Recognising the other world

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Recognisingtheotherworld

Successful concepts for nursing dementia patients -

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Recognising the other world

Successful concepts for nursing dementia patients

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Recognising the other world

Activity aids for use in healthcare

For an improved quality of work in nursing

With changes in the population and the rise in the number of elderly people resulting in a rising number of chronically ill and multimorbid individuals, the subject of ‘health care’ has increased in significance for both the individual and society. This higher level of importance, the new challenges and the rising demands on nursing mean that answers are needed on what form nursing should take in the future.

The working conditions in the nursing industry are characterised by elevated physical and mental stress, time pressure, awkward working hours, high numbers of personnel absent through illness and personnel rapidly leaving the profession. These stresses on the personnel also directly affect the quality of the work, thus also affecting those in need of care.

While the challenges in nursing require a solution as part of a larger society and must not be tackled alone, those who practise nursing should and must recognise and take advantage of the organisational freedom they have to overcome current and future challenges.

Following up the holistic approach of the memorandum ‘For a new quality of working in health care’, the Institute of Work and Technology in Gelsenkirchen has been developing six topics together with its part- ners as part of the project ‘practical guides for nursing’. These fields represent the most significant stresses for employees:

1. Time pressure in nursing,

2. Leadership,

. Communication and interaction,

4. Compatibility of family life and profession,

5. Nursing individuals afflicted with dementia,

6. The debureaucratisation of nursing.

Together with practitioners from hospitals and both inpatient and outpatient health care facilities, practical guides such as this have been developed to provide incentives and encouragement by allowing an exchange of knowledge for everyday working life, thus contributing to improving working conditions. To create a close connection to and allow for a constant exchange with actual health care practices, the authors alternated during the course of the project between conducting workshops with the support of care facilities and conducting evalu- ation phases. The process was less about generating new knowledge and much more about transforming theoretical and practical knowledge that was already available into a form more useful for nursing facilities. It was important for everyone involved to look at material and aspects within the thematic fields that had potential for improve- ment or change on an operational level.

Six practical guides are the result – guides that provide practical recommendations and encouragement for nursing practices, clarify the reasons for doing so, demonstrate the circumstances, show examples of good practice and act as a provider of incentives and ideas, ena- bling new paths in nursing to be laid and, if needed, to be taken.

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4 Contents

Foreword

Less stress for nursing personnel – better care for patients and resi- dents

The consequences of our aging society are noticeable in no small measure when we look at afflictions such as dementia. The probability of becoming affected by dementia rises with advanced age. Dementia will continue to play a growing role in the future for the nursing profession.

Working with individuals with dementia is associated with specific stresses. Those afflicted do not only need intensive support and stimulation, but also pose a wide range of comprehension and organisational problems for nursing personnel in inpatient and outpatient care facilities as well as for employees in hospitals. This practical guide is designed to help in this regard. The result of a project of the Initiative Neue Qualität der Arbeit (INQA), it takes a look at successful concepts in nursing individuals affected by dementia and the ways that stress in nursing can be reduced. The key question here is, what defines good work with dementia patients and improves the work environment at the same time?

This practical guide concentrates on concepts that are known to have a positive effect on working conditions and the stress experienced by nursing staff or that seem to be useful for practical applications. The recommendations expressed do not reduce the value of other concepts and should not under any circumstances be understood to be preferable to other approaches. During the discussions

with the nursing facilities involved in the project (both in and outpatient care institutions as well as hospitals), it was revealed that many of the latest developments started in inpatient facilities and are taking root at a rather slow pace in hospitals. This also applies even if the institution possesses specialised geropsychiatry or geriatric wards.

Outpatient nursing facilities and, in particular, general hospitals without wards such as these have often only tackled the question of how they should structure the care of dementia-afflicted patients to a limited extent. For this reason, attention was paid when defining the subjects so as to ensure that the recommendations could fundamentally be implemented in all fields of nursing. The way that the recommendations are implemented in more detail may, however, vary from institution to institution.

This practical guide begins by covering the importance of dementia in today’s society (chapter 1). The stresses for nursing personnel are then analysed in chapter 2. In chapters to 7, principles and concepts will be examined that provide a deeper look. These principles and concepts are aimed at improving the way dementia patients are cared for, all the while improving the working conditions of the nursing personnel. An important additional aspect is then covered in the form of working (together) with relatives, which may indeed be a source of stress, but can and must also be structured to have a positive effect (chapter 8). Fi- nally, chapter 9 contains explanations on the significance of the basic conditions for working well with individuals afflicted with dementia.

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6 The importance of dementia

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1 The importance of dementia

Spread

Dementia and its consequences are of great importance in terms of their social impact. The number of individuals affected by dementia has already exceeded one million in Germany today [1]. According to estimates, this will rise to around 1.4 million by 2020 [2]. There are over 200,000 new cases a year [1] and the proportion of individuals affected rises considerably as people age.

Proportion of population with dementia according to age group

5 % 0 % 25 % 20 % 15 % 10 % 5 %

0 % age 0ver 90

85 – 89 age

80 –84 age

75 –79 age

70 –74 age

65–69

Robert Koch-Institut: Gesundheitsberichterstattung des Bundes, Heft 28: Altersdemenz, Berlin 2005

More than 400,000 of those affected live in inpatient nursing facilities. This means that more than 60 % of residents suffer from dementia. Of course, outpatient care facilities are also confronted with the issue of dementia patients. Initial estimates assume a percentage of between 10 % and over 20 % of the patients [1]. Hospitals too frequently admit dementia patients, be it because of acute geropsychiatric crises or, as is more frequently the case, due to psychosomatic illnesses. Conservative estimates assume that 10 % of all individuals treated in a hospital are sufferers of dementia [] while units that generally treat older patients have a larger proportion. In any case, there is hardly an institution around that does not have to face the question of how they should deal with the challenges related to dementia (or at least wouldn’t have to!)

