Measuring dementia carers' unmet need for services - an exploratory mixed method study

BMC Health Services Research RMeseearachsaurtirclieng dementia carers' unmet need for services - an exploratory mixed method study Christine Stirling 0 Sharon Andrews 0 Toby Croft James Vickers 0 Paul Turner Andrew Robinson 0 0 Wicking Dementia Research and Education Centre, Menzies Research Institute, University of Tasmania , Private Bag 121, Hobart TAS, 7000 Australia Background: To ensure carers of people with dementia receive support, community services increasingly use measures of caregiver (carer) burden to assess for unmet need. This study used Bradshaw's taxonomy of need to explore the link between measures of carer burden (normative need), service use (expressed need), and carer's stated need (felt need). Methods: This mixed method exploratory study compared measures of carer burden with community services received and unmet needs, for 20 community-dwelling carer/care-recipient pairs. Results: A simple one-item measure of carers' felt need for more services was significantly related to carer stress as measured on the GHQ-30. Qualitative data showed that there are many potential stressors for carers, other than those related to the care-giving role. We found a statistically significant rank correlation (p = 0.01) between carer's use of inhome respite and the care-recipient's cognitive and functional status which is likely to have been related to increased requirement for carer vigilance, effort and the isolation of spouse carers. Otherwise, there were no statistically significant relationships between carer burden or stress and level of service provision. Conclusion: When carers are stressed or depressed, they can recognise that they would like more help from services, even if measures of carer burden and care recipient status do not clearly indicate unmet service needs. A question designed to elicit carer' felt need may be a better indicator of service need, and a red flag for recognising growing stress in carers of people with dementia. Assessment of service needs should recognise the fallibility of carer burden measures, given that carer stress may not only come from caring for someone with dementia, but can be significantly compounded by other life situations. - Background Assessment and monitoring of caregiver (carer) burden are increasingly seen as essential factors in ensuring that carers receive community support [1], but the outcomes of this approach are uncertain. While meeting carer service needs has been the subject of increased policy and research interest, Bradshaw's [2] taxonomy of need has not been utilised in this context. Intervention studies often show non significant findings, and researchers increasingly question the usefulness of existing measures of carer burden [3,4]. It follows then that using these same measures to assess 'carer's service needs may generate misleading outcomes. This study contributes to knowledge about the options for assessing carer's unmet needs [4-6]. We argue here, that the complexity of carer's needs make it difficult to rely on measures of carer burden and care-recipient dependency for assessing carer's needs. The focus of this study is carers of persons with dementia, who provide critical support for care recipients by improving their quality of life and delaying entry to care homes [7]. With estimates of 63 million people with dementia globally in 2010 [8] and in recognition of the important economic and quality of life benefits provided by carers, policy makers are urgently seeking ways to ensure the ongoing capacity of carers to provide the bulk of care. 'Carer burden' is a term used to describe the negative effects of caring on carers' physical, mental, social, and financial well-being. Such effects are clearly evident in the context of caring for people with dementia [9,10]. Factors such as carer resources, the tasks of care (such as managing the behavioural and psychosocial symptoms of people with dementia), carer attributes, and the relationship between carers and carer recipients, interact in complex ways with carers' coping and wellbeing [1,5,6,11-13]. Service providers have attempted to capture this complexity through an increasing array of carer and carerecipient assessments, striving to prevent carer burnout by meeting carer' service needs [14]. In comparison with the general carer population, carers of people with dementia exhibit higher levels of unmet need and lower levels of service use [3,15,16]. This is problematic because the resultant physical and emotional distress for carers [17,18], is strongly predictive of impending entry to care homes or the death of the care recipient [18,19]. Community services are commonly seen as a key intervention for reducing carer burden, despite the inconsistent nature of research evidence [18,20]. Services such as respite, nursing assistance, domestic assistance, and personal care aim to support carers and people with dementia, so that ageing in place can be maintained as long as possible. Low levels of service use however, suggest that there are unrecognised obstacles to assessing and meeting carer needs [14]. Respite care, for example, is one of the major forms of assistance directly targeted to carers [21], but in Australia this service is not used by up to 70% of carers [22]. Brodaty et al. [23] developed a typology of four reasons for service non-use in dementia carers: 'managing at the moment', 'reluctant to use services', 'service characteristics', and 'do not know about services'. Studies show that a complex range of socio-cultural factors is implicated in carer 'reluctance to use services', including carer identity barriers, fear of role change, concerns for privacy, financial factors, and personal characteristics [11,13,23]. This complex causality of carers' service needs has to date been addressed through an increasing reliance on comprehensive assessments of carer need. Service organisations typically use a range of assessment tools at admission to assess carers' service needs, which generally act as a 'gateway' to services. In this approach, a care professional "begins with the identification of specific difficulties, accounts for the presence and efficacy of current help, recognises perceived need and finally specifie[s] the type of intervention required to meet those needs" [[3]: 323]. Within this paradigm, the care professional focuses assessment on the status of the person with dementia, the subsequent perceived burden on the carer, and any existing socio-economic support deficits [3]. However, given the increasing awareness of the complexity of factors that may be responsible for unmet need [18], such an approach promises an increasing cost in terms of time and other resources. Given the recognised socio-cultural complexity of carers unmet needs, alternatives to the professional assessment paradigm is needed [24]. We adopted Bradshaw's [2] sociological typology of need as one that might best capture the complexity of carers' situati (...truncated)