Chapter 9. Assessing capacity for doing and promoting engagement
Chapter Contents
Introduction135
An ethical basis136
Capacity for doing138
Engaging with objects and tasks140
Wellbeing and ill-being144
Conclusion151
INTRODUCTION
More about Jim later; the point here is that my colleague’s attitude was the result of a lack of understanding about how dementia can affect a person’s capacity for ‘doing’, and back then during the 1990s, this gap in knowledge was widespread. Our perception is that knowledge about occupation and capacity for ‘doing’ in the field of dementia care has improved dramatically, both within the profession of occupational therapy and throughout the care industry generally.
In this chapter we look first at an ethical rationale for ensuring good occupational practice in dementia care and at how a broader understanding about occupation and different kinds of ‘doing’ is important for this. In the second part of the chapter we focus in detail on Allen’s cognitive disabilities model (1985) which provides a framework for understanding capacity for doing and how this changes during the course of dementia. Finally we discuss the tools we have used to profile wellbeing as an outcome measure of a good occupational approach.
AN ETHICAL BASIS
Before moving on to define and discuss capacity for doing, we propose an ethical framework within which occupational interventions can be justified. This is especially important for people who have dementia, who may struggle to communicate easily their consent to or opinion about the actions of others or the activities that they may find themselves being asked to take part in.
It goes without saying that society trusts care providers to act in the best interests of the people they care for. They are trusted to be responsible holders of the caring role. This is an important distinction from that of being trusted to perform particular tasks. For example, it is not simply the giving of injections (a medical task) that society trusts doctors to do. Society trusts the doctor to act professionally in the doctor role. Giving an injection is not always beneficial for the patient, and society trusts the doctor, as part of the doctor role, to know who should be given and who should not be given an injection.
In the same way, it is not simply the task of running ‘activities’ that society trusts care providers to do. Rather, it is the provision of a day to day living experience (and joining in with activities may be part of that) which promotes or maintains physical and/or mental wellbeing. This is why the performance of ‘tasks’ in isolation, for example running an exercise group, can be potentially irresponsible. Part of the care provider’s role is to understand and justify whether the tasks performed serve the overall purpose or aim, and this requires a certain knowledge base. Just as the task of giving an injection is sometimes not in the interests of the patient, the task of providing an activity, such as an exercise group, does not necessarily serve the purpose of promoting wellbeing.
We suggest the rationale in Figure 9.1, derived from the work of the philosopher Twiss (1977), which we offer to dementia care providers as a foundation for constructing a responsible occupational approach in dementia care.
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| Figure 9.1 |
Therapeutic interventions refer to specific tasks undertaken by the care provider. In dementia care, these might include tasks such as giving help with personal care, playing a game or reminiscing or assisting a person during a meal time.
Therapeutic aims are connected with the care provider’s function within the larger social and institutional fabric of life. In modern day dementia care, the aims of care provision are less custodial and medical in style, giving equal weight to human social and psychological needs. The Commission for Social Care Inspection in the UK (CSCI 2007) has recently published a new outcomes framework for adult social care. The seven outcomes are: improved health and wellbeing; improved quality of life; making a positive contribution; exercise of choice and control; freedom from discrimination or harassment; economic wellbeing; and personal dignity and respect.
Fortunately, the staff in the home where Helen was cared for (Box 9.1) were keen to learn new approaches and happily agreed to alter their responses at meal times. Now Helen uses only her fork, her food is presented in bite size pieces in a lipped plate, and she is able to enjoy the taste, smell and the look of her food as well as living her own experience of feeding herself. Finger foods are also available, and staff recognise that eating with fingers is a far more enriching experience than the one observed during the evaluation described in the above example.
