Trajectories of relationship quality in dementia: a longitudinal study in eight European countries.

OBJECTIVES: Relationship quality (RQ) between a person with dementia and a family carer may influence their health and quality of life. However, evidence regarding its course and influencing factors is limited. We aimed to explore RQ trajectories in dementia, and identify predictors of change. METHODS: We analysed longitudinal data from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. The Positive Affect Index, rated separately by both people with dementia and their carers, assessed RQ. Other measures included the Neuropsychiatric Inventory Questionnaire (regarding persons with dementia), and the Relative Stress Scale, Sense of Coherence Scale and Lubben Social Network Scale (for carers). Trajectories and influencing factors were explored applying a latent growth model (LGM). RESULTS: RQ in the group of carers declined over 1 year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers' RQ, whereas social support was associated with more positive RQ trajectories. CONCLUSION: This study provides a valuable insight into the course of RQ. LGM proved useful to explore the factors that influence RQ trajectories and variability within- and between-persons. Our findings emphasise the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ.

The COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia - a qualitative study.

BACKGROUND: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. METHODS: The study had a qualitative descriptive design using individual telephone interviews for data collection. A total sample of 17 spouses of people with dementia were included, 14 women and three men ages 52 to 82 years. A qualitative content analysis following six steps inspired by Graneheim and Lundman was used to identify the categories presented. RESULTS: The participants emphasized four main perspectives: 1) Radical changes in available services, 2) Restrictions changed everyday life, 3) Impacts on health and well-being, and 4) Actions that made life easier. The participants also described how positive activities and easily accessible services helped them in this situation. CONCLUSIONS: The governmental restrictions of the COVID-19 pandemic resulted in radical changes in available services with severe consequences for the lives and well-being of home-dwelling people with dementia and their spouses. Examples of coping strategies and possible psychosocial interventions compatible with virus precautions were identified. The potential of such interventions should be further explored to meet the needs of vulnerable groups in situations like a pandemic.

Development of best practice recommendations to enhance access to and use of formal community care services for people with dementia in Europe: a Delphi process conducted by the Actifcare project.

OBJECTIVES: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. METHOD: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. RESULTS: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. CONCLUSION: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers.

Self-management and HeAlth Promotion in Early-stage dementia with e-learning for carers (SHAPE): study protocol for a multi-centre randomised controlled trial.

BACKGROUND: With an increasing number of people with dementia worldwide and limited advancement in medical treatments, the call for new and cost-effective approaches is crucial. The utility of self-management has been proven in certain chronic conditions. However, very little work has been undertaken regarding self-management in people with dementia. METHODS: The SHAPE trial will include 372 people with mild to moderate dementia to evaluate the effectiveness and cost-effectiveness of an educational programme combining approaches of self-management, health promotion, and e-learning for care partners. The study is a multi-site, single-randomised, controlled, single-blinded trial with parallel arms. The intervention arm is compared with treatment as usual. The intervention comprises a 10-week course delivered as group sessions for the participants with dementia. The sessions are designed to develop self-management skills and to provide information on the nature of the condition and the development of healthy behaviours in a supportive learning environment. An e-learning course will be provided for care partners which covers similar and complementary material to that discussed in the group sessions for the participant with dementia. DISCUSSION: This trial will explore the effect of the SHAPE group intervention on people with mild to moderate dementia in terms of self-efficacy and improvement in key health and mental health outcomes and cost-effectiveness, along with carer stress and knowledge of dementia. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04286139, registered prospectively February 26, 2020, https://clinicaltrials.gov/ct2/show/NCT04286139.

What are the needs of people with dementia in acute hospital settings, and what interventions are made to meet these needs? A systematic integrative review of the literature.

