The findings of this study have a number of implications for the provision of support groups for individuals with early stage dementia, and for the role of clinical psychologists and other professionals in particular. These implications relate to three broad areas discussed earlier in this chapter: the provision of social contact as an important function of the group, the role and nature of professional facilitation, and a consideration of the characteristics that appear to contribute to a useful and enjoyable group experience. Each of these sets of implications are discussed below.
Dementia support groups as an opportunity for social contact
The significance of the support group as a means to facilitate social contact for and between individuals with early stage dementia is a finding of this study that has considerable service implications. It implies that support groups for individuals with early stage dementia should validate and facilitate the provision of social contact as one of their core functions, alongside the provision of emotional support and a forum to discuss dementia-related difficulties.
Chapter Four: Discussion
Integral to this function would be the opportunity to talk about events and experiences unrelated to the diagnosis of dementia, such as ‘everyday things’ or the past, and for these to be seen as a valid topic for discussion in themselves. Opportunities for informal social support could be provided as an adjunct to the main support group meeting, or could be integral to the group interaction. Alternatively, groups could be offered where informal social contact, rather than emotional support or exploration, is a more central component. Such an approach has been taken by a new service set up within the London area since the start of this study, which incorporates informal social contact and a user-led discussion forum (Pratt, Clare, & Aggarwal, in press). Such an approach allows for flexibility in service provision in accordance with individuals’ differing needs and preferences, as is further discussed below.
Nature of the group facilitation
The questions and issues raised by this study concerning the facilitation of support groups for individuals with early stage dementia imply that this aspect of group provision requires careful consideration. Clearly there is a role for professional involvement in such groups, and particularly in groups that are envisioned to be psychotherapeutic or exploratory in nature. However, as is argued above, the current lack of clarity concerning the therapeutic versus the support functions of such groups has led to an assumption of the necessity for professional facilitation that would appear to be untested in either clinical or research contexts. Given the lack of alternative models of support group provision, it is unclear whether professionals may usefully occupy roles other than that of facilitator, such as assisting individuals with dementia to set up their own group or co-ordinating referrals. It Is likewise unclear whether it is most helpful for professional facilitation, where it does occur, to be directive or purely to follow members’ own agendas.
Evidence that professionally-led support groups, compared to those that are member-led, tend to be more structured and formal and encourage their members to adopt a patient role, suggests the need for future clinical practice to explore the boundaries of professional involvement required for the effective running of groups for those with early stage dementia. Experimentation with different degrees and styles of professional and member-led facilitation
would clarify this issue and potentially lead to the development of different types of support groups that would cater for the different needs of diverse individuals. It could be, for example, that a group could be member-led with some organisational support. The Dementia Advocacy and Support Network International, the web-based self-help group run for and by people with dementia, can be seen as one recent example of this.
The support group literature has noted in the context of other client populations that professionals can have a vested interest in being needed (Borkman, 1999). While not losing sight of the particular requirements of individuals with cognitive and other dementia-related difficulties, as professionals we need to be clear about the needs and agendas that are informing the development of support groups for this client population.
Group characteristics
The findings of this study suggest some possible issues for consideration when planning future groups. First, it was evident from the participant accounts that there can be tension between the benefits of being together with people who share the same difficulties and experiences and so can offer understanding and support, and the frustrations of being with a group of people who are all exhibiting the difficulties associated with a diagnosis of dementia. While this tension can never be totally resolved, it should be borne in mind that individuals with early stage dementia can find the outward signs of the illness as difficult to cope with in others as can people without dementia. For this reason, it may be advisable to ensure as far as possible that groups are homogeneous in terms of their members’ level of cognitive and behavioural functioning.
The study’s findings also suggest that the cognitive difficulties experienced by group members can mean that a longer time is required for members to establish a sense of familiarity and trust with each other, such that the support functions of the group are able to develop. This would suggest that it may be helpful for groups to be long-term or open-ended rather than offering a fixed number of sessions over the short term.
Chapter Four: Discussion
Finally, the views and themes that emerged from this study attest to the varying preferences of individuals for different ways of talking about the difficulties and experiences that arise from a diagnosis of dementia. With the literature increasingly exploring the range of possible coping styles adopted by individuals living with dementia and how these are influenced by their different personalities, backgrounds and experiences, it would seem evident that some individuals may not wish to use an approach that is based around talking at all. It is therefore important that we do not assume that everyone can or wishes to benefit from a dementia support group, and to develop a variety of approaches that can facilitate social contact and support. Given the concerns raised in this study about the degree to which the group members actually exercised a choice in attending the groups, offering a number of possible options to the individual newly diagnosed with dementia may also facilitate him or her making an active decision about the services s/he receives.