Interventions used in Previous Studies: Practical implications and issues

In designing an intervention to support caregivers, it is important to look closely at the nature of interventions used in previous studies, paying attention to the strengths of these as well as the areas for improvement noted by the authors. In this section I will focus more closely on the aspects of previous intervention studies which have proved beneficial to caregivers, and those which have been related to less favourable outcomes.

The aim here is to build upon previous research in the development of an intervention for the current work, minimising those aspects which in previous studies have proved problematic and making use of approaches which have had support from prior studies.

A couple of studies have been cautious about the usefulness of using group-based interventions with caregivers. In their study looking at individual or family counselling compared with support groups, Zarit, Anthony and Boutselis (1987) found that there were improvements in caregiver burden, but that these improvements were not significantly different to the improvements seen in a waiting list control group. They noted that the results of this study were not positive about the use of support groups, although it is possible that peer-support groups would have been more favourable.

Similarly, Haley et al. (1987) found that there were no significant differences in outcomes for caregivers who were randomly assigned to a support group, a

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support/skills group or a waiting list control. They proposed that such interventions may have limited scope for improving outcomes when compared to the actual needs of caregivers, including the need for better resources and more support. However, they reported a ‘substantial’ attrition rate (28 per cent) from the group conditions, which required caregivers to attend for ten meetings. It is possible that the caregivers who could not attend were the ones with the highest number of stressful events going on in their lives or, as Haley et al. (1987) noted, that drop-outs were related to unpredictable events such as developments with the person with dementia. It is also possible that the researchers’ expectations for the intervention differed from those of the caregivers, who actually rated the group sessions very highly. Particularly useful aspects to the

caregivers were the opportunity to meet other people in the same situation, the practical information given about the brain and behaviour, information on resources and being encouraged to try out new ways of managing situations. When designing an intervention study, we must always be aware of the possibility that our goals as researchers, or the outcomes measured, may not be the same as the desired outcomes for the participants.

Manual-based interventions have been used in many previous studies, with participants receiving a manual with information and exercises. The Boise et al. (2005) study described earlier used one such intervention, with all the information and practical exercises going on to be published in The Caregiver Helpbook (Legacy Health System, 2006). In their paper, Boise et al. (2005) noted that one possible drawback in the study was the time commitment required of caregivers, and they suggested that the length of the intervention may have contributed to a lowering of participation. Rosenberg and Gouge (2007) reported that shortened versions of the intervention used by Boise et al.

(2005) have since been developed.

Burgio, Stevens, Guy, Roth and Haley (2003), in their intervention aimed at having multiple benefits for caregivers, used a skills development manual; this was delivered in 16 home-based sessions over the course of a year, and was supplemented by the use of video cassettes. The control condition in this study, defined as a minimal support control, involved telephone calls being made to offer caregivers support, as well as the use of brief information sheets on specific topics as requested by the caregivers. The Burgio et al. (2003) study was part of a project called REACH (Resources for

Enhancing Alzheimer's Caregiver Health), which will be discussed more fully later in this chapter.

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Pickett-Schenk et al. (2006) reported on the Journey of Hope, an eight-week family-led intervention based on a manual and also using lectures, videos and group discussions.

This intervention was developed into the Family to Family Education Program (Dixon et al., 2004), expanded to a 12-week programme. These interventions also involved providing training to the family members who were going to provide the intervention in turn. The concept of training caregivers to provide support to fellow caregivers will be discussed in Chapter 8, as a possibility for further research.

Some of the literature on family- or peer-led interventions has focussed on family members affected by mental health in general, rather than a specific condition. The Caregivers Helpbook (Legacy Health System, 2006) was written to appeal to caregivers in a range of situations and was not restricted to dementia caregivers. As discussed in Chapter 1, however, there are particular risks of being a caregiver for someone who has dementia, and these risks have been suggested to relate to the difficult behavioural issues caused by dementia: agitation, walking, disinhibition and so on. It seems reasonable, therefore, to propose that an intervention designed specifically to help dementia caregivers could be more precisely targeted to the stressors facing this group of caregivers, and this may have the additional benefit of being a shorter intervention which would be less demanding of caregivers’ time.

In addition to testing to see whether interventions offer measurable benefits (and often used as a precursor to this type of study), feasibility studies look at issues including the practicality and acceptability of interventions (Bowen et al., 2009). As well as proving feasible in terms of caregivers’ time and busy routines, interventions for supporting dementia caregivers also need to be practical in terms of their professional resource requirements. Dementia support tends to be relatively underfunded, so for an intervention to be widely adopted following successful testing, it should ideally be inexpensive to deliver. This takes us back to the priorities identified earlier for developing helpful interventions: they need to be both effective and cost-effective, to stand any chance of being made widely available. An intervention which requires a great deal of intensive training at the start is likely to face challenges in getting off the ground.

It is important to balance between being too time consuming and offering insufficient

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support, when designing this type of intervention. Zarit and Femia (2008) cautioned against using interventions whose intensity is insufficient to have the desired effect, and Zarit et al. (1987) found that caregivers went on looking for support after their

intervention had ended, suggesting that a longer period of support may have been needed.

Some studies have looked into using different formats for interventions to try to make them more convenient for caregivers who may have busy lives. Kwok et al. (2013) found a good level of adherence to their telephone-based intervention, which may be suitable for caregivers who would have difficulty in committing to the time away from home required to attend an intervention. Other studies have looked at the possibility of using technological advances to deliver online interventions (for example, Mastery over Dementia, an internet-based intervention for caregivers, is being evaluated for

effectiveness and cost-effectiveness (Blom, Bosmans, Cuijpers, Zarit & Pot, 2013), while Bass et al. (2013) looked at the use of email in conjunction with telephone support in an intervention, meaning that professionals could offer support to large caseloads of people).

Williamson and Schulz (1993) raised an issue important to the development of caregiver interventions, particularly ones which use techniques such as goal-setting and problem-solving. They found that some coping responses were actually associated with higher levels of caregiver depression: for example, using active problem-solving in response to memory deficits, which are clearly outside of the caregivers’ control and unlikely to respond to problem-solving. Williamson and Schulz (1993) present a compelling case for interventions to promote both ‘active’ and ‘passive’ coping techniques to caregivers.

An active coping technique could be something like forming an action plan to take more breaks, something which can be improved in an active way. Passive techniques would include things like developing greater acceptance of memory decline in the person with dementia, a factor which cannot be controlled using active responses.

Williamson and Schulz (1993) argued that caregiving cannot be seen as one overall stressor, and should instead be looked at as a collection of different stressful aspects which may require different response styles. Indeed, as Zarit (2012) notes, caregiving is not simply a stressor at all, but includes many positive aspects for caregivers, such as positive experiences, feelings and strengths, so any intervention must take into account

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the breadth and complexity of the factors involved in caregiving and not assume that it is a single source of stress.

When designing an intervention to support caregivers, then, it is vital to pay attention to the information obtained from previous intervention studies. An intervention should be sufficiently intensive to address a support need, but we also need to ensure that the time commitment required is not so large that it rules out the very people who may have most need of the intervention. It should be borne in mind that the outcomes we desire as researchers may not be identical to the outcomes considered desirable by caregivers themselves. For interventions to be feasible, they should not be highly dependent on professional input or expensive resources. A successful intervention should be appropriately targeted to need and should reflect the range of possible stressors and coping responses, bearing in mind that different response styles may be more or less appropriate to different situations.