Carers’ support needs

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this framework, it is recognised that carers’ and professionals’ understanding of support needs may differ.

To develop a definition of carers’ support needs usable in dementia care, integrating different perspectives of needs is therefore preferable. Three positions of support needs were suggested: the carer, the person with dementia and the interaction between them (Paper I). Professionals may be more prepared to identify these needs in relation to the person with dementia due to their normative thinking of needs and context of dementia care (7). A mismatch between the supportive services offered by professionals, and the

support needed by carers thus exists. Furthermore, even when supportive services are offered, carers often do not utilise these, because they fail to meet carers’ individual demands for support (139). A demand can be seen as carers’ expressing their felt needs (7). In contrast, supplied services are more likely to be based on a comparison of what carers in a similar situation have needed in combination with professionals’

normative judgement of what is needed (75). If professionals are not mindful of this mismatch, effective supportive services may not be achievable (139,140). However, a needs assessment is not easily

undertaken, because a universal definition of carers’ support needs does not exist. To assess carers’

support needs though, it may be useful to identifysupport needs based on what might actually help the carer in the specific context of caring. Therefore, to enable targeted supportive services, a needs assessment has to reflect a joint understanding of carers’ support needs that incorporates carers’

subjective felt and expressed needs, the context of caring, as well as professionals’ objective normative and comparative assumptions of needs.

17.1.1 Identifying carers’ support needs

Carers express having support needs of their own, but they have difficulty realising it. Carers neglect their own health and well-being, because they are so caught up in caring for the person with dementia (Paper I, Paper II). Similar to this finding, another study explained that carers’ lack of self-care can be linked to their inability to articulate their felt needs, and, thus, state their demands for support (75). Also, a study of carers’ needs suggests that carers experience a needs paradox especially in the early stages of dementia (74). Carers with a low acceptance of the impact of the disease may experience more negative emotions in the day-to-day interaction with the person with dementia. Low acceptance manifests in carers not

acknowledging their need for support, which may cause those most in need of support not asking for help.

Interestingly, the results of the field-test supports this. Fifty-two percent of carers answered ‘yes’ to having a need for support to ask for help for themselves (i13), and 53.4 % of carers answered ‘yes’ to needing support to accept supportive services for themselves (i15) (Paper III). Combining the findings of Studies 1-3 demonstrated the necessity of systematic needs assessment among carers to redeem the full potential of carers’ contribution to ensuring the health and well-being of the person with dementia without doing so at the expense of carers’ health and well-being.

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Carers having support needs of their own yet, at the same time, finding it hard to express these needs, reflects the complexity of assessing support needs. It indicates that the full extent of carers’ need for support may only be identified when acknowledging that support needs arise from several perspectives:

the needs of carers themselves, the needs of the person with dementia and needs that emerge in the interaction between them (Paper I). The reciprocity of needs between the person with dementia and the carer has been identified before (141). It may be explained by carers’ need for feeling connected with the person with dementia and those around them, as well as a protection of their social roles (142). Also, carers’ support needs arising from the perspective of the person cared for may be elucidated by carers’

need to keep the person with dementia both physically and psychologically safe (141). Findings in Study 2 echo this need of keeping the person with dementia safe and making sure that he/she is offered

appropriate activities. In addition, emphasising support needs arising from the position of carers

themselves is necessary, because carers often have to balance a hectic daily life managing both the caring role and coping with their own issues associated with family and work (143,144). Some carers are more resourceful, and carers’ capacity for being optimistic, accepting and communicating positively have proven important for carers’ ability to adapt to changes and cope with the burden of caring (145). When assessing carers’ support needs, it is therefore important that a person-centred approach, incorporating carers’

personal needs and the context of caring, is used in order to appreciate the full extent of support needs.

17.1.2 The complexity of carers’ support needs

Assuming a holistic understanding of health and well-being, as founded in the biopsychosocial model, is a way of incorporating a person-centred approach to identifying carers’ support needs (5,86,146). Individual carers have their own strengths and resources based on their unique experiences, values and motivations (147). Therefore, carers’ need for support depends on their individual situation and specific physical and social context of caring. The complexity of carers’ support needs indicates that carers’ support needs consist of physical, psychological and social components to maintain daily functioning in addition to environmental and personal factors influencing the health and well-being of the carer (Paper II).

Assessment of carers’ unique problems and needs should therefore precede any supportive interventions (84) in combination with identifying barriers to, and facilitators of, carers’ ability to ask for help and the mismatch between supportive services offered and carers’ need for support (139).

In general, support needs identified in Studies 1 and 2 and the content of existing instruments measuring carers’ needs were found to be overlapping. When generating items in DeCANT, items had to be exhaustive of all support needs to make sure that the questionnaire was measuring the full extent of carers’ support needs (2). Initially, 63 items were generated, representing all support needs identified with respect to including the positions of needs originating from carers themselves, the person with dementia and the

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interaction between them. To investigate if the needs identified actually contained the complexity of assessing carers’ support needs, the ICF was used as a comprehensive framework to which all items were linked (111). Linking of items demonstrated that all components to maintain functioning in daily life and contextual factors were included (3). Although, the ICF has been developed as a classification system on which assessment tools with a person-centred approach may be based, it has limitations. Personal contextual factors have not yet been classified, because social and cultural differences make it difficult to reach scientific consensus on coding of content (148).This means that linking of items to personal factors is dependent on interpretation of the team coding the content of the items. In this thesis, the linking of items to personal factors has been straightforward, because the description in the ICF regarding what is

contained in the personal factors was sufficient to conclude linking of items (147). Apart from this limitation, the ICF is considered a strong theoretical framework, and it is used worldwide as a common language to organise complex information on physical, psychological and social aspects of individuals’

problems and needs (86).