The development of an instrument for assessing cognitive ability and screening for the cognitive decline associated with dementia in people with moderate to profound intellectual disability

Individuals with intellectual disability have a greater risk of developing dementia.The diagnosis of dementia relies on accurate testing of cognitive function however existing tests have limited utility in people whose intellectual disability is moderate or greater. A new test was developed and underwent preliminary testing to determine use across a wider ability spectrum. The Cognitive Baseline & Screener for People with Intellectual Disability (CBS-ID) was administered to a sample of 17 dyads (n=34) (people with intellectual disability (who completed CBS-ID) and caregivers (who provided an independent rating of function)).The CBS-ID performed well on several usability metrics across all intellectual disability level and was highly correlated with existing measures of cognitive function to which it was compared.Further research with a larger sample is needed to assess the test's ability to detect change in cognition over time & determine if it aids the process of diagnosing dementia.

Submission to KPMG review of the Federal Government Initiative to “analyse dementia program and services funded by the Department of Social Services"

The comments I make are based on my nearly twenty years involvement in the dementia cause at both a national and international level. In preparation, I read two papers namely the Ministerial Dementia Forum – Option Paper produced by KPMG Management Consultants (2014) and Analysis of Dementia Programmes and Services Funded by the Department of Social Services: Conversation Starter prepared by KPMG as a preparation document for those attending a workshop in Brisbane on April 22nd 2015. Dementia is a complex “syndrome” and as is often said, “when you meet one person with dementia, you have met one” meaning that no two persons with dementia are the same. Even in dementia care, Australia is a “lucky country” and there is much to be said for the quality and diversity of dementia care available for people living with dementia. Despite this, I agree with the many views expressed in the material I read that there is scope for improvement, especially in the way that services are coordinated. In saying that, I do not purport to have all the solutions nor claim to have the knowledge required to comment on all the programs covered by this review. If I appear to be a “biased” advocate for Alzheimer’s Australia across the States and Territories, it is because I have seen constant evidence of ordinary people doing extraordinary things with inadequate resources. Dementia care is not cheap and if those funding dementia services are primarily only interested in economic outcomes and benefits, the real purpose of this consultation will be defeated. In addition, nowhere in the material I have read is there any recognition that in many instances program funding is a complex mix of government (at all levels) and private funding. This makes reviewing those programs more complex and less able to be coordinated at a Departmental level. It goes without saying therefore that the Federal Government is not” the only player in this game”. Of all those participating in this review, Alzheimer’s Australia is best placed to comment on programs as it is more connected to people living with dementia and has probably the best record of consulting with them. It would appear however that their role has been reduced to that of a “bit player”. Without wanting to be critical, the Forum Report which deals with the comments made at a gathering of 70 individuals and organisations, only three (3) or 4.28% were actual carers of people living with dementia. Even if it is argued that a number of organisations present represented consumers, the percentage goes up only marginally to 8.57% which is hardly an endorsement of the forum being “consumer driven”. The predominance of those present were service providers, each with their own agenda and each seeking advantage for their “business”. The final point I want to make before commenting on more specific, program related issues, is that many programs being reviewed have a much longer history than is reflected in the material I have read. Their growth and development was pioneered by Alzheimer’s Australia organisations across the country often with no government funding. Attempts to bring about better coordination of programs were often at the behest of Alzheimer’s Australia but in the main were ignored. The opportunity to now put this right is long overdue.

The effectiveness of meaningful occupation interventions for people living with dementia in residential aged care: A systematic review protocol

Review questions/objective What is the effectiveness of meaningful occupation interventions for people living with dementia in residential aged care facilities? More specifically, the objectives are to identify: The effectiveness of interventions based on engaging residents of residential aged care facilities who have dementia in meaningful occupation (activities that have meaning for the individual) on: quality of life, behavioral and psychological symptoms of dementia (such as agitation, aggression, depression, wandering, apathy, etc.), mood, function, cognition, and sleep. Inclusion criteria Types of participants This review will consider studies that include participants with a confirmed diagnosis of any type of dementia living in residential aged care facilities / long term care/nursing homes/permanent care. Types of intervention(s)/phenomena of interest This review will consider studies that evaluate non-pharmacological interventions that are based on occupational or activity interventions considered to be meaningful to the person with dementia, and tailoring the intervention to meet their needs, abilities, interests and/or preferences will be required as part of the study’s methodology. Such interventions may include reminiscence therapy, exercise therapy, music therapy, individualized activity, behavioral interventions, recreational therapy, diversional therapy and psychosocial interventions. Trials of combinations of two or more such interventions will also be considered. Interventions may be in comparison to usual care, other meaningful occupation interventions, or any other non-pharmacological control or comparator.

Early onset dementia: A narrative review of the literature

Over the past forty years, significant research has been conducted on the epidemiology of late onset dementia. Less is known however, about the prevalence, incidence and burden of illness of early onset dementia (occurring prior to 65 years of age). The purpose of this narrative review is to examine existing literature regarding the experiences and implications of living with early onset dementia for patients, caregivers, and family members. The following questions were addressed: (1) What is the impact of early onset dementia on patients, families and carers? and; (2) What are the needs of patients with early onset dementia and their family and carers? Key findings form this review are presented.

Genome-wide scan of healthy human connectome discovers SPON1 gene variant influencing dementia severity

Aberrant connectivity is implicated in many neurological and psychiatric disorders, including Alzheimer's disease and schizophrenia. However, other than a few disease-associated candidate genes, we know little about the degree to which genetics play a role in the brain networks; we know even less about specific genes that influence brain connections. Twin and family-based studies can generate estimates of overall genetic influences on a trait, but genome-wide association scans (GWASs) can screen the genome for specific variants influencing the brain or risk for disease. To identify the heritability of various brain connections, we scanned healthy young adult twins with high-field, highangular resolution diffusion MRI. We adapted GWASs to screen the brain's connectivity pattern, allowing us to discover genetic variants that affect the human brain's wiring. The association of connectivity with the SPON1 variant at rs2618516 on chromosome 11 (11p15.2) reached connectome-wide, genome-wide significance after stringent statistical corrections were enforced, and it was replicated in an independent subsample. rs2618516 was shown to affect brain structure in an elderly population with varying degrees of dementia. Older people who carried the connectivity variant had significantly milder clinical dementia scores and lower risk of Alzheimer's disease. As a posthoc analysis, we conducted GWASs on several organizational and topological network measures derived from the matrices to discover variants in and around genes associated with autism (MACROD2), development (NEDD4), and mental retardation (UBE2A) significantly associated with connectivity. Connectome-wide, genome-wide screening offers substantial promise to discover genes affecting brain connectivity and risk for brain diseases.

4D deformation modeling of cortical disease progression in Alzheimer's dementia

This work describes the development of a model of cerebral atrophic changes associated with the progression of Alzheimer's disease (AD). Linear registration, region-of-interest analysis, and voxel-based morphometry methods have all been employed to elucidate the changes observed at discrete intervals during a disease process. In addition to describing the nature of the changes, modeling disease-related changes via deformations can also provide information on temporal characteristics. In order to continuously model changes associated with AD, deformation maps from 21 patients were averaged across a novel z-score disease progression dimension based on Mini Mental State Examination (MMSE) scores. The resulting deformation maps are presented via three metrics: local volume loss (atrophy), volume (CSF) increase, and translation (interpreted as representing collapse of cortical structures). Inspection of the maps revealed significant perturbations in the deformation fields corresponding to the entorhinal cortex (EC) and hippocampus, orbitofrontal and parietal cortex, and regions surrounding the sulci and ventricular spaces, with earlier changes predominantly lateralized to the left hemisphere. These changes are consistent with results from post-mortem studies of AD.

‘They rush you and push you too much … and you can't really get any good response off them’: A qualitative examination of family involvement in care of people with dementia in acute care

Aim: To explore the role and needs of the family carer across different acute care contexts and their level of involvement in the care of their relative with dementia in this setting. Method: A pragmatic, exploratory-descriptive qualitative approach. A convenience sample of 30 family carers across three sites completed semi-structured interviews. Results: Family carers wanted to be involved in the acute care of their family member with dementia. They acknowledged the importance of a central source of information, educated staff, guidelines on roles and processes, and positive communication, as well as respect from staff for the carer’s knowledge of the older person and their needs. They also highlighted the need for medical staff to discuss with them the family member’s treatment and care. Conclusion: There is a need for family-focused interventions to improve communication and involvement of family in the care of family members with dementia in the acute setting.

