Category Archives: Research

Dementia and Mealtimes

meals

One of the issues which has emerged from  previous Talking Mats and dementia projects is that many people with dementia experience difficulties with mealtimes and that it can affect people at any stage of dementia.
Mealtimes involve two of our most fundamental human needs, the basic physiological requirements for food and drink and interpersonal involvement. Mealtimes are particularly important for people with dementia as they may develop difficulties both with eating as a source of nourishment and with the social aspects of mealtimes.

In 2015 Joan Murphy and James McKillop carried out a project, funded by the Miss EC Hendry Charitable Trust, to gather information from the first-hand experience of people with dementia about their views about mealtimes. We ran three focus groups and used the Talking Mats Eating and Drinking Resource to allow participants to reflect, express and share their views.

Findings: 
The people who took part in this study felt that there were significant changes in their eating and drinking since their diagnosis of dementia. For some, their experience of mealtimes had changed and several said that they now skip breakfast and sometimes lunch. For some this seemed to be related to forgetting to eat and drink, for others it related to changes in taste whereas for others these meals seemed to be simply less important. Forgetting to eat was particularly noted by the participants with dementia and confirmed by their spouses.
The social aspect of eating and drinking also changed for many of the participants and, given the importance of social engagement for quality of life it is important to be aware of the effects of changes in eating and drinking on mealtime dynamics. For some it may be that they are now less interested in the social aspect of eating with others at home. Others found it hard to eat out because of distractions and lack of familiarity while some felt embarrassed about eating out in front of strangers. Others still really enjoyed going out for meals but added that they preferred to go somewhere well-known to them. The shared mealtime may be a particularly crucial opportunity for social engagement as it plays a central role in our daily lives. Social relationships are central for not only enhancing quality of life, but also for preventing ill health and decreasing mortality (Maher, 2013).
Almost all the participants talked about how their taste had changed both for food and drink which in turn affected their appetite. Some families had overcome the problem of lack of taste by going for more strongly flavoured food. When asked specifically about drinking, thirst was noted as a significant change since diagnosis
Their feelings about the texture of food did not appear to have changed significantly and was simply a matter of preference.

Three additional health issues which the participants felt were connected with eating and drinking were poorer energy levels than before their diagnosis, reduction in ability to concentrate and changes in sleep patterns.

For a copy of the full report please click here Dementia and Mealtimes – final report 2015

Transition from children to adult health services

inpatient

The transition from children’s to adult health services for young people with exceptional needs and their families is complex, multifaceted and fraught with concerns and fears. CEN Scotland commissioned Talking Mats to carry out a study to collect the views of 10 young people and their families who are experiencing this transition in Scotland.

The families in the project have given us clear views about their problems and fears and also some thoughtful suggestions for what could be made better. It is often in making small changes that significant improvement can occur. These suggestions include:

  • Courses for parents on transition
  • More specialist nurses e.g. transition nurses, acute liaison learning disability nurses
  • Start preparing early – at least 2 years
  • Transition wards for young people
  • Training for doctors and nurses about complex needs
  • More respite, not less
  • Emotional support for parents
  • Longer appointment times
  • A hotline to GPs

This study captures the complexity and variation of transition health services for young people with complex health needs from the perspective of both the young person and their parents. Despite the problems and fears we also saw evidence of good practice and suggestions, such as those above, which give hope for the way ahead.

To read the full report, including a moving case study, and direct comments from families, please click here CEN Transition Report

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Talking Mats in a rehabilitation setting: a story from South Africa

lauren

Thanks to Lauren Pettit for this thought provoking blog about using Talking Mats in a rehabilitation setting in South Africa to compare goals of adults with aphasia, their Speech and Language Therapists and their significant others.
I am a Speech-Language Therapist in Johannesburg, South Africa and I work in neuro rehabilitation for people who have had a stroke or head injury. Over the past few years, I have been inspired to learn more about implementing communication modes to assist people to participate effectively in various communication interactions.
Talking Mats™ is such a wonderful tool that enables people to communicate so many things, from their needs and desires, to engaging in higher level conversations. I have seen the benefits of this tool used in a rehabilitative setting. I recently completed my dissertation with the Centre for Augmentative and Alternative Communication (CAAC) at the University of Pretoria, in South Africa.
The study included adults with aphasia who were still attending therapy at least 6 months after their stroke and were working on activities and tasks in various therapies, for example: Occupational Therapy, Physiotherapy, Speech-Language Therapy, therapies. I wanted to understand what was important for them to work on in rehabilitation to improve in various areas of life. Some of the adults with aphasia had very little or no speech, others had difficulty expressing themselves and finding the appropriate words to use in a phrase or sentence. Talking Mats™ was therefore used to assist them to rate important life areas. The life areas (activities and participation domains) were identified by the International Classification of Functioning, Health and Disability (ICF). This classification system was created by the World Health Organisation (WHO) and may guide therapy assessment and management. The areas were depicted as symbols with a supplemented written word on each card. These nine cards were: Domestic Life, Relationships, Work and Education, Leisure or Spare time, Self Care, Learning and Thinking, Coping, Communication, and Mobility. The adults with aphasia were asked what was important to them to work on in rehabilitation. The adult with aphasia could place the card under Yes, Maybe or No on the velcro mat and provide a comment if he/she wished or was able to. The Speech-Language Therapists who worked with the adults with aphasia and their significant others (a family member/friend or carer, who knew the person well) were also included in the study. They were asked to identify which areas they thought were important for the adult with aphasia to still work on in therapy.