Box 9.1
During a recent evaluation in a residential home, I observed a careworker trying to help Helen with her lunch. Helen was struggling to use the knife and fork that had been placed in her hands. The careworker started Helen off with the knife and fork but Helen could only manage her fork. The careworker insisted that she use the knife as well and repeatedly placed the knife back in her hand. Although Helen made a few attempts and went through the motions of pushing food with her knife once or twice, she was unable to engage in a free flowing manner with her food. Before long, Helen just ‘switched off’ and stared blankly into space before finally dropping off to sleep at the table. A few moments later, the careworker returned and woke Helen abruptly out of her sleep, placing the knife and fork once more into Helen’s hands. Helen still couldn’t manage and so the careworker took over and hurriedly spoon fed Helen herself.
Thirdly, there are values about persons. Modern day dementia care aims to be ‘person-centred’; it requires care providers to work from a value base of equal rights and citizenship for people who have dementia; to provide individualised care based on an understanding of the perspective of the person who has dementia; and to provide care within a positive and supportive social psychology (CSCI 2007). For the future, we would like dementia care providers to be confident and comfortable in explaining what they are doing and why in relation to these values. In the example of Helen, it could be argued that her freedom of choice and the opportunity to use her own potential was being undermined by the actions of the care provider. From her perspective and in keeping with her own individual abilities, she would have engaged freely with her food in a way that her mind and body allowed her, i.e. with a fork and her fingers. Presenting her with finger foods and bite-sized food items (the therapeutic intervention) allowed her to engage in a way that utilised her capacity and potential (the therapeutic aim), and which upheld her right to have care provided in an individualised way and from her own perspective (the social or person-centred value).
This describes an ethically responsible occupational approach for dementia care providers, and knowledge about how dementia impacts on ‘capacity for doing’ is crucially important to identify an individualised approach that will achieve the aim of positive engagement and wellbeing.
CAPACITY FOR DOING
Generally speaking, people who do not have dementia have the capacity to do many things in different ways; to engage with people, tasks and objects without difficulty. They are in full control of their thinking and their physical abilities and can use both, in harmony, to achieve what they set out to do. Each person has a unique way of engaging with her world, and this does not change with the onset of dementia. Dementia simply complicates matters. Based on what we know of the functions of different parts of the brain, the developmental acquisition of certain abilities and the effect of environment on wellbeing (and logically then on performance), it is not surprising that people who have dementia each have their own unique way of doing.
What we offer here is drawn from a number of ideas, theories and approaches and we encourage others to participate in the ongoing work to shift thinking away from the widespread notion that having dementia equals being unable to ‘do’.
When it comes to engaging with objects, and from there with activity in its broader sense, the skills of grasping objects, differentiating between different objects, sustaining action on objects and working with a goal in mind are the ‘doing’ skills that we acquire after birth. These skills build on to each other (see Chapter 8) making it possible for us to develop from being able just to grasp an object, such as a rattle or a spoon when we are very young, to being able to engage successfully with very complex tasks at maturity such as driving a car.
Having dementia can cause a person to lose one or more of these skills; this then renders them unable to engage with people, tasks or objects in the same way as an unimpaired person. Typically though, the person is judged ‘unable’ which leads to a style of care that takes over for the person or denies them manageable opportunities for engaging with the world, and which results in a negative mood state and ill-being. And so the spiral goes as negative mood state and ill-being are then understood to be part of the dementing process.
The spiral is avoidable however, if the care provider has an understanding of the many different ways of doing and can encourage and support accordingly. For example, a person who cannot differentiate objects will not be able to eat a meal using a knife and a fork, but they may be able to hold onto a spoon whilst being fed or even to manage a single eating implement or eat with fingers. To take over feeding completely greatly reduces that person’s opportunities for being in their world and having some control over it. This is a good example of an intervention that does not serve a person-centred therapeutic aim.
