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P5. INTERDEM: Improving and promoting psychosocial care for persons with dementia

Detailed programme, abstracts and presentations

P5.1. Improving and promoting psychosocial care for persons with dementia

Vernooij-Dassen Myrra

INTERDEM is dedicated to improving psychosocial care for persons with dementia, through applied practice-based research and innovation. Both the development and evaluation of psychosocial intervention and the organisation of care are important topics. New innovative psychosocial interventions build on knowledge gained in the field, meaning that care should be person centred, fashioned to the needs and preferences people and carers and provided in a timely manner to support their negotiation through the transitions associated with living with a dementia.

Innovative topics are addressed such as improving the availability and practice of psychosocial intervention in Memory Clinics - now found all over Europe, although national and local circumstances can make delivery difficult. Promoting psychosocial care requires special efforts. It can be done by a specific Dementia Service Centre or well established facilities such as Memory Clinics. A comparison between Italy and England by INTERDEM and the motivation to make available evidence-based psychosocial interventions ‘for all’ as outlined in the Dementia Service Centre (DSC) approach in Austria, reflects the diversity of European healthcare systems and cultures, but highlights common ground in a shared mission to enhance practice, policy and quality of life of people with dementia and their supporters. Moreover, the DSC approach represents an effort to develop services together with persons with dementia and their families.

We constantly try to improve approaches for major dementia problems such as the management of challenging behaviour.  A study in seven NHS centres across England, to detect needs in people and families living at home in order provide specialised intervention by trained therapists, will be presented.  Historically efforts to intervene with challenging behaviour have been undertaken in the care home setting. The German study goes a step towards real life practice by adapting and testing Dementia Care Mapping – a promising existing intervention of international interest due to is association with the birth of person centred care in the UK, into its local context. The symposium will close with what is now a pressing concern for INTERDEM – the issue of preventing social exclusion and promoting valued social activities and relationships in dementia care. The WHELD presentation will outline how it has begun to address this with a systematic trial in care homes in England.

P5.2. Psychosocial approaches and memory clinics: from knowledge to practice. A comparison between Italy and UK

Chattat Rabih, Moniz-Cook Esme, Fabbo Andrea, Carafelli Antonella, Doncaster Emily, Orrell Martin, Watts Sue

Background: Memory Clinics in dementia care have become an international innovation for improving the quality of care. Psychosocial Interventions (PSI) have a developing evidence base but less is known about how such services provide psychosocial therapies. The aim of this survey was to explore the availability of evidence-based psychosocial interventions within a quality improvement program at the Royal College of Psychiatry’s Memory Services National Accreditation Program (MSNAP) in England and regionally-led memory services in Emilia-Romagna, Italy

Methods: PSI standards developed through review of the evidence base, a standard ‘development workshop’, email consultation and expert consensus was established in England and an equivalent Italian version was created. The survey was distributed by email to all MSNAP members and online in Italy. For each intervention, participants were asked to indicate if it was ‘provided by the memory clinic team or by other services/organisations’ or if it was ‘not currently available’. Participants were also asked to report the typical ‘dosage’.

Results: In England the survey was distributed to all 49 MSNAP members within NHS mental health services with a 41% response rate (n=20). In Italy all 53Centers for Cognitive Disorders in the Emilia Romagna were invited to complete the online survey, with a 55% response rate (n= 29). These centers are allocated within local health agencies and funded by the NHS. The majority of the clinics in both countries provided assessment and diagnosis, including discussion around driving issues and pre and post-diagnostic support. Interventions for cognitive problems were commonly available, although in Italy this was contracted to other provider organisations and the content and range of types of interventions varied widely. This trend was also seen for interventions for emotional support; a better balance across countries was seen in provision of occupational and functional interventions within memory services. All services offered information and support but the content of this and associated ‘dosage’ varied. There was a marked difference across Italy and England in interventions to promote continuity of care and care management.

Conclusion: Psychosocial interventions appear to be available within memory services. However, the content, range and monitoring of what is delivered remains variable. Providing commissioners at national and regional level with a case for change on what is offered in terms of timely PSI within these services may go some way to reduce the current inequity in provision of care to people and their families referred to memory services.