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8 The importance of dementia

The other definition of “normal” and unsuccessful routines

From a nursing perspective, the condition of dementia itself is not the main issue, rather the question of how each patient should be supported based on their condition.

This means that the nursing methods are determined by the consequences of the condition for the dementia- afflicted patient. This work is characterised by a certain

“strangeness” or “differentness” [4]. This perception is related to the peculiarities that are labelled as “challenging behaviour”. [5, 6] The following different forms can be distinguished:

– Agitation (excessive, non-specific behaviour, repetitive movements)

– Wandering (constant or frequent walking around, running away)

– Aggressiveness (physical, verbal or sexual) – Vocal disorders (frequently or constantly repeated

expressions, screaming, shouting, asking, grumbling, mumbling etc.)

– Passivity (apathy, social and emotional withdrawal) The usual routines rapidly fail when faced with these characteristics and are a considerable challenge for nursing staff in particular – individuals afflicted with dementia are reliant on intensive support, stimulation and protection against being threatened by others or endangering themselves, all in an unfamiliar environment. They also present nursing personnel with communication, comprehension and organisational problems. Nursing personnel often find it extraordinarily difficult to understand what patients are trying to express, but it’s this understanding that forms the basic foundation for individual nursing support [7].

The modern view is that these characteristics are not caused “automatically” by pathological changes in the brain. Instead, we suspect that there is a complex process taking place, during which a great many different influenc- es have a role to play. The way they work together triggers a particular and individual behaviour pattern. Nursing sci- ence provides us with a “needs-driven behaviour model”

to explain the links (see diagram). It shows us that the behaviour of individuals suffering from dementia, which others may find disruptive and strange, is not “ridiculous”

or “crazy”. Instead, it shows that a good explanation for this behaviour exists, even if attempts to explain each and every case are not successful.

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Needs-driven dementia-compromised behaviour model, NDB-model

Background factors

Dementia-compromised functions:

– Circadian rhythm – Motor ability – Memory – Language Health state

Demographic variables – Gender

– Race and ethnicity – Marital status – Education – Occupation Psychosocial variables – Personality

– Behavioural reactions to stress

Proximal factors Physiological need state – Hunger/thirst – Elimination – Pain – Discomfort – Sleep disturbance Psychosocial need state – Affect

+

– Match of assistance to ability Physical environment

– Light level – Sound level – Heat index Social environment – Staff mix + Staff stability – Ward ambiance – Presence of others

“Challenging behaviour”

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10 Stresses on nursing staff

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2 Stresses on nursing staff

Our knowledge of the work stresses placed upon professional nursing staff when work- ing with people afflicted with dementia is limited. However, it is possible to differenti- ate between general stresses and specific stresses.

General stresses result, for example, in circumstances related to lack of time, employee management and internal communication. For example, a lack of time has a particularly negative effect, as patients affected by dementia cannot simply be “put off” until later; the personnel must react to the needs of the patient expressed here and now. If this is not possible, the situation may become stressful for the nurse too.

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12 Stresses on nursing staff

What are the specific stresses that arise when nursing individuals afflicted with dementia? The following causes were identified during a recent examination of the conditions that dementia patients live under:

– ill-informed nursing personnel (regarding the daily structure, established reactions toward challenging behaviour etc.) that prevent or delay a rapid or effective reaction.

– lack of participation of the patients in nursing activities;

– tendency to wander (leaving the ward due to disorien- tation and motor restlessness)

– other challenging behaviour (undressing, urinating in public areas of the ward, assaults etc.) that leads to feelings of helplessness and is emotionally stressful – the necessity of limiting personal freedoms.

These dementia-related stresses were also often specified by nursing institutions (see info box). There are sometimes differences between clinics and nursing homes in the way they experience stressful situations. Geriatric or geropsychiatric wards in clinics often experience the pressure to “restore” the patients within a short space of time, with nursing personnel often being overburdened in dealing with this. This kind of issue, however, is hardly ever reported within nursing homes. The more prominent stresses here are related to a lack of internal communication and documentation. Stresses such as dealing with relatives or a lack of support from the management are associated with this. Specific stresses seem to have a stronger effect in hospitals, whereas in nursing homes, problems related to communication and organisation play a defining role.

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Causes of stress when caring for dementia-afflicted patients

Workshop results

– Lack of knowledge of the person’s life history – Lack of knowledge on the part of the nursing per-

sonnel about the condition – Poor condition prognosis

– Long-term relationships, particularly in nursing homes

– Build-up of relationships made more difficult by short-term stays and acute cases, particularly in clinics

– Understanding the patients is very difficult – Tendency to wander, failure of usual interventions – Restraints of personal freedom

– Dependency of the patients on the nursing staff – Relatives and their expectations towards the clinic

(recovery)

– Pressure from relatives, poor communication with them

– Lack of support from the management – Too little time

– Lack of communication between professions and wards within the institution as well as among nursing staff

– Structures and processes that make it considerably more difficult to work individually, e.g. strict time limits, responsibilities

– Documentation more oriented toward medical purposes with little individual content – Disadvantageous environmental conditions

Recognising the other world 1

When arranging the various stresses, three main focuses become clear:

1. Stresses related to the relationships with the pa- tients, particularly when confronted with challenging behaviour and changes in communication and the consequences of these changes

2. Stresses related to the relationships with the rela- tives of patients

3. Stresses related to rooted structures and processes in the institution

The following recommended principles for working with persons affected by dementia tackle these stresses and aim to improve the working conditions of the nursing staff.

