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Introduction: People with dementia and their relatives should have timely access to formal care in the community. The EU-Actifcare project analysed access to and use of formal services, as related to unmet needs for care. We describe the cohort study implementation and baseline results in Portugal, with a focus on needs for care and service use assessments., Material and Methods: Our convenience sample consisted of 66 dyads of community-dwelling people with mild to moderate dementia and no significant use of formal services, and their informal carers. Measures included the Camberwell Assessment of Need for the Elderly and Resources Utilization in Dementia., Results: People with dementia had unmet needs (mean 1.1; SD 1.7), mainly regarding company (23%), psychological distress (20%), and daily activities (14%). Family caregivers spent 150 minutes/day (median) providing support, and 44% had psychological distress unmet needs. Problems with access to or use of formal services, when present, were frequently due to attitudes or lack of knowledge of any or both members of the dyad., Discussion: The recruitment process was challenging, since the inclusion criteria were restrictive. Not claiming generalizability, we recruited a typical sample of Portuguese people with mild to moderate dementia and no significant formal community support. Levels and type of unmet needs found in some participants would call for formal support, were it not for problems regarding access or use., Conclusion: There are difficulties regarding timely access and effective use of formal care in dementia, along with relevant unmet needs.

Objective: The Actifcare (Access to timely formal care) study investigated needs of people with dementia and their families during the phase in which formal care is being considered, and examined whether higher need levels are related to lower quality of life (QOL)., Method: From eight European countries 451 people with dementia and their carers participated. Needs were measured with the Camberwell Assessment of Need for the Elderly. QOL was measured with the QOL-AD, and carer quality of life was measured with the CarerQol. The relationship between needs and QOL was analysed with multiple regression analyses., Results: Needs were expressed in the domains of psychological distress, daytime activities, company and information. People with dementia rated their unmet needs significantly lower than their carers: the mean number of self-rated unmet needs was 0.95, whereas the mean proxy ratings were 1.66. For met needs, the self-rated mean was 5.5 and was 8 when proxy-rated. The level of needs reported was negatively associated with QOL for both., Conclusion: The study results show that informal carers reported almost twice as many needs as people with dementia. The domains in which needs are expressed should be the primary focus for interventions to support   QOL. The perspectives of people with dementia are informative when identifying needs.

Background: Previous findings indicate that people with dementia and their informal carers experience difficulties accessing and using formal care services due to a mismatch between needs and service use. This mismatch causes overall dissatisfaction and is a waste of the scarce financial care resources. This article presents the background and methods of the Actifcare (ACcess to Timely Formal Care) project. This is a European study aiming at best-practice development in finding timely access to formal care for community-dwelling people with dementia and their informal carers. There are five main objectives: 1) Explore predisposing and enabling factors associated with the use of formal care, 2) Explore the association between the use of formal care, needs and quality of life and 3) Compare these across European countries, 4) Understand the costs and consequences of formal care services utilization in people with unmet needs, 5) Determine the major costs and quality of life drivers and their relationship with formal care services across European countries., Methods: In a longitudinal cohort study conducted in eight European countries approximately 450 people with dementia and informal carers will be assessed three times in 1 year (baseline, 6 and 12 months). In this year we will closely monitor the process of finding access to formal care. Data on service use, quality of life and needs will be collected., Discussion: The results of Actifcare are expected to reveal best-practices in organizing formal care. Knowledge about enabling and predisposing factors regarding access to care services, as well as its costs and consequences, can advance the state of the art in health systems research into pathways to dementia care, in order to benefit people with dementia and their informal carers.

Background: The Camberwell Assessment of Need for the Elderly (CANE) is widely used for multidimensional evaluation of older people with mental health problems. The aim of this study was to evaluate reliability and validity of a Portuguese version of CANE., Method: A cross-sectional multicenter study was designed using a convenience sample of elderly mental health services' users. CANE was compared with EASYCare, GHQ12, MMSE, Barthel Index and GDS15 to assess criterion and construct validity. Inter-rater and test-retest reliability were also assessed., Results: 79 patients (76% female), with mean age of 74 (+/- 6.6) years were included. Most patients lived at home with a family caregiver, generally female. Only 32% had no carer. Dementia was the commonest psychiatric diagnosis (61%) and somatic comorbidity was very prevalent (85%). Kappa values (kappa) for inter-rater item reliability ranged from 0.72 to 1.00 (mean values: 0.96 patient, 0.93 carer, 0.90 staff). The intraclass correlation coefficient (ICC) for total scores ranged from 0.95 to 0.98.For test-retest item reliability, the mean kappa value was: 0.80 patient, 0.77 carer, 0.81 staff. ICC for total scores ranged from 0.82 to 0.92. Given the absence of a gold standard, criterion validity was assessed by comparing CANE with EASYCare (rs 0.460; p < or = 0.01), GDS (rs 0.615; p < or = 0.01), GHQ (rs 0.581; p < or = 0.01) and Barthel Index (rs-0.435; p < or = 0.01). Overall, inter-item and item-total correlations for CANE and item comparison with other measures indicated reasonable construct validity., Conclusion: The psychometric proprieties of CANE seem to be consistently good, in accordance with other studies. Robust results on ecological, face, content, criterion and construct validity, as well as good reliability, were achieved. This version is a promising tool for research and practical use in Portuguese old age settings.

Considerable effort has been invested in improving assessment processes for older people, some of the most vulnerable of whom live in care homes. The paper compares two well-known assessment tools used in care homes, the CANE and the Minimum Data Set/Resident Assessment Instrument. There was poor agreement between the tools in terms of domains of need covered. Nineteen pairs of items could be compared, with agreement greater than 60% found on 11 items. Of the 15 items where kappa could be computed, seven significant values were found. High levels of agreement existed in relation to behaviour, psychological wellbeing, mood state, psychotic symptoms, incontinence, mobility and inadvertent self-harm (risk). The study suggests that tools commonly used for assessment are not interchangeable and that the selection of assessment tool should be determined by the setting in which it is used, the needs of the population being assessed, the skills and knowledge of those undertaking the assessment and the purpose of the assessment itself.

Background: People with dementia in care homes are at risk of having their views ignored and decisions are often made on their behalf by care home staff and family carers. The aim of this study was to compare the ratings of needs of older people with dementia living in care homes, as assessed by the older person themselves, a family caregiver, and the staff of the care home., Method: The Camberwell Assessment of Need for the Elderly (CANE) was completed for 238 residents with dementia by care staff. In addition, 149 users and 81 family caregivers also completed the assessment of the person's met and unmet needs., Results: Many users were able to report their met and unmet needs despite having moderately severe dementia. The views of the person with dementia were commonly in agreement with the staff and family carers' views. However, user and carer pairs had the lowest average percentage agreement of 63% compared to that of 77% between user and staff pairs. In particular, users reported relatively higher unmet needs for psychological distress, company and information, and high unmet needs for daytime activities and eyesight/hearing problems., Conclusions: Users' views on their needs should be sought even when the person has dementia and lives in a care home. Reliance solely on assessment by staff or carers may lead to under recognition of unmet needs.

Objectives: To investigate the effect of a general practitioner's 'patient centredness' on identification of unmet needs in older adults., Design: Correlational questionnaire based study with a descriptive element., Setting: Two south London general practice surgeries., Participants: Sixty seven patients over the age of 65 visiting their general practitioner (GP) for a new episode of care., Main Outcome Measures: Assessment of unmet needs and patients' perceptions of GP patient centredness., Results: Having one or more unmet needs on the Camberwell Assessment of Need for the Elderly (CANE) was not associated with evaluations of GP patient centredness (t (64) = - 0.334, P = 0.740). After their GP consultation, 35 (52.2%) participants still had at least one unmet need on the CANE. The most common unmet needs were information (13, 19.4%), eyesight/hearing (11, 16.4%) and benefits (11, 16.4%). A large proportion of the patient sample (28, 41.8%) who perceived their problems were dealt with by the consultation, had unmet needs on the CANE., Conclusions: The patient-centred approach was highly valued but was not linked to reduced unmet needs. Many older people tolerate unmet needs and seem reluctant to acknowledge them or mention them to their GP.

Background: Individual assessment of needs has been recognised as the most appropriate way to allocate health and social care resources. These assessments, however, are often made by the staff or by a carer who acts as an advocate for the user themselves. Little is known about how these proxy measures compare to how individual patients perceive their own needs., Aim: The aim of this study was to measure and compare ratings of need for older people with mental health problems by the older person themselves, their carer, and an appropriate staff member., Method: One-hundred and one older people were identified from various mental health services and 87 users, 57 carers, and 95 staff were interviewed using the Camberwell Assessment of Need for the Elderly (CANE) to identify met and unmet needs., Results: Users identified significantly fewer of their needs (5.5) than either staff (8.1) or carers (8.3) did, but this difference was accounted for by people with dementia reporting less needs. Users identified fewer psychological or social needs (e.g. daytime activities, company, or carer distress) than staff or carers did. The average Kappa indicating level of agreement between staff and user was 0.52, between user and carer was 0.53, and between carer and user was 0.58. This showed only a fair level of reliability between different ratings of need., Conclusions: User perspectives should be given a high priority when assessing individual needs. Fears that assessment of need would be unduly time-consuming or would simply reflect individual demands should be allayed. A user-based assessment will assist healthcare providers to prioritise needs according to what the user themselves consider to be most important, beneficial, and acceptable to them. Reliance solely on assessment by staff or carers may not lead to the most equitable or appropriate use of services., (Copyright 2003 John Wiley & Sons, Ltd.)

There is little evidence to indicate how far psychiatric day hospitals for older people can identify and address the needs of older people who attend. The current practice of Care Programme Approach (CPA) in which multidisciplinary team members, patients and their families meet, may provide a suitable forum for needs to be discussed and interventions planned and implemented. One hundred and twelve new day hospital patients over a period of one year were randomly allocated to an experimental group in which the Camberwell Assessment of Need for the Elderly (CANE). Assessment reports were fed back to day hospital staff but not to the control group in which routine practice was maintained. Similar follow-up assessments were performed after three months in the day hospital or at the time of discharge. At follow-up, both the experimental and control groups had over 60% of their initial unmet needs being adequately met. In both groups, the Health of the Nation Outcome Scales 65+ scores and number of unmet needs were reduced indicating an improvement for both groups. However, there were no significant differences in outcome at follow-up between the experimental and control groups. Day hospitals for older people with mental health problems appear effective in identifying and meeting needs. The feedback from CANE made no difference in terms of outcome.

This article describes the met and unmet needs of elderly residents of nursing care (NC) and residential care (RC) settings. Thirty-four residents of an RC home and 40 residents of two NC settings were assessed. Each resident and a respective staff member were interviewed using the Camberwell Assessment of Need for the Elderly (CANE) to indicate the resident's current met and unmet needs. The Clifton Assessment Procedure for the Elderly-Behaviour Rating Scale (CAPE-BRS) was completed by the staff member to indicate the participant's current level of dependency. In addition, the Mini-Mental State Examination was administered to participants and DSM-IV diagnosis was recorded. A high number of needs were found in both RC and NC settings, the level of dependency being proportional to level of need. There was a core set of needs in both samples related to difficulties with accommodation, food preparation, and self-care. Both NC and RC homes were meeting these needs; however, RC residents had a significantly greater level of unmet need for suitable day-time activities. The greatest predictor of type of setting was gender and there were significantly more females in RC. Controlling for gender, participants in NC had greater levels of dependency, particularly problems with apathy and social skills, as measured on the CAPE-BRS. It is possible that-the greater level of social needs in NC residents had led to their placement in the more specialized NC settings. On the other hand, NC settings may be left caring for a group of residents that, because of their specific needs, have been difficult to place into RC. These findings have clinical implications for the future development of continuing care for the elderly. This study also highlighted that there is a substantial need for specialist services to address the unmet needs in these two types of continuing-care settings, such as interventions for social disturbances in NC and suitable daytime activities in RC. The CANE is a useful instrument to evaluate such needs in long-term-care settings.

