Description

Dementia affects every fourth person over 65 years of age and the average duration of the illness is around ten years. In some cases the illness can continue for twice as long. During this period around two thirds of all dementia sufferers live at home, nursed and cared for by relatives.

From a medical point of view, the clinical picture of dementia is quickly described. For an unknown reason, protein deposits, so-called “plaques”, develop in the brain and disrupt the transmission of information between brain nerve cells, causing them to successively die. The illness generally progresses through several stages and eventually leads to helplessness and hospitalisation. People with dementia first begin to suffer memory loss, then become disorientated and unable to recognise things; in later stages the illness can lead to a loss of identity and social isolation.

For several years, teams of scientists around the world have conducted intensive research into the key causes of this illness. According to the current level of knowledge, the assumption is that the development of the plaques is accompanied by inflammatory processes. At present there is no known medical remedy. Generally recognised therapies include treatments aimed at delaying the onset of dementia with the help of pharmacological and cognitive therapies and endeavouring to improve the quality of life of dementia sufferers.

More recently, a new tendency has emerged in research in which dementia is considered as a psychological development process and not exclusively in terms of coping with an illness. This allows one to develop positive approaches to dealing with the different individual modes of being of dementia rather than focusing entirely on the cognitive deficits of the sufferer.

The sufferer is aware of the developing onset of the illness from an early stage, particularly as their interactions with their surroundings change. Everyone has a specific relationship to their immediate environment which is influenced by the congruence or fit between one’s personal wishes and needs and the conditions and demands of the environment.[1] A key criteria for this fit is one’s ability to feel competent and therefore independent and safe. Even persons with mild cognitive impairments (so-called MCI patients) exhibit changes in their interactions with their environment. These cognitive impairments lead to errors in one’s memory of places and a reduced ability to spontaneously adapt to new spaces and unknown situations. As sufferers begin to realise these changes, they may feel a sense of shame and inadequacy caused by emotional borderline situations resulting from difficulties in knowing where they are, finding their way or performing normal daily routines.

The home and immediate surroundings of a dementia sufferer may on the one hand become a corset, and on the other provide compensatory elements as, according to ecological psychology, people are influenced in their experiences, thoughts and actions by their environment and where they live.[2] This means that people and their actions are inseparably and mutually linked with their immediate surroundings, a fact that applies to people who are healthy or impaired alike. In order to better understand the behaviour of dementia sufferers and to adapt their living environment better to their needs with a view to enabling them to live independently, we need as much knowledge as possible about the effect of spaces and environments on their complex experiences and actions. At present we are still in the starting blocks. The little we are able to learn at present is limited to eco-gerontological knowledge about appropriate environments for old people and what relatives and carers observe about the sufferer’s interactions with specific environments. Practicable instruments with which to assess the dementia sufferer’s own subjective interaction with different spatial structures and their assessment of the qualities of their environment are still lacking.

 

Memory loss as a threat to identity and everyday life

In the first years of dementia, memory loss and a loss of orientation are the primary symptoms. More complex challenges in everyday life such as making financial arrangements, staying organised and keeping appointments, finding new places and coping with road traffic are the first things to become a problem. Sufferers are generally quite aware of their situation and attempt by avoiding such situations to disguise their first cognitive impairments behind an intact façade so as not to make a bad impression. The topic of dementia is often taboo for the sufferer and possible interventions are met with vigorous denial and stubborn adherence to how things are. They do not regard themselves as ill and believe they can still solve their problems on their own. Over time, however, situations start to arise where sufferers experience difficulties in dealing with everyday actions, creating uncertainty and worry. Uncertainty leads in turn to a loss of confidence and vitality and can eventually cause the person to withdraw into himself and from interactions with others. These deficiencies make it ever more difficult for the sufferer to come to terms with everyday life. Social contacts with friends and acquaintances become suddenly less pleasurable, and communications and reciprocal interactions with their different environments begin to dwindle and are later avoided entirely. The overall pattern is one of increasing withdrawal caused by a subjective feeling of inadequacy. Little by little they begin to lose control of their own lives.

In many cases people with cognitive impairments lose interest in activities and hobbies that were previously important to them and gradually withdraw from actively and emotionally shaping their direct surroundings. To cite a concept by Albert Bandura, the everyday world of people in the early stages of dementia is characterised by a loss of confidence in their own self-efficacy.[3] They lose confidence in their own competence and ability to deal with things as a result of the difficulties they experience, which to them seem uncontrollable. The doubts in their own self-efficacy allow stress and worry to become overpowering. Their own environment is experienced less and less subjectively as being meaningful. This loss of self-confidence and the increasing inability to master everyday activities is usually closely linked to the person’s progressive withdrawal. In such situations changes to the person’s everyday life and environment feel most threatening. The feeling of helplessness is exacerbated and with it the problem of self-identity: am I still the person I once was, what can I still do, what comes next?

