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P16. Behavioural and psychosocial aspects of dementia

Detailed programme and abstracts

P16. Behavioural and psychosocial aspects of dementia (Wednesday 2 Nov., 8.30 - 10.00)

P16.1. Evaluation of psychosocial interventions for dementia: what to learn from the Cochrane Library?

CHARRAS Kevin, GZIL Fabrice, REINTJENS Christophe, FREMONTIER Michèle

Introduction: Psychosocial interventions for people with dementia have expanded in the last decades, and have been subject to an important number of evaluation attempts that often lead to scientifically flaw results according to standards of randomised-control-trials.

Method: To study these failures we analysed the meta-analyses of the Cochrane Library. Among 18 meta-analyses, 11 were selected for the purpose of this study: physical activity, functional analysis, massage and touch therapy, cognitive training, music therapy, psychotherapy, cognitive rehabilitation, cognitive stimulation, Snoezelen ©, reminiscence therapy, validation therapy, psycho-educational programs. These papers were analysed on the basis of the Cochrane selection criteria, methodological quality and biases, principal outcomes and implication for practice and research.

Results and discussion: Results will be discussed and analysed according to clinical and scientific literature of the matter of concern. Main outcomes of this review point that: (1) it is necessary to adopt an investigation methodology adapted to specific characteristics of psychosocial interventions; (2) methodological weaknesses of randomised control trials are prejudicial to quality of research and clinical practice; (3) implementation of randomised control trials call for necessary fundamental prerequisites; and (4) other research methods than randomised control trials are susceptible to give as much, if not more, informative results.

Conclusion: A research and practice implementation strategy based on the 5 steps recommended by the Medical Research council and revised by Vernooj-Dassen and Moniz-Cook (2014) is suggested.

P16.2. A pan-European study on outcome measures for psychosocial intervention research in dementia

CHATTAT Rabih, MONIZ-COOK Esme, WOODS Bob, and members of the INTERDEM JPND outcomes working group

This paper is the first of four arising from a JPND programme conducted by INTERDEM, with Alzheimers’ Europe and partners from Australia.

This study, updates findings of our previous highly accessed work published in 2008, taking into account the subsequent growth of high quality psychosocial intervention studies in dementia across Europe. The methodology of consensus workshops, systematic searches and rigorous validation against pre-determined criteria was replicated for eleven domains of outcome measures in dementia.  Not all measures from 2008 stood the test of time but twenty-two measures were identified with potential for data sharing activity across Europe. A new finding was the gap associated with positive changes in quality of life in people with dementia and their supporters. This was not necessarily due to the quality of the innovative interventions that were tested. We conclude that there is scope for improved measurement of quality of life in dementia to reflect studies that are concerned with empowerment of people with dementia and families, to live a ‘good life’. Notions of well-being, positive attitudes, emotions and associated behavior - for example hopefulness, moments of pleasure, humour and reciprocal contributions to family friends and society - need to be understood and systematically reported, using measures  with a ‘good fit for purpose’.

Future papers will outline how this may be achieved to include: charting new territory in the measurement of Quality of Life (Woods et. al); what people with dementia have to say about outcome measurement in psychosocial intervention research (Mountain et al); and how systematic consultation with them about measurement in research studies can be conducted across Europe (Gove et al).  

There will be opportunity for participants to debate our preliminary findings and contribute to this programme of work aimed at raising the standards of outcome measurement in psychosocial research across Europe.

P16.3. Preliminary validation of a measure of guilt in people with dementia.


Introduction: People with dementia (PwD) report feelings of guilt, typically associated with the perceived burden they feel that they may pose to others.  However, there are currently no formal measures to assess guilt in PwD.

Aim: To develop a measure of guilt in PwD.

Design: The study employed a two-stage, mixed methods approach. Item generation was informed by themes identified in the qualitative research literature, definitions and measures of guilt from existing quantitative studies and themes from a focus group conducted with PwD. Content validity was established through expert rating of the initial item pool. Psychometric properties of the scale were then investigated using a cross-sectional survey design.

Method: Participants with a diagnosis of either Dementia or Mild Cognitive Impairment were invited to participate in the study. 54 Participants completed the following measures: GPWD, Geriatric Depression Scale (GDS-15) and the Warwick-Edinburgh Wellbeing Scale (WEMWBS).

Guilt items were subjected to reliability analysis, while principal components analysis was used to determine the factor structure of the scale.  Comparison with measures of depression and psychological wellbeing were used to assess convergent validity, while internal reliability was also assessed.  

Results: Reliability analysis resulted in 13 items being retained in the final GPWD scale, with principal components analysis yielding a single underlying factor accounting for 53.1% of variance.  The new measure showed high internal consistency reliability.  Moderate positive correlations between the GPWD and the GDS-15 and moderate inverse correlations between the GPWD and the WEMWBS provided evidence of convergent validity of the scale.