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14 Many concepts, little concrete knowledge

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3 Many concepts, little concrete knowledge

Having concepts for working with dementia patients can help to enhance the nursing process greatly. They provide a framework on which the work can be based and help to structure the work.

However, these concepts bring with them certain dangers, especially if they are incorrectly implemented. The selection of suitable concepts and their serious and consistent implementation play a decisive role. A mish-mash of unre- lated concepts that possibly even contradict one another is no use to anyone. However, even a serious, comprehensive introduction and implementation of a certain concept for nursing dementia patients is no panacea. Which sole concept might be “the right one” to use for all patients suffering from dementia? A sole concept, as good as it may be, is never a replacement for providing individual care for each individual patient. As such, each and every situation must be judged on its own merits to be able to implement a concept effectively. Whether particular measures are suitable for a particular person must be established on an individual basis, and this must be checked again and again. Proceeding in this way is certainly much more helpful to dementia patients than implementing a single concept perfectly and “by the book”. It allows the nursing staff more freedom to react to the needs of each individual patient.

It is not possible to take some of the most current concepts into consideration on the following pages, such

as conscious arrangement of the patient’s milieu, milieu therapy, the Socratic Method or Dementia Care Mapping.

This practical guide does however draw attention to three basic elements regarding building and maintaining relationships with dementia patients. These include the Vali- dating Attitude, the Life History Approach and Stimulation of the Senses (chapters 4–6). It also highlights the importance of professional standards (nursing process and primary nursing, chapter 7) and outlines a new approach towards working together with relatives (chapter 8).

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16 Many concepts, little concrete knowledge

Which image of the human being does the concept follow?

Generally speaking, a concept must be examined for its image of a human being with regards to the person affected. In general, it is possible to differentiate between two fundamental stances towards dementia or individuals with dementia – the biomedical approach and the person- centred approach.

Biomedical approach

The pure biomedical approach views dementia as a progressive illness of the brain. Confusion, disorienta-tion and changes in behaviour and communication are the di- rect consequences. Any “peculiar” expressions are considered to be symptomatic, i.e. an expression of the illness.

It is only recently that the school of thought where many different internal and external factors are considered to influence the behaviour of dementia patients (see diagram

“Needs-driven dementia-compromised behaviour model”) has found more acceptance. This puts the pure biomedical approach strongly into question.

Person-centred approach

The person-centred approach does not differentiate between “normal” (healthy, not suffering from dementia) and “abnormal” (ill, suffering from dementia). The patient continues to be viewed as a person, even if the ability to think in abstract terms, communicate “normally” and behave inconspicuously cannot be observed. Each individual, including those that appear confused, who behaves in a peculiar manner or does not speak, is a person with their own world. This world is of no less worth than the worlds of other people [2, 8]. It is only this perspective that forces us to want to understand a dementia patient and conforms to the concept of nursing. This is why nursing dementia patients always require skills such as empathy and patience in communication. Concepts, activities and principles that do not measure up to the requirements of this image of a human being are not to be considered.

What practical experience exists for this concept?

It is also important to know what practical experience is available with particular concepts. Concepts that may be well thought through in theory but have not been tested for everyday usage are of little use in practice. The means that are necessary for implementing the concept should also be considered – they must be feasible given the personal and economic conditions present.

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Which research results are available for the concept?

A number of research reports are available for some practical concepts, even if they are not particularly clear in most of the cases. Sadly, many concepts and measures have only been examined superficially. In most of the cases, there is no clear, concrete knowledge about their effectiveness. Nonetheless, scientific findings have been taken into consideration for the selection, as having a concept be viewed positively by nursing personnel is not sufficient. If research findings show that the concept can have negative consequences for nursing staff, it would hardly be possible to justify its application.

Can the working conditions of the employees be improved using the concept?

Ultimately, whether a good concept also helps to improve the working conditions of the nursing personnel also plays a decisive role. A concept that, although possibly having a positive effect on the conditions of the patients, also increases the stress on the nursing personnel, will not be successful in the long-term. This is because the working conditions of the nursing personnel will inevitably have clear repercussions on the quality of the nursing. In general however, it is difficult to prove the link between a concept and work stress. This is why practical experience is of particular importance here.

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18 Appreciation and confirmation

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4 Appreciation and confirmation

“Validation” has become a frequently used term in the last few decades, especially in inpatient care institutions.

There is hardly a facility around that does not at least oc- casionally make use of this concept.

The decisive element of validation is an accepting, appreciative and reinforcing attitude. Whereas it was usual years ago to confront dementia patients head-on with our reality, validation focuses on the appreciation of the patients and their experiences [9]. Communication techniques are also described that vary depending on the stage of the condition. They serve to help understand the feelings of the patient and acknowledge them (“validate” them) so as to reduce stress and increase the level of selfesteem. A variation developed in Germany is Integrative Validation (IVA). It places an emphasis on the remaining faculties of the patient, which are activated and integrated into the nursing programme. IVA is particularly well-suited to patients in the early and medium stages of dementia [10, 11].

