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P12. Effective communication

Detailed Programme, abstracts and presentations

P12.1. Improving effective communication: use of written cueing system for patients with dementia

Delphine J. Herrmann

As people are living longer, the prevalence of dementia is increasing and many people with dementia must be cared for in nursing homes. In the last 30 years, research has emphasised environmental manipulations to improve functional communication in everyday life. In particular, the use of written cues and external memory aids has been found to have positive outcomes for patients with dementia.

The author will review the literature on the efficacy of written cueing systems used with patients with dementia. Studies have shown that written cues positively influence the following: functional and effective communication, psychosocial well-being, and independence in activities of daily living. Furthermore, these systems illustrate decreased social isolation and regressive behaviors when implemented. Through the literature review, participants’ knowledge of the rationale and value of written cues to maintain functional and effective communication will be enhanced.

In addition, this presentation will explain the benefits and clinical implications of various types of written cues. Concrete examples of cues will be put into practice during the session and participants will learn to manipulate the presented information. It will provide them with tools they can apply in practice with patients and families. For example, the use of memory wallets can facilitate effective communication by increasing factual statements, turn taking and elaborations. Furthermore, activities of daily living can be modified via written cues for increased independence. The steps for brushing teeth are written out and posted where the task is completed: this will allow the patient to do this task independently versus depending on someone for cues.

The author will highlight training sessions for caregivers and families on how to utilize and incorporate written cues into daily lives so as to improve effective communication and decrease social isolation.

Lastly, these cues can also be used as tools for counselling the loved ones of dementia patients. They can promote effective communication between families and patients by increasing communicative opportunities. Families can also feel more in control and empowered when using these tools.

The author will focus on the following points:

  • Communicative and cognitive profile of dementia patients
  • Outline of environments of nursing homes and its impact on these patients
  • Value of written cues (including counseling and offering support for families)
  • Explanation and implementation of different types of written cues
  • Positive outcomes when such cues are implemented.

P12.2. Effective communication on the terms of the person with dementia

Margrét Gústafsdóttir

There often appears to be a lack of understanding of the way in which to approach a person with dementia, and especially how to be with him or her as the individual progresses through the different stages of the illness. Communication draws upon the roles and status of the persons involved in the respective situation, and may reflect some expectations inherent in their responsibilities and duties. Also, effective verbal as well as non-verbal communication between people depends very much upon a correct or appropriate response from the person related to, in some particular context of interest or intention. But the person with dementia may not know the right or appropriate response, or remember the matter or context to which reference is made. So things may go awry, unless the person with dementia is met with flexibility and tolerance in each and every encounter. Otherwise, the person with dementia may withdraw and even resign under a cover. Covering up, may at times be the only way to escape the expectations of the situation and others while communicating.

Research on the relationship between family and staff, in both nursing homes and specialised daycare centres for people with dementia, has shown that both family and staff find communication with a person with dementia demanding and sometimes difficult. Interviews with family members and groups of staff, as well as participant observation in both research settings, indicate that particular strategies are necessary to engage with each and every person with dementia. Resourcefulness on the part of family and staff seems to make all the difference in the communication context. Family or staff resourcefulness may, indeed, be more important than the specific behaviour of the person with dementia. Resourcefulness entails knowing how to be connected, close and considerate, while adapting verbal exchange and limiting activities to the ability and inclinations of the person with dementia. Being resourceful means knowing how to be with, and do things in collaboration with, the other. Tolerant togetherness is what counts in all encounters with a person with dementia – getting along in sync with the person’s condition, ability, mood and preferences.

A wife, for example, emphasised during an interview in the above-mentioned study that having her husband around, when the family gathered together, was more important than having much verbal exchange with him – as she said: “We like to keep him with us – going along and being among us – he does not have to say all that much – just being around – as a part of the family”. This wife certainly acknowledged her husband’s increasing inability to communicate with words during any encounter. But for her the presence of the husband and father was more important than anything specific he said. Such acceptance by the family of the person with dementia may allow him/her to relax and enjoy the togetherness of people close to him/her, without being placed in the spotlight and judged for his/her shortcomings. Non-judgemental circumstances bring out a kind of loyalty and fidelity that are grounded in close ties with family and friends. At such times it becomes obvious how communication highlights the ethical demands of all relationships.

P12.3. Creative journeys: 10 secrets to using art to unlock communication in dementia

Michelle Burns

In the absence of a medical cure for Alzheimer’s disease and related dementias, we can optimise the quality of life of those currently affected through the innovative use of expressive arts. This workshop will demonstrate how to create an expressive arts program in any dementia care setting. This innovative program not only provides a forum for Alzheimer’s patients to express themselves when verbal communication is compromised but also addresses some of the ever-growing societal issues emerging with early diagnosis.

Progressive cognitive decline often leads to the loss of initiative and communication skills. In many instances this results in isolation, depression, and anxiety. Stimulating activities and specifically the expressive art program at the senior access adult day centres mitigates loneliness, depression and anxiety while enhancing cognitive engagement in our clients.