BACKGROUND: Research aiming to improve the hospital experience for patients with dementia and their informal carers is strongly recommended. The present review aimed to describe the research on interventions to meet the needs of people with dementia in acute hospital settings regarding physical environment, organization of care, and staff knowledge of dementia and competence in person-centred care. An integrative review design was applied. We searched for studies in PubMed, Ovid Medline, Cinahl, Embase, Swemed+, and Cochrane databases using the Mixed Methods Appraisal Tool (MMAT) for quality evaluation. Twenty-seven articles were included, describing the perspectives of people with dementia, informal carers, and professional carers. The MMAT score ranged from two to four. Twelve studies described needs and experiences, mostly using a qualitative design. Common themes and results were synthesized. The studies identified a need to enhance staff competence regarding dementia and person-centred care. Fifteen studies described interventions: two were qualitative; three used mixed method, and 10 were quantitative, of which two were randomized controlled trials and eight were observational studies. Five types of interventions were identified. Three types could positively impact staff knowledge about dementia and person-centred care. One type was experienced as positive regarding organisation of care for patients with dementia. None of the intervention studies found evidence for effects on the identified needs regarding physical environment. CONCLUSION: The included studies suggest that staff need more knowledge regarding dementia and person-centred dementia care and that training interventions implemented to enhance staff competence had promising results. However, there is a need for research on the needs of patients with dementia in acute hospital settings regarding physical environment and effect of design elements. There is also a scarcity of intervention studies focusing on the effect of models of care that support the psychosocial needs of patients with dementia.

Interventions to enhance access to and utilization of formal community care services for home dwelling persons with dementia and their informal carers. A scoping review.

Objectives: Home dwelling people with dementia and their informal carers often do not receive the formal care services they need. This study examined and mapped the research regarding interventions to improve access and use of formal community care services.Method: This is a scoping review with searches in PubMed, CINAHL, PsychINFO, Medline, Cochrane Database of Systematic Reviews, Social Science Citation index and searches of grey literature in international and national databases. Studies were categorized according to the measure used to enhance access or use.Results: From international databases, 2833 studies were retrieved, 11 were included. Five studies were included from other sources. In total, 16 studies published between 1989 and 2018 were examined; seven randomized controlled trials, six pretest-posttest studies and three non-randomized controlled studies. Sample sizes varied from 29 to 2682 participants, follow-up from four weeks to four years. Five types of interventions were identified: Case management, monetary support, referral enhancing, awareness & information focused and inpatient focused. Only two studies had access or use of community services as the primary outcome. Fourteen studies, representing all five types of interventions, had positive effects on one or more relevant outcomes. Two interventions had no effect on relevant outcomes.Conclusion: The included studies varied widely regarding design, type of intervention and outcomes. Based on this, the evidence base for interventions to enhance access to and use of formal community services is judged to be limited. The most studied type of intervention was case management. More research is recommended in this field.

Relationship quality and sense of coherence in dementia: Results of a European cohort study.

OBJECTIVE: Quality of life of people with dementia and their family carers is strongly influenced by interpersonal issues and personal resources. In this context, relationship quality (RQ) and sense of coherence (SOC) potentially protect and promote health. We aimed to identify what influences RQ in dyads of people with dementia and their carers and to examine differences in their perspectives. METHODS: Cross-sectional data were used from the Actifcare cohort study of 451 community-dwelling people with dementia and their primary carers in eight European countries. Comprehensive assessments included the Positive Affect Index (RQ) and the Orientation to Life Questionnaire (SOC). RESULTS: Regression analyses revealed that RQ as perceived by people with dementia was associated with carer education, stress, and spouse caregiving. RQ as perceived by carers was associated with carer stress, depression, being a spouse, social support, reported neuropsychiatric symptoms of dementia, and carer SOC. Neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad. The only factor associated with both individual RQ ratings and discrepancies was carer stress (negative feelings subscore). No significant differences in the overall perception of RQ were evident between spouses and adult children carers, but RQ determinants differed between the two. CONCLUSIONS: In this European sample, carer SOC was associated with carer-reported RQ. RQ determinants differed according to the perspective considered (person with dementia or carer) and carer subgroup. A deeper understanding of RQ and its determinants will help to tailor interventions that address these distinct perspectives and potentially improve dementia outcomes.

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.

BACKGROUND: People 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. METHOD: Focus 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. RESULTS: Overall, 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. CONCLUSION: Further 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.

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

BACKGROUND: Persons 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. METHODS: A phenomenological hermeneutic research design was applied. Unstructured, face-to-face interviews and field observations were conducted twice, three months apart. RESULTS: Twelve 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". CONCLUSIONS: Persons 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.

Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries.

BACKGROUND: As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers. METHODS: Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4-7 experts (total N = 38). The interview guide addressed the topics "Complexity and Continuity of Care", "Formal Services", and "Public Awareness". Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries. RESULTS: The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness. CONCLUSIONS: Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.

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 VPM's 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.

Principal component analysis of the Norwegian version of the quality of life in late-stage dementia scale.

