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Communicating with people living with dementia who are nonverbal: The creation of Adaptive Interaction

Affiliations.

  • 1 School of Psychology and Neuroscience, University of St Andrews, St. Andrews, United Kingdom.
  • 2 ScHARR, University of Sheffield, Sheffield, United Kingdom.
  • 3 Research and Academics, Ontario Shores Centre for Mental Health Sciences, Whitby, Canada.
  • PMID: 28763445
  • PMCID: PMC5538738
  • DOI: 10.1371/journal.pone.0180395

Loss of verbal language production makes people with dementia appear unreachable. We previously presented a case study applying nonverbal communication techniques with a lady with dementia who could no longer speak, which we termed Adaptive Interaction. The current small-n study examines the applicability of Adaptive Interaction as a general tool for uncovering the communication repertoires of non-verbal individuals living with dementia. Communicative responses of 30 interaction sessions were coded and analysed in two conditions: Standard (Baseline) and Adaptive Interaction (Intervention). All participants retained the ability to interact plus a unique communication repertoire comprising a variety of nonverbal components, spanning eye gaze, emotion expression, and movement. In comparison to Baseline sessions, Intervention sessions were characterised by more smiling, looking at ME and imitation behaviour from the people with dementia. These findings allude to the potential of Adaptive Interaction as the basis for interacting with people living with dementia who can no longer speak.

  • Aged, 80 and over
  • Communication Aids for Disabled
  • Communication*
  • Dementia / physiopathology*
  • Dementia / psychology*
  • Facial Expression
  • Nonverbal Communication / psychology*
  • Verbal Behavior

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Maggi-case-study

Maggi Case study: The 2015 Maggi crisis

If you’re reading this, we’re sure in your lifetime you would’ve had a pleasure of sparing those controversial two minutes to cook a Maggi and another few to eat it. We’ll never know how those advertisements manage to cook their Maggi in two minutes. Anyway, we’re not here to question the two-minute proposition of our most loved Noodle brand and rather to discuss a controversy that happened in 2015. Which has become the famous Maggi case study, a case study that teaches you how to emotionally connect well with your consumer.

Before you learn about the controversy – here’s a quick intro to the brand: Maggi was introduced in India by a Global FMCG company called Nestlé in 1982 and over this time, until 2015 the brand captured 60% of the noodle market in India . Maggi was in every nook of the country, this was because of how affordable, portable and instant these noodles are.

How to become a Product Manager?

However, as all good things come to an end. Maggi faced a temporary ban in 2015, here’s the entire story for you (This post has a lot of videos, we’d recommend you at least watch the last few ones).

FSSAI is not very well known for surprise food inspections, however, April 2015 was different.  FSSAI conducted a surprise Inspection for testing any possible food adulteration issue on Maggi’s manufacturing unit in the Barabanki district of Uttar Pradesh. The tested samples were sent to FSSAI labs and reports of higher than permissible levels of lead and the presence of Monosodium Glutamate(MSG) was released, these substances are banned to use for consumable products.

Naturally, Nestlé India Limited (NIL) appealed against the report and said MSG was a result of natural processes (it’s also mentioned on their website) and requested re-inspection of the products in the unit. Following this appeal, samples were sent to a government-authorized lab in Kolkata which only supported the findings of state FSSAI laboratory.

These reports led to several states banning sale and use of Maggi, obviously because of the health concerns. And unfortunately, on 9 th June, 2015, FSSAI (Food Safety and Standards Authority of India) i.e. the food regulator in India put a nationwide ban on sale on Maggi noodles for 5 months. Owing to this nationwide ban Nestlé recalled all the Maggi products from all the outlets and emotionally promised that they’ll be back in market as soon as the lab reports were clear. Almost 38,000 tonnes of Maggi was destroyed by Nestlé which worth Rs.320 crore.

Impacts of the ban:

The then brand Ambassadors of Maggi – Amitabh Bachchan, Preity Zinta, and Madhuri Dixit were slammed for endorsing the brand. Criminal cases were filed against them – yep, no joke. See here . Competitors: Top Ramen, Yippie, Patanjali Noodles started marketing their noodles healthy – we guess fats were not really unhealthy back then. Well, we can’t really blame them, 60% of the Market was now open for them to capture.

Things went south when the Government filed a case against Nestlé and charged Rs.640 crore for damages – Yikes! Nestlé posted its first loss in 17 years after the Maggi was banned. But worse, the consumers were now losing their trust in Maggi. Yep, FSSAI and the Government is all serious when it comes to your health – but the story wasn’t over yet.

And, the Return:

Surprisingly even when the Maggi was banned, it really wasn’t ready to give up on its consumers. The brand had an active social media page through which it stayed connected to its audience by the way of various social media posts and advertisements. Even on their Facebook page , they kept posting that their (consumers’) favorite food will be safe to consume very soon. There was a loyal set of customers that believed in Maggi and would occasionally post on their social media about how much they wanted their favorite noodles to return. Responding to them Maggi ran a campaign showcasing how they were missing their customers as well. They also created helpline numbers and FAQ pages for customers’ related queries.

