the medical knowledge of Greco-Roman time, emphasising Hippocrates view of the brain’s function. He also wrote about “morosis”, standing for dementia, in the list of his mental illnesses stating that one of the causes was old age. In his perception old age was “not natural...being instead an inevitable infection of the body.” The legacy that ancient times gave to the following ages was the Aristhotelic thought combined with Christianity and its idea of disease as a punishment for sin. The output once again was that old age was a horrible illness, to which nobody could escape if not with death. The only exception we find in literature is in Constantinople. Its morotrophium or home for lunatics, are described by Charles Du Cange, French 17th century intellectual, in his “Histoire de l’Empire de Costantinople sous les empereurs francais”. He states that there were many insane care facilities in the city, usually connected to the general hospitals.

by matteo basso and federico iezzi What does history teach about dementia? The social stigma of dealing with dementia, the care or repulsion towards the mentally ill, the facilities that attempted to help the demented or separated them from the “healthy” society, the belief that ageing leads to dementia or that dementia is a godly punishment for Adams and Eves original sin. Throughout time and space, the beliefs, dogmas and ideals have determined evolutions and involutions to the process of discovering the underlying reality of dementia and Alzheimer’s disease and the best-practice of health care for the ill. What is our position in time and what is the direction we can impress in the thinking and acting of society for future improvement?

GROUP 10 | HISTORY

Middle Ages Depicted in history as the dark age, also in this sphere it hasn’t been quite enlightening. The combination of Christian ideology and a very selected legacy of ancient-and more insightful- times lead to the certainty that dementia and mental illness as a whole were the righteous punishment of God for the original sin. Parallel to the decline of the Western Roman Empire, all scientific, anatomical and physiological researches following Galen’s death were brought to stagnation during the middle ages. In this context, dementia didn’t inspire much interest or concern, in part because of the prominence of deadlier epidemics, on the other side the cause was the Zeitgeist itself. The main trends during middle ages took the words of the “Ancients” as unquestionable authority, preventing any heretical learning through observation and research and establishing as a rule dogmas and theological doctrines. In this context it was “reasonable” to judge both old age and mental illness as punishments for the original sin. In this period, dementia continued to be viewed as an inevitable feature of ageing. However there was an upwelling of interest in other dementias related to the persecution of witches starting from the early XV century. We can assume that individuals with cognitive disorders where included in these trials. A significant reference to senile dementia that can be found in this period comes from Roger Bacon (1214-1294). This Franciscan friar represented a rare exception to his time. In a period in which the church deeply disapproved empiricism and saw observation and human senses as a depreciation of revelation (thus heretical), Bacon made prolific observations and inventions. For his brilliance he was imprisoned and saved from execution only by influential friends in the church. Afterwards, he spent hid life in solitary confinement, writing his “Methods of Preventing the Appearence of Selenity”. This work was largely based on theories by Arabian Galanists, which sustained the inevitability of mental decline during old age. In Bacon’s work we find as remarkable the reference to the brain as the centre of memory instead of heart, a thesis overtaking Aristhotelic thoughts that remained untouched for centuries. Despite the almost total absence of scientific progress , we record, during the Middle Ages , the opening of facilities amed to the reception of individuals affected by mental illness. Berkin Church Hospital was an asylum founded in 1371 in London by the chaplain Robert Danton, as recorded by Sir William Dugdale in his Monasticon Anglicanum (London, 1655-73). The Bedlam, or Bethlem Royal Hospital, was a hospital founded in 1247 in London, that eventually, in 1377, developed a special department for mental illness. It has also been the continent’s most famous, and infamous, specialist institution for the care and treatment of the insane. Spain, was at this time a place where almost every city had documented presence of mentally ill asylums. It is in fact recognised that this country did more for the mentally ill that any other, though it wasn’t the first. The slope of the Iberian country to the care of individuals with mental illness is probably due to the influence exerted by the Arab culture. An asylum was founded in Valencia in 1409 by a monk named Joffre. Afterwards, the movement begun spread all around Spain. We have data about structures in Saragossa (1425), Seville (1435), Valladolid (1436), and Toledo before the end of the XV century.

Renaissance While Spain was influences from the Arab culture and opened to some mental care facilities, the shift to enlightenment was at the same time opposed and enforced throughout Europe. Between the XV and XVII century the Inquisition, a phenomena born from the Catholic Church in the XII century and declined in many different manners, was at its worst time in fighting heresies. During this time there was interest towards dementia that was usually linked to persecutions and massacres of witches. The victims of the trials indeed included mentally ill and people with cognitive disorders, and their killing could have brought attention to such disorder. At the same time the intellectual renaissance and humanist basis rediscovered the concept that “Man is the measure of all things.” In this environment we have the first examples of interest towards medicine and mental illnesses. Phillip Barrough, a English physician and medical writer, published in 1583 a book on medicine. He divided the cognitive disorders known at the time, referring to Galen’s list. One of the voices in this book was memory loss and was distinguished from loss of reason, suggesting a different illness if the diseases presented were singular or together. In this century, there was a start of debate on mental illnesses but far from the social acceptance we know today. The senile were still treated as crazy people and set into unfriendly and prison-like environments

to spend the rest of their life. We have records of a “Pazzarella” (place for mad people) in Rome in the XVI century. Founded by Ferrantez-Ruiz and the Bruni on approbation of Pope Pius IV, it was used to as a hospital for the insane that “received crazed persons of whatever nation they be, and care is taken to restore them to their right mind; but if the madness prove incurable, they are kept during life…” As the roman insane hospital, Charenton Asylum, was a structure founded in one of the suburbs of Paris, near by Park De Vicennes. We know from James Joseph Walsh that it was put under monastic rules and under the lead of the Sisters of Charity of Saint Vincent de Paul. It is evident that every facility had to be in some degree connect with the religious power of the Church, thus the cure of the mad or the demented was heavily influenced by the theological doctrines. In contrast to this, the theoretical and scientific works were ever growing in this time of enlightenment. Thomas Willis, an anatomist and personal physician of King Charles II, gave a precise distinction of dementias in his Practice of Physick dating 1684. He identified different cases of dementia basing them on his experience and anatomical knowledge. “Stupidity or morosis or foolishness. . . signifies a defect of the intellect and judgment, yet it is not improperly reckoned among the Diseases of the head or brain”. Among the cases is old age, he states: “some at first crafty and ingenious become by degrees dull, and at length foolish by the mere declining of age”. Farther on this path, the influence of the scientific thought would overpower the social and religious preconceptions that in this very century had lead to Galileo’s affair.

A milestone in the sphere of dementia, mental illnesses and old age related senility are the theories and the practice of Philippe Pinel. He is considered the founder of modern Psychiatry and was the first of contemporary history to define and describe dementia properly. He is reputed to have coined the term Dementia (dé mence) in 1797. Although Dementia was mentioned in the Encyclopédie Francaise and made its official appearance in French law between 1794 and 1799. He was also the physician to the Bicetre asylum and the consulting one to Napoleon, other than professor of pathology and hygiene. The mentally insane and senile dements, had been imprisoned and kept in their poor conditions until that time. In the book Treatise on Insanity, 1806, Pinel criticised openly the system that “abandoned the patient to his melancholy fate... until the natural close of a life so wretched shall rescue him from misery” Pinel succeeded in establishing his view that madness was not a crime but a disease. As a result, the insane were unshackled, and institutions designed. This act wasn’t without a great resistance from both society and the government that refused to believe that the “crazy” had any chance to be relieved from their madness. Also, he applied scientific principles to observation of the patients. His more humane idea of care and humanitarian approach wasn’t the only in Europe. William Tuke founded in 1795 The Retreat, a hospital for insane Quakers and those they recommended, through the Religious Society of Friends in York. The Society of Friends had developed a powerful collective discipline of its members. At the Retreat, this was adapted to the control of insanity, replacing many physical restraints with moral restraints. To summarise this century it is undoubted that it was the cornerstone for a further look into those mental issues and in curing them. It is thanks to the application of the ideas of Pinel that our societal perception of these diseases today is such.

and exact description using precise terminology into psychiatry, Esquirol established the foundation of modern classification of mental disease. In addition to these very broad and fundamental changes, Esquirol made specific refinements of the categories of dementia. His famous quote states that “A man in a state of dementia is deprived of advantages which he formerly enjoyed; he was a rich man who has become poor. The idiot, on the contrary, has always been in a state of want and misery” After the work done by Pinel and Esquirol in establishing programmatic classification of mental disorders , it was possible to recognise the characteristics of phenomena that included dementia. In this condition , the concept of dementia began to emerge as a narrower and more defined condition. For example, in 1873-74, the general paresis was established as different from senile dementia and in 1898 Emile Kraepelin unified under the name of dementia praecox the complex number of characteristics of the disease that we now call schizophrenia. Parallel to the changes in the classification of mental disorders , the end of the 19th century saw the introduction of new concepts and techniques that had dramatic implications for the etiological characterisation of mental diseases . For instance, anatomists analysed the changes in weight of the brain of people with dementia . This decrease of the brain mass was not recognised as a result of atrophy until 1864 , when Samuel Wilks gave his definition of atrophy .

1900 1700 During the 18th century there was an awakening of humanitarian purpose with regard to the insane and their care. This is a partial list of the most famous facilities that opened around Europe and USA: Saint Peter’s Hospital at Bristol - 1696 St. Peter’s Hospital at Bristol, England -1696; the Manchester Royal Lunatic Hospital -1706; Bethel Hospital at Norwich - 1713; Dean Swift’s Dublin Hospital - 1745; the Pennsylvania Hospital of Philadelphia - 1751; the New York Hospital - 1771; In US the first asylum exclusively for the care of the insane was opened at Williamsburg, VA in 1773.

1800 At the beginning of the nineteenth century, dementia had a legal and a medical meaning and referred to most acquired states of intellectual dysfunction that resulted in psychosocial incompetence. Neither age of acquisition or reversibility were part of its definition. Jean Etienne Esquirol, Pinel’s most illustrious pupil, put in practice his Master’s idea of applying scientific principles of objective observation to the clinical setting. In his book ‘Des Maladies Mentales’ he recognised the need to create order out of the existing chaos, and proceeded to reassess and redefine old terms, create terms for new concepts, and gave names to newly identified subtypes and categories of mental disorders. By introducing systematic clinical observation

Alois Alzheimer and Otto Binswanger both described the arteriosclerotic brain atrophy in the 1890’s. At this time, atheromatous degeneration of blood vessels with stroke had become known as a necessary event for the development of senile brain atrophy and senile dementia. During 1901, a 51-year-old woman, Auguste D., was admitted to the state asylum in Frankfurt. She was suffering from cognitive and language deficits, auditory hallucinations, delusions, paranoia and aggressive behaviour, and was studied by Alois Alzheimer (1864–1915), a doctor at the hospital. In 1907 Alzheimer’s study on the case of Auguste D. is published describing a dementia related disease associated with particular microscopic changes in the brain tissue. During the course of the 20th century, the discoveries about dementia went hand in hand with scientific progress and its achievements. These advances , together with other social, economic and political factors , shaped the social awareness about dementia and influenced the action of governments and institutions regarding dementia care treatment. As we have seen , the origin of modern psychiatry is to be placed in the 19th century and its development was closely linked to the emergence of large asylum . There were many reasons , in the social context , to invest in this type of structures . The developing movement for social welfare was also applied to the mentally ill. Moreover , the urbanization process following the industrial revolution put many families in the condition of not being able to cure the sick . Conditions in these asylums worsened during the 20th century and since the 1950s an increasing deinstitutionalization has dominated mental healtcare reforms. Large asylum have been closed or downsized, and the total number ofpsychiatric hospital beds has fallen dramatically. It is enough to say that from 1955 to 1980, state mental hospitals lost 75% of their population. Many of the elderly with cognitive diagnoses moved into nursing homes. Returning to scientific advances , during the 1960s the link between neurodegenerative diseases and age-related cognitive decline begin to undermine medical convention whereby dementia in old age is due only to the celebral atheroslerosis. In 1976, Robert Katzmann finds a link between Alzheimer disease and senile dementia. He suggested that a vast majority of dementia cases occuring after the age of 65 were pathologically identical with Alzheimer disease. Dementia is no more seen as a normal stage of aging. Dementia and dementia care have until recently been steeped in the medical model of dementia as a progressive and irreversible disease with a prognosis of misery for the `sufferer’ and his or her family. But during the 1980s psychologists became more vocal about their work with dementia sufferers and their family care givers. They highlighted the psychological aspects of dementia and the importance of care giving and care interventions. The raised interest of psychologists coincided with changes in care provision for frail older people. The closure of long-stay geriatric wards, the rise of voluntary and private sector care provision in residential and nursing homes, and the emergence of care in the community (which includes residential and nursing homes), contributed to the developing profile of both dementia and dementia care in the last decades of the twentieth century. Recently however, reports about new forms of institutionalization have suggested ‘reinstitutionalization’ in mental healthcare is occuring.