The fundamental principle of validation is that what the dementia patient experiences is part of their own reality, regardless of whether it deviates from our own. A fundamental acceptance of this “alternate reality” is required before we even begin to try and develop a truly individual nursing structure. If nursing personnel cannot even take the reality of the patient seriously, why should they base their nursing practices around it? This means that em- pathising with the subjective situation of the dementia

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20 Appreciation and confirmation

patient is a decisive element. The perceived work load of dementia up until now will benefit the most from the drops if we do not continuously try to bring “disoriented” concept of validation.

individuals “back to reality”. Accepting that the “other reality” – as incomprehensible or absurd as it may appear to us – is as justified as ours reduces the stress considerably. This attitude can be effective in homes, clinics and when patients are being visited. It harbours an immense amount of potential in helping to treat each individual in a humane manner. It is possible that those hospitals in particular that have had little to do with the subject

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Example of validation:

a scene from an inpatient nursing facility

A resident is sitting in her wheelchair at the table in the breakfast kitchen. Whenever a person enters the kitchen, she lifts an arm as if to say hello, calls a word and makes eye contact. She usually has a positive and joyful attitude, and this behaviour means that she enjoys a great deal of positive contact.

If the resident is not doing well, she

“moans” quite extensively. People try to get away from her more quickly, which in turn increases the level of “moaning”.

One morning, she is looking very sad and, her voice sounding like she is crying, says,

“My foot, my foot, it’s hurting so much…”. An employee of the clinic leaves the room with a frown on his face, which shows us that the personnel have likely often tried to cater to the resident.

An employee then sits with her, looks at her and sees that her face is full of worry. She seems agitated, troubled. The resident places her hand in the employee’s hand, which the employee has offered to her with no pressure to accept by placing the back of her hand and shaping it like a bowl on the table:

Employee: “Your foot is really hurting?«

Resident: “Yeeeees!«

The wailing becomes louder, the expression on her face changes.

Employee: “You must be really worried!”

The resident answers once again with a

“yeeeees”, but this time more quietly, accom- panied by a nodding of the head.

Employee: “You need help now?”

“Yes”, she replies, “get the doctor to come!”

Employee: “OK, we’ll let the doctor know.”

“Yes, he’s coming at lunchtime”, the resident answers.

The employee notices that everything has already been clarified and organised. A colleague just entering the kitchen who hears the information, nods in acknowledgement.

Employee: “That’s great! He’ll help you.”

She begins to cry again. “The doctor is coming.” she says, and shakes her head. The employee has the feeling that something else has triggered this agitation.

Employee: “You’re worried about that too!”

The resident looks relieved and answers with a clear “yes!”. She grabs her skirt, lifts it up and, looking worried again, says, “Just look at this!”

The employee sees a large coffee stain on the skirt.

Employee: “You’ve got a big stain on your skirt!”

Resident: “Yes, and the doctor’s coming.”

The pains in her foot are no longer of importance.

Employee: “When the doctor arrives, you want to be clean!”

Resident: “Yes!”

Employee: “When we go to the doctor, we always need to be clean.”

Employee: “It’s good manners.”

Employee: “That’s the way you’ve always been.”

Resident: “Yes!” Her face progressively

becomes more relaxed, she appears relieved.

Employee: “You’d like to do that today as well!”

The nursing colleague stays in the kitchen and the employee gives the information – slowly, so that the resident can keep track, the employee explains the situation to the nurse, always maintaining eye contact with the resident.

“Mrs. K. has foot pains, the doctor is coming this lunchtime. Mrs. K. has a coffee stain on her skirt. She’d like to wear a clean skirt for when the doctor comes. She’s always been clean when she’s gone to the doctor, this has always been important to her.” The resident constantly nods in agreement while the employee speaks. The nurse reacts positively.

“I understand what you mean, I think that’s important too.” The resident is beaming, she feels like she’s been understood.

[12]

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22 Life history is an important connecting factor

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5 Life history is an important connecting factor

Our knowledge of a patient’s life history is of particular importance when nursing patients with dementia.

Knowledge of fundamental themes in their life and their connections can make a decisive contribution to structuring the nursing programme in an individual fashion. This background knowledge can provide a better understanding of certain behaviour and expressions in many cases.

Ultimately, only this allows us to cater for individual needs in nursing [11, 1].

Working with a patient’s life history as a basis can be oriented towards conversation (individual and group discussions) or activities (familiar everyday activities such as housework or singing together etc.). The use of meaning- ful, private objects such as photos can play an important role. They are used as so-called “triggers”. These familiar and recognisable objects help to build bridges to the past and can have an activating, stimulating or calming effect.

For example, for people who grew up on a farm or have worked in farming, an appropriate trig- ger may be products from a farm.

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24 Life history is an important connecting factor

Practical example

Activation using life history in an inpatient nursing facility:

The residents are individually spoken to directly for a brief moment (for example, before mealtimes). The employees use particular materials (perhaps cooking utensils, gardening tools, fruit) to “trigger” a discus- sion on the subject. Questions such as “What do you think of when you see this?” encourage the residents to activate their memories and express themselves. Expe- rience shows that this increases their level of attention, which then makes it easier from them to concentrate on their meal.

Lucky dip: A bag is filled with objects that are known to have a special meaning for each resident. The resident is encouraged to feel around the unseen contents and talk about them.

Basing the care of dementia patients on their life history means in particular to:

– find out relevant information about the person’s life history and its significance for that person, – interpret expressions based on this background, – make use of activities and objects relevant to the pa-

tient’s life history in an effective manner and

– provide individual care within the scope of the nursing process.

Factors that do not constitute “life history work” alone

This “life history work” is sadly often limited in practice to the use of a small number of isolated elements such as a life history file. This file often only contains dry, raw information about particular events during the patient’s life, such as their birth, school, job training, marriage, war, children, job or the death of their partner. The significance of these events for the patient is often unexplored and the

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information is not made use of. Decorating a living space with objects from the past is not in itself an effective use of life history. Each life history is unique and requires work to understand it.

Preparation for use of the life history

It is important to recognise that both patients and nursing personnel profit from nursing care that is oriented towards the patient’s life history. A lack of background knowledge about the life history of the patient makes it even more difficult to understand a dementia patient’s expressions than it was before. Working with relatives often has a special role to play (comp. chapter 8). The information provided by relatives can play a decisive role, especially in those cases where dementia patients are no longer able to talk about their own life history.

Life history work is nothing new, especially for nursing homes. Many institutions have been covering this subject for a long time. The conditions for working according to a patient’s life history are considerably better in nursing homes than, for example, clinics. However, hospital nursing staff are particularly reliant on knowledge about the life history of a patient and on experience in using this knowledge when the patient is admitted. They often complain about a lack of information and the lack of time to resolve this deficit. It is absolutely critical that this information is provided at the necessary communication points, i.e. between nursing homes and the clinics admit- ting the patient. Hospitals that have not devoted enough resources to this issue ought to be encouraged to refer to information of this type more extensively and prepare a care plan that is oriented towards the patient’s life history.

“The patient’s life history told us that the resident used to be a journalist. We gave her a pad of paper and some pens, and she began to write. This was recorded in the care plan.”

Statement from an interview with an employee of a nursing home making use of life history orientation [12].

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26 Stimulating the senses

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6 Stimulating the senses

There are various opportunities to make contact with dementia patients and support them by stimulating their senses, even if the condition is fairly advanced. It helps to form and structure relationships and communicate with the person effectively. Examples are basal stimulation, snoezelen and music therapy.

Basal Stimulation

Basal stimulation is a concept for making contact and supporting people with difficulties of perception, move- ment or communication. It is assumed that these elements are closely intertwined. Dementia patients in particular whose condition is in an advanced state often suffer from noticeable limitations in these capacities.

Basal stimulation is the targeted stimulation of all senses:

touching, smelling, tasting, seeing, hearing, balance etc.

These exercises can be integrated well into the nursing programme. For example, all of the senses can be stimulated individually while the patient is being washed – be the stimulations of an activating or calming nature, depending on the form they take. The decisive advantage of basal stimulation is that it requires practically no extra materials and the surrounding environment is also largely unimportant. This means that basal stimulation can be used for patients to equal effect at their home, within nursing institutions and in clinics. Examples of its use in practice show clearly that not only the patients, but also the nursing personnel have positive experiences in using this technique, allowing for a higher level of job satisfac- tion. Training courses are offered to introduce the concept..

“Both I and the resident find basal stimulation relaxing while I help the resident with his hygiene rou- tine. Mediterranean music helps to intensify the sensations.”

Statement from an interview with an employee of a nursing home making use of basal stimulation [12].

Stimulating the senses

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28 Stimulating the senses

Snoezelen

Snoezelen (pronounced snoozeln) is another concept for getting in touch with the various senses. Light effects, vibrations, music, smells and touch sensations are used within the confines of a peaceful atmosphere. A wide variety of materials are used for this purpose. The imagi- nation hardly knows any limits. The aim is to feel well and relaxed. Originally, snoezelen was provided for helping ex- tremely disabled people to relax. Its use has been increas- ing within nursing homes in Germany for a long time now, especially for people with dementia. There are either special snoezelen rooms, or the materials needed are brought to the residents within the home using a snoezelen trolley.

Experience shows that specially equipped rooms are less frequently used, whereas “mobile” snoezelen trolleys are much more easily accepted by the nursing personnel.

One of the problems with snoezelen, however, is that it has a very shallow theoretical basis. Practically no scientific studies have been conducted regarding its effects on patients. Our knowledge on the subject is almost exclusively limited to reports of experience, which are nonetheless often very positive. As such, the effects on each individual patient must be closely observed whenever snoezelen is applied.

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Music therapy

The findings from music therapy are also being increas- ingly used for people afflicted with dementia. Music is a means of communication. It stimulates memory, helps to make contact with others, can be stimulating or calming and can aid concentration. Music and singing can help contribute to avoiding monotonous routines and improving the standard of living. The connections to the life history-based nursing (comp. chapter 5) are obvious – making deliberate connections to known preferences and avoiding music that the patient does not like are only possible if the appropriate knowledge is available.

Sensory stimulation concepts such as these must, however, be used in accordance with each individual situation based on the nursing process applied. The aim should not be to use interventions such as these for dementia patients as a general rule – they are not a panacea. Ap- plied in a targeted fashion and adapted to the individual situation, they can help open new channels of communication with the patient. While inpatient nursing facilities sometimes make use of these possibilities, they remain unexplored territory for hospitals with no geropsychiatric or geriatric wards. Proper trials – for example with basal stimulation – may, however, produce positive results.

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0 Building and shaping stable relationships

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7 Building and shaping stable relationships

The principles of the validating attitude, life history-based approach and sensory stimulation must be adapted on a case-by-case basis to conform to each patient’s nursing programme.

The nursing process is the fundamental method of professional nursing. It is as much about relationships as it is about solving problems. Particular value is placed on structuring the nursing process professionally when the planning and organisation of the work is carried out with primary nursing in mind. This complex nursing system may be linked to other elements (comp. chapters 4–6 and 8) and integrated individually depending on the patient [14, 15].

Primary nursing means that:

– Each resident of a nursing home, patient in a clinic or at home suffering from dementia has an assigned nurse that is responsible for providing all of the necessary care as long as the patient is being cared for. The nurse knows the person they are caring for well.

– The same nurse has control over the nursing process and is responsible for establishing what is needed in the nursing process and finding out about the life history. The nurse plans the interventions to be applied, implements them him or herself as far as is possible

and constantly evaluates the entire process. The nurse is also a point of contact for relatives and other profes- sionals involved in the care process.

– The primary nurse accepts responsibility and feels a sense of obligation.

– This responsibility does not end once his or her shift is over. It lasts 24 hours a day, 7 days a week. Any changes made, for example to the care plan, may only be made by the primary nurse personally or may only be made with his or her permission.

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2 Building and shaping stable relationships

The introduction of primary nursing is associated with long-term development processes for the entire organisation. Concrete developments must be made while taking the conditions onsite into consideration without abandon- ing the principles of the nursing system. A feasible form must be found for each field of practice. Its implementation will likely take a different form in hospitals than in inpatient nursing institutions, where considerably longer- term relationships develop. Nonetheless, clinics should be encouraged to put primary nursing into practice.

Possible signs that primary nursing is being applied:

– The agreement between the patient and institution contains a guarantee that the patient will have an assigned nurse and specifies this nurse by name.

– The primary nurse is named in the documentation.

– Relatives know who the nurse responsible for their family member is and approach this same nurse with any questions they may have.

– Should a third party ask other employees questions regarding the patient, these employees will refer them

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to the assigned nurse instead of providing the informa- Primary nursing that is truly put in practice and works can tion themselves. greatly improve the quality of care, as the entire proc- – The assigned nurse is, of course, present and involved ess is controlled and overseen by a single responsible

at nursing rounds, case meetings etc. person. Even if there is an initial lack of certainty as a – Other employees adhere to the assigned nurse’s plans result of the introduction of primary nursing during a

in his or her absence. transitional phase (as is always the case with any fundamental change) or if it seems too overburdening, the clear structure of responsibility and the improved clarity of the situation will help to later unburden the nursing personnel and contribute towards their health.

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4 Working together with relatives: transparency and “caring together”.

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8 Working together with relatives:

transparency and “caring together”.

Contact with relatives of the patient is an everyday part of the nurse’s work, wherever they may be working. This contact is often considered to be stressful in clinics, nurs- ing homes and outpatient nursing services. This applies to both non-management and management nursing person- nel.

Problems from two perspectives The nurse’s perspective:

– Relatives are unpredictable, “suddenly turn up”

and make demands

– Nurses feel like they are treated like servants – nurses are drawn into family conflicts by relatives – Relatives make accusations, criticise excessively

and have unrealistic expectations The relative’s perspective:

– Relatives don’t have a clearly defined role and are relatively powerless

– Their specific needs as relatives are not taken into consideration, they’re treated like visitors, are not part of the process.

– They’re worried that their relatives are not being taken care of properly and want more control.

– Often have feelings of guilt [16, 17]

The presence of relatives is often appreciated if they help to unburden the nursing personnel and accept part of the work. Sometimes, relatives’ evenings or consultations are the only visible elements of relatives’ participation, whereas daily routines are marked by a co-existence full of conflict. Situations such as these are particularly un- satisfactory if the dementia patient suffers as a result of tension or distance between the nursing personnel and relatives. Nursing staff and relatives rely on one another – how else, for example, can nurses build a profile about the patient’s life history if the patient cannot talk about it personally any more? Relatives must also trust in the fact

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6 Working together with relatives: transparency and “caring together”.

that the nursing personnel are treating the patient professionally and humanely. Both sides must work together in the interest of the dementia patient. Switching perspective and understanding the “other side” plays a decisive role in achieving this, a process that must be kicked off by the nursing personnel and institutions. Two decisive elements may contribute to fundamentally changing the situation for all involved – transparency and a culture of “caring together”.

Transparency

Caring for a patient at the patient’s home provides a relatively high level of transparency for relatives. The relatives can view the nursing records and are frequently present during nursing activities. Together with the patient, they determine the rules and framework that the nursing staff can adhere to. This is a quite different story in homes and hospitals – relatives often see these institutions as being confusing, unclear, disorganised and frightening. Oth- ers make the rules here. They’re not part of it – at best, they’re just guests. Nonetheless, many relatives are greatly interested in the well-being of their relatives, want to exert influence and contribute. It is the nursing institution and clinic’s duty to ensure that there is transparency for the relatives. This includes being able to view the records (provided the patient has given his or her consent) and providing a steady flow of information, including about the illness, prognosis and planned discussions. This culture of openness must be actively supported by the institution. This helps to avoid a lot of conflict potential, thus reducing the stress load for all.

Practical example

Open doors at Ernst-Emmert-Seniorenzentrum (Duisburg)

The team leader’s door is, even in the evening hours, quite literally open for relatives. In the interest of transparency, all records are examined and discussed together if needs be. Experience shows that relatives can learn to better understand the work of the nursing staff in this way. The number of complaints and uncertainties is reduced and mutual trust is encouraged.

Relatives receive a key to the building. This makes it clear that the institution is not sealed off, but is open for relatives. They are part of it and have the right to be involved.

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“Caring together”

A fundamental new approach and change in attitude is required on the part of nursing personnel and institutions for the principle of “caring together” [17]. Relatives should not simply pass on the responsibility for the well-being of their relatives once they are in the clinic or home, nor should nurses simply expect that relatives carry out certain activities and reduce the workload. Instead of asking, “What can the other side do for me?”, we should ask, “How can we work together for the benefit of the

patient?”. It’s about cooperation. Decisions must be made together about who will assume which duties. Relatives must make and accept decisions voluntarily. No relative is required to get involved. It is also important to consider that relatives themselves often need the support of the nursing staff, for example when they are feeling overburdened. Conflicts with the dementia patient can be very stressful, as there is often the negative feeling of having

“shoved” their relative into a home. During phases like these, relatives often become “clients” in their own right, needing special support.

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8 Final word

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9 Final word

If applied in a consistent manner, the recommendations in this practical guide can have a dual effect, as seen by the authors and institutions involved – the quality of care provided to dementia patients can be improved, all the while having a positive effect on the working conditions of the nursing personnel. This clearly reflects the core belief of the Initiative Neue Qualität der Arbeit – that excellent work and excellent working environments are two sides of the same coin.

The implementation of these recommendations is, however, always dependent on the basic conditions that the nursing is carried out under. Nursing personnel can only be made partly responsible for the application of or failure to apply suitable concepts and interventions. Regardless of whether an individual staff member is highly motivated or qualified, they cannot work well in the long term in an adverse institutional environment. Both the societal conditions and the conditions within each institution, be it an outpatient nursing service, inpatient nursing institution or hospital, play a decisive role. The ever-repeated demand to provide more nursing staff, more money and more time has always been and will always be justified based on the work with patients with dementia. In nursing, good quality is often linked with the provision of sufficient amounts of time. As important as low-threshold, volunteer and complementary services may be, we urgently need better conditions and more appreciation from the social environment for professional nursing.

However, simply demanding repeatedly that the social environment needs to be improved is not sufficient in itself. It solely depends on creating appropriate conditions for working well with dementia patients in each institution. Actually implementing the described principles and concepts involves comprehensive changes to the personnel management and organisation and cannot simply be driven through as part of a bundle of issues (valuable information on this subject is available in the other INQA practical guides for nursing practices). The available scope is also vastly underestimated here. It makes a large differ- ence whether the management supports measures such as these or not.

Finally: the survey has made it clear that it is predomi- nantly inpatient nursing facilities that provide the driving force behind the care of patients with dementia. It is in these same facilities that the implementation of these concepts and principles has progressed the furthest. Hos- pitals, particularly those without geriatric or geropsychiatric wards are often still on the starting line. They should be encouraged to take more interest in the subject and introduce appropriate steps for development. Working together with nursing homes could be a decisive advantage.

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40 Final word

Recommendations for nursing patients with dementia

– Make sure that you are aware that there are reasons for patients with dementia behaving in ways that may seem peculiar to us. This alone can help to reduce the stress.

– Encourage the employees to take an appreciative attitude with regards to validation and integration in the day-to-day running of the institution.

– Encourage employees to find out more about a patient’s life history and make use of this biographical knowledge as part of the nursing process for each patient.

– Develop and use the possibilities that non-verbal communication and sensory stimulation offer, e.g. basal stimulation.

– Real primary nursing is of particular advantage when working with patients with dementia.

– Encourage employees to work together with relatives according to the principles of transparency and “caring together”.

– Remember that implementing these recommendations means fundamentally updating your institution’s structures and processes. Don’t get bogged down – make an effort to put part of it into action.

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42 Literature notes

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10 Literature notes and additional information on dementia

References

[1] Robert Koch-Institut: Gesundheitsberichterstattung des Bundes, Number 28: Altersdemenz, Berlin 2005.

[2] Bundesministerium für Gesundheit (Hg.): Rahmenempfehlungen zum Umgang mit herausforderndem Verhalten bei Menschen mit Demenz in der stationären Altenhilfe, Berlin 2006.

[] Kleina, Th. & Wingenfeld, K.: Die Versorgung demenzkranker älterer Menschen im Krankenhaus. Veröffentlichungsreihe des Instituts für Pflegewissenschaft an der Universität Bielefeld (IPW), Bielefeld 2007.

[4] Gröning, K.: “Institutionelle Mindestanforderungen bei der Pflege von De- menten” In: Tackenberg, P.; Abt-Zegelin, A. (editor): Demenz und Pflege:

Eine interdisziplinäre Betrachtung, Frankfurt am Main. 2001, p. 8–96.

[5] Kolanowski, A. M.: “An overview of the Need-Driven Dementia-Compro- mised Behavior Model”, Journal of Gerontological Nursing, September 1999, p. 7–9.

[6] Halek, M. & Bartholomeyczik, S.: Verstehen und Handeln: Forschungs- ergebnisse zur Pflege von Menschen mit Demenz und herausforderndem Verhalten, Hanover 2006.

[7] Bräutigam, C.; Bergmann-Tyacke, I.; Rustemeier-Holtwick, A.; Schönlau, K.; Sieger, M.: “Verstehen statt Etikettieren: Ein professioneller Zugang zur Situation von Pflegebedürftigen mit Demenz in kommunikativ schwierigen Situationen”, Pflege & Gesellschaft 10 (2), 2005, p. 8–89.

[8] Kitwood, T.: Demenz: Der person-zentrierte Ansatz im Umgang mit verwirrten Menschen, Bern 2002.

[9] Feil, N. & de Klerk-Rubin, V.: Validation: Ein Weg zum Verständnis ver- wirrter alter Menschen, Munich, 8. Edition 2005.

[10] Richard, N.: “Demenz, Kommunikation und Körpersprache: Integrative Validation (IVA)” In: Tackenberg, P.; Abt-Zegelin, A. (editor): Demenz und Pflege: Eine interdisziplinäre Betrachtung. Frankfurt am Main 2001, p. 142–147.

[11] Wächtershäuser, A.: Konzepte für die Betreuung dementer Menschen:

Theoretische Modelle und ihre Umsetzung in der Praxis am Beispiel von Altenheimen in Marburg 2002.

(http://www.we-serve-you.de/anne/index.htm (visited: 26.2.2008).

[12] Strauß, E.; Nauroth, Th.; Müller, C.; Stotzem, G.; Fischer, C.: Modellprojekt Sicherheit und Wohlbefinden im Alter – trotz Demenz (project report), Cologne 2005.

[1] Johanniter-Akademie Münster: VErO – Ein Konzept zur Systematisierung des Pflegeprozesses durch Differenzierung der Beobachtung. Unpublished manuscript, Münster 2005.

[14] Schlettig, H.-J. & von der Heide, U.: Bezugspflege. Berlin 1995.

[15] Manthey, M.: Primary Nursing: Ein personenbezogenes Pflegesystem.

Bern 2005.

[16] Burmann, S.: “Das Konzept der ‘gemeinsamen Sorge’: Angehörigenarbeit im Pflegeheim”, Dr. med. Mabuse 169, September/October 2007, p. 50–52.

[17] Denzer, K. J. (editor): Handbuch Angehörigenarbeit in Altenhilfeeinrich- tungen. Haus Neuland Werkstattbericht 20, Bielefeld 2001.

Additional information

The German Alzheimer Gesellschaft is providing a variety of information and support regarding dementia:

Deutsche Alzheimer Gesellschaft e.V.

Selbsthilfe Demenz Friedrichstr. 26 10969 Berlin Tel.: 00-25 9 79 5-0 Ω www.deutsche-alzheimer.de

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Imprint

Successful concepts for nursing dementia patients

Specialist advisors and editors:

Stephan Schwarzwälder, BAuA Dresden

Initiative “Healthy Care” of the New Quality of Work Initiative (INQA)

c/o Bundesanstalt für Arbeitsschutz und Arbeitsmedizin, Dresden

Proschhübelstraße 8 01099 Dresden

Telefon +49 51 569-544 Fax +49 51 569-5210 gesundpflegen@baua.bund.de www.inqa-pflege.de

Agency of the “Initiative Neue Qualität der Arbeit” (“New Quality of Work Initiative”)

Nöldnerstraße 40–42 1017 Berlin

Telefon +49 0 51548-4000 Fax +49 0 51548-474 inqa@baua.bund.de www.inqa.de

Publisher:

Bundesanstalt für Arbeitsschutz und Arbeitsmedizin

Friedrich-Henkel-Weg 1-25 44149 Dortmund

Telefon +49 21 9071-0 Fax +49 21 9071-2454 poststelle@baua.bund.de www.baua.de

Authors:

Christoph Bräutigam

Institut Arbeit und Technik, Gelsenkirchen www.iat.eu

Text editing: KonText – Oster&Fiedler, Hattingen

Design: Rainer Midlaszewski, Bochum

Photo: FOX-Fotoagentur – Uwe Völkner, Lindlar/Köln

Photo pages 6, 12, 15, und 18: Dirk Kerkmann, Oberhausen

Photo page 6: Rainer Klemm – BauA, Dresden

Photo page 8: Anne de Haas, Toronto

Production and printing: DruckVerlag Kettler, Bönen

This brochure has been produced in the INQA-project: “Handlungshilfen für die Pflegepraxis”.

Project management: Christa Schalk and Christoph Bräutigam, Institut für Arbeit und Technik, Gelsenkirchen

Reproduction, also extracts, only with the prior consent of the New Quality of Work Initiative (INQA)

1^st edition

Berlin/Dresden 2009

ISBN: 978--88261-

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Agency of the “Initiative Neue Qualität der Arbeit”

(“Initiative New Quality of Work”)

c/o Bundesanstalt für Arbeitsschutz und Arbeitsmedizin

Nöldnerstraße 40–42 1017 Berlin/GERMANY Telephone +49 0 51548-4000 Fax +49 0 51548-474 inqa@baua.bund.de

www.inqa.de

Recognising the other world

Recognisingtheotherworld

Successful concepts for nursing dementia patients -

Recognising the other world

Successful concepts for nursing dementia patients­

Activity aids for use in healthcare

For an improved quality of work in nursing

Contents­

Foreword

Less stress for nursing personnel – better care for patients and resi- dents

1 The importance of dementia

Spread

The other definition of “normal” and unsuccessful routines

Needs-driven dementia-compromised behaviour model, NDB-model

+

2 Stresses on nursing staff

3 Many concepts, little concrete knowledge

Which image of the human being does the concept follow?

What practical experience exists for this concept?

Which research results are available for the concept?

Can the working conditions of the employees be improved using the concept?

4 Appreciation and confirmation

Example of validation:

a scene from an inpatient nursing facility

5 Life history is an important connecting factor

Factors that do not constitute “life history work” alone

Preparation for use of the life history

“The patient’s life history told us that the resident used to be a journalist. We gave her a pad of paper and some pens, and she began to write. This was recorded in the care plan.”

6 Stimulating the senses

Basal Stimulation

“Both I and the resident find basal stimulation relaxing while I help the resident with his hygiene rou- tine. Mediterranean music helps to intensify the sensations.”

Snoezelen

Music therapy

7 Building and shaping stable relationships

8 Working together with relatives:

transparency and “caring together”.

Transparency

“Caring together”

9 Final word

Recommendations for nursing patients with dementia

10 Literature notes and additional information on dementia

Successful concepts for nursing dementia patients

Contents