Bo Hejlskov Elvén - Confused, Angry, Anxious?: Why working with older people in care really can be difficult, and what to do about it

Confused,
Angry,
Anxious?

Why working with older people in care really can be difficult, and what to do about it

Bo Hejlskov Elvn, Charlotte Agger and Iben Ljungmann

Jessica Kingsley Publishers
London and Philadelphia

Contents

Introduction

It is difficult to prophesy. Especially about the future. But one thing we do know: Authorities around the world estimate that the number of people over 80 years old will increase by 45 per cent between 2020 and 2030. We know also that the older we become, the greater the risk of acquiring some form of dementia. Therefore it is a reasonable assumption that an ever-increasing number of people will be affected by dementia in the near future.

We also know that the number of beds in care homes for older people in most western countries has dwindled significantly in recent years. This development has brought about a dramatic change in the care of older people. Nowadays, residents at care homes suffer such significant physical and/ or mental disabilities that they are unable to manage day-to-day living on their own, in spite of maximal access to domiciliary care and community health services. As a result, residents at care homes need considerably more physical and mental care than in the past. At the same time, the complexity of their problems has increased greatly since older people, regardless of their health, are expected to be able to live in care homes. For example, mapping of the situation in Copenhagen municipality led to the estimate that 6080 per cent of those who lived in normal care homes had dementia or dementia-like symptoms. This means that all those who work in care of older people must be able to cope with the behaviour that challenges and may arise as a result of dementia; it is part of the job. A part of the job that requires special skills.

At the same time, our attitude to those who need care has changed. Today the key words are right to self-determination and dignity. For this reason, care of older people today requires special knowledge and special skills. And, since we are able to supply specific competence in areas such as hygiene or wound-care, we should also be able to ensure that staff caring for older people have specific competence that enables them to understand and manage the types of behaviour that may occur in dementia illnesses.

When we authors have spoken to staff working in care of older people, they have told us of people with dementia with behaviour that challenges, for example refusing help with their personal hygiene, shouting, spitting, hitting and verbally abusing others. The staff then feel forced to resort to measures such as reprimands, sending the patient to his room, giving sedatives, or using physical intervention such as laying the person down on the floor, pushing them away in their wheelchair, or forcibly removing them from the scene. This naturally has the result that they experience feelings of powerlessness in such situations.

But while observing difficult care-giving situations such as these we have also seen that many older people, including those with dementia in older and dementia care, also seem helpless in the situation in which they find themselves. They express their desire not to have other people deciding for them and not to be subjected to what in patient-centred care is referred to as malignant care. We will return to this topic later.

If those who are involved in caring for older people and for people with dementia do not change both their attitude and their understanding of this problem, then such care will become continuously more demanding and more expensive. This is why a book such as this is necessary.

Due to all the powerlessness we have come across in our work, both in care providers and many older people, we are always on the look-out for this feeling when training staff in older and dementia care. The reason is that we consider powerlessness itself to be absolutely the most devastating thing there is, regardless of whether it concerns staff or older people in a care home, or older people living with assistance in their own home.

It is easy to understand why powerlessness is devastating for older people. They are unable to influence their situation, they feel themselves to be in the power of either the staff or the illness, and life is experienced as just floating with the current. Their powerlessness increases as their abilities decline. From having been someone who managed perfectly well alone, perhaps raised children and participated in the community like everyone else, they have become dependent on others. Perhaps they even see before them how their dependency will continuously increase in the future.

But powerlessness is just as devastating for caregivers. Helpless staff often become confrontational and demanding. They may become cynical and resigned, and it may reach the point where they try to avoid the very people they are employed to care for. They prefer to sit in the office or staffroom rather than being present among older people who live in the home.

But worst of all is probably the powerlessness in the system itself, that shared impotence that is experienced by both staff and the older people. Instead of this being treated as a mutual problem, it rather serves to increase the opposition between the older people and caregivers. This can lead to an atmosphere of mutual distrust between the groups, with harsh speech and sometimes violence as the result. From older people with dementia in the form of hitting or kicking. From staff in the form of the use of force to get the older people into their rooms or, in the worst cases, use of physical restraint.

All involved may easily end up in situations such as these when their behaviours and methods dont work as expected. This is the very worst consequence of powerlessness.

INCREASED KNOWLEDGE AND EFFECTIVE, PROFESSIONAL HANDLING

The main purpose of this book is to give you who work in older and dementia care more knowledge about various types of behaviour that challenges, so that you can handle them effectively, professionally and with confidence. By learning to understand this type of behaviour and the methods described in the book, you and your colleagues will be able to change your shared everyday life in a positive direction.

Primarily its all about looking at your own behaviour and the ways in which you handle difficult situations. Research has shown that changing your own behaviour is absolutely the most effective way to handle other peoples behaviour.

THE MOST IMPORTANT GOAL OF OLDER AND DEMENTIA CARE

The most important goal of older and dementia care is to ensure that the older people who need support in everyday life receive it, allowing them to live as full a life as possible. If they have dementia, however, the behaviour that challenges that may arise will make the task more difficult for the caregiver. To handle this as easily and smoothly as possible, caregivers should therefore concentrate on their primary function. The assignment then, is not to discipline people with dementia or to teach them to behave. Rather it is to manage and prevent their negative behaviours so that they can lead a functioning life. Preferably in a way that doesnt require too much time, energy or space. It is not the people with dementia whose task should be to behave themselves, rather it is the caregivers whose task it should be to create a context that allows these peoples everyday life to function.

Thats exactly what this book is about. How you who work in older and dementia care can think, act and interact with people with dementia, regardless of whether they live in a care home or in their own home. And how you can do this in a way that means you are taking responsibility to ensure that all older people with dementia can maintain a functioning life, with autonomy and the ability to take responsibility for their own actions.