P5.3. Promoting psychosocial care through a Dementia Service Centre

Auer Stefanie, Span Edith, Seyfang Leonhard

Introduction: Cognitive stimulation training for Persons with Dementia (PswD) and multicomponent interventions for caregivers are two well established methodologies for psychosocial interventions (Olazaran, et al, 2010). Different structures for the provision of psychosocial interventions are emerging. The Model of a DSC was developed by closely interacting with PswD and their supporters. A DSC is a low threshold, “one stop” structure, designed for longitudinal support of the PwD and their supporters. The DSC provides three main elements of psychosocial services: early disease detection, caregiver training and stage specific training for PswD. The acceptance of these three elements was investigated.

Methods: 6 DSC were established throughout the county of Upper Austria. A longitudinal follow up protocol was developed, assessing cognitive, functional and behavioural disease parameters as well as caregiver parameters. Training attendance and caregiver activities are monitored. To assess dementia severity, the Global Deterioration Scale (GDS) is used.

Results: 1’796 persons received a baseline evaluation (617 males/1’179 females).  The median MMSE was 21 (Q116, Q3 26), the median age was 79 (Q172, Q3 84). Of the 1796 recruited PswD, 1014 (56.5%) agreed to take part in the stage specific training, 782 (43.5%) did not participate. 1’766 GDS protocols could be analysed.  14 persons were normal (GDS stage 1), 209 persons had a subjective cognitive impairment (GDS 2), 264 persons had a mild cognitive impairment (GDS 3), 494 persons had mild dementia (GDS 4), 538 persons were in the moderate stage of dementia (GDS 5), 225 persons had severe dementia (GDS 6) and 22 persons had very severe dementia (GDS7). 175 Caregivers (10% of the caregiver population) participated in all 5 training modules. Families remained in the structure for 2 years (Median Q1 0.9, Q3 3.6) on average with extremes of over 11 years.

Conclusion: A high percentage of persons in the pre-stages and beginning stages of dementia are attracted by the DSC. More than half of the baseline population accepted a  stage specific training. The main hurdles for non- participation are financial reasons, transport problems, and no caregiver available. Caregiver’s participation in training modules was found to be low. Informal support and informal provision of disease related information may be more important for caregivers and supporters.

P5.4. Challenge FamCare: how can we provide timely care for challenging behaviours in the family home?

Moniz-Cook Esme, Hart Cathryn, Watts Sue, Goudie Fiona, Charlesworth Georgina, Smith Janine, Fossey Jane, Clarke Chris

Background: A Cochrane review of functional analysis-based interventions (i.e. modernising traditional ‘behaviour management’) for challenging behaviour in dementia at home found benefits in family care settings. However detecting those in need and providing timely interventions within routine NHS services is difficult, since most specialist challenging behaviour NHS dementia services work with staff in care homes. Challenge FamCare aimed to detect and provide timely treatment for challenging behaviour by therapists trained in functional analysis-based intervention, to families referred to specialist community mental health services. This paper describes the process of detecting challenging behaviour and the outcome of specialist mental health practitioner support to a cohort of people with dementia and challenging behaviour and their family carer.

Method: Every new case referred over 6 months to 33 specialist community mental health teams in seven Mental Health NHS organisations across England was reviewed. Interviews with practitioners in these services explored where older people with dementia living at home with challenging behaviours might be located across the dementia care pathway, and the barriers to access of skilled support. Finally a cohort of 157 ‘new cases’ with dementia and challenging behaviour were examined at 2 months and 6 months following referral to specialist services. The primary outcome was reported behavioural problems and caregiver reaction to these using a widely validated 24 - item instrument of common problems reported by family caregivers.

Results: Of the 5’360 referrals over 6 months, specialist attention was focused on patients without dementia or those living in care homes. Patients living at home were often re-directed to other services. Barriers to access of skilled behaviour management advice included misperceptions about the nature of challenging behaviour in family care settings amongst mental health practitioners. Intervention by specialist mental health services in the cohort of 157 families did not reduce challenges faced by families, since behaviour problems worsened over time. However this was moderated by timely mental health support since more home visits earlier in the 6 month episode of care achieved better outcomes.

Conclusions: Preventing escalation of challenging behaviour in family care settings is possible, but specialist Mental Health community services in England need to be resourced and targeted towards people and families living in their own homes, if the burden of behavioural symptoms is to be prevented. Specialist practitioners also require training, support and supervision to detect behaviours that families find difficult to manage and to deliver individualised functional analysis-based interventions.

