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P12. INTERDEM – Care and services

Detailed programme, abstracts and presentations

Delivering individualised interventions for ‘changing behaviours’ that challenge caregivers


1University of Hull, United Kingdom, 2University of Bangor, United Kingdom

Evidence-based interventions and guidelines exist on supporting people with dementia who have unmet needs, that caregivers find ‘challenging’.  However, implementing structured individualised protocols remains hard to achieve. Reasons for this include tensions in aims of research studies:  (i) treatment of ‘Behavioural and Psychological Symptoms of Dementia - BPSD / Neuropsychiatric Symptoms - NPS, can differ in aims and emphases, from caregiver support programmes for Challenging Behaviour – CB; (ii)  differing aims can then influence the primary outcome measure (e.g. symptom reduction vs caregiver efficacy) of an intervention and the associated evidence; (iii) people with dementia and their advocates are understandably vocal about the ‘BPSD syndrome’; some argue that it contributes to harmful pharmacological responses; and notions of ‘mis’-behaviour can undermine dignity; (iv) some environmental / staff support interventions aim at preventing or delaying development of behavioural problems, whilst others target clinically significant symptoms; thus studies rarely provide clarity on what might work for who in practice or which caregivers are significantly challenged and require support; (v) intervention protocols for unmet health and psychosocial need in people who are viewed as ‘challenging’ for caregivers, rarely consider the additional needs of different settings and contexts within which care is delivered; (vi) differing nursing home cultures and organisation require differing approaches to delivering support; and for those living at home, a good assessment of assets and needs of all those involved in supporting the person with dementia is required. In this symposium studies from, Germany, Norway Portugal and Italy explore the differing needs of nursing home and family care systems in delivering interventions for BPSD. The final paper outlines multidisciplinary practitioner views across the UK, on how evidence-based individualised interventions for ‘Behaviours that Challenge’ - BtC care within family and care homes is arrived at. Implications for practice are discussed.

P12.1. Implementing the case conference protocol in German nursing homes 

HOLLE Daniela1,2, TEUPEN Sonja2, GRAF Rabea2, MÜLLER-WIDMER Rene2, REUTHER Sven3,2, HALEK Margareta 2,4, ROES Martina2,4

1Hochschule für Gesundheit (hsg), University of Applied Science, Bochum, Germany, 2German Center for Neurodegenerative Diseases, Witten, Germany, 3Städtische Seniorenheime Krefeld, Krefeld, Germany, 4University of Witten Herdecke, Witten, Germany

Background:  A structured dementia-specific ‘case conference’ protocol using systematic assessment, analysis and relevant individualised interventions (i.e. WELCOME-IdA) for residents with challenging behaviour (CB) was tested for effectiveness in the InDemA and FallDem nursing homes (NHs) studies. To gain insight into how the protocol was implemented, process evaluations were conducted, including exploring the experiences of end-user nursing staff. 

Methods: Interview and observational field note data from 18 nurse teams and 12 nursing homes were analysed using thematic content analysis. Additionally, deductive content analysis (with inductive categorisation) was used to understand data from 34 semi-structured telephone interviews and 15 focus groups conducted in 4 NHs.

Results: WELCOME-IdA improved nurses’ understanding of the causes of CB, its management and their communication with residents. Factors that hindered delivery included limited dementia-knowledge, lack of biographical information about residents, under-developed facilitator (moderator) skills in focusing case conference discussion, and poor access to other professionals. There were also variations in the key elements of WELCOME-IdA: most NHs adhered to structural roles such as the facilitator (moderator), case reporter, minute-keeper and reflection partners.  However, the group size of 5-8 participants per case conference was only partially adopted; continuity of participation by the core nursing team in all case conferences did not occur at all; assessment and analysis occurred outside the case conference structure; and evaluation of the interventions was organised in different ways.

Conclusions: Aspects for improvement in the delivery of case conferences for CB include structural and personal resources (such as access to other professionals/dementia-knowledge/ improving facilitator skills). Fidelity to the intervention and its delivery will also require tailored adaptations of WELCOME-IdA to suit the particular needs of a given nursing home.

P12.2.  The TIME intervention for neuropsychiatric symptoms in nursing homes. Why did it work in Norway?

