Susan Griffiths

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.

Daily-living management of urinary incontinence: A synthesis of the literature

This article is an integrative review of the research literature on daily-living management of urinary incontinence (UI) by people who live in the community. While most self-management literature investigates how people self-manage clinical treatments and therapies, this article focuses on how UI symptoms are managed in everyday living to maintain social functioning. Control of UI in everyday living is achieved using a range of strategies, which were identified and conceptualized as containing, restricting, concealing, and modifying. Understanding the strategies people use to manage UI in daily life will enable WOC and continence nurses to provide more appropriate and personally tailored advice.

Women's management of urinary incontinence in daily living.

PURPOSE: We investigated strategies used by older and working-aged women to manage urinary incontinence (UI) in their daily lives. DESIGN: Cross-sectional, descriptive study. SUBJECTS AND SETTING: The sample comprised 103 older (>65 years; mean = 74.6 years) and 104 working-aged (18-65 years; mean = 50.3 years) community-dwelling Australian women with self-reported UI. They had experienced UI for an average of 5 years and a majority rated their UI severity as moderate to severe. INSTRUMENT: Based on a comprehensive literature review, a 93-item author-developed questionnaire was developed and pilot tested to identify the type and frequency of strategies used by participants to manage UI. Items were developed that queried demographic and lower urinary symptom characteristics (type, severity, duration). METHODS: Participants were recruited via public and privately funded continence clinics and an advertisement in a local newspaper, with a 66% retention rate following recruitment. Questionnaires were posted to participants with a reply paid envelope for return. RESULTS: The women used a range of strategies to manage UI in their daily lives. A large proportion of women from both groups chose to (1) go to the toilet immediately after urge (older 94%; working-aged 92%); (2) integrate urine loss management a normal part of everyday life (older 81%; working-aged 78%); (3) stopping activities that make them leak (older 85%; working-aged 83%); and (4) using pads and aids for urinary containment (older 87%; working-aged 73%). Older women were more likely to use most of the strategies identified in the questionnaire. These strategies included the following: stop drinking in the evening (older 64%; working-aged 43%; P = .003); organize their bedroom close to the toilet (older 61%; working-aged 36%; P = .001); limit travel (older 45%; working-aged 18%; P = < .001); limit socializing (older 30%; working-aged 11%; P = .001); and limit new relationships (older 25%; working-aged 11%; P = .01). Respondents engaged in a variety of hygiene measures such as washing (older 86%; working-aged 60%; P ⩽ .001), changing pads frequently (older 76%; working-aged 58%; P = .008), and using deodorisers (older 68%; working-aged 50%; P ⩽ .008). Working-aged women were more likely to modify (older 17%; working-aged 70%; P < .001) or avoid (older 8%; working-aged 32%; P = .001) sexual activity. CONCLUSION: Both older and younger women aimed to normalize UI in their daily lives, using strategies designed to keep the bladder empty, maintain secrecy, and preserve social continence. Knowledge of these strategies and the difference between older and working-aged women will enable health care professionals to initiate more targeted support and advice for women with UI.

Pelvic static magnetic stimulation to control urinary incontinence in older women: A randomized controlled trial

Objectives To determine the efficacy of non-invasive static magnetic stimulation (SMS) of the pelvic floor compared to placebo in the treatment of women aged 60 years and over with urinary incontinence for 6 months or more. Subjects and Methods A single-blinded randomized, placebo-controlled, parallel-group trial. Subjects were excluded if they had an implanted electronic device, had experienced a symptomatic urinary tract infection, or had commenced pharmacotherapy for the same in the previous 4 weeks, or if they were booked for pelvic floor or gynecological surgery within the next 3 months. Once written consent was obtained, subjects were randomly assigned to the active SMS group (n=50) or the placebo group (n=51). Treatment was an undergarment incorporating 15 static magnets of 800–1200 Gauss anterior, posterior, and inferior to the pelvis for at least 12 hours a day for 3 months. Placebo was the same protocol with inert metal disks replacing the magnets. Primary outcome measure was cessation of incontinence as measured by a 24-hour pad test. Secondary outcomes were frequency and severity of symptoms as measured by the Bristol Female Lower Urinary Tract Symptoms questionnaire (BFLUTS-SF), the Incontinence Severity Index, a Bothersomeness Visual Analog scale, and a 24-hour bladder diary. Data were collected at baseline and 12 weeks later. Results There were no statistically significant differences between groups in any of the outcome measures from baseline to 12 weeks. Initial evidence of subjective improvement in the treatment group compared to the placebo group was not sustained with sensitivity analysis. Conclusion This study found no evidence that static magnets cure or decrease the symptoms of urinary incontinence. Additional work into the basic physics of the product and garment design is recommended prior to further clinical trials research.

Outcomes of a Home-Based Pulmonary Maintenance Program for Individuals with COPD: A Pilot Study

Abstract This preliminary pilot study explores sustained benefits of pulmonary rehabilitation (PR) in people with chronic obstructive pulmonary disease (COPD) attending a 12-month home-based pulmonary maintenance program. The incidence of COPD is high and ageing populations will see this continue and possibly increase. PR programs are effective, however, benefits may dissipate if the program is not continued. The maintenance program involved: strength retraining exercises; collaborative goal setting; regular telephone calls; and home visits. Around half of the 29 participants remained in contact with the program for 12 months and 21 completed final or 6-month assessment. Most participants maintained: respiratory functioning; quality of life; and self-efficacy, with some showing improvements. Outcomes provide knowledge for improving patient care through a home-based strategy to maintain benefits of PR programs. Results suggest that in light of likely decline in benefits 6–12 months after PR, the maintenance program contributed to sustained benefits for COPD individuals and also provide information to aid investigators planning the design of similar larger research with this population.

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.

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.

Evaluating the capabilities model of dementia care: a non-randomized controlled trial exploring resident quality of life and care staff attitudes and experiences.

BACKGROUND This 12 month, Australian study sought to compare the Capabilities Model of Dementia Care (CMDC) with usual long-term care (LTC), in terms of (1) the effectiveness of the CMDC in assisting care staff to improve Quality Of Life (QOL) for older people with dementia; and (2) whether implementation of the CMDC improved staff attitudes towards, and experiences of working and caring for the person with dementia. METHODS A single blind, non-randomized controlled trial design, involving CMDC intervention group (three facilities) and a comparison usual LTC practice control group (one facility), was conducted from August 2010 to September 2011. Eighty-one staff members and 48 family members of a person with dementia were recruited from these four LTC facilities. At baseline, 6 and 12 months, staff completed a modified Staff Experiences of Working with Demented Residents questionnaire (SEWDR), and families completed the Quality of Life - Alzheimers Disease questionnaire (QOL-AD). RESULTS LTC staff in the usual care group reported significantly lower SEWDR scores (i.e. less work satisfaction) than those in the CMDC intervention group at 12 months (p = 0.005). Similarly, family members in the comparison group reported significantly lower levels of perceived QOL for their relative with dementia (QOL-AD scores) than their counterparts in the CMDC intervention group at 12 months (p = 0.012). CONCLUSIONS Although the study has a number of limitations the CMDC appears to be an effective model of dementia care - more so than usual LTC practice. The CMDC requires further evaluation with participants from a diverse range of LTC facilities and stages of cognitive impairment.