Experiencias Ciudadanas

Engaging people with moderate to severe dementia in activity is challenging. These challenges include offering an activity that is suitably complex, within a time frame that will hold the person’s attention, by a member of staff or carer who has the skills to facilitate when necessary. Additional barriers also include service provision issues which fluctuate with each changing political

environment.

3.3.1 Activity engagement in people with moderate to severe dementia: activity versus occupation

Approaches such as Reality Orientation, Reminiscence Therapy and Validation Therapy often fail because little attention is paid to the process of engagement in activity. In particular, cognitive decline, physical frailty and loss of personal identity can make it difficult to identify occupation and activity that is perceived as worthwhile and relevant by the person with dementia as well as by the therapist. This may result in the loss of any attempt to engage people in occupation as those with severe dementia are seen as unable or unlikely to benefit (Chung, 2004; Mozley, 2001). This is possibly due to a mismatch in perception of ability compared with the actual ability of the person with dementia.

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There is also confusion between what is seen as activity versus occupation. Occupation is described as:

‘everything people do to occupy themselves including self-care, leisure and productivity’ (Canadian Association of Occupational Therapists, 2002 p.34).

This definition includes activities of daily living, such as washing and eating, as well as tasks that create a sense of purpose. Whereas occupation is perceived as a primary source of meaning and purpose it may be wrong to assume all occupation provides meaningful activity to all people (Hammell, 2004). People derive meaning from what they do through their own personal framework and culturally shared beliefs of what is meaningful (Jonsson, Borell, & Sadlo, 2000). What is meaningful to one person may not be the same for another. Indeed, from the perspective of people with severe dementia the three categories of self care, leisure and productivity may be perceived as meaningless as they are no longer able to recall their own belief of what is meaningful. Consequently, the focus turns to what they cannot do (disability) rather than what they can do (ability). Many of the activities that are available for people with severe dementia include elements that focus on disability rather than on ability; for example, Reality Orientation focuses on memory recall, a major feature of severe dementia being memory loss. If the activity offered can only focus on disability we deny the individual the right to partake in activity that provides pleasure and enjoyment. Gilliard (1995) sums this up by reflecting that staff may see people with dementia in terms of their disease rather than in terms of what they are able to do.

However, the notion of providing suitable activity is problematic, given people with severe dementia are reliant on others to support them in taking part. Often activities of daily living are taken over by carers and relatives in an attempt to ‘get the job done’ rather than allowing the individual the time and the opportunity to do it themselves. However, doing part of the activity may be as important as doing the whole if it meets the individual’s skill level and offers meaning. Activities should be considered, not only for their outcome but also for their potential to meet that intrinsic need (Law et al., 1996).

Pulsford (1997) identifies two barriers to successful activity. They are, firstly, the problem of staff offering activity that is too challenging for the person with severe dementia due to a lack of understanding of how to select suitable activity and, secondly, a lack of support within service provision causing staff to focus on routine tasks rather than activity. The consequences of these barriers are negative behaviours, such as hostility and disinterest (Chung, 2004; Kolanowski, Litaker, & Buettner, 2005). These barriers lead staff to withdraw from facilitating activity.

42 3.3.2 Staffing and service provision issues

Pulsford (1997) recognises that staff find engaging people with dementia in activity challenging, often preferring mundane tasks such as ‘tidying the laundry cupboard’ (p.707). Pulsford (1997) also notes that staff are reluctant to maintain activity seeing it as ‘low priority’ (p.705) or ‘impossible’ (p.707) if long term gains are not achieved. Pulsford therefore argues that the most successful activities, in terms of staff and individual participation, focus on quality of life and sharing of the experience. This enhances morale in staff and the individual, and allows activity to be adapted to meet the individual’s needs.

The National Service Framework for Older People (NSF) (Department of Health, 2001) includes a recommendation to change staff attitudes and foster a more positive approach to older people. The framework sets out a 10 year plan to improve services for older people which includes person centred care and improved standards of service provision. Person centred care is identified by the Department of Health as a particular concern as it is felt that current service provision is limited (Baldwin, 2003; Netz et al., 2005). However, the plan is itself limited in that it gives no suggestions for how service provision may be improved. The Care Management Approach for Older People with Serious Mental Health Problems (Department of Health, 2002) also endeavours to address the challenges presented by people with severe dementia. It, too, offers limited guidance, with the main emphasis being on assessment rather than on intervention. Whilst improved assessment is the cornerstone to improved management, the lack of clear direction in management is problematic and consequently day to day management is left to staff who may still perceive activity to be supplementary to general care. For example, Challis et al. (2002) found that departments providing specialist dementia services offer more assessment for people with severe dementia than

treatment. This is possibly due to the lack of rigorous research underpinning any of the

interventions and the lack of training offered to staff into the mechanics of running an activity (Altus, Engelman, & Mathews, 2002; Hope & Waterman, 2004; Spector et al., 2003b).

3.3.3 Summary

Given the lack of direction from these reports, service providers are left to deal with the challenges presented by people with severe dementia as they see fit. Consequently, services are variable with little known about models of care (Department of Health, 2000; Reilly, Challis, Burns, & Hughes, 2003). Despite these problems there is a strong body of knowledge supporting the use of activity for people with dementia. This includes the effect of activity on cognition, behaviour, physical ability, and well-being. These features will be explored in more depth in Chapter 4.

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Chapter 4 Impact of activity and occupation in moderate to