RESEARCH

RESEARCH: PARTNERS

DEALING WITH DEMENTIA Even at a younger age people can get dementia. In the Netherlands approximately 12 000 people with dementia are younger than 65 years. Young people with dementia still fulfil actively their roles in society and often realize better that they are ill. There are still no medication for Alzheimer’s disease and other forms of dementia. However, there are medications that can slow the disease process. An early diagnosis is important. The earlier the diagnosis of dementia is made, the better helps an optional treatment in order to stabilize the disease, delay or mitigate.

riod of uncertainty. But it is at the same time confronting and sometimes terrifying because dementia is a debilitating disease and has a great impact on the lives of both; the person with dementia and the family and friends. A person with dementia is, as the illness increases, more and more dependent on his environment. That is why a dementia should not be a taboo. Family, friends and neighbours should be aware of the situation, that way they can help and make everyday life easier.

People with dementia lose their overview and can no longer trust their memory. Structure in the day gives certainty. To get up and eat at a fixed time can help.

Practical tips

The first symptoms of dementia are usually subtle behavioural changes. Daily life cost a person with dementia extra effort; to hold a conversation, to make plans, to put things in perspective, to solve problems, to make decisions etc. Family and friends are the first ones who notice that there is something going on. How to deal with dementia?

• Reflects the changing perceptions For someone with dementia it becomes less and less clear what “own life” actually means. He is insecure and he is fighting for his own identity. By letting him be connected with the familiar experiences and memories you leave the person with dementia in his value and he does as much as possible on his own. This can be done by providing recognition, security and familiarity.

• Excite the senses If multiple senses are activated at the same time it could increase the chance that the information will be stored.

If the diagnosis is made it usually means the end of a long pe-

•

Maintain a fixed schedule

• To take regularly a rest The injured brain is working at full capacity and therefore uses a lot of energy. It helps not to do too many things on a day and take a regular rest.

• Support the sense of time Help your partner with dementia by having a clear calendar and a clock with day and date display. Encourage him regularly to use that clock and to take notes (like what happened today) in a calendar

By Lucijana Boskovic and Kevser Culdur. Statistics show that 1 in 5 men and 1 in 3 women will get dementia in their lifetime. Every person have 20 % chance to get dementia. The Netherlands counts currently over 260,000 people with dementia. The aging of the population in the future could cause that this number will grow explosively and in 2040 over half a million of people will suffer from dementia.

RESEARCH

If you always point out someone’s faults and failures, he can withdraw himself, be angry or maintain self-esteem. He does not see why he cannot remember things. Therefore it makes little sense or not sense at all to constantly correct and/or contradict him. • Adjust the communication If you talk to someone with dementia you should keep in mind the limitations. Make sure you have the attention when you say something. Stand in sight and use short sentences. Give only one instruction at a time, or share assignments into small pieces. Make sure that he has heard or understood you. Give him time to process the question, do not immediately assume that he does not understand what you mean. • Look for matching activities Make room for socializing and relaxing. Search together for activities that fit what someone still can and will do. • Keep safety As the dementia progresses, The adjustments should be made so that the risk of accidents in the home are minimised. • Think of yourself! For many carers is dealing with someone with dementia an arduous task. Research shows that the majority of carers is heavily loaded with care. It is important to think about yourself if you want to keep this task up. Emotions the partners of dementia sufferers go through: The caregiver has to deal with a continuous process of losing a partner but also with changing of family responsibilities. Dementia means ‘a loss’ for the immediate environment of the patient. The person with dementia becomes more difficult to reach and that is gradually a goodbye to the person he or she was. During the process of dementia you have to, as a family member or a friend, deal with feelings similar to a grieving process. These feelings are often not recognized as such. At least not by yourself, what can bring you to a question such as; Why I am I responding this way? And not by the environment; You are lucky because your partner is still there? People does not recognize your loss what leads to an incomprehension. In the early stage of dementia a partner may be torn up between despair and unrealistic optimism that they will find a cure. Some people even deny that there is something wrong. This is a normal reaction. That way they try to shield themselves against painful feelings, sadness and helplessness. In the next stage the loss is a reality and is often accompanied by anxiety ; “Does he recognizes me today? ‘ Anger:” Why did this happen to us? “ and guilt or doubts because a partner thinks he should do more for that person with dementia. For many caregivers it is a shocking awareness that sometimes they want the patients were dead. Certain situations can give a partner a feeling of powerlessness. You may experience shame, loneliness, deep sadness and depression. Sometimes partner thinks; “This is a hopeless situation and I’m all alone.” Physical symptoms may also develop: decreased energy, loss of appetite, stomach and intestinal problems, insomnia, fatigue, headache etc. At some point you will admit the loss. The pain and sorrow will be still there, but you will try to accept that the person with dementia has changed.

with dementia to be in a movement, what leads to less motivation for exercise. Constantly sitting quietly in a chair or lying in bed sores that result.

Sharing feelings with others can be a relief. Because your loss is often invisible to the outside world you need to indicate that you need help. Talk about your feelings with a counsellor, a good friend or a family member. Visit discussion groups or the Alzheimer Café in your area to meet peers. Ask friends to come regularly along or call. Consult your doctor if you feel depressed or anxious, if are tired or have insomnia.

Help with care There are several options for assistance in caring for someone with dementia. Sometimes partners can rely on relatives, friends and neighbors. In addition, there are volunteers who can take over the care for a couple of hours per day. Also paid help (whether compensated or not), such as home care or day care of a nursing home, can provide a solution.

If your partner is admitted to a nursing home, you should see another change in your relationship process. You will miss his or her presence and probably be dead-tired. Try to take it easy until you are feeling more energetic and try the first few months to maintain a fixed schedule.

At some point you will admit the loss. The pain and sorrow will be still there, but you will try to accept that the person with dementia has changed. Sharing feelings with others can be a relief. Because your loss is often invisible to the outside world you need to indicate that you need help. Talk about your feelings with a counsellor, a good friend or a family member. Visit discussion groups or the Alzheimer Café in your area to meet peers. Ask friends to come regularly along or call. Consult your doctor if you feel depressed or anxious, if are tired or have insomnia.

Some people have had so much sadness in the dementia process that they could hardly mourn if the patient dies. Others experience very severe reactions such as a shock and pain or relief. Only after the patient’s death can a partner fully mourn; not just over the person who was affected by dementia, but also to the loss of the person he/she was before this serious illness struck.

In the last stage of the illness, the patient can no longer recognize you or even talk. That is a very painful experience for a you as a partner. Your life with the person with dementia seems almost over, but you cannot really mourn because your partner is actually still alive. Some people have had so much sadness in the dementia process that they could hardly mourn if the patient dies. Others experience very severe reactions such as a shock and pain or relief. Only after the patient’s death can a partner fully mourn; not just over the person who was affected by dementia, but also to the loss of the person he/she was before this serious illness struck.

Intimacy Dementia has always a clear influence on the relationship. The healthy partner has to detach emotionally from the old personality and he has to begin a new relationship with his partner with dementia, which is partly the same as before, but at the same time partly changed dramatically. The equivalence and reciprocity in the relationship between partners, if one of whom suffers from dementia, is disrupted. How does the patient experiences this process? Physical; The ordinary everyday activities, such as self-care, dressing, walking, going to the toilet, are not going so well anymore. Psychological; The person with dementia loses his grip on the world and reacts fearfully to it. He has a fear of failure and inferiority. This manifests sometimes as discomfort, resignation, or mistrust. Social; The person with dementia loses its role as a dialogue partner, companion and lover. He is less and less capable to satisfy social demands. Sometimes the person with dementia experiences the partner as well as the one that controls his life and constantly plays the boss over him. Not infrequently, the partner is therefore called ‘Dad’ or ‘sister’. How does the healthy partner experiences this process? Initially, he does not acknowledges the disease. Dismissive, cold and self-centred behaviour of the person with dementia can lead to serious tensions and relationship disorders. Sometimes is even a divorce considered. If the diagnosis is made, often occurs a feeling of guilt; “If only I had known earlier, I would have been more understanding.” Changes in the nature and obnoxious behaviour increase the repulsion of the healthy partner. Cognitive decline, combined with the increasing forgetfulness can also be very frustrating for the partner. Sometimes you get questions like : “Who are you

Intimacy anyway?”. The disease can on the other hand also give a sense of belonging. Then we speak about another kind of “love” that comes into the relationship in which “caring” is central. Although equivalence is changed, the relationship could be very close. Marital partners are usually willing to go together, after good times, also through bad times. Sometimes as the dementia progresses the verbal contact is no longer possible, but the body contact remains. Partners can enjoy until the end in small intimate moments like caressing in washing and dressing. “Talking is not working anymore, but it feels still great just to walk, with arm in arm, together.” Daily care Partners and family take care of their loved ones with dementia usually by themselves. But as the disease progresses it could provide a major challenge. Many caregivers become even overburdened by the care. A person with dementia needs more and more help with daily activities as the illness progresses. There may be more and more problems with dressing, washing and bathing and eating and drinking. Malnutrition and dehydration can have a major impact on health. In addition to memory problems and behavioral problems, a person with dementia will often have also physical problems such as incontinence. It is usually more difficult for someone

Dementia has always a clear influence on the relationship. The healthy partner has to detach emotionally from the old personality and he has to begin a new relationship with his partner with dementia, which is partly the same as before, but at the same time partly changed dramatically. The equivalence and reciprocity in the relationship between partners, if one of whom suffers from dementia, is disrupted. How does the patient experiences this process? Physical; The ordinary everyday activities, such as self-care, dressing, walking, going to the toilet, are not going so well anymore. Psychological; The person with dementia loses his grip on the world and reacts fearfully to it. He has a fear of failure and inferiority. This manifests sometimes as discomfort, resignation, or mistrust. Social; The person with dementia loses its role as a dialogue partner, companion and lover. He is less and less capable to satisfy social demands. Sometimes the person with dementia experiences the partner as well as the one that controls his life and constantly plays the boss over him. Not infrequently, the partner is therefore called ‘Dad’ or ‘sister’. How does the healthy partner experiences this process? Initially, he does not acknowledges the disease. Dismissive, cold and self-centred behaviour of the person with dementia can lead to serious tensions and relationship disorders. Sometimes is even a divorce considered. If the diagnosis is made, often occurs a feeling of guilt; “If only I had known earlier, I would have been more understanding.” Changes in the nature and obnoxious behaviour increase the repulsion of the healthy partner. Cognitive decline, combined with the increasing forgetfulness can also be very frustrating for the partner. Sometimes you get questions like : “Who are you anyway?”. The disease can on the other hand also give a sense of belonging. Then we speak about another kind of “love” that comes into the relationship in which “caring” is central. Although equivalence is changed, the relationship could be very close. Marital partners are usually willing to go together, after good times, also through bad times. Sometimes as the dementia progresses the verbal contact is no longer possible, but the body contact remains. Partners can enjoy until the end in small intimate moments like caressing in washing and dressing. “Talking is not working any-

more, but it feels still great just to walk, with arm in arm, together.” Daily care Partners and family take care of their loved ones with dementia usually by themselves. But as the disease progresses it could provide a major challenge. Many caregivers become even overburdened by the care. A person with dementia needs more and more help with daily activities as the illness progresses. There may be more and more problems with dressing, washing and bathing and eating and drinking. Malnutrition and dehydration can have a major impact on health. In addition to memory problems and behavioral problems, a person with dementia will often have also physical problems such as incontinence. It is usually more difficult for someone with dementia to be in a movement, what leads to less motivation for exercise. Constantly sitting quietly in a chair or lying in bed sores that result. Help with care There are several options for assistance in caring for someone with dementia. Sometimes partners can rely on relatives, friends and neighbors. In addition, there are volunteers who can take over the care for a couple of hours per day. Also paid help (whether compensated or not), such as home care or day care of a nursing home, can provide a solution.