The Creative Journeys workshop will outline ten secrets to overcoming the challenges in implementing successful art projects with cognitively impaired individuals. Workshop participants will learn how to:

  • Enhance cognitive functioning, peer connections, decision making, fine motor skills and provide a sense of purpose and accomplishment for the patient;
  • Capture a lasting expression of each patient through each art piece:
  • Facilitate a hands-on experience by completing a model project, and
  • Increase public awareness through exhibits of client artwork, serving as dementia awareness campaigns. Art exhibits showcase the surprising talents of the traditionally marginalized dementia population to help ease the discrimination and stigmatization within the community at large.

Upon completion of the workshop, participants will also receive a Creative Journey’s Manual which includes instructions for 15 easy art projects suitable for any health care setting or at home.

P12.4. Intellectual disability and dementia. Communication strategies to enable inclusion in research: the handbag approach

Karen Watchman

The incidence of dementia in some people with Down’s syndrome is known to be high. It can occur at a much younger age and has a quicker progression rate. This may result in a person with Down’s syndrome developing dementia in their thirties or forties. People with other forms of intellectual disability (ID) may develop Alzheimer’s disease, or another type of dementia, at a slightly younger age. This issue has reached greater prominence as people with Down’s syndrome and other forms of ID are now living for much longer. This longer life expectancy brings with it an increased awareness of the incidence of dementia but not of how it is experienced by people with ID and dementia from their own perspective. This is usually due to pre existing difficulties in communication and cognitive impairment in people with ID and the perceptions of carers and researchers over a person’s ability to take part in research. This differs in the general population where we regularly hear the voice of people with dementia, particularly in the early stages. This may be taking part in a research project that supports their inclusion or self advocating. The same profile is not given to people with ID and dementia.

My PhD topic questioned why people with ID and dementia are rarely included in research. The qualitative, phenomenological research adapted a narrative case study approach. I spent over 100 hours with three people who had Down’s syndrome and dementia over a three year period. We met in their own accommodation where I observed care, witnessed interactions and developed different communication methods with each individual as dementia progressed. I will focus on a small part of the larger research; the communication methods I used with each person to enable their inclusion in research and why each was successful. This took the form of:

1) Verbal - enabling narratives. This was different to the approach taken by carers who used written signs and photographs even though this often portrayed inaccurate information resulting in increased loneliness and isolation.

2) Non verbal - using touch, senses and items that were meaningful to the person, including handbags. This differed from carers whose reliance on verbal communication and lack of an individual approach led to the participant withdrawing from communication.

3) Non verbal - pictorial, including a process to determine the most effective type of pictures for the individual.

Findings showed that inclusion in research is not only possible for people with ID and dementia, it is essential. This is to ensure that we hear what people want and need rather than relying on carer’s perceptions or making assumptions about what we think is in a person’s best interest.

The wider PhD research project contributes to new knowledge in this field by filling the gap in our understanding of how people with ID experience dementia. It calls for changes to the way in which we carry out research with groups who have ID and cognitive impairment including adapting research methodology. The examples given here emphasise the need for an individual approach to be taken to communication methods to enable inclusion. The relevance goes further than for people with ID, it is also appropriate to support the inclusion of people in the general population who are in the later stages of dementia and become increasingly non verbal.

P12.5. Communicating effectively with people with dementia

Jane Tooke, Shanta Calcutta, Katie Daniel, Linda Sheldrake

Introduction: Involving people with dementia can present specific practical and ethical challenges. In that dementia presents difficulties for people in terms of deteriorating cognitive capacity and communication skills as well as the emotional stress linked with such losses. This paper explores some of the ways to support effective dialogue with people with dementia. It details some of the findings from a pilot study that engaged Alzheimer’s Society service users in improving the tools and policies used to ensure quality services.

Method: This pilot involved the organisation and facilitation of two local service user panels, one based in an urban and one in a semi rural area. Each panel engaged a small group of between six and eight people with dementia for a six month period facilitated by a staff member. A flexible and open approach was taken to ensure dialogue between people with dementia and Society staff. The panels reviewed service evaluation tools, such as consent forms and questionnaires, and commented on the development of relevant organisational policies e.g. Dignity. Open unstructured observations were undertaken at each group to record rich data; including atmosphere and non-verbal cues.

Results: Attendees expressed a preference of communicating with staff in an informal manner. Panel members were responsive to the ‘easy read’ format which is characterized by large font size, wide margins and spacing, simplified sentence structure and supporting imagery which provides a visual aid to comprehension. However, some members felt oversimplification could be patronising. At times participants found it difficult to understand the context and concepts on which they were being consulted, particularly when looking at questionnaires. Panel members often understood some words more literally than intended; for instance the word ‘services’ was thought to be related to religion. Participants were more engaged when discussing complex ideas or personal issues as scenarios rather than discussing their own situation. The facilitator also felt the use of scenarios provided a more reliable response.

Discussion: The findings of this study suggest simple techniques which can facilitate a shared understanding of even complex issues when discussed with people with dementia. Partnership working with people with dementia is most successful when complex ideas are communicated into a non-personal informal context and professionals understand the limitations of using professional language or jargon which can cause confusion.

 

 
 

Last Updated: Wednesday 26 October 2011

 

 
  • Acknowledgements

    Alzheimer Europe gratefully acknowledges the support of the following sponsors: Fondation Médéric Alzheimer, Fondation Roi Baudouin, Janssen, Lilly, Pfizer, Sanofi and SCA Global Hygiene
  • Fondation Médéric Alzheimer
  • King Baudouin Foundation
  • SCA Global Hygiene
 
 

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