AIMS: To investigate which factors the Quality of Life in Late-Stage Dementia (QUALID) scale holds when used among people with dementia (pwd) in nursing homes and to find out how the symptom load varies across the different severity levels of dementia. METHODS: We included 661 pwd [mean age ± SD, 85.3 ± 8.6 years; 71.4% women]. The QUALID and the Clinical Dementia Rating (CDR) scale were applied. A principal component analysis (PCA) with varimax rotation and Kaiser normalization was applied to test the factor structure. Nonparametric analyses were applied to examine differences of symptom load across the three CDR groups. RESULTS: The mean QUALID score was 21.5 (±7.1), and the CDR scores of the three groups were 1 in 22.5%, 2 in 33.6% and 3 in 43.9%. The results of the statistical measures employed were the following: Crohnbach's α of QUALID, 0.74; Bartlett's test of sphericity, p <0.001; the Kaiser-Meyer-Olkin measure, 0.77. The PCA analysis resulted in three components accounting for 53% of the variance. The first component was 'tension' ('facial expression of discomfort', 'appears physically uncomfortable', 'verbalization suggests discomfort', 'being irritable and aggressive', 'appears calm', Crohnbach's α = 0.69), the second was 'well-being' ('smiles', 'enjoys eating', 'enjoys touching/being touched', 'enjoys social interaction', Crohnbach's α = 0.62) and the third was 'sadness' ('appears sad', 'cries', 'facial expression of discomfort', Crohnbach's α 0.65). The mean score on the components 'tension' and 'well-being' increased significantly with increasing severity levels of dementia. CONCLUSION: Three components of quality of life (qol) were identified. Qol decreased with increasing severity of dementia.

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 (ß = 0.360, p-value < 0.001), NPI-agitation score (ß = 0.268, p-value < 0.001), PSMS total score (ß = 0.181, p-value < 0.001), NPI-apathy (ß = 0.144, p-value < 0.001), NPI psychosis (ß = 0.085, p-value 0.009), CDR sum of boxes score (ß = 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.

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.

You can tell it works - Experiences from using the VIPS practice model in primary healthcare.

INTRODUCTION: Person-centred care is a philosophy rather than a method ready for implementation and utilization in daily clinical work. Internationally, few methods for person-centred care have been widely adopted in clinical dementia care practice. In Norway, the VIPS practice model is one that is commonly used for the implementation and use of person-centred care in primary healthcare. METHOD: Nursing home physicians, managers and leaders in the municipalities, care institutions and domestic nursing care services were eligible for inclusion if their workplace had implemented and used the VIPS practice model for a minimum of 12 months. Individual interviews were conducted via Facetime, Skype or telephone and analysed with qualitative content analysis. FINDINGS: In all, 20 respondents were included: one manager of health and care services in the municipality, six managers and leaders working in domestic care or daytime activity centres and 10 managers/leaders and three physicians working in nursing homes. Two global categories emerged: category 1: Change in staff's professional reasoning with two sub-categories: (a) an enhanced professional level in discussions and (b) a change in focus from task to person; and category 2: Changes in the clinical work, with three sub-categories: (a) effective interventions, (b) a person-centred work environment and (c) changes in cooperation between stakeholders. CONCLUSION: Regular use of the VIPS practice model appeared to change the work culture for the benefit of both service users and frontline staff. Increased cooperation between frontline staff, nurses, physicians and next of kin was described. Staff were more focused on the needs of the service users, which resulted in care interventions tailored to the needs of the individual with dementia, loyalty to care plans and fewer complaints from next of kin.

'We must have a new VIPS meeting soon!' Barriers and facilitators for implementing the VIPS practice model in primary health care.

INTRODUCTION: Person-centred care is a philosophy of care rather than a method ready for implementation and utilisation in daily work. Internationally, few methods for the implementation of person-centred care have been widely adopted in clinical and care practice. In Norway, the VIPS practice model is a commonly used model for person-centred care implementation. METHOD: Qualitative manifest content analysis was used. Managers and leaders in the municipalities, care institutions and domestic nursing care services were eligible for inclusion if their workplace had implemented the VIPS practice model and conducted the consensus meeting regularly for a minimum of 12 months. Seventeen respondents were included. Individual interviews were conducted either via FaceTime, Skype or telephone. RESULTS: Three global categories emerged describing the implementation process: (1) factors that impact the decision made at municipal level to implement person-centred care; (2) requirements for a good start at unit level and (3) factors that help to support the new routines in the unit. The categories were entwined; the results of one affected the results of the others. The informants from both domestic nursing care and institutions described the same factors as important for the implementation of the VIPS practice model. CONCLUSION: To implement person-centred care by use of the VIPS practice model, the frontline staff need sufficient information about the rationale for implementing the model. The management's vision and ethos of person-centred care must be followed by time set aside for staff training and regularly scheduled VIPS practice model consensus meetings. Head nurses are key to getting the new routines established and maintained and should be supported by the management.

Quality of Life, Care Resource Use, and Costs of Dementia in 8 European Countries in a Cross-Sectional Cohort of the Actifcare Study.

BACKGROUND: With 10.5 million people with dementia in Europe and $301 billion associated costs, governments face challenges organizing access to care. OBJECTIVE: To examine the costs related to formal and informal care use and quality of life for people with dementia in eight European countries, and explore the association with unmet needs. METHODS: Cross-sectional data from 451 persons with dementia and their informal caregivers of the Actifcare cohort study were obtained. Formal and informal care use was multiplied by country specific unit prices of services. Needs were measured using the CANE and health-related quality of life (HRQOL) of the person with dementia (both self- and proxy-rated) and informal caregiver's quality of life using EQ-5D-5L, ICECAP-O, DEMQOL-U, and CarerQol utility scores. The association between costs and country, European region, and unmet needs was assessed using multi-level linear regression. RESULTS: Self-rated EQ-5D-5L utility score was higher than proxy-rated (0.84 and 0.71, respectively). Informal caregivers' utility score was 0.84. Across eight countries annual mean costs of formal and informal care were approximately € 17,000. Unmet needs were not associated with annual costs of care, nor with proxy-rated HRQOL, but were associated with self-rated HRQOL. CONCLUSION: We found varying relationships between unmet needs and quality of life, and no association between unmet needs and care costs, although the results were sensitive to various factors. Future research should further investigate the relation between unmet needs, quality of life and costs to generate a better understanding of the effects of (un)timely access to care.

Impact of Untimely Access to Formal Care on Costs and Quality of Life in Community Dwelling People with Dementia.

BACKGROUND: Access to formal care is not always timely and a better understanding on the impact of untimely access is needed. OBJECTIVE: To examine, from a societal perspective, the impact of untimely access to formal care in terms of total costs and quality of life over one year in community dwelling people with dementia. METHODS: Within the Actifcare study, needs, resource use, and quality of life were observed for one year in a cohort of 451 community dwelling people with dementia in 8 European countries. Untimely access to care was operationalized as having at least one unmet need for care identified by the Camberwell Assessment of Need for the Elderly (CANE) instrument. Two regression models were built for both total costs and quality of life measured by the EQ-5D-5L, one using sum of unmet needs and one using a predefined selection of need items. RESULTS: Unmet needs were not associated with higher total costs but they were associated with a lower quality of life of people with dementia. Of all CANE items, only an unmet need for "company" was significantly related to lower total costs. CONCLUSION: Total costs did not seem to differ between participants with unmet and met needs. Only few associations between specific unmet needs and costs and quality of life were found. Furthermore, quality of life of people with dementia decreases when multiple unmet needs are experienced, indicating that assessing and meeting needs is important to improve quality of life.

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 patient's 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.

A model for using the VIPS framework for person-centred care for persons with dementia in nursing homes: a qualitative evaluative study.

BACKGROUND: The 'VIPS' framework sums up the elements in Kitwood's philosophy of person-centred care (PCC) for persons with dementia as values, individualised approach, the perspective of the person living with dementia and social environment. There are six indicators for each element. Aim. To conduct an initial evaluation of a model aimed at facilitating the application of the VIPS framework. DESIGN: Qualitative evaluative study. METHODS: A model was trialled in a 9-week pilot study in two nursing homes and evaluated in four focus groups using qualitative content analysis. RESULTS: Five themes emerged: (1) Legitimacy of the model was secured when central roles were held by nurses representing the majority of the staff; (2) The model facilitated the staff's use of their knowledge of PCC; (3) Support to the persons holding the internal facilitating roles in the model was needed; (4) The authority of the leading registered nurse in the ward was crucial to support the legitimacy of the model and (5) Form of organisation seemed to be of importance in how the model was experienced. CONCLUSION: The model worked best in wards organised with a leading registered nurse who could support an auxiliary nurse holding the facilitating function.