INTERVIEW

INTERVIEW: PARTNERS

GERARD & DORA SANDERS On Thursday, 17 of September, at 09:00 o’clock, we had the pleasure to take an interview with lovely Mr. Sanders. We asked a couple of days earlier if he would be so kind and let us do this interview, he was glad to help. When we got in front of the door, first what we noticed was his nameplate. It was written Dora and Gerard. Dora deceased almost one year ago but yet, her name was still standing there, next to his. We knocked at the door, he politely represented himself and finally asked us to come in. ith the first sip of thee he begins his heart breaking story. “Me and Dora were married for 53 years, we loved each other. Dora was 69-70 years old when the first symptoms were noted. Dora became very forgetful, she forgot to finish things and could move very difficult. Mobility decreased. When it was obvious that something is not wright we went to the family doctor. She has had a number of examinations. And then they found out very quickly. She had a large white spot on her brain. She had Alzheimer’s. Not only dementia itself but also what awaits to come was a heavy burden to bear. It was a very difficult time

for us.”

absolutely nothing about it! “

He sights and continues. “The symptoms were forgetfulness and reduced mobility. She had difficulties with incontinence. She began to have difficulties with walking. We lived here, in a row house, therefore, a stair lift was requested.“ Above all, at some point Dora got pneumonia, the doctor said that she had to be hospitalized. Mr. Gerard have taken care of his wife for 2 years . Fortunately they have placed her in the nursing home Ekelhof which is nearby. They have cared for her for 1.5 years.

They took care of here very well. Every weekend, Saturday and Sunday she visited their home. In the morning she would be brought home by the minibus and in the evening they would bring her back to the nursing home. That was very good handled. He did not join them. Gerard laughs; “I would call them and say, Doortje comes, and she would be well received there” But then continues seriously; “What we have experienced in the period when she was not well, was very earnestly for me but also for her. She had no idea how she had ended up in the nursing home. She could not understand why she had to stay there.”

However, it didn’t went so well at the beginning , it was harsh for both of them. Dora could communicate well. She constantly forgot about small things, but she remembered well her husband. For example, Dora forgot that Gerard was coming in the afternoon. “But Gerard, where have you been anyway? I spent the whole day waiting for you. “ “ But Dora, I told you when I was coming.. “ Dora could get really angry about it; “ I know

Gerard has had many conversations with Dora. “We’ve already done so much for you at home, I cannot do this anymore. Dora says, “Yes, but I sleep at home so fine?” “Yes, Dortje, you can easily get to sleep, but I can take care of you no more.” Gerard had to take care of her also during the night. He was constantly busy with taking care of her, so he could use some night rest, otherwise he could collapse also. It’s been difficult, but she fi-

nally accepted / understood to remain there. Eventually, she did not want to leave there. It was the care and other people there that she founded so nice and fun. “I had a lot to handle. I was there in the afternoon, I was also there in the evening. I also had many to return because of 53 years of marriage. It was hard, very hard. Until the ultimate week. She was here at Sunday afternoon, at home. Suddenly she was hot and she had to throw up. She was sick. I called the nursing home and said Doortje is not feeling well. We went back to the nursing home. She was found to have a blood pressure of above 200. It remained high. The next day, the doctor was called in. Her sugar has been measured, which was also high. They have examined her liver. Her renal and liver function was not good any more. Doctors have indicated to investigate her. But that was not a good idea, because she was already so tired of the past few days. I let her calm down.” Gerard has stayed with her for four days. Last day Gerard took a nap for an hour and when he woke up Dora already deceased. She was 76 years old. From the day dementia has been diagnosed, until the day Dora deceased, passed 4.5 years.

With Gerard Sanders, partner of Dora Sanders. Interviewed by Lucijana Boskovic and Kevser Culdur.

On Thursday, 17 of September, at 09:00 o’clock, we had the pleasure to take an interview with lovely Mr. Sanders. We asked a couple of days earlier if he would be so kind and let us do this interview, he was glad to help. When we got in front of the door, first what we noticed was his nameplate. It was written Dora and Gerard. Dora deceased almost one year ago but yet, her name was still standing there, next to his. We knocked at the door, he politely represented himself and finally asked us to come in.

INTERVIEW

He is socially active, he is bicycling 30 to 60 km once a week with his group. Furthermore, every Sunday morning he is cycling with an old friend. He is getting a great pleasure from discovering new beautiful green areas. “Dora did not like to participate in activities. She preferred sitting at home. She has had an illness in 1972 and since then she did not like cycling. She has had a balance disorder then, when I think about it now, it may be a sign of dementia.” Gerard deliberately didn’t go to an Alzheimer’s café to share his feelings with others who has the same destiny. One of the reasons was that someone had to stay home to care for her while he is gone. Sometimes he had to take care of other business, then his sisters would come to take care of Dora. Sometimes he called the home care to come over. “I went every Thursday to play billiards with my friends. One of my friend’s wife would come then and sit with Dora.” Meanwhile, the billiard friends of Gerard deceased. Dora had a TV in her room but it was almost never on. ” In the nursing home, they would washed her in the morning and then they would put her in the living room. She was sitting there all day long. Several activities were been carried out in the living room. Dora had no interest in those activities. She began working some activities but did not carried on. Suddenly she would stop and then she would start looking around. Dora started knitting once. She has knitted a few lines and then she quit, she was distracted by entrants.” Dora never finished the scarf she was making for Gerard, but another resident took over her work and finished it. Gerard thinks she didn’t go with the hobbies because she was easily distracted. And then she would forget all about her activity she was working on. Or her hands couldn’t do it. Sometimes she was just tired, she just didn’t want to do anything.

He goes further with his story; “Dora never talked about our daughter. At the age of 7 a brain tumor had been diagnosed, she died at the age of 10. Dora never talked about her loss, all gathered in her. If I brought it up, she would stop me. The death of the daughter was tough for Dora, because she was at home the whole day and she did not share her pain with others. I was, on the other hand, busy with my work and I talked about it. I still have moments when I’m crying. Then I go into our daughters room and read the letters from the funeral. There are some very sweet letters.” At that moment Gerard offers us to read the letters, but we almost cried about his story, we couldn’t accept his offer. The relations of their son have also hurt Gerard and Dora. Their first grandchild was born with one hand, and then they (his son and his wife) got separated. She kept the children. “Our son can difficult deal with the situation. He hardly visited his mother in the nursing home. He could not stand it. I didn’t liked it very much, because I haven’t received any support from him.” The son still doesn’t visit his father often. However, he calls regularly,

but there is not much to talk about. He has had many problems in his life, three marriages, few kids, with some of them he has a contact and with some of them not. “In the last week of Dora’s life, I called my son to let him know that she is very ill. Grandchildren immediately came to their grandma. She was happy to see them, she held her arms up and open. But she couldn’t talk anymore” Gerard has a nice hobby, he keeps birds. It is strange to say, but during our conversation those birds were singing and it felt almost cheerful. On Dora’s last week they took a birdie to the nursing home. But Dora didn’t even got it. He says; “Loss of mobility is bad, but it is even worse to lose thinking ability.” However, in nursing home the bird got name Dora. The doctor and the whole team, social worker, etc. have always stood by Gerard. They have had a great relationship/friendship. He is also very proud of the nurses that are working at the nursing home. He says that they are more a family than just nurses. They always paid extra attention to the residents. For example,

what meant a lot to him, with the anniversary of Dora he may remained longer. One time they were having a nice dinner, that was a very nice gesture for him. He had good contacts with the nurses. And he still does. Dora also had, except the nurses, several friends in the department. Occasionally Gerard would call them and talk to them. “Last days, William had cared for her. Dora patted William on his face. She wanted to thank them for the good care.” Furthermore, he finds it very unfortunate that he has not received support from his son, but he did received a lot of support from his neighbors. They share food with each other if somebody is cooking. If transportation is needed, they help each other thereby. They have good contact with each other and they support each other very well. He also received strong support from his sisters and his brother in law. Gerard also likes to cook and he is good at it. “It is a bitter happiness because Dora hasn’t been in the kitchen for years, she could no longer stand on her legs.” As for the household, once a week a worker comes to clean his house.

Dora had previously worked in a cigar factory. After the wedding, and her first child, she has stopped working and became a housewife. They have worked in the same factory. When they first met, Dora lived across the street where Gerard worked in the factory. After years he became a supervisor. He took his pension years ago, even before it was clear that Dora suffers from dementia. “We always went to foot or bicycle to Veldhoven. But after the disease in 1972 that had to be declined. Afterwards our deceased daughter has arrived.” Then Gerard went on with even more emotionally ton; “Doortje was aware of the situation she was in. Her demented moments. But Dora couldn’t help it, and I couldn’t do anything about it. I cried a lot when she passed away, but it doesn’t bringing her back. If I can’t fall asleep, I think of Dora, then I see her still sleeping. Dora was lying on her bed and not in a coffin. I wanted to remember her sleeping and not in a closed coffin. So I didn’t participated when she was placed in the coffin.” Gerard cannot say that he is pleased that Dora is gone. But he is happy for Dora, Because it was so difficult for her. She was attached to the cables. She could no longer walk, three men had to hold her and lift. “I found it sad to see that my wife is suffering. I would never wish that kind of life for anybody. That is no life.” We prepared a lot of questions for an interview, but they were mostly already answered through his story. Adjustments they had to make in the house were a stair lift, and

a seat and handrail in the shower. Dora’s stay in a nursing home was 100% paid by insurers. Taxi minibus was also paid by the nursing home. However, Gerard has had a high income and therefor has also submitted a contribution. Furthermore, holidays and extra things had to be paid by the partner himself. Dora has, for example, been on a vacation with the nursing home. They went with two nurses to a large converted farmhouse. They played games, walked, they received a tour at the farm and went to a museum. It was vacation at his own expense. She stayed on the first floor of the nursing home. Because she could not move she was sitting in the wheelchair. Gerard would take Dora outside often, especially when the weather was fine. They would then sit in the park. Nurses also took Dora often outside for the activities such as grocery shopping. One time they visited Gerard at his home afterwards. Mr. Gerard took us outside to see the birds in his beautiful garden and we were allowed to take pictures of him and also the pictures that were hanging in the room. We even brought some cake with us but after his bitter story nobody could eat. So we left it there he said that he will call his lovely neighbors for a cup of thee, or a cup of conversation, and a slice of cake. Even though we saddened him by reminding him of the hard times, he was still kind enough to sit for almost 2 hours aside us. He shared with us his life story. We got out of his house full with empathy and with a richer knowledge of the world. Thank you sir Sanders for everything!

Gerard Sanders is 79, and lives in terraced housing in Eindhoven. Dora died last year at the age of 76. She suffered from dementia for the last 4 or 5 years of her life. They were married for 53 years.