LICHTWARCK Bjørn1, MYHRE Janne1, GOYAL Alka1, ROKSTAD Anne Marie Mork2, SELBAEK Geir3, KIRKEVOLD Øyvind1, BERGH Sverre1

1The Research Centre for Age-related Functional Decline and Disease, Innlandet Hospital Trust, Ottestad, Norway, 2Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Norway, 3Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Norway

Background: TIME (Targeted Interdisciplinary Model for Evaluation and Treatment of neuropsychiatric symptoms), represents a multicomponent bio-psychosocial approach for treatment of Neuropsychiatric symptoms (NPS). This includes a rigorous assessment, a systematic structured reflection on the causes of NPS during a case conference, and a tailored treatment plan. Case conferences are structured using concepts from cognitive behavioural therapy and person-centered care. A three-month cluster randomised controlled trial (cRCT) in 33 nursing homes showed significant reduction in agitation (primary outcome), other NPS, and better quality of life in favor of the TIME intervention. At baseline, 6 and 12 months, process evaluation found no between-group post-intervention differences in staff knowledge or attitudes towards dementia and NPS, but staff had developed a new shared knowledge about individual residents. The present study explored where there were other staff experiences that might have contributed to improvements in NPS using TIME.

Methods: 3-6 months following the RCT, we interviewed 32 of the formal caregivers, leaders, and physicians from 11 of the 17 nursing homes in the intervention group, divided into five focus groups. Interviews were transcribed and analysed using thematic content analyses to extract meaningful themes.

Results: Two main themes emerged: (1) The systematic reflection method used in the case conferences, enhanced learning at work; (2) The structured approach helped the staff to cope with NPS in residents with dementia.

Conclusion: TIME appeared to shift the way in which staff learned to manage NPS, to promote reflection-based learning within a process of ‘learning how to learn’ at work. A structured approach to delivering bio-psychosocial interventions for residents with NPS contributes to positive outcomes. 

P12.3.  Towards family sensitive practices for behavioural and psychological symptoms of dementia (BPSD) at home


1Nova Medical School/UNL, Lisbon, Portugal, 2Penn State University, USA, 3Santiago de Compostela University, Spain

Background: Where interventions for behavioural and psychological symptoms of dementia (BPSD) are directed at families who support people with dementia, the focus is usually on a ‘primary carer’ i.e. the family member who is in most contact with the person with dementia. However, families constitute more than one person, and can act as a reactive system where other members and family dynamics are involved. Others may have both positive interpersonal resources and also contribute to triggers or maintenance of BPSD and ‘challenges in caregiving’. Little is known about the needs and contribution of other ‘secondary’ family carers. In one comparative study of primary and secondary carers we found great variability in carer experience of BPSD, with notable associations between BPSD and distress; but no significant differences between primary and secondary carer distress was found.1 The present study now compares the needs of this cohort of primary and secondary carers who support the person with dementia at home. 

Methods: We studied 61 dyads of primary and secondary carers using two carer-items (dementia knowledge and distress) from the Camberwell Assessment of Need for the Elderly-CANE.

Results: Fourteen (23.3%) primary carers had an unmet need for dementia knowledge and 16 (26.7%) had unmet need in the ‘psychological distress’ domain.  Thirteen (21.7%) secondary carers, had an unmet need for dementia knowledge and 10 (16.7%) had unmet need in the ‘psychological distress’ domain. Primary and secondary carers did not differ on these two domains of ‘need’ (i.e. p=1.000 and p=0.180, respectively).

Conclusion: The present study confirms the view that there is justification in assessing the needs of family network as a whole, in order to provide family-sensitive 2 tailored support for the management of BPSD at home.


1Gonçalves-Pereira et al. A comparison of primary and secondary caregivers of persons with dementia. (2019, Psychology and Aging in press).

2Gonçalves-Pereira. Toward a family sensitive practice in dementia. In: Verdelho & Gonçalves-Pereira. Neuropsychiatric symptoms of cognitive impairment and dementia. Springer, 2017.