Impact of malnutrition on 12-month mortality following acute hip fracture

Background Studies investigating the relationship between malnutrition and post-discharge mortality following acute hip fracture yield conflicting results. This study aimed to determine whether malnutrition independently predicted 12-month post-fracture mortality after adjusting for clinically relevant covariates. Methods An ethics approved, prospective, consecutive audit was undertaken for all surgically treated hip fracture inpatients admitted to a dedicated orthogeriatric unit (November 2010–October 2011). The 12-month mortality data were obtained by a dual search of the mortality registry and Queensland Health database. Malnutrition was evaluated using the Subjective Global Assessment. Demographic (age, gender, admission residence) and clinical covariates included fracture type, time to surgery, anaesthesia type, type of surgery, post-surgery time to mobilize and post-operative complications (delirium, pulmonary and deep vein thrombosis, cardiac complications, infections). The Charlson Comorbidity Index was retrospectively applied. All diagnoses were confirmed by the treating orthogeriatrician. Results A total of 322 of 346 patients were available for audit. Increased age (P = 0.004), admission from residential care (P < 0.001), Charlson Comorbidity Index (P = 0.007), malnutrition (P < 0.001), time to mobilize >48 h (P < 0.001), delirium (P = 0.003), pulmonary embolism (P = 0.029) and cardiovascular complication (P = 0.04) were associated with 12-month mortality. Logistic regression analysis demonstrated that malnutrition (odds ratio (OR) 2.4 (95% confidence interval (CI) 1.3–4.7, P = 0.007)), in addition to admission from residential care (OR 2.6 (95% CI 1.3–5.3, P = 0.005)) and pulmonary embolism (OR 11.0 (95% CI 1.5–78.7, P = 0.017)), independently predicted 12-month mortality. Conclusions Findings substantiate malnutrition as an independent predictor of 12-month mortality in a representative sample of hip fracture inpatients. Effective strategies to identify and treat malnutrition in hip fracture should be prioritized.

Advancing initiatives in care of cognitively impaired patients in acute care settings

In November 2014, the Australian Commission on Safety and Quality in Health Care (ACSQHC) released “A better way to care: Safe and high quality care for patients with cognitive impairment (dementia and delirium) in hospital”. http://www.safetyandquality.gov.au/our-work/cognitive-impairment. The handbook is available as three separate resources for the three audiences: clinicians, service managers and consumers. These resources are designed to inform and guide improved care for older patients with cognitive impairment (CI) (dementia, delirium) in acute care settings. In particular, the service managers resource recommends that organisations comprehensively prepare themselves so that they are alert to delirium and the risk it poses for patients, that they can recognise and respond to patients with CI, and that they are able to provide safe and high quality care tailored to individual patient’s needs. Service managers and clinicians should carefully consider the information provided in the resources and judiciously explore how best to modify and adapt everyday care practices where appropriate. It is important that clinical teams respond to the available information as the ACSQHC identifies that dementia and/or delirium is associated with adverse outcomes, including functional decline, increased risk of falls, and increased morbidity and mortality...

Measuring the expressed emotion in Chinese family caregivers of persons with dementia: Validation of a Chinese version of the Family Attitude Scale

- Background Expressed emotion (EE) captures the affective quality of the relationship between family caregivers and their care recipients and is known to increase the risk of poor health outcomes for caregiving dyads. Little is known about expressed emotion in the context of caregiving for persons with dementia, especially in non-Western cultures. The Family Attitude Scale (FAS) is a psychometrically sound self-reporting measure for EE. Its use in the examination of caregiving for patients with dementia has not yet been explored. - Objectives This study was performed to examine the psychometric properties of the Chinese version of the FAS (FAS-C) in Chinese caregivers of relatives with dementia, and its validity in predicting severe depressive symptoms among the caregivers. - Methods The FAS was translated into Chinese using Brislin's model. Two expert panels evaluated the semantic equivalence and content validity of this Chinese version (FAS-C), respectively. A total of 123 Chinese primary caregivers of relatives with dementia were recruited from three elderly community care centers in Hong Kong. The FAS-C was administered with the Chinese versions of the 5-item Mental Health Inventory (MHI-5), the Zarit Burden Interview (ZBI) and the Revised Memory and Behavioral Problem Checklist (RMBPC). - Results The FAS-C had excellent semantic equivalence with the original version and a content validity index of 0.92. Exploratory factor analysis identified a three-factor structure for the FAS-C (hostile acts, criticism and distancing). Cronbach's alpha of the FAS-C was 0.92. Pearson's correlation indicated that there were significant associations between a higher score on the FAS-C and greater caregiver burden (r = 0.66, p < 0.001), poorer mental health of the caregivers (r = −0.65, p < 0.001) and a higher level of dementia-related symptoms (frequency of symptoms: r = 0.45, p < 0.001; symptom disturbance: r = 0.51, p < 0.001), which serves to suggest its construct validity. For detecting severe depressive symptoms of the family caregivers, the receiving operating characteristics (ROC) curve had an area under curve of 0.78 (95% confidence interval (CI) = 0.69–0.87, p < 0.0001). The optimal cut-off score was >47 with a sensitivity of 0.720 (95% CI = 0.506–0.879) and specificity of 0.742 (95% CI = 0.643–0.826). - Conclusions The FAS-C is a reliable and valid measure to assess the affective quality of the relationship between Chinese caregivers and their relatives with dementia. It also has acceptable predictability in identifying family caregivers with severe depressive symptoms.