Abstract
BackgroundTo 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).MethodsThis mixed method exploratory study compared measures of carer burden with community services received and unmet needs, for 20 community-dwelling carer/care-recipient pairs.ResultsA 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 in-home 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.ConclusionWhen 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.
Highlights
To ensure carers of people with dementia receive support, community services increasingly use measures of caregiver burden to assess for unmet need
Despite the relatively small sample size, participants' characteristics fitted within the range of those reported in studies of Australian carers and people with dementia, though we had a higher proportion of female carers and more male care-recipients
The mixed method design we utilised provides a different strength through triangulation of quantitative with qualitative data, in which interlinked contextual information informed the interpretation of measurement results. Overall, this exploratory study suggests that normative need is not as useful as felt need when considering the health service needs of carers of people with dementia
Summary
To ensure carers of people with dementia receive support, community services increasingly use measures of caregiver (carer) burden to assess for unmet need. 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]. '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]. 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]
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