Conclusions:  Preliminary validation indicates that the GPWD has good psychometric properties.  The measure provides a clinically relevant tool for the assessment of guilt in individuals with Dementia or MCI.  It also has potential applications for advancing our understanding of the relationship between guilt and depression in PWD and providing appropriate therapeutic support.

P16.4. The prevalence and associated factors of resilience in family caregivers of people with dementia. An integrative data-analysis of multi-national studies


Background: Caring for a relative with dementia can be stressful and present a considerable risk for negative psychosocial consequences to family carers. Despite this, there are carers who, even in the face of considerable care demands, appear to manage relatively well with few negative consequences to their well-being. This can potentially be interpreted as a sign of ‘resilience'.

Objective: This study examined what proportion of caregivers demonstrate resilience under different challenging circumstances and identified factors related to their resilience using data from multiple studies.

Method: Baseline data from four studies from The Netherlands and the UK among family caregivers of people with dementia were harmonized and integrated. Caregiver resilience was defined as a good psychological well-being while facing different types of high care demands (caring for a relative with more severe dementia, self-care limitations, behavioural problems, providing a substantial amount of care, or a combination). Multivariate regression analyses identified factors significantly related to caregiver resilience.

Results: The integrated dataset included 17 harmonized variables with data from 1,311 caregivers. The prevalence of resilience varied between 35 to 43%, depending on the high care demand they faced. Still 39% of the carers showed high resilience when facing more than one high demand. Being a female carer, caring for a male or spouse, living apart from your relative and experiencing low care burden were positively related with high caregiver resilience in the combined data-analyses.

Conclusion: Caregivers have the capacity to demonstrate resilience despite different challenges of caring. This study provides a demonstration how harmonisation of data from multiple existing studies can be used to derive a large, heterogeneous sample. Understanding dementia caregiving from a resilience perspective contributes insights for developing services for those supporting people with dementia.

P16.5. Individualized-formulation led interventions for analysing and managing challenging behaviour of persons with dementia – an integrative review

HOLLE Daniela, HALEK Margareta, PINKERT Christiane

Background: Individualized-formulation led interventions offer a promising approach for analyzing and managing challenging behaviors of persons with dementia. Those interventions are person-centered and carer-focused and thus can even be employed in situations where persons with dementia have either poor communication skills and/or poor insights. This review aims to synthesize isolated pieces of information from theoretical, quantitative and qualitative research about individualized-formulation led interventions, into a more comprehensive and internally consistent whole.

Method: An integrative review was chosen to describe and analyze existing approaches of individualized formulation-led interventions and review the evidence of those interventions. A systematic literature research was conducted in the databases Pubmed, PsycInfo and Cinahl, resulting in a final list of 37 relevant papers, of which 23 papers provide theoretical information and 14 empirical data (quantitative or qualitative) on individualized-formulation-led interventions.

Results: 14 different approaches were identified, 8 of them are designed for the use in nursing homes, 3 for the use at home in the community and 3 are not setting-specific. None was found for the use in hospital settings. The analysis of causes of challenging behavior is the core element of all 14 approaches, whereas the scope of behavior description varies greatly. Evidence mostly exists for the use of individualized-formulation led interventions in nursing homes, showing promising results on patients´ outcomes (e.g. reduction on challenging behavior, discomfort or prescription of psychotropic drugs). Experiences of carers are available for 3 approaches used in nursing homes.

Conclusion: This review shows a promising number of individualized formulation-led interventions, which are predominantly designed and tested for nursing homes. There is a clear need for more research on individualized-formulation led interventions for the use at home in the community and hospital settings. The knowledge base that is outlined in this review has potential for developing and testing future individualized-formulation led interventions.

P16.6. Severe behaviour response teams; addressing the needs of people with very severe and extreme Behavioural and Psychological Symptoms of Dementia (BPSD)


In 2015 a new national approach to the management of severe, very severe and extreme behaviours of concern in residential care was announced by the Australian government. Comprising a multidisciplinary workforce of aged care nurses; allied health and specialist medical staff the Severe Behaviour Response Teams (SBRT), led by HammondCare have been providing expert assessment and management of high-level behavioural disturbances within residential aged care facilities across Australia. Key components of the service, believed to be the first of its type in the world, include rapid and responsive in reach to residential aged care facilities, and an emphasis on expert behavioural (rather than primarily pharmacological) management. Rebuilding the confidence of staff where confidence is diminished and supporting them to understand more the complex interplay between the person with dementia, the disease, the environment and the interaction of staff, residents and family has been a key focus within the program. Pharmacological management alone would not create long term sustainable results so the practical aspect of SBRT being present and providing a range of additional interventions leads to longer term change.

A detailed description of the service model and an evaluation of the first 12 months of operation of the service will be provided. It is anticipated that if the SBRT model can be successful in a country as large and diverse as Australia, it may prove worthy of replication in other jurisdictions.



Last Updated: Tuesday 10 January 2017


  • Acknowledgements

    The 26th AE Conference in Copenhagen received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimerforeningen gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche