Jenny Murfield

Factors influencing quality of life for people with dementia: A qualitative perspective

Objectives: An exploration and understanding of quality of life (QOL) can help to enhance understanding and respect for people with dementia and assist in improving care and treatment of this population. This study sought to understand the factors that influence QOL for people living with dementia in long-term care (LTC), including an understanding of how they perceived they were valued. Methods: In-depth interviews were conducted with 32 older people with dementia from one service provider and across four large care settings, in two Australian states. Results: While these residents were either satisfied or dissatisfied with elements of their life, the factors influencing a positive QOL were related to their relationship with family and other people, and ‘things’ such as needing some control over their life and, more importantly, needing to contribute to their community. Participants reported feeling of little use and therefore of limited value to society. Conclusion: This study proposes a need to understand how relationships might be maintained and strengthened following a move into LTC and highlights the importance of control and its influence on feeling valued.

Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts

AIMS This article reports on a study of quality of life of older people with dementia, as assessed by the person with dementia, family carer and care staff. BACKGROUND People with dementia can give meaningful assessments of their quality of life, but these often differ from proxy ratings. In understanding this discrepancy, the influence of age, extent of cognitive impairment and activity limitation has been investigated. A lack of conclusive associations between quality of life ratings and these variables indicates a need for further research. METHODS Fifty-eight triads comprising the person with dementia, family carer and member of care staff from four long-term care facilities were surveyed on the quality of life-Alzheimers Disease questionnaire between August and December 2007. RESULTS There was an important difference in the quality of life-Alzheimers disease questionnaire total mean scores between groups, with the person with dementia providing the highest ratings. Level of impairment in activities of daily living had an important effect on quality of life ratings, with proxies, particularly care staff, providing lower ratings when there was greater activity limitation. This was not replicated for assessments made by the person with dementia. Age or level of cognitive impairment did not influence any ratings. CONCLUSION People with dementia can give assessments of their quality of life. However, discrepancy in ratings, with greater activity limitation affecting proxy ratings but not those made by the person with dementia, indicates the importance of including both self-report and proxy measures in research and care planning.

Care staff attitudes and experiences of working with older people with dementia.

Aim:  To determine care staff attitudes to dementia, assess levels of job satisfaction and explore how these attitudes and experience may relate to each other.

Infusion phlebitis assessment measures: a systematic review

Rationale, aims and objectives Phlebitis is a common and painful complication of peripheral intravenous cannulation. The aim of this review was to identify the measures used in infusion phlebitis assessment and evaluate evidence regarding their reliability, validity, responsiveness and feasibility. Method We conducted a systematic literature review of the Cochrane library, Ovid MEDLINE and EBSCO CINAHL until September 2013. All English-language studies (randomized controlled trials, prospective cohort and cross-sectional) that used an infusion phlebitis scale were retrieved and analysed to determine which symptoms were included in each scale and how these were measured. We evaluated studies that reported testing the psychometric properties of phlebitis assessment scales using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines. Results Infusion phlebitis was the primary outcome measure in 233 studies. Fifty-three (23%) of these provided no actual definition of phlebitis. Of the 180 studies that reported measuring phlebitis incidence and/or severity, 101 (56%) used a scale and 79 (44%) used a definition alone. We identified 71 different phlebitis assessment scales. Three scales had undergone some psychometric analyses, but no scale had been rigorously tested. Conclusion Many phlebitis scales exist, but none has been thoroughly validated for use in clinical practice. A lack of consensus on phlebitis measures has likely contributed to disparities in reported phlebitis incidence, precluding meaningful comparison of phlebitis rates.

Peripheral intravenous catheter duration and failure in paediatric acute care: A prospective cohort study.

Children admitted to hospital commonly require peripheral intravenous catheters (PIVCs) for treatment. This study sought to address a gap in the literature about current practice in the securement and dressing of PIVCs in paediatric acute care, and to ascertain the duration and failure of these devices.

Health-related quality of life in older people with severe dementia: challenges for measurement and management

The current dementia epidemic, coupled with the absence of a cure for the disease, means that an increasing number of people with dementia are likely to experience the severe stage. Given that this final stage adversely impacts not only the person living with the disease (i.e., cognitive impairment and limited communication), but also their family members and caregivers (i.e., burden and stress), there is a pertinent need to understand the needs and desires of the person to help shape optimal care management practices. In this article, literature produced in the last 5 years, regarding measurement and management challenges encountered when researching health-related quality of life in older people with severe dementia, is reviewed. The paper aims to provide important, up-to-date insight into the type and amount of research undertaken with this population, including the measurement tools currently used and the challenges faced, and pose recommendations for future research.

Assessing quality of life of older people with dementia in long-term care: a comparison of two self-report measures.

AIMS AND OBJECTIVES This study sought to compare two well-known and well-used self-report quality of life questionnaires in terms of completion rates, reliability and assessment of quality of life. BACKGROUND People with dementia have a meaningful experience of quality of life and several disease-specific instruments have been designed to capture self-report assessments. DESIGN A quantitative survey design, with a convenience sample of older people with dementia from four long-term care facilities. METHOD Sixty-one participants were recruited for survey on the Dementia Quality of Life questionnaire and the Quality of Life in Alzheimers Disease questionnaire. RESULTS The Quality of Life in Alzheimers Disease questionnaire had a higher rate of completion (98·4%) than the Dementia Quality of Life questionnaire (68·9%). Those unable to complete the latter measure had significantly greater cognitive impairment (F(1,59) = 30·35, p < 0·001) than those completing the measure. Internal reliability was good for the Quality of Life in Alzheimers Disease questionnaire (0·86), but there were varying levels found for the five Dementia Quality of Life questionnaire subscales (0·79-0·48). The Quality of Life in Alzheimers Disease questionnaire was significantly correlated with all the Dementia Quality of Life questionnaire subscales and overall item. CONCLUSIONS Although it is recognised that there is no superior instrument in assessing quality of life, this study found both the Quality of Life in Alzheimers Disease questionnaire and Dementia Quality of Life questionnaire to be useful self-report instruments. RELEVANCE TO CLINICAL PRACTICE Assessment of quality of life should include the perspective of the person with dementia. The Quality of Life in Alzheimers Disease questionnaire and Dementia Quality of Life questionnaire appear to measure similar aspects of quality of life. Where assessments are sought from participants with more advanced cognitive and functional impairment, it may be favourable to employ the Quality of Life in Alzheimers Disease questionnaire.

The effect of foot massage on long-term care staff working with older people with dementia: a pilot, parallel group, randomized controlled trial

BackgroundCaring for a person with dementia can be physically and emotionally demanding, with many long-term care facility staff experiencing increased levels of stress and burnout. Massage has been shown to be one way in which nurses’ stress can be reduced. However, no research has been conducted to explore its effectiveness for care staff working with older people with dementia in long-term care facilities.MethodsThis was a pilot, parallel group, randomized controlled trial aimed at exploring feasibility for a larger randomized controlled trial. Nineteen staff, providing direct care to residents with dementia and regularly working ≥ two day-shifts a week, from one long-term care facility in Queensland (Australia), were randomized into either a foot massage intervention (n=9) or a silent resting control (n=10). Each respective session lasted for 10-min, and participants could receive up to three sessions a week, during their allocated shift, over four-weeks. At pre- and post-intervention, participants were assessed on self-report outcome measures that rated mood state and experiences of working with people with dementia. Immediately before and after each intervention/control session, participants had their blood pressure and anxiety measured. An Intention To Treat framework was applied to the analyses. Individual qualitative interviews were also undertaken to explore participants’ perceptions of the intervention.ResultsThe results indicate the feasibility of undertaking such a study in terms of: recruitment; the intervention; timing of intervention; and completion rates. A change in the intervention indicated the importance of a quiet, restful environment when undertaking a relaxation intervention. For the psychological measures, although there were trends indicating improvement in mood there was no significant difference between groups when comparing their pre- and post- scores. There were significant differences between groups for diastolic blood pressure (p= 0.04, partial η2=0.22) and anxiety (p= 0.02, partial η2=0.31), with the foot massage group experiencing greatest decreases immediately after the session. The qualitative interviews suggest the foot massage was well tolerated and although taking staff away from their work resulted in some participants feeling guilty about taking time out, a 10-min foot massage was feasible during a working shift.ConclusionsThis pilot trial provides data to support the feasibility of the study in terms of recruitment and consent, the intervention and completion rates. Although the outcome data should be treated with caution, the pilot demonstrated the foot massage intervention showed trends in improved mood, reduced anxiety and lower blood pressure in long-term care staff working with older people with dementia. A larger study is needed to build on these promising, but preliminary, findings.Trial registrationACTRN: ACTRN12612000659808.

Care staff perceptions of a social robot called Paro and a look-alike Plush Toy: a descriptive qualitative approach

ABSTRACT Objectives: Social robots such as Paro, a therapeutic companion robot, have recently been introduced into dementia care as a means to reduce behavioural and psychological symptoms of dementia. The purpose of this study was to explore care staff perceptions of Paro and a look-alike non-robotic animal, including benefits and limitations in dementia care. Methods: The study assumed a descriptive qualitative approach, nested within a large cluster-randomised controlled trial. We interviewed a subsample of 20 facility care staff, from nine long-term care facilities in Southeast Queensland, Australia. Thematic analysis of the data, which was inductive and data-driven, was undertaken with the assistance of the qualitative software, ATLAS.ti®. Results: The findings refer to four categories: increasing excitement for Paro and decreasing enthusiasm for Plush Toy; value and function of Paro; opportunities for engagement; and alternatives vs. robustness. Conclusion: Staff caring for people with dementia preferred Paro compared to a look-alike Plush Toy. Staff identified that Paro had the potential to improve quality of life for people with dementia, whereas the Plush Toy had limitations when compared to Paro. However, participants expressed concern that the cost of Paro could reduce opportunities for use within aged care.

Dementia and its influence on quality of life and what it means to be valued: Family members perceptions

This pragmatic, exploratory qualitative study, as part of a larger funded research project, sought to explore families’ perspectives on what it means to value a person with dementia and how this value might influence the quality of life of people with dementia. In-depth interviews were conducted with 20 family members who used one long-term care service provider in Australia. Families described the factors influencing a positive quality of life for the person with dementia as being related to the environment and, in particular, to the resident’s room, supportive staff and individualised care that valued the person’s life experience. Family also reported a negative impact on quality of life when staff and the care facility neglected to provide an individualised approach. This study highlights the importance of demonstrating the value of the person with dementia, the family role and partnerships of care.