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P24. Psychosocial interventions II

Detailed programme, abstracts and poster presentations

P24.1. Psychosocial support for people with dementia with changing behavior and their carers living in the community

PRINS Marleen1, VAN DER SCHOT Astrid1, VAN ASCH Iris1, WILLEMSE Bernadette1, POT Anne Margriet2

1Trimbos-instituut, Utrecht, Netherlands, 2Vrije Universiteit, Amsterdam, Netherlands

Background:Behavior of people with dementia (PwD) living in the community changes over time. These behavior changes can be difficult to cope with for PwD themselves and their family carers. Research has shown negative effects on quality of life of the PwD, their family carer and their relationship. Changes in behavior that are difficult to cope with accelerates the placement of the PwD in a care home. Apart from the fact that people prefer to stay in their own environment as long as possible, placement in a care home also has a substantial impact on the already high costs of long-term care. Therefore, the availability of psychosocial interventions for managing challenging behaviors is important and currently lacking in the community. Psychosocial interventions for managing challenging behaviors should use a person-centered approach and try to discover underlying causes of behavior and try to influence them, in line with the theory of Kitwood.

Interventions:Two interventions have been developed and evaluated. These interventions focus on discovering underlying causes for the behavior and formulate individualized plans. The first intervention is an e-learning that consists of six films with different types of behavior that are freely available on the national dementia platform (dementie.nl). In these films, family carers and professionals explain what the behavior entails, what common causes are and how they coped with the behavior in the past. The second intervention is aimed at dementia case managers. They learn to follow a six step method in helping PwD and their family carers to manage challenging behavior. Important elements are: multidisciplinary approach, involving family carers in discovering causes and evaluating the individualized plan. These interventions improve psychosocial care for PwD and their carers dealing with challenging behavior living in the community. The development and content of and experiences with both interventions will be presented.

P24.2. The effects of the Namaste Care Family program on caregiving experiences of caregivers of people with dementia

SMALING Hanneke1, JOLING Karlijn2, FRANCKE Anneke3, ACHTERBERG Wilco1, VAN DER STEEN Jenny1

1Leiden University Medical Center, Department of Public Health and Primary Care, Leiden, Netherlands, 2Amsterdam Public Health research institute, Amsterdam UMC, location VU University Medical Center, Department of General Practice and Elderly Care Medicine, Amsterdam, Netherlands, 3Amsterdam Public Health research institute, Amsterdam UMC, location VU University Medical Center, Department of Public and Occupational Health, Amsterdam, Netherlands

Family caregivers of people with advanced dementia regularly judge quality of life as poor and find it difficult to meaningfully connect with their relative. Psychosocial interventions for people with advanced dementia generally do not involve family caregivers or lack evaluation of the effects on caregiver outcomes. The daily Namaste Care program provides person-centered care offering meaningful activities to people with advanced dementia. We adapted Namaste Care to more actively involve family caregivers. Using a cluster-randomized controlled trial, we examined the effect of Namaste Care Family on family caregiver experiences. Ten nursing homes implemented Namaste Care Family for 117 residents, while nine nursing homes provided usual care for 114 residents. The Gain in Alzheimer Care Instrument (GAIN) was used to measure family caregivers’ gains in dementia caregiving at baseline and after 1, 3, 6, and 12 months. Qualitative interviews with family caregivers took place 12 months after the start of the program. Mixed models were used to take clustering of repeated measurements within subjects and subjects within nursing homes into account. Interaction terms for group with time were also added. No overall effect of group on caregivers’ gains was found. However, the difference in caregivers’ gains between the Namaste group and control group at 6 months was significantly different with lower caregivers’ gains in the Namaste group. Qualitative data indicated that family caregivers changed in how they perceived people with dementia (more positive awareness), visited their relative more often, experienced improved contact with their relative, and reported that the program affected their own feelings (e.g. feeling happy when seeing their relative enjoying him/herself, but also finding it confronting to see residents in more advanced stages of dementia). Involving family caregivers in Namaste Care Family can have both a positive and negative impact on caregiving experiences.

P24.3. How to implement evidence-based therapies for people with dementia in low- and middle-income countries: The case of Cognitive Stimulation Therapy and Brazil, India and Tanzania (CST-International)

STONER Charlotte, SPECTOR Aimee

University College London (UCL), London, United Kingdom

Background: It is estimated that the 58% of people with dementia currently reside in low-and middle-income countries (LMICs). Despite growing numbers, service provision and access to medication can be limited in many world regions. As such, there is an urgent need for effective therapies for people with dementia in LMICs. Cognitive Stimulation Therapy (CST) is a brief, evidenced-based, effective and cost-effective intervention that, in a Cochrane review of 15 randomised controlled trials, has been found to consistently improve cognition over and above any medication effects. CST now takes place in 29 countries around the world, with pilot work in Brazil, India and Tanzania finding the same beneficial effect. However, CST is yet to be implemented into routine care.

Methods: Using novel implementation research methodology we aim to develop, test, refine and disseminate implementation strategies for CST in these three diverse parts of the world. Initially, stakeholder meetings involving policy makers, healthcare professionals, people with dementia and carers were undertaken in each country to explore the barriers and facilitators to CST provision. Mechanisms to support implementation were then devised and rated for importance and ease by the stakeholders. From this, an implementation plan for each country was developed and agreed upon.

Preliminary Results: In Tanzania, 49 people including a regional mental health co-ordinator and 6 people with dementia took part in stakeholder meetings. Barriers included stigma, lack of available specialists and language differences. An advisory committee (n = 16) rated each of the mechanisms devised for importance and ease and an implementation plan was developed. Examples of mechanisms in the implementation plan included ensuring CST facilitators are granted protected time from other duties and to develop and run a ‘dementia awareness course’ for family carers and professionals. Results and implementation plans for Brazil and India will be presented at the conference.

P24.4. Co-creation of a web-based interactive educational tool for family caregivers of people with dementia

BUFFEL Connor1, LUYCKX Evi2, VANDER STICHELE Geert2

1MindBytes, Edmonton, Canada, 2MindBytes, Turnhout, Belgium

Background: Family caregivers of people with dementia experience substantial burden, yet receive limited training. Although digital tools have shown promise in supporting this growing population, they have not been widely implemented because they are not co-created, evidence-based, nor validated.

Objective: The objective of this research was to co-create a web-based interactive educational tool with dementia stakeholders that could offer value to family caregivers by providing them with insights and advice on coping and interacting with their loved ones with dementia.

Method: The SERES Framework was used to guide the development process. A literature review was performed to establish a conceptual model and identify barriers and drivers of caregiver burden, which were linked with real-life scenarios. Psychologists (n=3), family caregivers (n=6), and support volunteers (n=3) validated the model and scenarios. An interactive educational tool was developed and feedback was collected on content, design, and usability in a field test of family caregivers (n=18) and focus groups of family caregivers (n=14) and volunteers (n=10). Feedback was also collected on content and deployment strategy from dementia clinicians (n=7), researchers (n=5), patient/caregiver organization representatives (n=8), healthcare mutuality (n=1), and government (n=1) from 15 institutions in Belgium and the Netherlands.

Results: An interactive educational tool was developed, which could be played by groups or individuals. It consisted of 10 modules linked to barriers and drivers of caregiver burden. Each module included a narrative of three scenarios. Users could choose between three actions per scenario and received qualitative and quantitative feedback. Dementia stakeholders suggested that language should be simpler and more positive, quantitative feedback should be more intuitive, and a voice-over was recommended.

Conclusions: Application of the SERES Framework generated relatable scenarios to facilitate the exploration of coping strategies and advice by family caregivers. A web-based interactive educational tool could offer value to family caregivers.

P24.5. CRDL – Interactive technology to elicit engagement in elderly people with dementia

LEXIS Monique, VAN DEN HEUVEL Renee, DANIELS Ramon

Zuyd University of Applied Sciences, Heerlen, Netherlands

Background: People with an advanced stage of dementia encounter problems with communication and interaction, leading to decrease in participation and social isolation. CRDL (Cradle) is an interactive instrument developed for people with dementia to stimulate communication and social interaction. The aim of this study was to examine the effects of two CRDL interventions on engagement among people with dementia.  

Methods: The study consisted of a mixed-methods design. Two interventions with CRDL were developed and tested in two nursing homes with 30 clients following an ABB-design; phase A included one ‘care-as-usual’ session without CRDL; phase B (B1 - B2) included sessions with CRDL. The primary outcome engagement was measured with the Positive Response Schedule (PRS). Furthermore, interviews with participating professionals were conducted to evaluate their experiences. PRS data were analyzed using the Wilcoxon signed rank test by comparing scores on the individual items of sessions A-B1 and A-B2.

Key results: 30 clients with severe dementia (22 females, 8 males) and 6 care professionals participated in the study. The professionals could choose intervention (1) ‘influencing behaviour’ or (2) ‘enabling social interaction’. For 10 clients, intervention (1) was selected, and for 20 clients, intervention (2). For the intervention (1) ‘influencing behaviour’, positive effects were found compared to care-as-usual on four items of the PRS, i.e. deliberate body movement (B1-A p=0.051; B2-A p=0.025), deliberate head movement (B1-A p=0.017), focus on environment (B1-A p=0.011; B2-A p=0.091) and engagement (B1-A p=0.059; B2-A p=0.097). No differences were found on PRS items for intervention (2). Professionals all reported positive experiences and expressed their willingness to proceed working with CRDL.

Conclusion: This study gave positive indications for effects of CRDL to stimulate engagement. Future research on the effects of other CRDL interventions and in other target populations is recommended.

P24.6. Prison initiatives to support older prisoners and those with dementia: The prisoner’s lived experience

BROOKE Joanne

Birmingham City University, Birmingham, United Kingdom

Background: The prevalence of dementia in the prison setting is increasing due to the aging prison population with poor health (Brooke et al. 2018). Initiatives to support older prisoners and those with dementia have been implemented. The aim of this study was to explore prisoners lived experience of attending an initiative designed for older prisoners and those with dementia.

Method: A phenomenological inductive study in a category C male prison in England, which implemented 2 initiatives for older prisoners and those with dementia, including a work group and a social group for prisoners over the age of 55. Data was collected in 2017, through focus groups (n=4) with prisoners (n=11) attending the work group (n=2) and social group (n=2). Focus groups were completed within the prison setting, audio recorded, transcribed verbatim, and thematic analysis as described by Braun and Clarke (2006) was completed.

Result: The participants from the social group were older and more physically and cognitively impaired than those attending the work group. Three themes emerged: (1) ‘The need to feel safe’, prisoners felt attending these initiatives provided them with a safe haven away from boisterous and unsettled younger prisoners; (2) ‘Being provided with a purpose’, prisoners felt they belonged to a group, which motivated them to complete activities; (3) ‘Prison initiatives should not be aged defined’, these prisoners felt excluded from other initiatives within the prison.

Conclusion: Prisoners experienced the support and safety of attending groups created and designed for older prisoners and those with dementia, however also expressed the need to be integrated into wider prison initiatives. Both the social and work group supported prisoners with dementia to be active in the prison setting and not to be unduly locked in their cells. The impact of these initiatives beyond prisoner’s experiences needs to be further explored.

 

 
 

Last Updated: Thursday 04 July 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
 
 

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