P12.4.  Early psychosocial intervention for family carers in Italy: Effects on behavioural problems and carer distress 

CHATTAT Rabih1, AMICI Serena2, OTTOBONI Giovanni1 

1Department of Psychology, University of Bologna, Bologna, Italy, 2Azienda Sanitaria Locale, N.1 dell ‘Umbria, Perugia, Italy

Background: Early psychological intervention (PSI) for carers supporting people with dementia at home, can have a positive effect on their distress and on how they understand and react to behavioural problems. This was demonstrated in the landmark New York ‘Mittleman’ spouse-carer counselling study of over two decades ago. Initially spouse-carer distress was reduced; later the PSI demonstrated a significant positive effect on breakdown of care at home and on how carers reacted to behavioural problems (but not on the frequency of these). The present study outlines post-treatment (3-month post-baseline) findings of an adapted ‘Mittelman’ PSI, conducted in Italy.  

Methods: This prospective multicenter randomised controlled trial included over 200 family carers who were supporting a person with dementia at home. Families were randomly allocated to either the modified ‘Mittelmann’ PSI or an educational intervention. The PSI involved 6 hours of face-to-face counselling/psychosocial support provided by psychologists and follow-up telephone support; the educational intervention comprised a 6-hour meeting, to offer information about dementia.

Results: Regression analysis demonstrated significant reductions in both the frequency and carer reaction to behavioural problems associated with the length of time (hours) that carers received treatment i.e. longer treatment was associated with fewer reported behavioural problems and better coping by the carer.  No effect was seen on reported distress from this analysis. For both treatment conditions psychological burden, measured by mood indicators was higher for those in receipt of more hours of treatment.

Conclusion: The results confirm findings from other PSI studies - that the timing of delivering interventions and measuring outcome is important. The moderating effect of PSI on caregiver distress might appear later, as family carers, with support from psychologists/counsellors, adjust to their situation.

P12.5.  How do practitioners in the UK target evidence-based individualised interventions for ‘Behaviours that Challenge -BtC’?

JAMES Ian1, DUFFY Frances2, MONIZ-COOK Esme3

1Newcastle Tyne and Wear NHS Foundation Trust, United Kingdom, 2Northern Health and Social Care Trust, Belfast, Northern Ireland, United Kingdom, 3University of Hull, Hull, United Kingdom

Background: Rational decision-making processes are the cornerstone of interventions for Behaviours that Challenge ‘BtC’ caregivers. Assessments reviewed within multidisciplinary meetings (‘case conferences’) are used to formulate individualised interventions for unmet health and psychosocial need. Little is known about use of structured processes to formulate interventions - or how UK practitioners make decisions. The NICE dementia revised guideline (2018) did not specify within its ‘BtC’ sections (i.e. managing non-cognitive symptoms-1.7/supporting carers 1.11) best practice multidisciplinary procedures for targeting interventions. This study investigates professional views on use of rational decision-making for intervening in BtC, described in the UK as ‘formulation’.

Methods: Modified Delphi study with face-to-face consultation; an online 34-item survey (6 themes); and review by an expert multidisciplinary practitioner reference group. The formulation 8-item theme from the online survey and its thematic analysis is reported.

Results: Of 378 responses, 357 (nurses, psychologists, psychiatrists, elderly medicine, neurology, GPs, OTs, social workers etc) were about formulation. 275 participants used formulations; 81 did not. Formulations were used with: almost everyone (104) / often (84) / rarely (9). They were seen as: ‘extremely useful’ (n=131) / ‘useful’ (n=71) / ‘slightly useful’ (n=6). Perceptions of the value of formulation were: function (empathy towards the person/family; person-centered not problem centered); process (collaborative meetings combines knowledge including life stories of the person/family; better outcomes (sharing responsibility facilitates review/resolution/reformulation). Obstacles were: practical constraints (time, staff shortages, larger caseloads, excessive paperwork); resource (lack of psychologists to facilitate formulation meetings); weak outcomes (support plans become a ‘paper exercise’). When multidisciplinary formulation is not used, unstructured approaches to intervention and unclear outcomes may occur.

Conclusion: BtC remains the most complex and costly aspect of dementia. Rational decision-making can be time-consuming at the assessment/formulation phase.1 Advantages of multidisciplinary formulation-driven individualised interventions outweigh practical and resource obstacles.

Reference: 1 Wolfs, et al (2012) Rational decision-making about treatment and care in dementia: A contradiction in terms? Patient Education Counseling 87,1, 43-8.



Last Updated: Tuesday 10 December 2019


  • Acknowledgements

    The 29th AE Conference in The Hague received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe and Alzheimer Nederlands gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche