Evaluating the effectiveness and cost-effectiveness of Dementia Care Mapping™ to enable person-centred care for people with dementia and their carers (DCM-EPIC) in care homes: study protocol for a randomised controlled trial

Background Up to 90 % of people living with dementia in care homes experience one or more behaviours that staff may describe as challenging to support (BSC). Of these agitation is the most common and difficult to manage. The presence of agitation is associated with fewer visits from relatives, poorer quality of life and social isolation. It is recommended that agitation is treated through psychosocial interventions. Dementia Care Mapping™ (DCM™) is an established, widely used observational tool and practice development cycle, for ensuring a systematic approach to providing person-centred care. There is a body of practice-based literature and experience to suggests that DCM™ is potentially effective but limited robust evidence for its effectiveness, and no examination of its cost-effectiveness, as a UK health care intervention. Therefore, a definitive randomised controlled trial (RCT) of DCM™ in the UK is urgently needed. Methods/design A pragmatic, multi-centre, cluster-randomised controlled trial of Dementia Care Mapping (DCM™) plus Usual Care (UC) versus UC alone, where UC is the normal care delivered within the care home following a minimum level of dementia awareness training. The trial will take place in residential, nursing and dementia-specialist care homes across West Yorkshire, Oxfordshire and London, with residents with dementia. A random sample of 50 care homes will be selected within which a minimum of 750 residents will be registered. Care homes will be randomised in an allocation ratio of 3:2 to receive either intervention or control. Outcome measures will be obtained at 6 and 16 months following randomisation. The primary outcome is agitation as measured by the Cohen-Mansfield Agitation Inventory, at 16 months post randomisation. Key secondary outcomes are other BSC and quality of life. There will be an integral cost-effectiveness analysis and a process evaluation. Discussion The protocol was refined following a pilot of trial procedures. Changes include replacement of a questionnaire, whose wording caused some residents distress, to an adapted version specifically designed for use in care homes, a change to the randomisation stratification factors, adaption in how the staff measures are collected to encourage greater compliance, and additional reminders to intervention homes of when mapping cycles are due, via text message. Trial registration Current Controlled Trials ISRCTN82288852. Registered on 16 January 2014. Full protocol version and date: v7.1: 18 December 2015

An Interpretive Phenomenological Analysis (IPA) of coercion towards community dwelling older adults with dementia: Findings from MYsore studies of Natal effects on Ageing and Health (MYNAH)

The final publication is available at Springer via http://dx.doi.org/10.1007/s00127-016-1286-4Purpose Limited availability of specialist services places a considerable burden on caregivers of Persons with Dementia (PwD) in Low- and Middle-Income Countries (LMICs). There are limited qualitative data on coercive behavior towards PwD in an LMIC setting. Aim The aim of this study was to find relevant themes of the lived experience of relatives as caregivers for PwD in view of their use of coercive measures in community setting in South India. Method Primary caregivers (n = 13) of PwDs from the Mysore study of Natal effects on Ageing and Health (MYNAH) in South India were interviewed to explore the nature and impact of coercion towards community dwelling older adults with dementia. The narrative data were coded using an Interpretative Phenomenological Analysis (IPA) approach for thematic analysis and theory formation. Results Caregivers reported feeling physical and emotional burn-out, a lack of respite care, an absence of shared caregiving arrangements, limited knowledge of dementia, and a complete lack of community support services. They reported restrictions on their lives through not being able take employment, a poor social life, reduced income and job opportunities, and restricted movement that impacted on their physical and emotional well-being. Inappropriate use of sedatives, seclusion and environmental restraint, and restricted dietary intake, access to finances and participation in social events, was commonly reported methods of coercion used by caregivers towards PwD. Reasons given by caregivers for employing these coercive measures included safeguarding of the PwD and for the management of behavioral problems and physical health. Conclusion There is an urgent need for training health and social care professionals to better understand the use of coercive measures and their impact on persons with dementia in India. It is feasible to conduct qualitative research using IPA in South India

Chronic disease prevalence and care among the elderly in urban and rural Beijing, China - a 10/66 Dementia Research Group cross-sectional survey

<p>Abstract</p> <p>Background</p> <p>Demographic ageing is occurring at an unprecedented rate in China. Chronic diseases and their disabling consequences will become much more common. Public policy has a strong urban bias, and older people living in rural areas may be especially vulnerable due to limited access to good quality healthcare, and low pension coverage. We aim to compare the sociodemographic and health characteristics, health service utilization, needs for care and informal care arrangements of representative samples of older people in two Beijing communities, urban Xicheng and rural Daxing.</p> <p>Methods</p> <p>A one-phase cross-sectional survey of all those aged 65 years and over was conducted in urban and rural catchment areas in Beijing, China. Assessments included questionnaires, a clinical interview, physical examination, and an informant interview. Prevalence of chronic diseases, self-reported impairments and risk behaviours was calculated adjusting for household clustering. Poisson working models were used to estimate the independent effect of rural versus urban residence, and to explore the predictors of health services utilization.</p> <p>Results</p> <p>We interviewed 1002 participants in rural Daxing, and 1160 in urban Xicheng. Those in Daxing were more likely to be younger, widowed, less educated, not receiving a pension, and reliant on family transfers. Chronic diseases were more common in Xicheng, when based on self-report rather than clinical assessment. Risk exposures were more common in Daxing. Rural older people were much less likely to access health services, controlling for age and health. Community health services were ineffective, particularly in Daxing, where fewer than 3% of those with hypertension were adequately controlled. In Daxing, care was provided by family, who had often given up work to do so. In Xicheng, 45% of those needing care were supported by paid caregivers. Caregiver strain was higher in Xicheng. Dementia was strongly associated with care needs and caregiver strain, but not with medical helpseeking.</p> <p>Conclusion</p> <p>Apparent better health in Daxing might be explained by under-diagnosis, under-reporting or selective mortality. Far-reaching structural reforms may be needed to improve access and strengthen rural healthcare. The impact of social and economic change is already apparent in Xicheng, with important implications for future long-term care.</p

Multisensory stimulation to improve functional performance in moderate to severe dementia - interim results

Dementia is a growing problem worldwide and interventions to effectively manage and promote function are urgently required. Multisensory Environments (MSEs) have been used to promote functional performance, however, no studies have been conducted to explore the efficacy of MSEs on functional performance in dementia. This RCT explores to what extent MSEs influence functional performance in people with moderate / severe dementia compared with a control activity.Thirty participants with moderate / severe dementia were recruited form the south of England. Following baseline assessment and design of a bespoke intervention, each participant attended their allocated intervention (3 x wk, for 4 weeks). Assessments were carried out pre and post-session using the Assessment of Motor and Process Skills (AMPS). Results indicate significant improvement in functional performance in both the MSE and of the control activity. Findings support the use of MSEs as a strategy for enhancing functional performance in dementia. <br/

Understanding food in aged care facilities: Findings from a case study \ua0

Abstract not available

Six generations of CHMP2B-mediated Frontotemporal Dementia: Clinical features, predictive testing, progression, and survival

OBJECTIVES: Chromosome 3-linked frontotemporal dementia (FTD-3) is caused by a c.532-1G > C mutation in the CHMP2B gene. It is extensively studied in a Danish family comprising one of the largest families with an autosomal dominantly inherited frontotemporal dementia (FTD). This retrospective cohort study utilizes demographics to identify risk factors for onset, progression, life expectancy, and death in CHMP2B-mediated FTD. The pedigree of 528 individuals in six generations is provided, and clinical descriptions are presented. Choices of genetic testing are evaluated. MATERIALS AND METHODS: Demographic and lifestyle factors were assessed in survival analysis in all identified CHMP2B mutation carriers (44 clinically affected FTD-3 patients and 16 presymptomatic CHMP2B mutation carriers). Predictors of onset and progression included sex, parental disease course, education, and vascular risk factors. Life expectancy was established by matching CHMP2B mutation carriers with average life expectancies in Denmark. RESULTS: Disease course was not correlated to parental disease course and seemed unmodified by lifestyle factors. Diagnosis was recognized at an earlier age in members with higher levels of education, probably reflecting an early dysexecutive syndrome, unmasked earlier in people with higher work-related requirements. Carriers of the CHMP2B mutation had a significant reduction in life expectancy of 13 years. Predictive genetic testing was chosen by 20% of at-risk family members. CONCLUSIONS: CHMP2B-mediated FTD is substantiated as an autosomal dominantly inherited disease of complete penetrance. The clinical phenotype is a behavioral variant FTD. The disease course is unpredictable, and life expectancy is reduced. The findings may be applicable to other genetic FTD subtypes

The cultural and political context of the lives of people with dementia in Kerala, India

This article draws on available literature and empirical data to discuss the experiences of people with dementia in Kerala, India. India is currently undergoing considerable demographic change. The state of Kerala in the south-west of the country is demographically advanced in comparison with other parts of India and as such is experiencing demographic change and modernization ahead of other parts of the country. The proportion and numbers of older people in Kerala are increasing, which in turn is leading to a higher prevalence of dementia. This article reviews existing literature to describe the context for people with dementia in Kerala. It also draws on empirical data to further illustrate and explore their experiences. People with dementia in Kerala are disadvantaged, as the process of modernization is breaking down traditional forms of care ahead of any significant service provision to replace them. Recent development of services in Kerala aims to provide quality care for people with dementia to counteract these demographic changes

Prognosis and vascular co-morbidity in dementia a historical cohort study in general practice.

Contains fulltext : 71366.pdf (publisher's version ) (Closed access)BACKGROUND: Disease management of dementia in general practice (GP) is hampered by a lack of data on the prognosis of dementia. AIM: To gain more insight into the life expectancy of and the effects of cardiovascular and cerebrovascular co-morbidity in dementia patients in GP. DESIGN OF STUDY: Historical cohort. SETTING: 4 general practices in Nijmegen, The Netherlands. POPULATION: All patients in these practices participating in the Continuous Morbidity Registration (CMR). METHODS: The patient cohort was diagnosed with dementia between January 1st 1985 and December 31st 2002. The control cohort consisted of patients matched one-to-one with demented patients on age, sex, and socio-economic status. Cardiovascular and cerebrovascular co-morbidity was studied from 5 years before the diagnosis of dementia till the endpoints of data collection. RESULTS: 251 couples of patients and controls were formed (79 men, 172 women, mean age 81.4+/-7.0 years). The median life expectancy after diagnosis was 2.3 years for the dementia patients, and 3.7 years for the controls. Median time from diagnosis till nursing home placement was 1.4 years. Cerebrovascular and cardiovascular morbidity preceding dementia diagnosis decreased survival of cases with dementia with a relative risk of 1.54 (95%CI: 1.13-2.09) and in controls with a relative risk of 1.91 (95%CI: 1.48-2.46). Obesity was associated with a lower risk of dementia (RR=0.77 (95%-CI 0.63-0.94)). Hypertension and obesity diagnosed after the dementia diagnosis were significantly associated with an increase in survival. CONCLUSION: In general practice, the diagnosis of dementia is made at a late stage, when patients will continue to live at home only for a short time. Moreover, life expectancy at diagnosis is very limited and prognosis is furthermore negatively influenced by preceding cardio- and cerebrovascular co-morbidity