INTERVIEW

INTERVIEW: PARTNERS

DRÉ TEUNISSEN In 1955 Mr. Teunissen started to work in the drugstore. He was the youngest employee then. at the age of 19 he was branch manager of Etos drugstores. At the age of 20 he went to the military service for 2 years. For years he worked as branch manager for all Etos shops in the neighborhood. But after years Etos merged with Ahold, so the headquarters moved from Eindhoven to Zaandam. At that moment Dre stopped with working for Etos. He started his new job in Rabobank. For 12 years he worked in Rabobank as the head of the department. He stopped at Rabobank because of there was no more work for him. Then he started with his new job in the carpet industry. He worked international for big projects, like aircrafts, cruise ships, hotel chains. He was responsible for the big projects. This was a heavy job. It took too much energy from him. He didn’t left energy to do other activities. And daily he worked for like 10 hours. At the age of 59 he stopped with working. Accidentally is was good timing, because then dementia already started at his wife. Maybe it started a long time ago. But now Dre could observe the symptoms much better.

In the beginning Dre couldn’t understand the different actions of his wife. He asked by himself “this should be so?” At a certain moment, Mia couldn’t cook anymore. She put the pan with potatoes on the burning furnace, but she forget to add water to the potatoes. Dre asked his wife what she is doing. According to Mia she knows very good what she was doing, “I am not crazy” Mia said. Another time Mia was bicycling on the highway. The policemen stopped Mia and told her she is not allowed to bicycle on the highway, Mia replied “I know that I am not allowed”. Mia spoke clearly and very good. She didn’t leave marks she forget something. Another day she was ironing in the garage and suddenly she was gone by bike. Dre went to every supermarket to see if her bike is there. He looked at the polders. If he couldn’t find Mia he went back to home and wait for her till she is back at home. During this symptoms is was not known Mia has dementia. Now the doctor knows she has the disease of Pick. But then the doctor was not known whit dementia. It is about 18 years ago. Mia asked 8 times the same question, “what time is it?” for ex-

ample. In the beginning Dre was irritated by the repeating questions. But if he knew his wife has dementia he handled in a different way. The process of dementia goes very slow. The family doctor searched to all possible diseases. He asked Dre if there was marriage problems, maybe Mia was depressive. But it was impossible that Mia was depressive. They loved each other too much and they had a happy marriage. But the family doctor gave Mia some anti depression medications for 2 years. He also sent Mia to the psychiatrist. But psychiatrist didn’t help. Mia said it is nonsense to visit the psychiatrist. Mia was very aggressive, because of frustration. Aggression doesn’t match with the character of Mia. Dre was unknown with dementia, so he didn’t know aggression was a part of dementia. Mia loved to play tennis. She played tennis with her friends. Sometimes she stood at the wrong side of tennis court. The girlfriends understood there was something wrong with Mia, but they accept it. Mia also did some volunteer job. She helped elderly people with doing the administration or she helps them with household.

One time Dre and Mia was on holiday in Suriname. When they were back at home, they received a note from one of the elderly people. In the note the man wrote “Mia, you don’t have to come to us anymore”. This man also had the disease of dementia. But Mia didn’t function good anymore, so the elderly people didn’t want help from her anymore. (After years Dre found new volunteers for these elderly people in place of Mia). The mom of Dre told him “there is something not good with Mia, but I don’t know what it is”. Wife of the best friend of Dre made a research about dementia and she gave readings about dementia. She was journalist. She saw Mia and she told Dre she has some information booklets about dementia, it could be good to read these booklets and compare it with the symptoms of Mia. Dre read the booklets, and everything matched with the disease of Mia. The journalist was the first person who helped Dre in the right way. Mia could hide her illness very good. But they went to a memory clinic. There was a team of different specialists. They tested Mia with simple questions, like do you know where you are now? In which city are we? What is the date of today? At the first question Mia answered “yes I know, we are here”, but the specialists said “No, in what kind of building are you?” Mia had to be more specific. But she couldn’t because she didn’t knew the answer. Mia was tested on 3 different days. After the tests and brain scan it was sure Mia had the disease of dementia.

With Dré Teunissen, partner of Mia Teunissen. Interviewed by Lucijana Boskovic and Kevser Culdur.

Mr. Teunissen is 77 years old. He is married with Mia. Mia is 75 years old now. In the beginning of their marriage fam Teunissen lived in Eindhoven. After few years they moved to Den Bosch because of the job of Mr. Teunissen.

INTERVIEW: MS. ODIJK

INTERVIEW: PARTNERS

PARTNERS WITH DEMENTIA What is your age and the age of your partner? Ms. Is 54 years old and her husband is 63 years old. They have three children. When did you get the diagnosis? In 2003 he (was 51 years old) went at the first time to the neurologist, in the beginning the doctors think about a burn out and much time later in the year of 2008 he get the diagnosis of Alzheimer. The youngest child of they are 14 years old when her father get this diagnosis. When you have Alzheimer, they forget more and more and they have holes in their memory. What were the first symptoms? When it was evening and outside it was dark he lost the way. And he was a teacher of electro technique at school and he make dangers mistakes with electro. A colleague of him told that there was something with him.

Which type of dementia got your partner? He had Alzheimer. With this disease he know that he want to do something but he can’t start with something he doesn’t know what he was doing with it. He know that he want to go out his bed, but he doesn’t know how. He see a cup of coffee and he want to drink it but he doesn’t know how he must start drinking. In which state of dementia is your partner? Was it going fast? He is in the last state of dementia. He can’t do something on his one. He can’t drink, can’t find his way and can’t wash himself. With everything he must go help. Did you take care of him for a long time before he went to the Landrijt? He get his diagnosis on 2008 and he come to the Landrijt at 2014. Six years his wife and his children take care of him. He get sometimes to the daycare and sleep sometimes in a care center. His wife take care of him and keep him home until the new building of the landrijt was ready. That was a conscious choose of her so he doesn’t move for two times.

What do you think of things that can be change in the health care? The health care hasn’t enough money for doing everything. There aren’t enough nurses to take care of the patients. The patients’ needs attention and what they gets is only care and not attention. The nurses haven’t enough time to give attention to the people. The family must give attention to the patient but when the patient is young the partner and the children also young and they working and can’t give attention to the patient for every day. And there must be come a care for children when the parents get dementia in an early state. The youngest daughter was 9 years old when her father get sick and she was 14 years old when he get his diagnosis. She hasn’t help for this, but it was very heavy for a child. One patient cost each month 3500/ 4000 euro, without any activities.

How does your partner think about the experience of the environment? For him it doesn’t matter he doesn’t know anything about what he see. But the environment of the building is really good, there is much nature around the building and shops. Patients with frontal dementia want to walk and fore this people it is so important that the environment is good. What can be different? But into the building there aren’t shops and cafés, that is unfortunate. Much people want to go out but they can’t and when you have shops and café’s into the building the people can come to that. There is only a restaurant and that is into a height and big space, it isn’t cozy and the acoustic isn’t good. What do you like in this building? Two bedrooms have one bathroom and that is good. It is clean because the nurses wash the people and clean it up. The bedroom is also good, they sleep alone on a room and that is how it works nowadays. For younger people this is good but when there is an older patient they sleep all the times with their partner and now they are very scared to sleep alone. The mother of ms. Odijk was scared to sleep alone and she likes to sleep in a room with other people. And in this building the bedrooms are always the same but sometimes there are a couple and they want to share a room.

With Ms. Odijk, 54 Interviewed by Lieke Greve and Michelle van der Cammen

Dementia is a neurologic disease whereby brain cells die. This disease is a process of decline of the brain function. The brain cells die and the brains are primary damaged. Finally the disease make all the parts of the brains damaged. Not all of the types has the same process. Some dementia types has a gradually process of losing their mind and other types has a jerkily process. Most of the times dementia start with disorders in taking of new information, sometimes the it start with changing of their actions. Characteristic for all the types of dementia is that the patients lose their mind. Part by part the mind of a patient with dementia are losing. The parts that staying in their mind is the part of the first thought in our mind. That are the things of our first childhood, what we first learning, hearing, seeing and had experienced. But also the most heavy thought stays in our mind, the fear, shame and sadness. So it can be that the patient remember only the traumas of his/here life.

GROUP 03 | PARTNER PATIENT: MALE

INTERVIEW: PARTNERS

What don’t you like in this building? When you walk with heals into the building the people under need you hear you. When the nurses have heals when they walk the people on the floor under need can’t sleep. Every sitting room has his one colors and every color is also the type of care, the idea is good but you see only the colors on the curtains and one painting. And it is also a depressing painting. What do you think of the use of colors in the building? There is so much white into this building. The walls are always white. There aren’t anything to recognized the way. The corridor and also the sitting room must be a place of feel, smell, see and taste. It can be a good idea to play music when people walk into a room. Much stimulation isn’t good for the patient but in this building there aren’t anything of stimulation. The building has also a colour outside. The brown part of the building are the part for the dementia people and the yellow part of the building is a part for people with physical problems, they have a larger private room and a smaller common room.

What do you think of the quantity windows/ views and the light in this building? The windows are very good, much big windows into the building. Much light come into the building and that is very good. The balcony railings are also good, the patient doesn’t think that they fall out the window. In the sitting room there is a balcony and it is very small, the patients are with 9 people and with a wheelchair there can sit 4 people outside. A better idea is that every patient has his one place to sit outside. In the summer the sun is shining on the balcony and it is very hot to sit there, so when it is summer, the people can’t sit outside. And also the electric light isn’t good, the light hurts into your eyes and doesn’t looking so good. When a patient is lying is his bed ant he watch to the ceiling, the light is full shining in his eyes. Are there any things what your partner is missing in this environment? There isn’t anything that my partner is missing because he don’t know of it. The environment of the building is very good. There is also a nice garden to walk around the building. But it is not

good that the people can’t go many times to the garden. The people are on the second level of the building and the nurses haven’t time for go outside with the people, only the family can do this when they have time for it. The daycare and the offices are on the ground floor and that is unnecessary, it is good for dementia people to sit on the ground floor, so they can go outside for a walk. Are there any things what your partner is missing in this environment? There isn’t anything that my partner is missing because he don’t know of it. The environment of the building is very good. There is also a nice garden to walk around the building. But it is not good that the people can’t go many times to the garden. The people are on the second level of the building and the nurses haven’t time for go outside with the people, only the family can do this when they have time for it. The daycare and the offices are on the ground floor and that is unnecessary, it is good for dementia people to sit on the ground floor, so they can go outside for a walk.

What are things that they can for your partner to feel at home? Into the private room the family can put furniture in it and pain-tings and photos can hanging on the wall. On the corridor they can put a photo next to the door. For mr. Odijk there are hanging much photos into his room and into the corridor and also music records. It feels good for him. There is also hanging a photo of Rotterdam on the wall, mr. Odijk is coming from Rotterdam. Has your partner therapy or is he doing common activities? He get only creative therapy and at the last time the doesn’t do anything on this therapy, he drink only coffee at the creative therapy place. But a time ago he makes painting on the creative therapy and mr. Odijk put the paintings on his room at his private room. A time ago he had physical therapy but now he hasn’t it no more. What are you thinking about the outdoor spaces, the common spaces and the private spaces of the building? In the common room it is good to have a restaurant, hairdresser and pedicure. And cooking in the sitting room between the patients is very good. They can smell the food and watch and if the patients are in the first state the can help with cooking. It is better and healthier than when food is cooking somewhere else. The thresholds aren’t good, there are thresholds on the balcony and into the bathroom. With a wheelchair they can’t almost go into this rooms. The private room is closed and there are two keys for it. One for the partner and one for a child. But I have three children and they can’t have their one key for visiting there father. Into the private room the bed and the closet are staying in a hospital alignment. When you change this alignment the sensor for the light is under the bed and the place for the television is on the wrong place.

With Ms. Odijk, 54 Interviewed by Lieke Greve and Michelle van der Cammen

same department. Nowadays much people have obese and the beds a more bigger and the lifts for tilling the people are more bigger. That is why the doors must be a wider and the rooms and the bathroom are more bigger. In this building there where doors where can’t passed a bed and that isn’t good. When there is fire into the building all of the bed must be out of the building, so they make the doors more wider. The atmosphere into a room is very important, light is very important and the ceiling must be not to high but also not to low. My husband don’t know what a mirror is, he want go into the mirror, so for architect, don’t make a lot of mirrors. And it is also with glass, a patient don’t understand what is glass and want to go through that glass. It is better when a window can be a window and can also be a closed wall.