Bidding farewell to the familiar

The sufferer’s interactions with their environment are dominated more and more by stressful situations. In everyday activities they begin to increasingly reach the limits of their physical abilities and find it steadily more difficult to keep a grip on their environment as complex thought processes become more difficult to follow. The repeated occurrence of irresolvable everyday problems results in emotional stress reactions, which do not go unnoticed by their surroundings. These subjective responses to the symptoms of the illness often cause conflicts with loved ones, partners, family and relatives. Because the sufferer’s actions are rarely understood by the people around them, their social context has a particularly significant influence on their self-esteem. It is as if an irresolvable vacuum stands between the sufferer’s intentions and the observed behaviour. Relatives need a great deal of background knowledge of the illness and practical help in order to better understand and communicate with the sufferer. During this phase it is particularly difficult for the family to come to terms with the inner world and helplessness of the sufferer, particularly as their behaviour follows no logical pattern. It is difficult for them to accept and understand the mistrust, aggression and anxiety that they may be confronted with. For the relatives it inevitably reaches a point where they will have to bid farewell to the familiar behavioural patterns of the person as the key characteristics of their personality gradually recede. Friends and relatives will need to learn to tolerate often strange and unusual behaviour.

Acceptance

The once active and self-driven relationship with personal contexts, spaces or relationships and the continuation of hobbies such as working in the garden become increasingly impossible as the illness progresses. Paradoxically, the more a person begins to lose their sense of identity and will to actively control and shape their environment, the more important their environment becomes for them as a stable and comprehensible background. The constancy of their physical surroundings gives dementia sufferers a feeling of stability and security. In this phase, the long-term memory begins to take over comprehension of surroundings while the “consciously and actively planned present” recedes. The focus shifts from actively adapting to surroundings to tolerating and accepting them.

This viewpoint has in the meantime been taken up in discourse on the professional care of dementia suffer­ers and the building of appropriate facilities. After a controversial exchange of opinions in the past, professionals have since reached agreement on what characteristics are important for facilities for dementia suffer­ers. Institutions appropriate for dementia sufferers should take into account and offer three components: the optimal built elements of the facility and ward, the psychosocial milieu and the organisation of nursing and of how people live together. In professional circles, milieu therapy models are currently much discussed as a way of designing an environment that is “appropriate” and “tolerable” for the sufferers.[4]

The environment should adapt, not the sufferer

Dementia limits the degree of independence, self-control and ability to cope with one’s surroundings. Providing appropriate living quarters is difficult when perception, cognition and orientation are so impaired that the entire person-environment congruence has shifted out of balance.

The close relationship between a person and their environment has become so far removed from its previous form as a result of the illness that previously active mechanisms for coming to terms with one’s environment give way to coping mechanisms such as avoidance and acceptance. Dementia sufferers are no longer able to react flexibly and appropriately to situations in their surroundings and to engage with reality. They can only react intuitively and emotionally to situations around them. Without any form of self control it would seem that the sufferer is entirely helpless. The built environment therefore presents a constant challenge for dementia sufferers, its level of intensity affecting their well-being and perception of stress. Their sense of well-being is best when the stimulus provided by the active and compensatory aspects of the surroundings is perceived by the sufferer as consistent and they are subject to neither an excess nor a lack of stimulation. As the illness progresses, even once familiar surroundings can suddenly be perceived differently and even mutate to nightmarish scenarios.

From a neurobiological point of view, this change in perception can be explained by the fact that our direct perception is not solely a real-time response but is also informed by long-term interpretative patterns from the past. Dementia sufferers may therefore experience a dislocated perception of the present situation produced by the “disjointed” brain. Our experience of the world is scenic and that of dementia sufferers is too. The loss of short-term memory means that they are not able to adapt and compensate in the same way as they used to. In situations of unease, patients may fall back on behavioural patterns, such as searching for something, that are rooted in an attempt to escape from momentary feelings. This behaviour is often described as a tendency to “wander away”, with the patient acting unsettled and roaming around. The desire to “go home” can be interpreted as a signal that the person feels lost at that moment and seeks a place of comfort and security.

The guiding principle for the creation of environments appropriate for dementia sufferers is to focus on the everyday needs of the patients and to precisely observe the continual changes in their living environments. This point of view opens up new perspectives for the care and housing of dementia sufferers as it allows one to observe the complex emotional and social needs more clearly, and consequently to create more positive everyday experiences and environments for the patients. In a more coherent and predictable environment, dementia sufferers can expect to feel more competent in what they do and as a result the avoidance mechanisms they have developed and negative expectations of their self-efficacy may gradually recede.

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The expectation of self-efficacy is one of the key aspects of cognitive theories that explain human behaviour

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Originally published in: Eckhard Feddersen, Insa Lüdtke, Living for the Elderly: A Design Manual, Birkhäuser, 2011.