Well-being in dementia care

This week we feature a more practical approach continuing professional development. Senior occupational therapists Liz Eyre describes how she utilised her professional skills in the development of a pilot project in a specific dementia care setting. This module is of obvious interest to those interested in dementia care and well-being, but it will also prove useful to those wishing to evaluate and improve their intervention, regardless of the nature of client or setting.

To measure occupational therapy’s effectiveness it is important to have a tool that can clearly state outcome measures. This can present a challenge for OTs, especially those working in dementia care.

Peppermill Court is a challenging behaviour unit for men mainly aged over 65 with a mental health problem that is predominantly of a dementia-type. Based in Selby and York PCT, the unit is part of a dementia services collaborative team.

The collaborative, which emerged from The National Service Framework for Older People, forms a multiagency approach to improving services for people with dementia and their carers. A key objective is to ensure “person-centred” care. One suggested way to achieve this is through “access to activities that are tailored to an individual’s needs and preferences”.

The unit’s OT promotes well-being through occupation, which is selected by means of life history work, ongoing assessment and liaison with families. But it was difficult to evaluate the effectiveness of this intervention, and the OT discussed with her manager the need to solve the problem.

So they devised a pilot project to measure OT’s effectiveness with residents on the unit. This project was implemented by an OT from another team with experience in dementia care.

The unit OT’s main aim was to improve the residents’ well-being. But what exactly is “well-being”? We all display features of well- and ill-being in everyday life.

People with dementia who can find verbal communication difficult often demonstrate ill-being through nonverbal communication, which can result in behaviour that is viewed as challenging.

Well-being often results when someone is able to freely express emotion – usually when he or she is in a good relationship and can participate in meaningful, chosen activities. Residents can find their well-being compromised by the environment, the nature of their illness and their response to it.

The Care Services Improvement Partnership’s service development guide, Everybody’s Business, commits care workers to providing a person-centred approach by “addressing all aspects of the patients’ emotional, psychiatric, physical, social, spiritual and cultural wellbeing”. But to carry this out effectively, there must be a way of measuring well-being.

It is often easier for professionals to measure physical outcomes than to find a tool that evaluates mental health. In this case, the OT was trying to find a tool to measure well-being during OT intervention.

The Bradford Dementia Group has developed a tool to assess emotional state (University of Bradford, 2002). The Well-being Profile can be used by anyone working in dementia care, and has been found to:

• help a person achieve a greater understanding of his/her experience of dementia;
• demonstrate how a person’s approach to care impacts on his/her well-being;
• “help staff become more attuned to the behavioural clues that indicate how a person is faring” (Bruce 2000);
• encourage staff to acknowledge more than just physical needs.

The tool is included in a pack that advises on its use. This pack features an individual profile sheet which lists 14 indicators of well-being.

These state that the person:

• can communicate wants, needs and choices;
• makes contact with other people;
• shows warmth or affection;
• shows pleasure or enjoyment;
• shows alertness and responsiveness;
• uses remaining abilities;
• expresses self-creativity;
• is co-operative and/or helpful;
• responds appropriately to people/situations;
• expresses appropriate emotions;
• has relaxed posture or body language;
• reveals a sense of humour;
• has a sense of purpose; and
• shows signs of self-respect.

For each indicator the person is scored from 0 (no sign) to 2 (significant signs) of well-being. The scorer referes to a "summary of meetings", which provides an explanation for each indicator.

Once completed, the profile provides a score which indicates the person’s level of well-being.

However, staff are encouraged to add additional comments about factors – such as noise, time of day and type of activity – that can have an influence on well-being at the time of the evaluation.

Referring to the score on each of the 14 indicators provides more useful information about well-being than the overall score. Professionals can then use the information gained from the profile to plan an appropriate programme of care. 

How the well–being profile was used in the OT project at Peppermill Court

First, the project OT and unit base OT selected residents for profiling. The residents were then observed in the day room during various times of the day,  sometimes while engaged in occupational therapy. 

Therefore, each resident received well-being scores when they were engaged in OT and when they were not. This information was used to score each resident’s overall well-being profile (WBP). A comparison of these two WBP scores indicated how OT had improved or reduced well-being.

Designed with the carer in mind, the profile does not normally require hours of observations by an individual, but rather encourages staff to score during their working day.

The scores of each of the residents profiled were incorporated into the graph (above), which shows that occupational therapy has a positive impact on well-being. (Residents 7 and 8 on the graph were not observed to engage in OT).

The outcomes of this project were presented to the multidisciplinary team, which discussed how the tool could be used by all the staff who worked with this client group to evaluate their practice. This resulted in training sessions for nursing staff working on community units for elderly people across the PCT.

These sessions taught staff how to use the well-being profile whilst engaged in clinical care, enabling the wider clinical team to evaluate their interventions with this client group, provide a more structured approach to care planning, and promote evidence-based practice.

References

Bruce E (2000): Looking after well-being: a tool for evaluation.  Journal of Dementia Care, Nov/Dec: 25-27.

University of Bradford (2002): Well-being Profiling pack.