GROUP 03 | PARTNER PATIENT: MALE

INTERVIEW: PARTNERS

What is your age and the age of your partner? I am 75 years and our Jan just turned 78. We have celebrate his birthday here in the Landrijt, next to the restaurant with some family members. When did you get the diagnosis? In 2008, that was about two years after the first symptoms. What were the first symptoms? He forgot some words. Also orders he can’t remember that good. When he went to the supermarket, he came back with something else. In the beginning I didn’t know that it was because of the dementia, but now I know that these things were the first symptoms. Later it became worse. At a certain point, he didn’t know anymore where the toilet was. Apparently, people with dementia do not recognize the different functions of the rooms anymore. Which type of dementia got your partner? Alzheimer, that is the most common form of dementia

In which state of dementia is your partner? Was it going fast? He is in a very advanced state. For him it is not possible anymore to live at home. He needs too much heavy, physical care. For me it’s too heavy, I’m not the youngest one anymore. It is of course very hard for me, especially when you live such a long time together. The last few weeks, he is helping by the nurses for eating and drinking. He don’t understand it anymore. Did you take care of him for a long time before he went to the Landrijt? Since we knew the diagnosis, he lived for about two years at home. You tried to care for your husband by yourself as long as possible. After a while it became too much and you have to think about yourself. It is hard, but necessary. When I came back from the supermarket, he was totally in panic. He thought that I left him. We bought a whiteboard and place it on the wall in the living room. That was helping him.

What do you think of things that can be change in the health care? Because of the cuts, there is not enough staff. In the past, there was more contact with the patients one-to-one. There was time to bring the patients outside. The family and the volunteers have to do it now. The communication between the nurses is very bad. They give often times different information to me. I know it’s because of the government, but it is not better now. There are so many people who work here. I don’t recognize everyone, so for the patients it isn’t good. It will be good if they had something like a nameplate. The best is when there is the whole of the time someone in the living room as contact point. Did you partner also live in the old building? Yes, he had live there for only one year. What were the differents between the new building? The spaces were bigger. There were more walking spaces, that was nice for him. The hallways were in a circle, so they didn’t

walk against the closed door. In the new building it is one straight hallway, but it doesn’t matter anymore for our Jan. The old building was very dark, but the interior was less modern in comparison with the new building. In the new building are the spaces very small, there isn’t much space to walk. People with dementia want to walk a lot in the beginning state. But now it isn’t like a labyrinth anymore. It is more orderly. The interior is fine, but the rooms aren’t clearly recognizable. For example, there is no sticker on the toilet door that told it is a toilet. It was in the old building. What I like a lot is the big kitchen. Now they cook in the living room of the patients. It wasn’t possible in the kitchen of the old living room. It is more like home. What I also like are the big balconies. The ground floor is of course better, because you can go to the garden. The groups are smaller. Now they live with nine people at one group. In the old building there were like eighteen people. How does your partner think about the experience of the environment? He is in a very advanced state, so I think that the environment doesn’t matter anymore for him. He doesn’t respond to it. For me, it is a very noisy environment. It is like a soundboard. If the front door close very hard, you can hear it in the living room. What can be different? I should give the building a more warm appearance. It is now very cold. Decorate the rooms as fifty years ago. I think the most people feel happier with it.

With Ms. van Riet, 75 Interviewed by Lieke Greve and Michelle van der Cammen

GROUP 03 | PARTNER PATIENT: MALE

INTERVIEW:

What do you like in this building? The big spaces and the own bedrooms. In the past there sleep most of the time four people in one room. Everyone has his own place. There is good adapted sanitary, a toilet with arm support etc. Only the doorstep at the bathroom isn’t practical. What I like is that everything is inside the building. There is a barber, a pedicure and a restaurant. What do you think of the use of colors in the building? Everything is very modern nowadays, also the colors. Every living room has his own color that matches with the sort group. In the living room of our Jan, everything is blue. It is a cold color, that gives the people more rest. There is also a red group, they have ‘warm’ care.

What do you think of the quantity windows/ views and the light in this building? I like it very much. Very big and many windows. For the patient it isn’t so nice. The windows are very low, it isn’t smart. They looking in the depth and they found it scary. Jan walks sometimes into the window. In his bedroom there are railings before the window. It isn’t nice, it looks like a prison. There is enough light inside the building. Are there any things what your partner is missing in this environment? We are missing some shops in the neighborhood. It is important for people with dementia to involve them in society. Also to be in a different environment. Unfortunately, there isn’t a small shop inside the Landrijt.

What are things that they can for your partner to feel at home? In the beginning, there were a lot of conversations with me. They want to know our home situation, because they try to imitate our home situation. For example, at what time he goes to bed and when he wakes up. Is he used to eat warm in the midday or in the evening. What his hobbies are. All that kind of little things they try to continue. Normally he was starting his day with a cup of coffee and the newspaper. In the beginning it works a lot. Now, he doesn’t read the newspaper anymore. They advise to create the bedroom with a lot of his own stuff, so that he can recognize. Has your partner therapy or is he doing common activities? For being in move, he gets some physiotherapy. So he can for as long as possible still walking with rollator and being more independent. If he sits the whole day on a chair, he gets more stiff and walking is harder. He goes also every week to the music therapy. He always liked music a lot, he becomes happy

when he hears the music. The music therapist is going to the living room, maybe it is better when it is in a different room. Then he is in a different surrounding and for a moment away of the unit. What are you thinking about the outdoor spaces, the common spaces and the private spaces of the building? The Landrijt has a very nice garden. You can walk beautifully around the building. The garden is still close, but it doesn’t feel like that. The path that is nice for the rollators and wheelchairs. I think that the common spaces are too big, too cold. I like it more when it’s like a brown café instead of the big, open space. The private spaces inside the building are big enough. He shares his bathroom with one other patient, but that is fine. It looks good, every morning it will be cleaned. What can the architect do for people with dementia to make their live more easier? What I think, when you live here. You should create more rooms on the unit. There is one room were nine people live. Only on your bedroom you can be alone. I should make it smaller. Everything on the ground floor, so the people can go outside by their own when they want to. It doesn’t feel as a nursing home instead of the high towers. At last, I would create the walking spaces back in a round, like the old building.

With Ms. van Riet, 75 Interviewed by Lieke Greve and Michelle van der Cammen

GROUP 05 | FAMILY REPRESENTATIVES

INTERVIEW : FAMILY REPRESENTATIVES

DEMENTIA IN THE FAMILY How old is your mother ? Of what kind of dementia is your mother affected? Since when is she suffering of this disease?

hard and painful to see your mother like this. It is also a loss, because the mother you knew is gone.

Why did you choose to bring your relative to a dementia centre? And what pros and cons are there?

patient also had his own bedroom. So they live together in one home, but they still can choose to go to their own bedroom and have some privacy when they want to.

My mother passed away last month and she died at 87 years. The dementia she suffered was Alzheimer. It is difficult to say when she started to suffer of this disease, because you cannot immediately recognize the disease and it is also a slowly process.

How did your mother interacts with you and the other family members?

In the beginning she could participate at creative activities like painting. But when the disease got worse she didn’t do a lot. She even forgot that she had ever painted.

Me and my siters had a good relationship with my mother. My sisters visited her much more than I did when she lived in a dementia centre.

We decided to take my mother to a dementia centre because it was not safe anymore to live alone for her. In a dementia centre she could live safely and get all the help she need. We have chosen for the dementia centre in Oisterwijk, because it was a familiar surrounding for her. Her husband (my father) and my niece were also buried there at the cemetery.

Where does your mother live?

Does she lived in small or big units?

In the beginning I went to her every two weeks. But it was very difficult and painful to see her like that. So at one moment I think I visited her once in a month. My sisters visited her much more than I did. In the beginning, my sisters visited her almost every day.

The dementia centre where she lived is in Oisterwijk.

She lived in small units.

Do you think that the place where your mother lived is good?

What kind of centre is it?

What kind of lifestyle did she had?

I think the place is really good where she lived. Not only the building but also the care of the nurses were good.

It is a centre for dementia patients. The centre called Catharinenberg.

She lived in a small unit with six people. Every unit has one living room, kitchen and bathroom. The living room and the kitchen were in one open space. When people were cooking, you can smell it in the living room. So it was a very home lifestyle. Every

Could you give some examples of the problem you and your mother faced? At one moment, my mother started to behave strangely. Like she forgot to put the fire out when she was done with cooking. Or when she was done with cocking, she started to cook her dinner all over again. Sometimes she was dressed up very nicely, but with her pyjama pants still on at the middle of the day. Have you and your family accepted your mother’s dementia? It is very difficult to answer that question. Because it is very

How often did you visited her?

With Mr A. Schreuder, 65 Interviewed by Ezra Schröder & Cinzia Bussola

I have one brother and two little sisters. My mother was Dutch and my father was born in Curacao. I grew up with my family in Curacao. We moved to The Netherlands when I was still young. I am in my second marriage now. I have two daughters, a stepdaughter and a stepson. I am an Architect. I have worked for many years for the architectural office Herman Hertzberger. After that I began my own Architectural office with my brother.

GROUP 05 | FAMILY REPRESENTATIVES

What exactly is good or bad at that place? I think the ‘home lifestyle’ was very good where she lived because, I think the people who have this disease need to feel at home. It was for my mother very good to live in a small unit. The inside and outside relationship is very important (relationship with nature). I like the symbol that the kitchen and living room was in one open space. So you can smell what they were cooking. Also the individual bedroom is very good. It is important that the patients still have a room for their own so that they have still some privacy. I did not like the position of the smoking area. It was too central. It should be somewhere else but not in centre of the room. I think that there were not enough toilets. One toilet for 6 people is not enough. Also the different activities were too far apart from each other.

What do you think it is good for the patient to have in the place she/he lives? And what for the family members?

there family member.

(look previous question) I think it is good to have small units were patients can live. The ‘home lifestyle’ is very important. Open spaces so that there is enough relationship with nature, because the people love to walk outside and feel the fresh air. I think it is good to have a building with only one story. Because if the people live on the ground floor and they have a glass door from the living room to the garden, then they can easily go outside for a walk. If you live on the first floor you can only look outside from your window but you cannot easily go outside from your living room. So living on the ground floor gives a much more stronger relationship with nature.

Does your mother communicate her needs to the attendant/nurse?

I do not think that you should pay much attention to family members because it is much more important to think about the patience’s themselves. Maybe a large table in the living room is nice were enough family members can sit when they are visiting

Do you have any overall comments?

The nurses and the patience’s have a great relationship. They also had with my mother. When my mother lived in the centre it was just like the nurses were her family. In your opinion, what things can improve your mother’s quality of life? The daily happenings/activities for the patience’s should be the focus point on your design.

When my mother passed away, we raised funds/money for the organization of the dementia center because my mother lived

there very well. With this money they can buy a bench for in the garden or can make the living rooms of the units look nice. We also bought a very big biscuit tin for the patience’s. It is the little, small, daily things that matter for them. At the end of the interview we showed him some pictures and we asked him which picture did he liked or thinks is good for what kind of building or environment should be look like for people with this disease. These picture that he have chosen you can see above.

With Mr A. Schreuder, 65 Interviewed by Ezra Schröder & Cinzia Bussola

GROUP 05 | FAMILY REPRESENTATIVES

INTERVIEW: FAMILY REPRESENTATIVES

How old is your grandfather? Of what kind of dementia is your grandfather affected? Since when does he suffering of this disease? My grandfather is 80 years old. The dementia is still in an early stage. The disease is growing but it is still not very bad right now. Could you give some examples of the problem you and your grandfather faced? Personally I do not have much problems dealing with him. But there are some examples of general problems, like with his money. He spends much money without thinking, so we had to take his credit cards away from him or otherwise his bank account will be empty. Another example is that he keeps buying cakes and stuff without any control. So he gets very fat. Have you and your family accepted your grandfather dementia?

