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Culture, Communication and Dementia

Lookup NU author(s): Dr Tony Young


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• Topic area Social, behavioural and care research • Key word(s) Caregiving issues Communication Education Learning Objectives A. Describe a new communications toolkit for formal and informal caregivers which has been developed by a spectrum of stakeholders in the UK - people living with dementia, psychiatrists, psychologists, communications scholars, institution carers, loved ones of people with dementia and speech and language therapists. B. Illustrate the central importance of effective communication in cost-effective care strategies, and in fostering of the quality of life and individual agency for people living with dementia. C. Demonstrate how an innovative, multi-stakeholder and multiprofessional consultation process can be successfully managed, and how the efficacy of such an innovation can be empirically tested for efficacy using a battery of gold-standard measures. • Background (max 350 words) In this presentation we describe a UK-based research project which established a theoretically-grounded, practically-orientated dementia communications toolkit and benchmark. This will be freely available in various forms relevant to the needs of a range of stakeholders. We will also show how the toolkit is internationally and inter-culturally applicable and adaptable. Recent key policy initiatives in the U.K. and internationally have highlighted quality of life in general, and effective, therapeutic communication practices in particular, as target areas for improvement in dementia care (Alonso et al, 2010; Alzheimer’s Disease International, 2009; Department of Health and Medical Research Council, 2009). A small but growing body of research evidence suggests that improving communication involving people living with dementia (plwd) can have a positive impact on their quality of life, as well as on informal (usually family) carers, and on people working in care environments such as psychogeriatric wards in hospitals and long-term care institutions. Communication practices which support agency, personhood and empowerment have been identified as areas for particular improvement. Where such approaches have been promoted, recent research evidence suggests that they can improve the quality of life of plwd, reduce carer stress and burnout, and have some effect on care staff retention (e.g. Young and Manthorp, 2009). However, the prevailing situation both in terms of support for plwd and their family members in their own homes, and in terms of the quality of formal care currently provided in care contexts, is considerably less than optimal, with poor communication practices the norm and the application of appropriate, evidence-based carer communication guidance and training highly unusual. Although a number of communication training and guidance packages are currently available, we argue that these exhibit shortcomings which have perhaps tended to reduce their applicability. These include a lack of user input and cross-referencing to other communications theory or to relevant empirical evidence; a lack of applicability to the needs of individual plwd; and high context-specificity. Our research project was instigated to address these shortcomings and to develop a communication intervention that would have a high potential international take-up. Methods (max 350) Project participants were a total of 79 people. Of these, 31 were people living with dementia (plwd), 19 were informal carers (usually family members of the plwd) and 29 were professionals. The professionals consisted of 6 dementia care specialist nurses; 5 health and communications researchers; 4 managers of long-term general and dementia care specialist institutions; 4 senior administrators for long-term care providers (housing associations and local authorities); 4 from the Alzheimer's Society (care and communications specialists); 2 old age registered general nurses; 2 professional care specialists from non-dementia organisations and 2 speech and language therapists. The project convenors were a communications scholar, a care specialist and an old-age specialist psychiatrist (proposed presenters). The consultation project had several stages. In a pilot project, the convenors:-1. Systematically reviewed all available research literature reporting communications interventions relevant to dementia care worldwide; 2. Reviewed current best practice in their own immediate professional contexts (care homes and psychogeriatric wards in the U.K); 3. Drew up a consultation document detailing a conceptual framework for a communications intervention called a 'code of practice' (Young & Manthorp, 2009).The project then refined and developed the code of practice through consultation with target user groups (both lay and multiprofessional) through focus groups and individual interviews, conference presentations, and workshops to produce an agreed core communications 'toolkit', styled 'DEMTEC' (Dementia Toolkit for Effective Communication). Variations on the core DEMTEC were also produced, tailored to the needs of different user groups (informal carers, institutional care-givers whose first language is not English, and medical professionals).Our inclusive, iterative research design aimed to increase the communication intervention's validity and its relevance to intended user groups. We drew together best communicative practice as perceived by a range of people with expertise and/or lived experience of care and living with dementia. We therefore sought data from sources that would be able to confirm, challenge or expand emerging theory as they related it to their actual lived experiences. Such an approach, with input from a spectrum of lay and professional stakeholders, remains highly unusual for research into therapeutic interventions in residential care or health context. Results (max 350) DEMTEC is now ready for field application and evaluation, and we will detail this process in the presentation. Level 1 of DEMTEC is a statement of basic beliefs and principles underlying a person-centred and empowering approach to effective communication with plwd. This summarises multi-stakeholder foundational beliefs from a UK perspective about the central importance of communication in the lives of plwd; the effects of dementia on communication; and agreed general approaches to communication which acknowledge personhood and so promote agency and empowerment. Based on this, Level 2 of the toolkit consists of 8 specific components of effective communication: mindfulness and empathy, non-verbal communication, conversation, reducing anxiety, helping people keep a sense of self, checking understanding, understanding difficult behaviours, and environmental considerations. Each of these Level 2 components consists of a definition, a rationale for inclusion in the toolkit, and a list of up to 20 specific strategies and considerations for optimising communication. Level 3 consists of practical and individualised advice on actual communication with people at various stages of dementia. This is in the form of 5 illustrative case studies showing how the toolkit’s advice and guidance might be applied to people at early, early-to-mid, mid, mid-to-late and late stages of dementia in a variety of care contexts. Please see table 1 for an overview of DEMTEC’s structure. Next steps are to develop training packages based on DEMTEC for different audiences, and to apply these in different care contexts in the UK (3 residential care homes and 1 day care centre). We will then evaluate the effectiveness of the toolkit using dementia-specific Quality of Life measures such as DEMQOL (Banerjee et al. 2006; Smith et al. 2005, 2007) together with satisfaction ratings from carer trainees and people with dementia, and measures of increased independence and choice. The project group will then facilitate free-to-all-users (UK and globally), web-based dissemination of agreed versions of DEMTEC, in association with project partners Alzheimer's Society UK, and with international agencies. We will establish interactive site management allowing placement of new examples of good communicative practice and suggestions for modification of the toolkit for specific circumstances. Results We will conclude by relating the project's findings to the needs of its multiple potential beneficiaries:- People living with dementia (PLWD). Enhancing the communication practices of those around them will help PLWD to retain agency and personal and social identity through increased control over their lives and circumstances. DEMTEC's flexible design means it will be adaptable over time, and to different sociocultural contexts, so these benefits are potentially long-lasting and international. The contributions of individual PLWD and carers, and of self-help groups and NGOs such as the Alzheimer's Society in drawing up DEMTEC will be recognised and will serve as encouragement and as a model for the involvement of all stakeholder groups in developing psychosocial interventions in health and social care contexts. Dissemination of DEMTEC as a free-to-all-users toolkit will allow an ongoing process of refinement and adaption of DEMTEC which will encourage further research and reflection on communication practices and dementia.- Family members and informal carers for PLWD will benefit from improved communication, and more effective interactions, lessening their own anxiety, mitigating stress and facilitating greater satisfaction with their roles with consequential quality of life and cost of care benefits.- Care home workers, hospital nursing staff and other care professionals will benefit from being introduced or reintroduced to a person-centred approach to relationships with PLWD. Recent reports, which have received much attention in the press and from policy makers internationally, have shown poor understanding of dementia in significant numbers of health professionals and care workers, despite the prevalence of dementia in hospital and care home settings, and in the wider community. Manifestations of this lack of understanding are reductions in independence and choice, which may lead to perceived behavioural disturbance and an over-reliance on anti-psychotic drugs, with consequent detrimental results on the quality of life of PLWD, and a higher mortality rate (UK Department of Health, 2009). Professionals will also benefit from improved communication, lessening their own anxiety and facilitating greater satisfaction with their roles. More positive and meaningful communication with PLWD will make for better relationships and for positive reinforcement of roles.

Publication metadata

Author(s): Young TJ; Manthorp C

Publication type: Conference Proceedings (inc. Abstract)

Conference Name: International Conference on Alzheimer's Disease

Year of Conference: 2011