Janne Røsvik

The Effect of Person-Centred Dementia Care to Prevent Agitation and Other Neuropsychiatric Symptoms and Enhance Quality of Life in Nursing Home Patients: A 10-Month Randomized Controlled Trial

Aims: We examined whether Dementia Care Mapping (DCM) or the VIPS practice model (VPM) is more effective than education of the nursing home staff about dementia (control group) in reducing agitation and other neuropsychiatric symptoms as well as in enhancing the quality of life among nursing home patients. Methods: A 10-month three-armed cluster-randomized controlled trial compared DCM and VPM with control. Of 624 nursing home patients with dementia, 446 completed follow-up assessments. The primary outcome was the change on the Brief Agitation Rating Scale (BARS). Secondary outcomes were changes on the 10-item version of the Neuropsychiatric Inventory Questionnaire (NPI-Q), the Cornell Scale for Depression in Dementia (CSDD) and the Quality of Life in Late-Stage Dementia (QUALID) scale. Results: Changes in the BARS score did not differ significantly between the DCM and the control group or between the VPM and the control group after 10 months. Positive differences were found for changes in the secondary outcomes: the NPI-Q sum score as well as the subscales NPI-Q agitation and NPI-Q psychosis were in favour of both interventions versus control, the QUALID score was in favour of DCM versus control and the CSDD score was in favour of VPM versus control. Conclusions: This study failed to find a significant effect of both interventions on the primary outcome. Positive effects on the secondary outcomes indicate that the methods merit further investigation.

Variables associated to quality of life among nursing home patients with dementia

Objective: To study which variables are associated with quality of life (QOL) in persons with dementia (PWD) living in nursing homes (NHs). Methods: A cross-sectional study included 661 PWD living in NH. To measure QOL the quality of life in late-stage dementia scale (QUALID) was applied. Other scales were: the clinical dementia rating scale (CDR), physical self-maintenance scale (PSMS), and neuropsychiatric inventory questionnaire (NPI-Q). Results: The patients’ mean age was: 86.9 (SD 7.7), 472 (71.4%) were women. Of all, 22.5% had CDR 1, 33.6% had CDR 2, and 43.9% had CDR 3. The mean PSMS score was 18.2 (SD 5.0), 43.1% lived in special care units, 56.9% in regular units. In a linear regression analysis NPI-affective score (β = 0.360, p-value < 0.001), NPI-agitation score (β = 0.268, p-value < 0.001), PSMS total score (β = 0.181, p-value < 0.001), NPI-apathy (β = 0.144, p-value < 0.001), NPI psychosis (β = 0.085, p-value 0.009), CDR sum of boxes score (β = 0.081, p-value 0.026) were significantly associated with QUALID total score (explained variance 44.5%). Conclusion: Neuropsychiatric symptoms, apathy, severity of dementia, and impairment in activities in daily living are associated with reduced QOL in NH patients with dementia.

Variables Associated with Change in Quality of Life among Persons with Dementia in Nursing Homes: A 10 Months Follow-Up Study

Aim To investigate variables associated with change in quality of life (QOL), measured by QUALID scale and three subscales; tension, sadness and wellbeing, among dementia patients in nursing homes. Method A 10 months follow-up study including 198 (female 156, 79%) nursing home patients, mean age 87 (s.d 7.7) years. Scales applied; quality of life in late stage dementia (QUALID) scale and three subscales (wellbeing, sadness and tension), neuropsychiatric inventory questionnaire 10 items (NPI-10-Q), clinical dementia rating (CDR) scale, physical self-maintenance (PSMS) scale and a scale of general medical health. Use of psychotropic medication, gender and age was collected from the patients records. Results Mean baseline QUALID score: 20.6 (s.d.7.0), follow-up score: 22.9 (s.d.7.4), mean change 2.8 (s.d.7.4). QOL improved in 30.8%, were unchanged in 14.7%, deteriorated in 54.6% of patients. A regression analysis revealed that change in QUALID score was significantly associated with: QUALID baseline score (beta -.381, p-value.000), change in NPI score (beta.421, p-value.000), explained variance 38.1%. Change in score on wellbeing subscale associated with: change in PSMS score (beta.185, p-value.019), wellbeing baseline score (beta -.370, p-value.000), change in NPI score (beta.186, p-value.017), explained variance 25.3%. Change in score on tension subscale associated with: change in CDR sum-of-boxes (beta.214, p-value.003), change in NPI score (beta.270, p-value.000), tension baseline score (beta -.423, p-value.000), explained variance 34.6%. Change in score on sadness subscale associated with: change in NPI score (beta.404, p-value.000), sadness baseline score (beta -.438, p-value.000), explained variance 38.8%. Conclusion The results imply that a lower baseline score (better QOL) results in a larger change in QOL (towards worse QOL). Change in QOL is mostly associated with change in neuropsychiatric symptoms. In almost 50% of patients QOL did not deteriorate.

