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      The needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey

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          Abstract

          Background

          Few reports have been published about differences in perspectives on perceived needs among community-residing people with dementia, their family caregivers, and professionals. The aim of this study was to compare these perspectives.

          Method

          During 2006 and 2007, one-hundred and fifty two interviews of people with dementia and their caregivers about the needs of the person with dementia were performed by four professionals using The Camberwell Assessment of Need for the Elderly (CANE). Professionals’ views on met and unmet needs of people with dementia were obtained for the total sample, family caregivers’ perspectives were gained for 125 people with dementia, and people with dementia’s views on their own needs were obtained for 125 persons with dementia.

          Results

          People with dementia reported fewer needs compared with the reports of their caregivers and the professionals. The most frequent unmet needs reported by people with dementia, caregivers and professionals were in the areas of daytime activities, company, and psychological distress; however, people with dementia rated psychological distress as the commonest unmet need.

          Conclusions

          Since the priorities of people with dementia can be different from those of caregivers and professionals, it is important to consider all perspectives when making care plans. Thus, compliance with treatment of people with dementia and also their quality of life could be potentially improved by a more collaborative partnership with them.

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          Most cited references24

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          A Coefficient of Agreement for Nominal Scales

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            The kappa statistic in reliability studies: use, interpretation, and sample size requirements.

            This article examines and illustrates the use and interpretation of the kappa statistic in musculoskeletal research. The reliability of clinicians' ratings is an important consideration in areas such as diagnosis and the interpretation of examination findings. Often, these ratings lie on a nominal or an ordinal scale. For such data, the kappa coefficient is an appropriate measure of reliability. Kappa is defined, in both weighted and unweighted forms, and its use is illustrated with examples from musculoskeletal research. Factors that can influence the magnitude of kappa (prevalence, bias, and non-independent ratings) are discussed, and ways of evaluating the magnitude of an obtained kappa are considered. The issue of statistical testing of kappa is considered, including the use of confidence intervals, and appropriate sample sizes for reliability studies using kappa are tabulated. The article concludes with recommendations for the use and interpretation of kappa.
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              The effect of a disease management intervention on quality and outcomes of dementia care: a randomized, controlled trial.

              Adherence to dementia guidelines is poor despite evidence that some guideline recommendations can improve symptoms and delay institutionalization of patients. To test the effectiveness of a dementia guideline-based disease management program on quality of care and outcomes for patients with dementia. Clinic-level, cluster randomized, controlled trial. 3 health care organizations collaborating with 3 community agencies in southern California. 18 primary care clinics and 408 patients with dementia age 65 years or older paired with 408 informal caregivers. Disease management program led by care managers and provided to 238 patient-caregiver pairs at 9 intervention clinics for more than 12 months. Adherence to 23 guideline recommendations (primary outcome) and receipt of community resources and patient and caregiver health and quality-of-care measures (secondary outcomes). The mean percentage of per-patient guideline recommendations to which care was adherent was significantly higher in the intervention group than in the usual care group (63.9% vs. 32.9%, respectively; adjusted difference, 30.1% [95% CI, 25.2% to 34.9%]; P < 0.001). Participants who received the intervention had higher care quality on 21 of 23 guidelines (P < or = 0.013 for all), and higher proportions received community agency assistance (P < or = 0.03) than those who received usual care. Patient health-related quality of life, overall quality of patient care, caregiving quality, social support, and level of unmet caregiving assistance needs were better for participants in the intervention group than for those in the usual care group (P < 0.05 for all). Caregiver health-related quality of life did not differ between the 2 groups. Participants were well-educated, were predominantly white, had a usual source of care, and were not institutionalized. Generalizability to other patients and geographic regions is unknown. Also, costs of a care management program under fee-for-service reimbursement may impede adoption. A dementia guideline-based disease management program led to substantial improvements in quality of care for patients with dementia. Current Controlled Trials identifier: ISRCTN72577751.
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                Author and article information

                Journal
                BMC Health Serv Res
                BMC Health Serv Res
                BMC Health Services Research
                BioMed Central
                1472-6963
                2013
                4 February 2013
                : 13
                : 43
                Affiliations
                [1 ]Escuela de Psicología, Facultad de Medicina, Universidad de Valparaíso, Av. Brasil 2140, Valparaíso, Chile
                [2 ]Dementia Services Development Centre, Bangor University, 45 College Road, Bangor, LL57 2AS, UK
                [3 ]Unit of Mental Health Sciences, University College London, London, 67-73 Riding House Street, London, W1W 7EJ, UK
                Article
                1472-6963-13-43
                10.1186/1472-6963-13-43
                3568411
                23379786
                562e41a9-c3cf-44b6-a6cc-6fed8f303892
                Copyright ©2013 Miranda-Castillo et al.; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 27 December 2011
                : 23 January 2013
                Categories
                Research Article

                Health & Social care
                needs assessment,dementia,caregiver,community-dwelling
                Health & Social care
                needs assessment, dementia, caregiver, community-dwelling

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