An overview of some the different ways of engaging with what is outside of us is shown in Table 9.1. They are listed in the same order as the order in which they develop from babyhood, starting with ways that are less cognitively difficult or challenging and moving through ways that are progressively more challenging. The more challenging ways of engaging are much more likely to be out of range for some people who have dementia but here lies the key to our model for an occupational approach. Occupation is not something that becomes out of reach for a person who has dementia; it is rather the case that the type of occupation that the person has capacity for and therefore a drive for, changes over time from high demand to low demand. A most important principle here is that there is no such thing as being unable to ‘do’, and that gazing at a face or a passing shape is just as valid and potentially rewarding form of occupation as looking in a handbag or driving a car if the challenge matches the person’s capacity for doing.
| Engaging with: | Engaging by: | Example | |||||
|---|---|---|---|---|---|---|---|
| An object | Gazing | The person is looking at her bag | |||||
| Grasping | She grips the bag with her fingers | ||||||
| Holding | She is keeping hold of her bag clutching it to her chest | ||||||
| An action or task | Manipulating | She changes the position of her bag | |||||
| Acting on | She puts it on her lap and explores the clasp | ||||||
| Keeping going | She continues to explore the clasp | ||||||
| Noting effects | She sees that the top of the bag opens when she moves the clasp | ||||||
| Goal directed action | She opens her bag to look inside | ||||||
| A person | Eye contact | The person looks into the eyes of his carer | |||||
| Physical contact | He leans against his wife during her visit | ||||||
| Single sound or word directed at or in response to another | He replies hello to another resident | ||||||
| Verbal exchange | He has a brief conversation about his meal | ||||||
| Group participation | He joins in a group quiz activity | ||||||
| Key: | |||||||
| Low challenge engagement | ++ | +++ | ++++ | +++++ | ++++++ | +++++++ | High challenge engagement |
ENGAGING WITH OBJECTS AND TASKS
The work of Claudia Kay Allen (Allen, 1985 and Allen et al., 1992) and later, Conroy, 1996, Perrin, 1997a, Perrin, 1997b, Pool, 2007 and May, 2008 has made an important contribution in broadening care providers’ understanding about the different ways in which a person with dementia engages with objects and tasks.
Allen’s Leather Lacing Assessment
Allen’s Leather Lacing Assessment (Allen 1990) has provided an invaluable tool, in our experience, for gaining insight into how the person with dementia engages with objects and tasks. This test uses a simple functional task, a leather lacing task, as a screening assessment to ascertain the person’s capacity for doing. Allen has proposed six levels of capacity to engage with objects and tasks (see Chapter 8 and Fig 8.1 for a schematic representation of these levels):
▪ Level 1 – automatic actions
▪ Level 2 – postural actions
▪ Level 3 – manual actions
▪ Level 4 – goal-directed activity
▪ Level 5 – exploratory actions
▪ Level 6 – planned actions.
This assessment is used by occupational therapists to assess, for instance, whether a person can grasp objects, distinguish objects, sustain action on objects, note the effects on objects and/or use all objects. It provides the therapist with an initial impression of how the person engages with objects. There are detailed sub-levels within each level to make distinctions between developmental benchmarks. For example at level 3.0, a person is able to grasp objects. At level 3.2 he can grasp objects and distinguish objects, at level 3.4 he can grasp objects, distinguish objects and sustain his action on objects, and so on. The therapist, having gained this initial impression, is in a position to check out its validity as she gets to know the patient better.
When Jim retired, he decided to use some of his savings to make an annual visit home to Ireland to visit his nephews and nieces and their families. He always travelled in the autumn but would start his planning in the spring. This involved shopping around for good deals on air fares, making telephone calls to each individual niece and nephew to plan an itinerary that suited them and didn’t interfere with their work and family commitments, and then piecing everything together. He would type out a plan for each family and send it ahead of his arrival. His family in Ireland first noticed a change when, for the first year ever, he failed to send a plan. He talked, ahead of time, in general terms to each nephew and niece about his visit and gave his arrival details before he left but that was all. Only by chance, the day before he was due to arrive, did one of his nieces realise that nobody had been asked to collect Jim from the airport. She quickly organised a lift and one of her brothers collected Jim. The visit didn’t go too well this time because Jim hadn’t arranged with each family member how long he would be staying. Last minute plans had to be made and this caused confusion, inconvenience and sadly, two of Jim’s nieces fell out over a misunderstanding about the arrangements. Nobody realised at the time, but this visit marked the onset of Jim’s dementia. He was losing his capacity for planned action.
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