P5.5. Dementia Care Mapping intervention: the challenge of improving daily practice in nursing homes

Halek Margareta, Dichter Martin, Dortmann Olga, Riesner Christine, Quasdorf Tina

Background: Most of the residents in nursing homes have challenging behaviours that strongly affect their quality of life (QoL). Person-centered care (PCC) aims to achieve the best possible QoL and to reduce challenging behaviours. Dementia Care Mapping (DCM) is an instrument for implementing PCC. An Australian study (Chenoweth et al. 2009) suggests that the positive effect of DCM on agitation can be generalised for other health care systems. No data exist on the effects of DCM in German nursing homes (NH).

Method: The ongoing quasi-experimental study ‘Leben-QD II, Strengthening Quality of Life for People with Dementia’ evaluates the effectiveness and implementation of DCM in German NH. The influence of newly implemented DCM (group B) on outcomes mentioned below will be compared to two comparison groups (group A and C): in group C an alternative QoL assessment (QUALIDEM) was introduced, in group A DCM was implemented a long time before the study started. Nine wards from nine NH are taking part in the study. Outcomes are: residents’ QoL and challenging behaviours, staffs’ attitudes toward dementia, job satisfaction and burnout measured at baseline (T0), 12 (T1) and 22 (T2) months later. In this presentation changes in prevalence of residents’ challenging behaviour (NPI-NH) between T0 (n=154) and T1 (n = 147) will be presented. 

Results: The residents’ mean age ranges between 82 and 84 years in the three groups, 80% to 85% are female and 30% to 44% of residents have very severe dementia (FAST=7).

The total prevalence of challenging behaviour rose at T1 in group A (88% to 93%) and B (96% to 98%) and decreased in group C (90% to 89%). Changes were small and not significant. Severity of dementia (FAST) and care dependency (PSMS) did not change over time. The differences between groups are also not significant.

Conclusion: Chenoweth et al. (2009) showed that DCM has a positive impact on agitation (CMAI), but no overall effect on challenging behaviour (NPI-NH) after 8 months. Our preliminary results show a non-significant increase of challenging behaviour in DCM groups (A and B) during the first 12 months. We assumed that those NH which have already implemented DCM over a long period (group A) show better results for challenging behaviour. This could not be verified. Results of process evaluation indicate that the effect of the intervention is influenced by the differences in implementation (e.g. degree of implementation).

P5.6. WHELD: A factorial randomised controlled trial of person centred care training, exercise, interaction and engagement and antipsychotic review to improve quality of life for people with dementia in care homes

Ballard Clive, FosseyJane, Orrell Martin, Khan Zunera, Moniz-Cook Esme, Stafford Jane, Whittaker Rhiannon

Background: Results of randomised controlled trials of person centred care training for staff in care homes and nursing homes have indicated encouraging benefits for people with dementia.  However, although most studies have demonstrated some benefits, none have improved neuropsychiatric symptoms amongst people with dementia and reduced the use of antipsychotic medication, and none have demonstrated improvements in quality of life for people with dementia.  The aim of the WHELD factorial study was to determine whether the value of person centred care training could be augmented with social intervention, exercise or antipsychotic review.

Method: The WHELD factorial study was a cluster randomised controlled trial in 16 care homes over 9 months.  All participating care homes received person centred care training, but were additionally randomised in a factorial design to receive no additional intervention, exercise, social intervention or antipsychotic review.

Results: 15 of the 16 clusters completed the trial, with a total of 289 participants with dementia. Social intervention significantly improved quality of life for people with dementia as measured by the DEMQOL proxy, whereas the antipsychotic review reduced antipsychotic use and reduced mortality, but with some worsening of neuropsychiatric symptoms and no improvement in quality of life.  Exercise did not confer a significant benefit.

Conclusion: The optimal intervention was a combination of person centred care training, social intervention and antipsychotic review. The elements of the antipsychotic review may however need further consideration as part of an optimised intervention.






Last Updated: Monday 04 November 2013


  • Acknowledgements

    The 23rd Alzheimer Europe Conference in St. Julian's, Malta received funding from the European Union, in the framework of the Health Programme. Alzheimer Europe and the Malta Dementia Society gratefully acknowledge the additional support provided by foundations and companies.
  • European Union