Raising the standard of applied dementia care research : addressing the implementation error

Editoria

INTERDEM network celebrates 20 years

Myrra Vernooij-Dassen, INTERDEM Chair, Esme Moniz-Cook,Co-chair and Rabih Chattat, Board member highlight some ofthe network’s key achievements of the past 20 years

Social health in dementia care: Harnessing an applied research agenda

Item does not contain fulltextThe notion of social health (Huber et al., 2011) as applied to dementia care research was introduced to redress the balance of empirical studies that tended to focus on biomedical, cognitive, and functional status in dementia (Vernooij-Dassen and Jeon, 2016). The introduction of social health has followed the zeitgeist of campaigners for a better life for those living with dementia, with initiatives to improve the social images of dementia (Alzheimers.org, 2017). Examples from social research in dementia to examine friendships and the social environments of people with dementia exist (Medeiros et al., 2012), but introduction of the paradigm of social health in dementia (Vernooij-Dassen and Jeon, 2016) has harnessed a growing research agenda (de Vugt and Droes, 2017). This paradigm provides an umbrella concept to study how social aspects influence the dynamic balance between opportunities and limitations in dementia. Social health goes beyond the neuropathology of dementia, to understand how people, their social networks and wider society with its norms, interact with the condition (Vernooij-Dassen and Jeon, 2016). It is not far removed from the ideas of Tom Kitwood, the pioneer of person-centered dementia care, who noted that "personhood is a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being" (Kitwood, 1997). The INTERDEM (Early detection and timely INTERvention in DEMentia, www.interdem.org) psychosocial research agenda aspired to improve knowledge about social inclusion and reciprocal relationships for people with dementia (Moniz-Cook et al., 2011). The concept of social health (Vernooij-Dassen and Jeon, 2016) with its dimensions for dementia research (Droes et al., 2017) has begun to develop this knowledge-base

Why did an effective Dutch complex psycho-social intervention for people with dementia not work in the German healthcare context? Lessons learnt from a process evaluation alongside a multicentre RCT

Contains fulltext : 97517.pdf (publisher's version ) (Open Access)Background The positive effects of the Dutch Community Occupational Therapy in Dementia programme on patients' daily functioning were not found in a multicentre randomised controlled trial (RCT) in Germany. Objectives To evaluate possible effect modification on the primary outcome within the German RCT with regard to (1) participant characteristics, (2) treatment performance and (3) healthcare service utilisation; and (4) to compare the design and primary outcome between the German and the original Dutch study. Methods (1) The impact of participant baseline data on the primary outcome was analysed in exploratory ANCOVA and regression analyses. (2) Therapists completed questionnaires on context and performance problems. The main problems were identified by a qualitative content analysis and focus-group discussion. Associations of the primary outcome with scores of participant adherence and treatment performance were evaluated by regression analysis. (3) Utilisation rates of healthcare services were controlled for significant group differences. (4) Differences in the Dutch and German study design were identified, and the primary outcome was contrasted at the item level. Results (1) Participant characteristics could not explain more than 5% of outcome variance. (2) The treatment performance of some active intervention components was poor but not significantly associated with the primary outcome. (3) There were no significant group differences in the utilisation of healthcare resources. (4) In contrast to the Dutch waiting-control group, the active intervention in the German control group may have reduced group differences in the current RCT. The German patients demonstrated a higher independence at baseline and less improvement in instrumental activities of daily living. Conclusion The differences in outcome may be explained by a more active control treatment, partially poor experimental treatment and less room for improvement in the German sample. Future cross-national transfers should be prepared by pilot studies assessing the applicability of the intervention and patient needs specific to the target country. Trial registration International Clinical Trials Registry Platform, DRKS00000053

Improving palliative care in selected settings in England using quality indicators:A realist evaluation

Background: There is a gap between readily available evidence of best practice and its use in everyday palliative care. The IMPACT study evaluated the potential of facilitated use of Quality Indicators as tools to improve palliative care in different settings in England. / Methods: 1) Modelling palliative care services and selecting a set of Quality Indicators to form the core of an intervention, 2) Case studies of intervention using the Quality Indicator set supported by an expert in service change in selected settings (general practice, community palliative care teams, care homes, hospital wards, in-patient hospices) with a before-and-after evaluation, and 3) realist evaluation of processes and outcomes across settings. Participants in each setting were supported to identify no more than three Quality Indicators to work on over an eight-month period in 2013/2014. / Results: General practices could not be recruited to the study. Care homes were recruited but not retained. Hospital wards were recruited and retained, and using the Quality Indicator (QI) set achieved some of their desired changes. Hospices and community palliative care teams were able to use the QI set to achieve almost all their desired changes, and develop plans for quality improvements. Improvements included: increasing the utility of electronic medical records, writing a manual for end of life care, establishing working relationships with a hospice; standardising information transfer between settings, holding regular multi-disciplinary team meetings, exploration of family carers’ views and experiences; developing referral criteria, and improvement of information transfer at patient discharge to home or to hospital. Realist evaluation suggested that: 1) uptake and use of QIs are determined by organisational orientation towards continuous improvement; 2) the perceived value of a QI package was not powerful enough for GPs and care homes to commit to or sustain involvement; 3) the QI set may have been to narrow in focus, or more specialist than generalist; and 4) the greater the settings’ ‘top-down’ engagement with this change project, the more problematic was its implementation. / Conclusions: whilst use of QIs may facilitate improvements in specialist palliative care services, different QI sets may be needed for generalist care settings

Positive psychology outcome measures for family caregivers of people living with dementia: a systematic review

Background: Family caregivers of people living with dementia can have both positive and negative experiences of caregiving. Despite this, existing outcome measures predominately focus on negative aspects of caregiving such as burden and depression. This review aimed to evaluate the development and psychometric properties of existing positive psychology measures for family caregivers of people living with dementia to determine their potential utility in research and practice. Method: A systematic review of positive psychology outcome measures for family caregivers of people with dementia was conducted. The databases searched were as follows: PsychINFO, CINAHL, MEDLINE, EMBASE, and PubMed. Scale development papers were subject to a quality assessment to appraise psychometric properties. Results: Twelve positive outcome measures and six validation papers of these scales were identified. The emerging constructs of self-efficacy, spirituality, resilience, rewards, gain, and meaning are in line with positive psychology theory. Conclusions: There are some robust positive measures in existence for family caregivers of people living with dementia. However, lack of reporting of the psychometric properties hindered the quality assessment of some outcome measures identified in this review. Future research should aim to include positive outcome measures in interventional research to facilitate a greater understanding of the positive aspects of caregiving and how these contribute to well-being

Social health is associated with tract-specific brain white matter microstructure in community-dwelling older adults

Background Poor social health has been linked to a risk of neuropsychiatric disorders. Neuroimaging studies have shown associations between social health and global white matter microstructural integrity. We aimed to identify which white matter tracts are involved in these associations. Methods Social health markers (loneliness, perceived social support, and partnership status) and white matter microstructural integrity of 15 white matter tracts (identified with probabilistic tractography after diffusion magnetic resonance imaging) were collected for 3352 participants (mean age 58.4 years, 54.9% female) from 2002 to 2008 in the Rotterdam Study. Cross-sectional associations were studied using multivariable linear regression. Results Loneliness was associated with higher mean diffusivity (MD) in the superior thalamic radiation and the parahippocampal part of the cingulum (standardized mean difference for both tracts: 0.21, 95% CI, 0.09 to 0.34). Better perceived social support was associated with lower MD in the forceps minor (standardized mean difference per point increase in social support: −0.06, 95% CI, −0.09 to −0.03), inferior fronto-occipital fasciculus, and uncinate fasciculus. In male participants, better perceived social support was associated with lower MD in the forceps minor, and not having a partner was associated with lower fractional anisotropy in the forceps minor. Loneliness was associated with higher MD in the superior thalamic radiation in female participants only. Conclusions Social health was associated with tract-specific white matter microstructure. Loneliness was associated with lower integrity of limbic and sensorimotor tracts, whereas better perceived social support was associated with higher integrity of association and commissural tracts, indicating that social health domains involve distinct neural pathways of the brain

Measuring the well-being of people with dementia : a conceptual scoping review

Background: Enabling people with dementia to ‘live well’ is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures.Methods: Three scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was then examined.Findings: Six conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties. To date, twenty have been used as outcome measures, with seven showing change over time. A number of identified instruments utilise traditional retrospective Likert-scaling formats, limiting their potential for use with some groups of people with dementia.Conclusion: An assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research on processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based ‘in-the-moment’ measurement. Key words: dementia; outcome measurement; well-being; quality of life; positive psychology; successful aging; lived experienc