Key websites

http://www.everybodysbusiness.org.uk

http://www.bradford.ac.uk/acad/health/bdg/index.php

http://www.dementianorth.org.uk 

• First, obtain a copy of the Well-being Profiling pack.
• Then reflect on your own practice in dementia care and how you go about evaluating it.
• Discuss with your team how you could use the well-being tool in your dementia care setting.
• Contact your local dementia care collaborative to see what work it is undertaking to evaluate clinical practice – visit http://www.dementianorth.org.uk

Reflections on CPD articles about challenging behaviour and learning disabilities (January 5 & 12, 2006)

We therapists work in learning disability challenging behaviour units, and we feel we must respond to [Mick Wolverson’s] recent CPD articles by highlighting the therapist’s valuable role with this client group. Both articles were clearly laid out and well written but very much in the medical model, and not very client-centred. There was little about a multidisciplinary approach or of therapist input.

The first article, “Causes of challenging behaviour in people with a learning disability”, did not consider underlying causes to behaviour that could be addressed by therapists, of which there are many. The main two are communication and sensory processing difficulties, which can cause or exacerbate many behaviours.

The second article, “Appropriate methods of intervention for those with challenging behaviour”, began by stating: “There is a likelihood that therapists may have little direct involvement with challenging behaviour interventions”. Given that the article is published as a CPD exercise, why is there no mention of therapists’ valuable input into services for people with challenging behaviour? Less experienced staff will have no understanding of the vital role a therapist can play as part of the multidisciplinary team from reading this work.

The learning objective for this article was to consider the range of interventions employed to help people with learning disabilities and challenging behaviour. As these were not mentioned, we highlight some of our approaches: assessment of communication, sensory processing skills and occupational roles; treatment including training to staff; TEACCH – providing visual structure and structured routine; remotivation work, sensory integration therapy, sensory diets, low arousal approach and intensive interaction. By assessing and treating difficulties, and by increasing staff awareness of how they affect functioning, we can have a significant impact on behaviour.

If people with learning disabilities are less frustrated, less anxious, know what is expected of them and are not subjected to unsuitable stimuli, their world is more meaningful. They are happier and their challenging behaviour is minimised.Nicci Paine, clinical specialist OT; Kate Evans, specialist SLT; Nadene Costello, clinical specialist OT; Hannah Morgan, senior II OT; Gloucestershire Partnership NHS Trust, Hollybrook & Westridge Inpatient Services

In response to the Hollybrook therapists, thank you for your comments. You refer to the articles being in the “medical model and not very client-centred”. I strongly refute this. Their whole thrust is to shift the emphasis from the pathologisation of the individual (as with the medical model) to a more holistic interpretation. This is achieved by drawing the readers’ attention to the fact that very few behaviours have a biological/physical causation and yet challenging behaviour has been, and still is, treated under the medical model.

This point is supported by the following comments (article one): “Blunden and Allen explain the term is used in an attempt to shift the focus of attention away from individual pathology towards an understanding that challenges carers, professionals and service users to find solutions for problem behaviour”; “if there is no ascertainable organic causation, then it must be the result of other (often unconsidered causes)”; “the discussion of the effects of institutionalisation, stigma/labelling, abuse and poor parenting all serve to illustrate that many behaviours are socially constructed and not innate phenomena associated with the individual or learning disability per se”.

The second article continued to shift the emphasis away from the medical model by offering caveats to the use of medication that treats challenging behaviour, and included comments such as: “while these drugs can be effective if there is an underlying psychiatric disorder, there are concerns that they can be used instead of adequate staffing and more appropriate behavioural support”.

It also discusses how behavioural approaches can be criticised for not being person-centred. A comment states: “both behaviour modification and physical approaches can be criticised for the perception that they are controlling and that they are not person-centred”. You also comment that communication (as a cause of challenging behaviour) was not discussed, yet article one (pp9-10) states: “people with learning disabilities are often unable to express pain and will display challenging behaviour to draw attention to it”. In article two, the discussion on functional analysis (p10) places much emphasis on how this approach seeks to understand the communicative function of behaviour: “a further key tenet of the behavioural approach is that all behaviour has meaning and a communicative function regardless of how challenging or meaningless it may appear”.

Further, you say you use TEACCH, remotivation work, sensory integration therapy, intensive interaction, etc. I am disappointed as most of these approaches were originally included in my article, but not published. The omitted section included: family therapy; structured teaching; the art therapies; complementary therapies; intensive interaction; functional communication training.

Similarly, my conclusion was omitted and this included the following: “Historically aversive approaches have been the chosen interventions due to the dominance of the medical model of care. Because of this, it is suggested that an eclectic range of approaches should be considered.”

Challenging behaviour is a vast subject and to capture its fundamental aspects in two brief articles is extremely difficult. I could only aim to raise awareness of key issues. It should be noted that the further reading suggested would reinforce the importance of person-centred approaches, as opposed to the medical model.

Mick Wolverson

These articles really challenged my thinking. As a professional, it can be easy to forget that not only do challenging behaviours rarely have an organic causation but they are often socially constructed.

It is uncomfortable to think that therapists are just as likely to be part of their social construction as any of the other people involved in the life of a person with a learning disability. The articles’ deliberately provocative stance, which stressed that as therapists we need to increase our knowledge and examine our role and practice when working with people exhibiting challenging behaviours, was timely. The increasing emphasis on person-centred care challenges all of us to reframe and rethink our practice.

Katrina Bannigan, senior lecturer, York St John

Liz Eyre
02 February 2006