Teake P. Ettema

A review of quality of life instruments used in dementia

Objective: To provide an overview of QOL measures applicable for research in dementia, the scale content, method of data collection, and their psychometric properties. Method: Literature research. Results: Six dementia-specific QOL measures were identified, eight generic measures were used in a demented population, and three dementia-specific measures related to QOL are described as well. Measures vary considerably in scale content, and method of data collection. Reliability indexes were always available, support of instrument validity was often reported, but reports of responsiveness to change were found only for two dementia-specific QOL measures. Conclusion: When the interest is primarily on people with dementia, a dementia-specific instrument is to be preferred. Further clarification of the concept of QOL and particularly its relation to disease severity is required.

Quality of life in dementia in perspective: An explorative study of variations in opinions among people with dementia and their professional caregivers, and in literature

Many different definitions of the concept of quality of life (QOL) are found in the literature. This raises the question as to which domains are viewed as really important by people with dementia and which are possibly based on views of others, such as (in)formal carers, or theoretical models. An explorative study was carried out among people with dementia living in the community and in nursing homes. Their opinions were compared to those of professional carers and to the current theoretical models and instruments for QOL in dementia. Data were gathered by means of interviews, focus groups and literature study. Most QOL domains mentioned as important by the persons with dementia were also acknowledged by the carers and in the literature. A few, however, were not mentioned by the carers (i.e. ‘sense of aesthetics in living environment’,‘financial situation’ and ‘being of use/giving meaning to life’), and not selected in the measuring instruments (‘security and privacy’, and ‘self-determination and freedom’). This indicates differences in perspectives on quality of life between persons with dementia, their carers and theoretical models. Further research is recommended on this point.

Effect of integrated family support versus day care only on behavior and mood of patients with dementia.

OBJECTIVE This study tests the hypothesis that integrated family support, in which patients and caregivers are both supported by one professional staff, is more effective in influencing behavior problems and mood of the dementia patient than nonintegrated support, such as psychogeriatric day care only. DESIGN A quasi-experimental pretest-posttest control group design with matched groups was applied. SETTING Psychogeriatric day-care centers of four community centers and three nursing homes. PARTICIPANTS Fifty-six dementia patients living at home and their caregivers. INTERVENTION The patients in the experimental group (n = 33) participated together with their caregivers in an integrated family support program, whereas the patients in the control group (n = 23) received psychogeriatric day care only. MEASUREMENTS Behavior problems and mood were observed using standardized behavior observation scales. RESULTS After 7 months the experimental support program, compared to the regular psychogeriatric day care, showed a large positive effect on the total number of behavior problems (effect size .75), and also specifically on the degree of inactivity (effect size .66) and nonsocial behavior (effect size .61). No effect on mood was found. CONCLUSIONS In influencing the total amount of behavior problems, as well as the degree of inactivity and nonsocial behavior, the integrated family support program proved to be more effective than psychogeriatric day care. Because behavior problems are an important determinant for admission of persons with dementia into a nursing home, integrated family support may contribute to the delay of institutionalization.

Evaluation of Qualidem: a dementia-specific quality of life instrument for persons with dementia in residential settings; scalability and reliability of subscales in four Dutch field surveys

To evaluate the scalability and reliability of Qualidem, a quality of life observation instrument rated by professional caregivers of persons with mild to very severe dementia living in residential settings.

Neuropsychiatric symptoms and quality of life in patients in the final phase of dementia

To assess neuropsychiatric symptoms and quality of life in a group of patients in the final phase of dementia.

Self report on quality of life in dementia with modified COOP/WONCA charts

This study investigates whether a modified version of the COOP/WONCA charts is suitable to assess quality of life (QOL) in persons with dementia in nursing homes. A group of 112 institutionalized persons with moderate to severe dementia were approached for an interview. Twenty-two were observed not to be communicative, leaving 90. Sixty-seven persons were able to answer four out of six questions adequately (interviewable). Inter-observer reliability (n=38) was excellent (weighted kappa 0.90 to 0.97). Test-retest reliability (n=34; one week interval) ranged from poor for Daily and Social Activities and for the QOL charts, to moderate for Feelings and Pain, and satisfactory for Physical Functioning (weighted kappa 0.23 to 0.67). Interviewability was associated with severity of the dementia and communication ability. Support for convergent validity was found in medium-sized Spearman correlations between the COOP/WONCA charts and related variables. Support for discriminant validity was found in the absence of association between the Ccharts and non-related variables. The modified COOP/WONCA charts can be used to assess QOL in 60% of people with dementia in nursing homes but further modification is needed. Severe cognitive impairment and communication disabilities proved limiting factors for the use of the instrument. Although the illustrations on the charts appeared not to be helpful, the written response options in addition to verbal presentation proved useful during the administration of the charts.

The implementation of integrated emotion-oriented care: Did it actually change the attitude, skills and time spent of trained caregivers?:

Background: Successful implementation is a vital precondition for investigating the outcome of care innovation. This study concerned the evaluation of the implementation of integrated emotion-oriented care (IEOC) in psychogeriatric nursing home wards. The main question was whether the trained caregivers actually applied the knowledge and techniques of IEOC during their daily work. Methods: The study was conducted within the framework of a randomized clinical trial into the effectiveness of IEOC in 16 wards. Preceding the experimental period, staff from 16 wards were educated and trained to work with a standardized care plan, resulting in a similar level of quality of care at the start of the trial. On the experimental wards IEOC was then implemented by training on the job in addition to training courses for personnel. To examine the implementation effectiveness, a self-report questionnaire, ‘Emotion-oriented Skills in the Interaction with Elderly People with Dementia’, was administered at baseline and after 7 months to a sample of caregivers from the experimental and the control wards. In addition, participant observation was conducted on four experimental and four control wards, and time spent by care personnel on different type of care tasks was registered. Results: The implementation of IEOC resulted in increased emotion-oriented skills and more knowledge of the residents among the caregivers. Providing IEOC was not more time consuming for the caregivers than providing usual care. Conclusion: This study shows that the implementation of IEOC was effective. It is recommended that in intervention studies the correct application of a new intervention or care approach is examined before jumping to conclusions about the effectiveness of the intervention or care approach itself.