Physical and functional implications of aquatic exercise for nursing home residents with dementia

Exercise has reported benefits for those with dementia. In the current study we investigated the feasibility of delivery and the physical and functional benefits of an innovative aquatic exercise program for adults with moderate to severe dementia living in a nursing home aged care facility. Ten adults (88.4 years, inter quartile range 12.3) participated twice weekly for 12 weeks. Anthropometric and grip strength data, and measures of physical function and balance were collected at baseline and post-intervention. Feasibility was assessed by attendance, participation, enjoyment and recruitment. Following exercise, participant's left hand grip strength had improved significantly (p = .017). Small to moderate effect sizes were observed for other measures. A number of delivery challenges emerged, but participant enjoyment, benefits and attendance suggest feasibility. Aquatic exercise shows promise as an intervention among those with dementia who live in a nursing home aged care facility. Greater program investigation is warranted.

The clinical utility of the Cornell Scale for Depression in Dementia as a routine assessment in nursing homes

Objective To examine the clinical utility of the Cornell Scale for Depression in Dementia (CSDD) in nursing homes. Setting 14 nursing homes in Sydney and Brisbane, Australia. Participants 92 residents with a mean age of 85 years. Measurements Consenting residents were assessed by care staff for depression using the CSDD as part of their routine assessment. Specialist clinicians conducted assessment of depression using the Semi-structured Clinical Diagnostic Interview for DSM-IV-TR Axis I Disorders for residents without dementia or the Provisional Diagnostic Criteria for Depression in Alzheimer Disease for residents with dementia to establish expert clinical diagnoses of depression. The diagnostic performance of the staff completed CSDD was analyzed against expert diagnosis using receiver operating characteristic (ROC) curves. Results The CSDD showed low diagnostic accuracy, with areas under the ROC curve being 0.69, 0.68 and 0.70 for the total sample, residents with dementia and residents without dementia, respectively. At the standard CSDD cutoff score, the sensitivity and specificity were 71% and 59% for the total sample, 69% and 57% for residents with dementia, and 75% and 61% for residents without dementia. The Youden index (for optimizing cut-points) suggested different depression cutoff scores for residents with and without dementia. Conclusion When administered by nursing home staff the clinical utility of the CSDD is highly questionable in identifying depression. The complexity of the scale, the time required for collecting relevant information, and staff skills and knowledge of assessing depression in older people must be considered when using the CSDD in nursing homes.

Development of an education program to improve care of patients with dementia in an acute care setting

As the population ages, the number of people with dementia in acute care environments is projected to increase rapidly. However, many acute care nurses have undertaken little or no dementia training, potentially leading to reduced quality of care for these patients. This article details the development and delivery of a tailored education program to improve the quality of care of people with dementia in a large, urban hospital in Australia. Designed specifically for the existing context, environment and knowledge levels, the program was developed from multiple inputs, including: expert opinion, literature on workplace and dementia care training, and feedback from participants. The program was delivered to acute care nurses and allied health staff within an outcome based, microteaching model. The broader applicability of the development and delivery techniques used in this program is also discussed.

The Thoughts Questionnaire (TQ) for family caregivers of people with dementia

Objectives: To develop a new measure of dysfunctional thoughts for family caregivers of people living with dementia. These thoughts can contribute to negative outcomes, but they may be modifiable. Method: A stepwise process was used to develop the Thoughts Questionnaire, commencing with item generation, concept mapping, and pilot testing in a sample of professional and nonprofessional caregivers of people with dementia (n = 18). Next, an independent sample of 35 family caregivers of people with dementia (30 female; M age = 64.30, standard deviation = 10.65) completed: (a) the Thoughts Questionnaire; (b) an existing measure of dysfunctional thoughts, the Dementia Thoughts Caregivers Questionnaire; and (c) separate validated measures of depressive symptoms, caregiver stress, and coping, respectively. Results: The level of agreement with dysfunctional thought statements from the Dementia Thoughts Caregivers Questionnaire and Thoughts Questionnaire was low. However, a small number of Thoughts Questionnaire statements were strongly endorsed by over 85% of the sample. Both dysfunctional thought measures had adequate reliability, but total scores were not significantly intercorrelated (r = .287, p = .095). Only the Thoughts Questionnaire was significantly, positively correlated with most caregiver stress measures. Thoughts Questionnaire items required a much lower reading level than the Dementia Thoughts Caregivers Questionnaire items. Discussion: This study provides preliminary data on a tool for assessing the negative role-related thoughts that family caregivers of people with dementia may experience. Given that these thoughts are implicated in depression but they may be modified, the capacity to identify dysfunctional thoughts may prove useful in caregiver support programs.

The use of creative activities in dementia in residential aged care facilities in Australia : a cross-sectional study

This thesis provides the first inquiry into the use of creative activities in dementia care in residential aged care facilities in Australia. The study used descriptive method design, incorporating a mix of quantitative and qualitative approaches to explore the incidence and the characteristics of these activities from the carers' perspective. Information about the use of creative activities and the appreciation of these activities by residents and carers is essential to the provision of dementia care and treatment to improve the quality of life of people with dementia.

The quality of life and caregiving burden among caregivers of people with dementia in Hanoi, Bac Ninh and Hai Phong, Vietnam

This three phase study aimed to describe dementia carer's quality of life (QoL) and perceived burden, and explore the associations between family carer characteristics, burden and perceived QoL in Vietnam. Dementia carers in the capital, Hanoi, in Phase 1 (N= 153) and from Hanoi, Hai Phong and Bac Ninh in Phase 2 (N=347) completed questionnaires. Survey results showed dementia carers reported low QoL, predicted by high perceived burden. Other carer characteristics including age, gender, family income and perceived experience were significantly associated with QoL. Filial piety contributed to only a single domain of QoL. Phase 3 employed qualitative methods to explore the specific issues faced by daughter carers. Findings suggested that filial gratitude and positive aspects of the role may influence the caring experience of daughter carers. Further investigation of the specific support needs of general dementia carers, and daughter carers in particular, in Vietnam is warranted.

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.

Oral liquid nutritional supplements for people with dementia in residential aged care facilities

AIM: This systematic review investigated the prescription, administration and effectiveness of oral liquid nutritional supplements (OLNS) for people with dementia in residential aged care facilities (RACF). METHODS: A comprehensive search of relevant databases, hand searching and cross-referencing found 15 relevant articles from a total of 2910 possible results. Articles which met the inclusion criteria were critically appraised by two independent reviewers using the relevant Joanna Briggs Institute (JBI) appraisal checklist. Data were extracted using the relevant JBI extraction instruments. No data synthesis was possible due to clinical and methodological heterogeneity. RESULTS: Included studies examined a range of strategies, issues and results related to OLNS for persons with dementia in RACFs; however there appear to be significant gaps in the current body of research, particularly in relation to examinations of effectiveness. CONCLUSIONS: This review was unable to produce a definitive finding regarding effectiveness. OLNS may improve the nutritional state of residents with dementia and help prevent weight loss, and there is some suggestion that it may slow the rate of cognitive decline. However, in order for OLNS to be effective, nursing and care staff need to ensure that sufficient attention is paid to the issues of prescription and administration.

Multiple perspectives on quality of life for residents with dementia in long term care facilities: Protocol for a comprehensive Australian study

Background Dementia is a chronic illness without cure or effective treatment, which results in declining mental and physical function and assistance from others to manage activities of daily living. Many people with dementia live in long term care facilities, yet research into their quality of life (QoL) was rare until the last decade. Previous studies failed to incorporate important variables related to the facility and care provision or to look closely at the daily lives of residents. This paper presents a protocol for a comprehensive, multi-perspective assessment of QoL of residents with dementia living in long term care in Australia. A secondary aim is investigating the effectiveness of self-report instruments for measuring QoL. Methods The study utilizes a descriptive, mixed methods design to examine how facility, care staff, and resident factors impact QoL. Over 500 residents with dementia from a stratified, random sample of 53 facilities are being recruited. A sub-sample of 12 residents is also taking part in qualitative interviews and observations. Conclusions This national study will provide a broad understanding of factors underlying QoL for residents with dementia in long term care. The present study uses a similar methodology to the US-based Collaborative Studies of Long Term Care (CS-LTC) Dementia Care Study, applying it to the Australian setting.

Influencers on quality of life as reported by people living with dementia in long-term care: A descriptive exploratory approach

Background Over half of the residents in long-term care have a diagnosis of dementia. Maintaining quality of life is important, as there is no cure for dementia. Quality of life may be used as a benchmark for caregiving, and can help to enhance respect for the person with dementia and to improve care provision. The purpose of this study was to describe quality of life as reported by people living with dementia in long-term care in terms of the influencers of, as well as the strategies needed, to improve quality of life. Methods A descriptive exploratory approach. A subsample of twelve residents across two Australian states from a national quantitative study on quality of life was interviewed. Data were analysed thematically from a realist perspective. The approach to the thematic analysis was inductive and data-driven. Results Three themes emerged in relation to influencers and strategies related to quality of life: (a) maintaining independence; (b) having something to do, and; (c) the importance of social interaction. Conclusions The findings highlight the importance of understanding individual resident needs and consideration of the complexity of living in large group living situations, in particular in regard to resident decision-making.

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.

Increasing enjoyable activities to treat depression in nursing home residents with dementia: A pilot study

This pilot study aimed to assess the feasibility and acceptability of a Behavioral Activities intervention (BE-ACTIV) in Australian nursing homes. BE-ACTIV was developed by researchers at the University of Louisville, USA, to improve mood and quality of life (QOL) in nursing home residents with mild to moderate dementia. An 8-week trial was conducted and 10 residents with mild to moderate dementia received the BE-ACTIV intervention while 8 residents received a Walking and Talking intervention. Measures of depression (GDS–12R), and QOL (QOL-AD-NH) were administered prior to and following the interventions. Qualitative feedback indicated residents benefited from BE-ACTIV, evident by improved mood, although no statistically significant treatment effect was found. Moreover, the intervention was found to be feasible and acceptable to Australian nursing home staff and our findings highlight the importance of individualizing activities for people with dementia, of which 1:1 staff attention was a key component.

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.