Background: Despite decades of research showing high rates of unmet need in older people, there currently is little understanding of why these needs remain unmet. This study was performed as part of a larger feasibility study of a multidisciplinary needs assessment tool in primary care., Objective: The aim of the present study was to explore patients' and carers' help-seeking behaviour and perceived barriers to meeting unmet needs., Method: Four general practices were selected purposefully in inner city and suburban London A random sample of 1 in 20 people aged 75 years and over registered with each practice was selected for a multidisciplinary needs assessment using the 'Camberwell Assessment of Need for the Elderly' (CANE) schedule and unmet needs identified by patients and their informal carers. For each unmet need, a further semi-structured interview was used to explore the help-seeking behaviour and perceived barriers to meeting their needs. Responses were recorded verbatim contemporaneously and a thematic analysis performed on perceived barriers following completion of all interviews., Results: A total of 55/84 (65.5%) of patients and 15/17 (88%) of carers completed the initial needs assessment. For 104 unmet needs identified by 31 patients and 11 carers, a further interview was completed on the barriers to meeting that need. Help had been sought for only 25/104 (24%) of unmet needs and it had been offered in only 19/104 (18%). In those not seeking help, withdrawal, resignation and low expectations were dominant themes. In those that had sought help, there were issues of perceived failure of service delivery and rationing, with themes of resignation and withdrawal again emerging in those declining help offered., Conclusion: The majority of older people and their carers do not appear to seek help for their unmet needs for a range of complex reasons, often involving issues of withdrawal, resignation and low expectations. This complexity has implications for the commissioning of services for older people.

Background: despite evidence that needs assessment of older people can improve survival and function when linked to effective long-term management, there is no structured needs assessment tool in widespread use. The Camberwell Assessment of Need for the Elderly is a new tool not previously evaluated in primary care. It includes the views of patients, carers and health professionals, enabling a direct comparison of their perspectives., Aim: to conduct a feasibility study of Camberwell Assessment of Need for the Elderly in primary care and to compare the needs identified by patients, carers and health professionals., Methods: we selected a random sample of 1:20 of all people aged 75 and over from four general practices in inner-city and suburban north-west London. We interviewed the patients, their informal carers and lead health professionals using the Camberwell Assessment of Need for the Elderly schedule., Results: 55 (65.5%) of 84 patients, 15 (88.2%) of 17 carers and all of 55 health professionals completed interviews. The patients' three most frequently identified unmet needs were with 'eyesight/hearing', 'psychological distress' and 'incontinence'. The carers' three most frequently identified unmet needs were with 'mobility', 'eyesight/hearing' and 'accommodation' and the health professionals' were with 'daytime activities', 'accommodation' and 'mobility'. Kappa tests comparing patient and health professional assessments showed poor or fair agreement with 18 of the 24 variables and moderate or good agreement with six. None showed very good agreement., Conclusion: the Camberwell Assessment of Need for the Elderly schedule is feasible to use in primary care and can identify perceived needs not previously known about by health professionals. A shorter version of Camberwell Assessment of Need for the Elderly focusing on areas of poor agreement and high levels of need might be useful in the assessment of needs in older people in primary care.

Background: There exists no instrument specifically designed to measure comprehensively the needs of older people with mental disorders., Aim: To develop such an instrument which would take account of patients', staff and careers' views on needs., Method: Following an extensive development process, the assessment instrument was subjected to a test-retest and interrater reliability study, while aspects of validity were addressed both during development and with data provided by sites in the UK, Sweden and the USA., Results: The Camberwell Assessment of Need for the Elderly (CANE) comprises 24 items (plus two items for career needs), and records staff, career and patient views. It has good content, construct and consensual validity. It also demonstrates appropriate criterion validity. Reliability is generally very high: kappa > 0.85 for all staff ratings of interrater reliability. Correlations of interrater and test-retest reliability of total numbers of needs identified by staff were 0.99 and 0.93, respectively., Conclusions: The psychometric properties of the CANE seem to be highly acceptable. It was easily used by a wide range of professionals without formal training.

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.