Yes, now we know how to deal with it. My mother is helping him out and my uncle also helps him. when one of them do not has time then the other is always there. My mother has found new work and it is close to where my grandfather lives. How your grandfather interacts with you and the other family members?

get worse, then he maybe needs to move to another building where he can receive more help. Why do you choose to bring your relative to a care apartment for old people? And what pros and cons?

I have a normal relationship with my grandfather, but I do not see him that often.

The dementia centre where my uncle lives is very close to where my mother and my uncle live. The surrounding area was not familiar to him because he never lived there, but it is close to his daughter and son, so in this way he can live closer to his family.

Where does your grandfather lives?

Does he live in small or big units?

He lives in Middelburg.

He lives in an care apartment. the apartment is quite big. I am actually jealous of him.

What kind of centre is it? He has moved to a new apartment next to a care facility, but he still lives on his own. He does not cook for himself. It is an care apartment for old people. Maybe in the future when the disease

What kind of lifestyle has your grandfather? My grandfather lives very luxury in his apartment. He has his own bathroom, living room kitchen and bedroom.

Right now, I do not think that he does many things. When he goes to the shop or somewhere else he always takes the bike, he does not rely too much on public transport. He has a special card so that he can take the cab for free because he is old. He keeps exercising, he never stopped it. He is not a very creative person because he does not paint. I do not think that he has really many hobbies, because back in the days he always worked. He watch tennis, he reads newspapers and watch television How often do you visit him? Once or twice a year I guess. I am a really busy person and I do not really have much time to visit him. Mostly I see him for a birthday party or during the holidays. The fact that he has dementia is not really a problem, it is most of all because it is a little awkward to talk to him because we do not have many topics to talk about. But that is not new, it has always been like that. Do you think that the place where your grandfather lives is good? I like the place where he lives. It is new and he is the first renter there. It is also nice, that he has a study room, a living room, bathroom and a kitchen. He lives on the first floor and he has a balcony. What exactly is good or bad at that place?

With Ms J. Heere, 25 Interviewed by Ezra Schrรถder & Cinzia Bussola

I am a student at the University in Eindhoven. I am studying building physic. I am 25 years old. I did my bachelor degree at Avans university of applied science. After that I started my master at the university. I do not live with my parents anymore. I live on my own in Tilburg. My parents are divorced. I have one older brother.

GROUP 05 | FAMILY REPRESENTATIVES

INTERVIEW: FAMILY REPRESENTATIVES

What exactly is good or bad at that place? The good thing is that there is a little shop on the other side of the street, so when he needs something he does not have to take the bike or public transport and there is no risk that he get lost. The stop for public transport is right next to the door so if he needs to take the bus it is very easy. He lives very nicely. I do not think that there are many problems there. One thing that is less good there is that it is very quiet there, because the apartment building is not in a big city. What do you think itâ&#x20AC;&#x2122;s good for the patient to have in the place she/he lives? And what for the family members? I think it is good that the people who suffers dementia need to feel at home. Thereafter, it is important that there are many activities to do for them in the building or nearby. Maybe this way they can interact

with many people more and they do not feel alone. These activities need to be close to each other, so that the people do not have to walk far away from the one activity to the other. If you have a centre with different activities that would be nice.

goes for lunch and dinner, but I do not think that he see many people. Also his family member are very busy, so for an example me or my brother we do not visit him very often.

Finally I think what good is if for the family members is that their family member with dementia lives close by.

At the end of the interview we showed her some pictures and we asked her which picture did she liked or thinks is good for what kind of building or environment should be look like for people with this disease. These picture that he have chosen you can see above.

Does your grandfather communicate his needs to you or to the attendant/nurse? How? There are not nurses there that take care of him, but this could be possible in the future. In your opinion, what things can improve your grandfather quality of life? He does not really see many people. My grandfather does not have many friends that has to do with because he moved from one city to another city. Sometimes he meets people when he

With Ms J. Heere, 25 Interviewed by Ezra SchrĂśder & Cinzia Bussola

GROUP 02 | EARLY STAGES OF DEMENTIA

CONVERSATION: STAY-HOME PATIENTS WHO ARE IN THEIR EARLY STAGES OF DEMENTIA

Way-finding in the building

Stickers on large glass panels

Each room has its own name

Boat model made by one of the patients

Garden that can be used by the patients

Titanic model boat made by one of the patients

Shop were patients cal sell their creations

Mosaic plates made by patients

Painting made by one of the patients

Courtyard in the middle of the building

Introduction Archipel Landrijt in Eindhoven is a daycare center for dementia patients, who still live at home, but come few times a week to take part in special activities or just simply to spend time in larger group. There is even a special bus decorated by Hermes like a living room to bring them from the center to their homes. Two members of the staff who are taking care of patients, showed us around the building and introduced us to the patients. Most of them are in the first phase of the disease, so we had no problems with communicating with them. Actually it was hard to believe that those cheerful and talkative people have dementia. In fact it is very common for dementia patients to deny their illness and according to the members of the staff younger patients with dementia are aware of their disease..

Conversation with patients When we asked patients about what they like the most about Archipel Landrijt, they all unanimously said that taking part in various workshops is the best thing there. Workshops The center organizes plenty of activities for patients, which are specially designed to train their minds and slow the progression of the disease. They can choose from painting, making mosaic tiles, wood working, sculpturing stone, making puzzles and many more. Some of the pieces they made are really impressive and need great amount of work and time. One example is an small model of the Titanic that took one patient two years to build. The attention to detail in this work is impressive. The best works are displayed in glass boxes on corridors or are hanging on the walls. Patients can take the things they made home, but also they can put them in the center shop and raise money for more materials and tools. The only thing that patients liked about the building was the perfect ventilation, but some-

times it was too cold. Especially in the winter. Staff and rooms Another thing that patients really liked was the staff. They emphasized that they receive really good care in Archipel Landrijt and that carers are almost like family for them. On the other hand the patients had a lot of complaints. They were talking about to small and too noisy workrooms. In fact, we can confirm that the activity rooms were not big enough for so many people and the machines in some of them were really clamorous. There was also no separation between activity areas and resting areas, so people who wanted to relax or take a nap were annoyed by the noises of the workrooms. Walls and windows Patients also criticized white walls in the building, which made them feel like in hospital. They wanted to see more of their works displayed in the corridors. The problem also proved to be large windows to ‘see trough’ the building. They provided great amount of natural light inside the building, but in reality patient

were bumping into the glass because they could not see them. Now the glass panels are covered with stickers in order to prevent such accidents. In the middle of the building there is a decent sized inner green courtyard, which isn’t used that much. It is very well maintained and full of different kinds of plants and places to sit and relax, but patients said it is a waste of space and they would prefer bigger workshop instead of it. Actually, they have one big garden in the back of the building with arbours, flowerbeds and areas for seeding various plants, vegetables and fruits. They use that space very often and are really enjoying it. Way-finding Another major problem for the patients turned out to be spatial orientation inside and outside the building. They find it difficult to go from garden to the restaurant and back to their workrooms and they get lost all the time. Also continuous paths around inner courtyards with changes in direction causes confusion. Patients cannot find their ways and are wasting time wandering around. Facade Patients in the center also complained about vertical panels on the facade, this architectural element on the outside made some patients feel like their were in prison because the vertical bars remind them of prisons,

EARLY STAGES OF DEMENTIA Conversation with a group of people who have early stage dementia and still live at home. Interviewed by Kinga Rzeplińska and Hratc Hovanisian

The day-treatment department of Archipel Landrijt is a treatment center for all kind of patients who still live at their home or home of elderly. This department not only provides treatments like physiotherapy or ergotherapy, but patients can also take part in different (creative) activities. Patients can meet other patients, play games, work with their hands, dance, make music, use the computer and socialize with other people in many different ways.

GROUP 02 | EARLY STAGES OF DEMENTIA

Garden

CONVERSATION: STAY-HOME PATIENTS WHO ARE IN THEIR EARLY STAGES OF DEMENTIA

Multi-functional room were patients can do a variety of activities with their hands

Courtyard

Resting room for patients (usually this room is dark)

Enterance

Plan of the day-care department | scale: 1:150 source: base drawing by Oomen Architecten

Legend Living room

Computer room

Staff

Storage

Activity room

Wardrobe

Consulting room

Toilets

Resting room

Smoke room

Routing

Interior layout We are entering the space through large door placed in glass wall. Early in the morning, wheelchairs are parked in the main hall of this department. First thing you see when you enter the space is a big, glass courtyard. Through the glass we can see people working in the activity rooms, but to enter the workshops we need to go trough another door, long hallway and turn twice. Pretty confusing even for us. On the right side there is a rest room and various storerooms. Around the bend there are six living rooms, each with own kitchen, dining, resting area and a television. One of them is not accessible for outside people, because patients sitting there are stressed when they see unfamiliar faces. There is also a shop around the corner, where everyone can buy things made by dementia patients in the Archipel Landrijt. The stuff rooms and toilets are situated in different parts to make sure patients have a short way to get there. There is one big communication circle and two smaller around courtyard and the second workshop room. The whole communication seems pretty complex, even going to toilet might be a challenge for dementia patient. Making a lot of turns and going all around is very confusing for them.

INTERIOR LAYOUT

GROUP 7 | INTERVIEW: DIRECTOR OF CARE INSTITUITION

TYPOLOGY:

DESIGN TOOLS DESIGN DISCIPLINES In the article ‘Het intuitieve huis’ a team of experts is asked to help to make an overview of key issues and factors concerning dementia. Various relevant disciplines were represented. The purpose of this project was to make an idea book for designing for people with dementia. The following subjects are represented in the article: continuous space, route and movement, orientation and wayfinding, personal space, social space and interaction, light and see, acoustics, tactility and smell & taste. Most of these subjects are filled with references from retail, housing, furniture. This was their method to break free from the traditional ‘care architecture’ and to arrive at new insights. Below we give the subject and examples from the article. 1: CONTINUOUS SPACE Many of care building are still linear, with the classic long corridors and large common dining areas and activity areas, be-

cause it’s designed form a rational perspective. Originally the care houses derive from hospitals; this is reflected in their composition and structure. This causes discomfort and sometimes even conflict when people live together in a strange environment. There must be opportunities to find your own way. Dead ends and locked doors frightens and frustrates patients, because they often go wandering in search of home, resting or exit. This means that the environment must be freely accessible as possible. Instead of rooms and corridors there must be a continuous space where the patient can walk through. Different kind of spaces and atmospheres give everyone the occasion and space to find a place to rest. The surrounding has a very big effect on people. This makes every room different. The immediate proximity to the street and the garden, or just out to an enclosed patio, overlooking at green and serenity, or just people and movement. You can also think about the height of the ceilings, the amount of (day)light and where it comes from. Also materials, use of color, texture of the materials and the acoustics. How to give a space the look that

invites people to have a chat or to have an intimate conversation? How to make the space to retreat, where you can follow the action from a distance, where is cosiness? By making different rooms it is possible for everyone to find a place where he/she can feel comfortable. 2: ROUTE AND MOVEMENT The environment where the patient lives has to give the space to wander around. They are looking for home or for place to hold on. A routing with many dead-end corners can cause panic and frustration and give a sense of being trapped. Instead of this you can use organic, continuous route along places which gives different sensory tickles. This gives the possibility to walk around in a relaxed mood. It is possible to guide people through the routing using light, good positioned objects for grip, tactile guidance offers support and the ability to pause. Using these cues the patient will eventually be able to find the right path.

GROUP 7 | INTERVIEW: DIRECTOR OF CARE INSTITUITION

3: ORIENTATION AND WAYFINDING We always think that we pick our way through space on rational decises, but this is mostly done by feelings. We unconsciously choose our direction by influence of light, color and shape. The place where you can see this the most is in commercial buildings. To find your way in a space there must be a certain amount of visual stimuli. To litlle stimuli means disorientation, but too many has the same effect. You have to make enough to help someone from place to place. 4: PERSONAL SPACE The environment must provide enough distinction between spaces for social interaction and spaces to retreat. This doesn’t applies only for dementia patients but for everyone. in most cases the dementia patient lives on his/her own. You can do different things to make the patient feel at home. You can put their personal belongings in the room or create a space that gives a certain privacy. You can use “tools” to make a room more private.

For example using thick walls, with a clear demarcation and a longer moment of entering. You can also create the feeling of privacy by using a lower ceiling than other spaces, low hanging armatures for lighting, muted acoustics, creating a room suitable for dialogue and using personal items to recognize a room. 5: SOCIAL SPACE AND INTERACTION In a care institution for dementia patients it is hard to have social interaction. Patients have difficulties to meet each other, but also for the families it is hard. Physical contact such as a handshake is quite complicated. By using a special designed tool you can stimulate people to get in contact. For example the table that is designed by Jack Chen. It produces sounds if people touch each other. The garden and the kitchen are collective places where social interaction can be. By strategically placing doorways and furniture people can participate. This can be direct way or from a distance. A space can also invite people for interaction, by acoustics, light-

ing, etc. It is not necessary for everyone to be directly involved in the interaction. The space must give the chance to watch from a distance or directly participate. Spaces which are specially designed for one kind of interaction do often not function properly. Spaces where people can meet each other accidentally or casually seem to be the best places for social interaction. 6: LIGHT AND VISION The eyes of elder people get less sensitives so they need more light than younger people. A large amount of (day)light, evenly distributed on the area, is of great importance. Color contrast helps also with distinguishing different objects. Daylight is an important factor in the hormonal balance of people. This helps with regulating day-night rhythms and sleep rhythms. Light is a factor that helps people to relate to time, day and season. It is very important to have daylight in the design from above and from the sides.

7: ACOUSTICS

8: TACTILITY

High frequencies, eg (child)voices and music, can cause difficulties for the older ear. Their ears perform relatively well with the low tones. The dementia patient can become easily distracted this means that they suffer from traffic noise and sounds from building installations. Many problems of the hearing can be adjusted with hearing devices, but we can also help by a good acoustic design. Sound plays a big role in the perception of space, using sound and reverberation you can find out about the spatial qualities of the room. The use of absorbing materials against the ceiling is the most effective. Playing with level of absorption you can give rooms different ambience. In a space that is designed for reading or personal conversation it can be a nice to block out sounds from the environment. A room that is meant for social conversation can have less absorption as the intelligibility remains good.

When you walk through a space with a slow pace, the materialization and details of a room play a bigger role. These materializations and details determine how a building ‘feels’ and this largely determines the character of the space. Dementia patients wander around often, but in an insecure manner in which they seek support. A good design must give touchable guidance along the route that can lead the patient through the building. This invites them to move and at the same time the different materials give them different experiences. This concept can also be applied on furnitures and walls. This tactile guidance can give people a distinctive experience that is percepted by the hands. Instead of the standard handrail there can be a grip in a material that suits the experience of that space. ‘Announcing’ the different areas can be done by using different materials on the wall. 9: SMELL AND TASTE

Odor and flavor are the most difficult to accommodate or control in a spatial design. The biggest possibility for experiencing smell and taste is when in contact with the outside air. The air outside gives information about temperature, humidity and smell of the season. Trees and plants also provide a sense of smell and at the same time they purify and humidify the air. Building materials have a negative effect on the quality of the air because of the smell and it spreads dust. But the use of certain types of wood can give a natural feel and a material like clay plaster has even an (air)moisturizing effect. 10: REMINISCENCE This is a subject that is still being research a lot. Theory says that in old age we best remember what we have experienced in our late childhood, the so called reminiscence bump. People with dementia have difficulties with placing new and abstract objects. When designing the home of an elder it is possible to search for the kind of objects they were surrounded with in their late childhood. This will have a good effect on the person.

GROUP 7 | INTERVIEW: DIRECTOR OF CARE INSTITUITION

INTERVIEW: INSTITUTION DIRECTOR

VITALIS: ENGELSBERGEN How many patients do you have? We have 42 places for care and 43 places for dementia care. The dementia care is divided into five group homes. The average age of the persons are 85. The average duration of their staying here is about 3 years. Unfortunately it ends with dead. How are the groups divided? Every group has approximately 10 patients. This group has their own living room where they spend their time. There are activities in the living room for the group and also in bigger halls, where everybody can come. How many caretakers do you need? When the group exists out 7 people 1 caretaker is enough. When we have groups bigger than 7, than we have 1 person extra who supports every group when needed. Also we are working together with Fontys and Summa College. That means we have always

students here for internship who also helps us with patients. Plus we got volunteers who come often to help. Does patients have their own room? Every patient have their own rooms with a bathroom inclusive a toilet. These rooms are connected to the living room where the persons of one group come together. Can the patient walk everywhere? Most of our doors are open. This gives them the space to walk through spaces. Only doors and elevators that are going up or down are locked. Playing with the color of the doors helps controlling the patients. By giving the door the same color of the wall or giving it a print of something else causes less problems.

Did you use ‘architecture tools’ in your building? Like I told before we used prints on doors and elevators. The same we did with the decoration of the rooms. We tried to give the rooms a home feeling. The second thing is that we use a lot of light. It is about three time more Lux than normal, because elderly people can’t see very well. Like you feel it is warm inside, because they feel easily cold. It is also very important to keep the people save. This means that we limited a lot of things. You can think of kitchen doors, hot water and heating system. It is like keeping a child save for things that can be dangerous. Also keep in mind when designing that you need space for beds and lifts. Walls and doors can easily get damaged. Is there relationship with the outside? We are on the first and second floor. This makes it difficult to go outside, because there must be guidance for the patient. We

have balcony for every group, so they can go outside. On the ground floor we have common spaces, shops and offices. It would be great if we could stay on the ground floor, but this has some economic reasons. We also give care to people who don’t have dementia and they are on other floors.

With Paul de Bruyn, 50 Interviewed by Jacco Doest and Sinan Önder

GROUP 7 | INTERVIEW: DIRECTOR OF CARE INSTITUITION

INTERVIEW: INSTITUTION DIRECTOR

ARCHIPEL: PASSAAT How many patients do you have? We have 80 patients suffering from dementia in our facility. They live separated from the patients that need somatic care. The dementia patients live in the one-storey buildings behind the big entrance building. Most of the patients is between 75 and 80 years old, they stay in the facility for two years. This fast turn rate is caused by changes in the health care. Because of that people later choose to go to a health facility. The conditions are getting worse and worse before they are getting treated. People do not often die of dementia but other diseases that they have. In this facility they treat patients trough the different stages of dementia. How are the groups divided? The group of 80 is divided in 4 departments and every department consists of two livings groups, these living groups have their own livingroom and kitchen etc. Activities are organised for those living groups, we choose to provide activities that are

close to a normal daily routine. The activities are held in different spaces so that there is a clear distinction between daycare and dwelling.

Can the patient walk everywhere?

We have 55hrs care per day on one living group. The one think I don’t like about the building is that there al these rooms for the employees, I would rather have that they shared rooms with patients, because of that more eye for the patient.

I’m actually quite proud of the routing we have in our building. The original building had an H shaped floor plan. By building passarells between the legs of the H, we created a circular routing. Connected tot his route are the communal rooms and other interesting spaces. So the patient can wander around freely without the feeling of getting lost. We do notice that the patients often are attracted to light, so we often find them in chairs near the atrium.

Do patients have their own room?

Did you use ‘architecture tools’ in your building?

We have eighteen single bedrooms, but one double bedroom. I would like to get rid of this bedroom because it is not the best solution for most patients. Only in particular cases it really works out, for example we once had two sisters in our facility

Every department in the building has its own entrance. That way you do not always have to enter trough the public entrance, what gives a more homely feel. The patient and his/hers family only once enters trough the general entrance, next times they will enter trough the separate entrance. We do want to give this a more homely feel, by maybe using a specific door design. We now also have a system in which you can attach a personal im-

How many caretakers do you need?

age on the front door of a bedroom. A second thing we did is using stickers to hide doors that have to be looked, that way the patients no longer recognizes them as door and it gives them a feel of freedom. Thirdly we created spaces for reminiscence, in this spaces we placed objects from the time that the patient was young. So he/she will hopefully remember it, or it could be a easy conversation starter.

With Frank Hendriks, 43 Interviewed by Jacco Doest and Sinan Önder

GROUP 6 | INTERVIEW: PSYCHIATRICS

INTERVIEW: PSYCHIATRICS

PSYCHIATRICS & DEMENTIA Introduction

How can dementia be detected?

To have a better picture of the behavior of people with dementia, it is important to look at the psychological aspect by the view of a psychologist.

The degree of dementia can be measured in different levels. The ‘Global Deterioration Scale’ is used among other to measure the stages of dementia and it can be divided 7 stages. The Central Display Health Care Organizations (CIZ) determined by intake of the family doctor and family conversations if a person is no longer able to care for themselves. The person is only eligible for a nursing home when diagnosed with dementia. Psychologists advise to subscribe immediately after diagnosis to provide a home, because the average wait is one year.

The two interview contains the view of a psychologist who both maily work with demented people in a care home. The first one with Mr. Rens Boeijen who work in the famous care center ‘ Hogewey’ in Weesp’. And the second interview is taken with Mr. Gijs Lauret who works in care center ‘ de Stichtse Hof’ in Laren.

In the early stages, dementia is not recognized by the patient. In some cases, they will never be aware of it. They do not understand the situation itself is making them feel misunderstood and experiencing different emotions such as anger and fear. Dementia is described by psychologists as the state image of someone, that suffer from memory problems and are hampered by the daily functioning.

- Speech problem - Practical activities : on and undress, TV turn on , turn off coffee machines ; - To recognize objects - Executive function: buy groceries, administration - Control function: such as making a planning, thinking ahead There is no medications for dementia, but you can stimulate it in a positive way. Often happens that the partner who is taking care of a person with dementia does not want to relinquish. It requires a lot of care and stress, so they often end up with a burnout and in the worst case they will die earlier than the dementia person itself . Therefore psychologists advised not completely rule out the option to provides a care center.

Combining different stages in a dementia center There is a big difference between young and old persons who suffers from dementia. Older people generally have little meaning in society and they form a weak group. However, youngsters are still mobile and have many behavioral problems. They also provide a lot of resistance, so much more attention and care is needed. That is for careers and psychologists quite a challenge. Therefore, it is not sensible to combine these groups. In addition, young people are more aware of their environment. For older people, it does not really matters. To form a group by looking at the level of dementia, has its pros and cons. Mainly those with a medium level, are stimulated by the still incipient dementia patients to stay active. Often the fellow creature perceived this as unpleasant. When there is a distinction made, it can be tailored to their own level. When the dementia is becoming worse, it also means the patient should move and this can cause a lot of stress and anxiety.

By Halima Bourouiss & Meylissa Natawidjaja

GROUP 6 | INTERVIEW: MR RENS BOEIJEN

INTERVIEW: PSYCHIATRICS

Vivium Zorggroep Hogewey in Weesp Nursing Hogewey in Weesp is one of the most famous dementia center in the world. They opened the door in 2012. Mainly the architecture, small-scale housing and the different spheres of life makes the center interesting. It is normal that a demented person struggles with the new home in the first few week. Because the person is confused and do not realize why they are placed in the care center. Some of them will always have the feeling to go back to their old home. To create a familiar feeling and a sense of belonging Hogewey works with different spheres of life. The furniture, food and many other things is matches on various themes: - Christian cottage - Indonesian cottages - Traditional houses - Gooise cottage - City houses

Currently there is room for 150 demented persons in this nursing center. People with dementia stage 5, are eligible for a home and they will stay lasts until the end stage. The homes are equipped for 6-7 people, with a separate bedroom and a common room stay. Each house has two carers. The group is not sorted by looking at the different stages, so a household does not consist of like-minded people. Therefore every household can be very diverse by very active people or people who sits all day in a share. The staff consists of physicians, psychologists, physiotherapists, nurses, specialist in geriatric medicine and 250 volunteers. These demented people can not distinguish night and day, so it is necessary to have 24 hours supervision. Residents are encouraged to participate in various activities. Every week there is a choice of 40 different activities. The average resident is participating in four activities a week. Hogewey also consist of: - a Barber - Physiotherapist

- Music Space - Volunteer organization - Kitchen - Cinema - â&#x20AC;&#x2DC;Snoezel spaceâ&#x20AC;&#x2122; : room to stimulate the senses Despite the concern for the architecture , it still remains a nursing home where you can not walk out. A demented person can walk for hours, by creating outdoor space with a clear circle shaped road. So they do not have the feeling of being locked up in a space. Most of the people have difficulty with orientation, some of them are able to recognise places. That is why carers is very important, to accompany people who are lost. Orientation is also created by placing large letters and signs such as cinema or supermarket. Hogewey is also pleasant for people who are less mobile, for example the building has equal floors and an elevator. One point of focus of the dementia center is the exit. Some residents are still searching for a way to return to their old house.

The exit consists of sliding glass doors and the light from outside can be experiencing as the way out. By placing stickers on the glass, it can be less obstructive. But nevertheless, this dementia nursing center can be experienced as pleasant residential.

With Mr Rens Boeijen Interviewed by Halima Bourouiss & Meylissa Natawidjaja

GROUP 6 | INTERVIEW: MR GIJS LAURET

INTERVIEW: PSYCHIATRICS

Vivium Zorggroep De Stichtse Hof in Naarden

Physical limitations in dementia

Patients in the nursing home

Psychologist for dementia in a nursing home

In general old-age can prevent physical limitations. In dementia are the physical limitations strengthened particularly in the final stages of dementia. The brain cells slowly die from dementia, cognition and physical aspects going backwards. In the last stage you can get fetal position, they can no longer move, talk, feel, hear and see. It is important that patients are active which makes the brain cells are less likely to die.

In the nursing home in Naarden live about 180 patients with advanced stage of dementia. By the format of the patients is no distinction made in stages of dementia. The patients can no longer live independently and they need 24 hour a day guidance. Every patient has their own room and there are also double rooms in the nursing home. In the future they want for every patient their own room. The patients live in a closed nursing home and may use the shared living room and garden. The patients can not only go out without guidance. The nursing home offers meals for all patients and may choose whether they want to eat. There are a number of rooms equipped with a kitchen where the patients can cook by themselves.

The psychologist supports the caretakers at the guidance of the patients. Patients can exhibit a certain behaviour, they can sometimes be angry or sometimes they can be aggressive with a physical attitude. The psychologist analyses together with the caregivers, how did it start, where does it come from and what can we do about it. The psychologist makes a good analysis in order to limit this behaviour in the future of the patient. Most patients are in the further stage of dementia but there are also patients who struggle to live in a nursing home, such conversations are also regularly. The psychologist also takes intake interviews of the life of the patient. He also has conversations with family and friends of dimension patients.

The senses are less when you get older, this is also applies to dimension. By applying different (bright) colors in a room, the patients can better distinguish to objects. The music is important by sound, by singing and dancing remains kept then talk and walk. The patients who not talk very well but they can sing, this allows them to better express their emotion. The scents is important by behaviour problems. With special fragrance bulbs are placed in the individual room, in combination with music the patients calmed down at aggressiveness.

Feeling home in the nursing home Not all patients get used to a new home environment and some patients can do that very well. The patients can bring from home personal objects/belongings to the nursing home, so they can

feel better. The patients can also take part in joint activities in the care home. The patients are not capable to do something for them self, even if they are together with other patients in the shared living room. Visiting patients Anyone can visits the patients in a nursing home, provided you sign up in advance at the desk. There is no ability to stay over in the nursing home also not the partners of the patients. For the most patients brings that confusion or they get restless. They get confused when taking farewell, the visitors will be advised not to visit the patient regularly. The partners who have both dementia are not capable to understand each other anymore. Suggestion from the nurse home in Naarden -A lot of natural light in the building; -Many views from inside; -Not too crowded (they get irritable); -Outdoor area/garden; -Points of recognition do not work, more structure in the building

With Mr Gijs Lauret Interviewed by Halima Bourouiss & Meylissa Natawidjaja

Future In recent years, the demand for small-scale housing , such as the concept of Hogewey increased compared to 10 years ago. And the demand will only increase. Studies have not, however, proven to institutional living is necessarily bad. But smaller-scale live looks nice and interesting. But the most important is still the quality of physicians, psychologists , counselors and caregivers.

GROUP 09 | TYPOLOGY BUILDING

Bethlem Royal Hospital

53 IMAGES

LAYOUT/STRUCTURE

Centered around a courtyard Chapel in the middle

Asylum Time: 1247, 13th century Location: London, UK

PROGRAM

12 cells Chapel Staff accomodation Small exercice yard

PATIENT POSITION IN SOCIETY

Considered as crazy people Chained up to walls Terrible living conditions Malnurishment Punishments

ANALYSIS:

The Retreat, York Quaker Asylum Funded by William Tuke Time: 1796 Location: England

The General Lunatic Asylum Asylum Time: 1812 Architects: Richard Ingleman & Edward Staveley Location: Nottingham, England

Weiss Pavilion Philadelphia Geriatric Center Nursing home Powell Lawton Time: 1978 Location: Noth Wales, Pennsylvania, USA

Corinne Dolan Alzheimer Center Alzheimer insitution Time: 1993 Architects: subsidiary of the Frank Lloyd Wright Foundation Location: Chardon, Ohio, USA

Open central space, Hallways eliminated, Visual access to desired destinations

Separated rooms for men and women Green spaces Gardens Common rooms Activities: writing, reading, farm labouring

Considered as sick people can be helped Work on self-esteem Work on self-control

Built for 80 patients Activities: picking, reading, writing cotton winding Good water supply and plumbing

Considered as sick people can be helped : humanity Good treatment No punishment

324 residents - 48 units Assisted living Nursing care Adult & child daycare Town Square : center of community life Gardens Synagogue, gifts shop, library, art gallery

Humanity and social treatment

24 beds 2 shared living room Activities Paths for wandering

TYPOLOGY: EVOLUTION THROUGH HISTORY By Štěpánka Úlehlová, Catherine Trebes and Lindsay Lallemand

Alzheimer‘s patient Modern treatment: Social, humanity

The care given to the people with dementia have not always been the same as we know it today. In ancient times and up to medieval times, society believed that the dementia patients were peculiar freaks who had been seized by the devil and cursed until they died. Thus, hospitals offered no real cure, for example in England where Bethlem patients were chained up to walls, malnourished, beaten, tortured. It was not until the 18th century when eventually grant that there may be a medical reason, and thus to find a way to heal. A radical change in services has taken place, patients had spacious rooms and common rooms to regain a social life. Daily activities were introduced, such as writing, reading, music, exercise, causing great social and human progress. However, the effectiveness of treatment could not be proved.

The design of buildings also changed, trying to introduce open spaces, reduce walls and corridors to make them find their way easier. A huge work on “What/How it is to have dementia” has been done. Nowadays, the way we treat people with dementia is quite different; they are no longer considered crazy or insane, but as humans whose life fades gradually, humans who need help finding it, not losing it. More and more modern institutions such as the “hogeweyk village” emerge. These institutions offer maximum mobility and opportunity to lead a normal and active daily life. Residents are assisted in maintaining the highest possible level of self-care and independence.

TYPOLOGY TYPOLOGY TYPOLOGY TYPOLOGY GROUP 09 | TYPOLOGY

TYPOLOGY

BUILDING

55 IMAGE

DIAGRAM

FIGURE

SITE PLAN

SCALE

CIRCULATION SPACE

E:\_typology\stringio.jpg

Dementia Village De Hogeweykâ&#x20AC;&#x2DC; in Weesp Architects: Molenaar&Bol&VanDillen architekten, Vught Location: Heemraadweg 1, 1382 GV Weesp, Netherlands family clusters

E:\_typology\Planta0.jpg

Elderly Healthcare Building Architects: Brullet Pineda Arquitectes Location: Salt, Girona, Spain

active core E:\_typology\stringio.jpg

Psychiatric Hospital Helsingor Architects: JDS/Julien de Smedt Architects Location: Helsingor, Denmark

branches, clover structure

Elderly Care Campus Mayerhof Architects: Areal Architecten Location: Mortsel, Belgium

doughnut

Group Home in Noboribetsu Architects: Sou Fujimoto Location: Hokkaido Prefecture, Japan

TYPOLOGY

group homes 0 5 10 20

40 m

TYPOLOGY COURTYARDS

56 STAFF AREA

RESIDENTIAL AREAS

LIGHT

ROUTING

GROUP 09 | TYPOLOGY

6 7

ANALYSIS: 2

The hierarchy of public to private spaces within a building appears to be a significant aspect in facilitating residents with dementia to feel comfortable.

Multiple spaces can include a more homely atmosphere providing patients with different rooms that have different activities. However, for dementia patients, multipurpose spaces can be confusing.

Opportunities for previewing (e.g having an opportunity to view the space before deciding whether or not to enter) give residents a greater sense of control over the environment.

9 3

TYPOLOGY: A SUMMARY

4 4

Outdoor space has to be easily visible from common spaces and circulations areas. This stimulates curiosity and increase independence. Views to the outside help keep residents connected to the time of day, seasons, wildlife, and landscaping.

Staff must be able monitor or view the space, which allows residents to use it very independently.

Inappropriate adjacencies must be avoided, such as bedrooms opening directly off living rooms, which may confuse residents

8 By Štěpánka Úlehlová, Catherine Trebes and Lindsay Lallemand

Going outside keep patients active and healthy. Outdoor space must be easily reachable by patients but also available to be well controlled by staff.

Important things must be highly visible less important must be less notorious.There must be enough light and enough color contrast to allow people to see properly A very simple layout is important.

Glare from lights is not appropriate. Diffuse lighting is better since spotlights can make faces look more aggressive and confuse patients. Daylight is the option, large windows and open spaces are vital.

A few conclusions and recommendations may usefully be drawn on the basis of case studies comparison. The following analysis and summary consists of 9 ideal characteristics of common and shared rooms, outdoor spaces, orientation, navigation and light design. Conlusions are extended by photographs of the cases studies stated above. Besides, a reference to its position in selected building is dedcribed in layouts.

CREDITS

CONTRIBUTORS

SPECIAL THANKS

GROUP

INTERVIEW: PARTER PATIENT(MALE) Norral Khayat Igor Jablan

ADVISORS Mark Hemel, MARCH RA, University Lecturer, Department of the Built Environment Andre Walraven, ARCH.AVB, Assistant Professer UD, Department of the Built Environment INSITUTIONS Blah Blah Blah Dementia Care GROUP

INTERVIEW: PARTER PATIENT(MALE) Liehe Greve Michelle v.d Camma

GROUP INTERVIEW: SPECIALIST Halima Bourauss Meylissa Natawijaja

GROUP

06 09

ARCHITECURE TYPOLOGY Jacco Doest Surian Onder

GROUP

INTERVIEW: PARTER PATIENT(FEMALE) Luajana Baskavic Kevser Culder

GROUP

INTERVIEW: DIRECTOR CARE INSITUTION Lindsay Lallemaud Stepanka Ulehlova

GROUP HISTORY Federico Lezzi Matteo Basso

GROUP

INTERVIEW: EARLY STAGE DEMENTIA Kinga RzeplIinska Hratc Hovanisian

GROUP

INTERVIEW: FAMILY REPRESENTATIVE Ezra Schroder Cinzia Bussola

GROUP

INTERVIEW: COUNCIL REPRESENTATIVE Rick Huijbregts Milan Geutts

GROUP EDITORIAL Seow Yeong Chuan Natalie Cheung Josie How