(Click on graphs to see clearly)

lauren

It was very interesting to see varied opinions in the results. Six of the areas received similar ratings from all the participants and Communication was highlighted as an important area to work on by all. There were statistical differences found for the following domains: Work and Education, Leisure or spare time and Self Care. The adults with aphasia wanted to work on Leisure or Spare time and Self Care, however, Work and Education was not important to them to work on in rehabilitation, whereas the Speech-Language Therapists rated Work and Education as important for the adults with aphasia to work on. Significant others did not rate these domains as important.
This study gave a glimpse into how some rehabilitation teams are currently communicating and working together and that very often, the people who have difficulties expressing themselves are perhaps not always given the time and space to understand the therapy plan and identify and communicate their individual therapy needs. This needs to be explored further. Talking Mats™ provided a structure and gave the adults with aphasia a ‘voice’ and the opportunity to engage in this complex communicative interaction. I am in the process of sharing the results from the study with the participants. I have encouraged them to sit together in their teams and identify areas that could currently be focussed on in their therapy. Many participants were eager to discuss the results after the interviews were conducted and were interested in the concept of prioritising their rehabilitation needs. I hope they see their participation in this study as the opportunity to further engage in their rehabilitation needs and that it gives them the confidence to participate more fully in many other areas of their lives that they identified as important.
I would so appreciate your thoughts and input. Please respond to Lauren lolpettit@gmail.com

The Dementia Communication Difficulties Scale


During a research project funded by the Joseph Rowntree Foundation in 2007, Joan Murphy and Cindy Gray developed the Dementia Communication Difficulties Scale (DCDS) to help identify the communication difficulties that a person with dementia might be having and therefore help carers and staff to understand these difficulties and therefore support the person with dementia. The scale comprises 13 statements that are based on existing definitions of the communication problems commonly experienced by people as dementia progresses (Kempler, 1995; Health Education Board for Scotland, 1996):

In early stage dementia, the person

  • may have difficulty coming up with words
  • may tend to digress and repeat themselves.

In moderate stage dementia, the person

  • may find it hard to understand what is said to them, particularly when being given complex information
  • may have difficulty maintaining a conversation topic without losing track
  • may use semantically empty words (e.g. thing, stuff) in place of content words
  • may be difficult to understand.

In late stage dementia, the person

  • may make little sense
  • may not be able to understand what is said to them, even when simple language is used
  • may often repeat what other people have said to them
  • may communicate mainly in non-verbal ways

The DCDS requires a third party who knows the person with dementia well (a paid carer or family member) to assess various aspects of their communication on a 5-option scale. People are asked to circle the option that most closely describes the person in question.

Each DCDS option is assigned a score: for example ‘Never’ = 0, ‘Sometimes’ = 1, ‘Often’ = 2, ‘Always’ or ‘Says too little for me to judge’ = 3. A person’s DCDS rating is obtained by totalling their scores for all 13 statements. DCDS ratings can therefore range from 0-39, with a higher rating indicating a greater degree of communication difficulty.
The following stages of dementia group definitions were produced:
• DCDS ratings between 0 and 10.5 = early stage
• DCDS ratings between 11 and 19.5 = moderate stage
• DCDS rating between 20 and 39= late stage.

The Dementia Communication Difficulties Scale is brief, straightforward and quick to complete, and may therefore provide a highly useful tool for the care staff, clinicians and practitioners involved in assessing the needs of people with dementia.

If you would like a copy of the scale please click here: Dementia Communication Difficulties Scale

References:

Kempler, D. (1995). Language Changes in Dementia of the Alzheimer Type. In R. Lubinski (Ed.), Dementia and Communication, San Diego: Singular Publishing Group.

Health Education Board for Scotland (1996). Coping with Dementia: A Handbook for Carers. HEBS.

What do we mean by communication effectiveness?

effective communication

The final part of my keynote talk at the AAC Conference in Helsinki last month focused on what we mean by communication effectiveness.
It is important to be able to determine the effectiveness / success of an interaction between two people, whether they are politicians, parent and child, husband and wife….. people using AAC systems or people using their own speech.
When I carried out a literature search of peer reviewed journals for my PhD in 2009 I could find no clear definition of communication effectiveness. Some people thought that effectiveness was synonymous with ‘word intelligibility’ or ‘correct syntax’. Others defined effectiveness in terms of the number of words produced on an AAC device. One publication even suggested that effectiveness was demonstrated by someone taking responsibility for charging their AAC device!
The main focus of all the papers I found, which mentioned communication effectiveness, was on needs and wants and only 3 papers cited social closeness as important (click here to read previous blog).
However, some publications did give useful pointers. Light (1988) emphasised that effective communication depends on 2 way interaction and that the partner is a major factor in the success or failure of communicative interactions. Lund (2006) described adequacy, relevance, promptness and communication sharing as key indicators. Ho et al (2005) highlighted satisfaction – partners’ feeling of how well they communicated during the conversation. Locke (1998) stressed that determining the success of any communication is a subjective undertaking as ‘Communication is not a mathematical formula of phonemes, morphemes and syntax, but rather includes casual conversation such as gossip’.

The Talking Mats team has tried to capture what we believe are the essential factors in determining communication effectiveness. We have produced a simple tool – the Effectiveness Framework of Functional Communication (EFFC) which can be used to chart key factors in an interaction on a 5 point scale and give an overall indication of whether the conversation is effective or not.

We have used the EFFC in several of our research projects and show participants how to use it during our training workshops. In Finland I tried it out with the audience of 200 AAC professionals using 3 video examples of different AAC conversations. The resulting scores were amazingly in agreement suggesting that this is a reliable tool.

For a free download please click here  EFFC 2014

We would welcome any comments or questions.