What is person-centred care in dementia? Clinical reviews into practice: the development of the VIPS practice model

The VIPS framework is a four-part definition of person-centred care for people with dementia (PCC), which arose out of an earlier review article for this journal. The definition has assisted in the practical application of person-centred care. It has been operationalized into the VIPS practice model (VPM), which has been subject to a recent randomized controlled trial within Norwegian nursing homes. The VPM provided a vehicle for the VIPS framework to be utilized during reflective practice meetings focusing on understanding care situations from the perspective of residents with moderate to severe dementia. VPM incorporated an education and coaching approach, clearly defined staff roles, and resident-focused outcomes in a cycle to support improvements in quality of care. The use of VPM in practice is discussed. VPM was built utilizing the literature from organizational change. The role of literature reviews in bringing about change in practice is highlighted.

Factors to Make the VIPS Practice Model More Effective in the Treatment of Neuropsychiatric Symptoms in Nursing Home Residents with Dementia

Background/Aims: A recent cluster-randomized controlled study showed that the VIPS practice model (VPM) for person-centred care had a significant effect on neuropsychiatric symptoms in nursing home residents with dementia. The randomized controlled trial (RCT) indicated that a substantial proportion of the total variance of the effects was related to conditions in the particular unit (ward). We have explored which factors explain the variance of the effect of the VPM. Methods: The VPM subset of data from the RCT was explored using multilevel linear regression. The dependent variables were the change in scores on the Neuropsychiatric Inventory Questionnaire (NPI-Q) and the Cornell Scale for Depression in Dementia (CSDD). Results: The unit in which the resident was living explained 22% of the VPMs total variance of the effect on the NPI-Q and 13% of that on the CSDD. The intraclass correlation coefficient at the unit level was explained mainly by unit size on both scales and was considerably higher than at the institutional level. Conclusion: The unit is the most influential level when implementing person-centred dementia care by use of the VPM. The unit size explains most of the variance of the effect of the VPM, and the effects were best in the small units.

Living with dementia in a nursing home, as described by persons with dementia: a phenomenological hermeneutic study

BackgroundPersons with dementia have described life in nursing home as difficult and lonely. Persons with dementia often reside in nursing homes for several years; therefore, knowledge is needed about how quality of life is affected in the nursing-home setting in order to be able to provide the best possible care. The aim of this study was to investigate the personal experience of living in a nursing home over time from the perspective of the person with dementia and to learn what makes life better or worse in the nursing home.MethodsA phenomenological hermeneutic research design was applied. Unstructured, face-to-face interviews and field observations were conducted twice, three months apart.ResultsTwelve persons residing in three different nursing homes were included. The analysis revealed four themes: “Being in the nursing home is okay, but you must take things as they are”; “Everything is gone”; “Things that make it better and things that make it worse”; and “Persons – for better or worse? Staff, family, and co-residents”.ConclusionsPersons with dementia are able to communicate their feelings and thoughts about their lives in the nursing home and can name several factors that have impacts on their quality of life. They differentiate between members of the staff, and they prefer their primary nurse. They are content with life in general, but everyday life is boring, and their sense of contentment is based on acceptance of certain facts of reality and their ability to adjust their expectations.

Barriers and facilitators to the access to and use of formal dementia care: findings of a focus group study with people with dementia, informal carers and health and social care professionals in eight European countries

BackgroundPeople with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals.MethodFocus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports.ResultsOverall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives.ConclusionFurther investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.