In August 2015, the ban was lifted by the Bombay High court on the condition that it will be relaunched only after the reports are cleared by the FSSAI. And, in November 2015, when Nestlé got a nod from the food regulatory authority of India (FSSAI), it launched its WELCOME BACK campaign – an emotional campaign that won the heart of its consumers. They even launched 15 new variations of Maggi. They teamed up with e-commerce giants and started selling welcome kits which contained 12 Maggi packs. The response was great, the then e-commerce company Snapdeal sold 60,000 Maggi kits in just 5 minutes after the launch.

Learning from the Maggi case study:

All in all, this teaches at all that matters in end is the emotional connection you have with your customers. Unfortunately for Maggi’s competitors, they really did not achieve a lot during the ban. Maggi captured over 60% again in the next two years to come. And, this was the story of the crisis our favorite noodles faced – we hoped we killed it. You can write to us if you’d like any improvements.

Read more here . Stay safe, have a good one! Take a look at our page here for more case studies .

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4 thoughts on “ maggi case study: the 2015 maggi crisis ”.

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Very good and informative site thankyou for collecting valuable information…

I was really curious to know about what happened back in 2015, after my friend told me that Maggi was banned, the site helped me find the entire information about it.

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Reenacted Case Scenarios for Undergraduate Healthcare Students to Illustrate Person-Centered Care in Dementia

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2010, Educational Gerontology

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Dementia is an international health priority and healthcare students need to be prepared to work with people living with dementia. There is a paucity of the literature describing appropriate educational interventions for pre-qualifying healthcare students and even fewer that are evaluated. Based on available evidence, an education program was developed aiming to increase students' knowledge and confidence in working with people with dementia (PWD). An introductory program (IP) of classroom sessions and workshops was followed by a volunteer care home experience (CHE) (4 × 3 h). Piloted with physiotherapy (IP n = 55; CHE n = 6) and nursing students (IP n = 20; CHE n = 7), using a survey design, knowledge, and perceived confidence for working with PWD were measured at four time points; baseline, after the IP, after the CHE, and six months later. The data were analyzed using paired t-tests or non-parametric equivalents. Knowledge scores increased after the IP (Time 1-2, p < 0.001...

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Background and objectives There is a need to ensure that the future healthcare workforce has the necessary knowledge and skills to deliver high quality compassionate care to the increasing number of people with dementia. Our programme has been set up to address this challenge. In the programme, undergraduate healthcare students (nursing, medical and paramedic) visit a family (person with dementia and their carer) in pairs over a 2-year period. This qualitative study sought to understand the student experience of the programme. Methods Participants were undergraduate healthcare students who were undertaking our programme at two universities. We sampled for variation in the student participants in order to generate a framework for understanding the student experience of the programme. Students were invited to take part in the qualitative study, and written consent was obtained. Interviews and focus group transcripts were analysed using thematic analysis. Results Thirty-nine (nursing, ...

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A case study of Adaptive Interaction: A new approach to communication with people with advanced dementia

  • School of Psychology and Neuroscience
  • Institute of Behavioural and Neural Sciences

Research output : Contribution to specialist publication › Article

T1 - A case study of Adaptive Interaction: A new approach to communication with people with advanced dementia

AU - Ellis, Maggie P

AU - Astell, Arlene Jean

M3 - Article

JO - PSIGE Newsletter

JF - PSIGE Newsletter

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Open Access

Peer-reviewed

Research Article

Communicating with people living with dementia who are nonverbal: The creation of Adaptive Interaction

* E-mail: [email protected]

Affiliation School of Psychology and Neuroscience, University of St Andrews, St. Andrews, United Kingdom

Affiliations ScHARR, University of Sheffield, Sheffield, United Kingdom, Research and Academics, Ontario Shores Centre for Mental Health Sciences, Whitby, Canada

  • Maggie Ellis, 
  • Arlene Astell

PLOS

  • Published: August 1, 2017
  • https://doi.org/10.1371/journal.pone.0180395
  • Reader Comments

23 Apr 2018: Ellis M, Astell A (2018) Correction: Communicating with people living with dementia who are nonverbal: The creation of Adaptive Interaction. PLOS ONE 13(4): e0196489. https://doi.org/10.1371/journal.pone.0196489 View correction

Table 1

Loss of verbal language production makes people with dementia appear unreachable. We previously presented a case study applying nonverbal communication techniques with a lady with dementia who could no longer speak, which we termed Adaptive Interaction. The current small-n study examines the applicability of Adaptive Interaction as a general tool for uncovering the communication repertoires of non-verbal individuals living with dementia. Communicative responses of 30 interaction sessions were coded and analysed in two conditions: Standard (Baseline) and Adaptive Interaction (Intervention). All participants retained the ability to interact plus a unique communication repertoire comprising a variety of nonverbal components, spanning eye gaze, emotion expression, and movement. In comparison to Baseline sessions, Intervention sessions were characterised by more smiling, looking at ME and imitation behaviour from the people with dementia. These findings allude to the potential of Adaptive Interaction as the basis for interacting with people living with dementia who can no longer speak.

Citation: Ellis M, Astell A (2017) Communicating with people living with dementia who are nonverbal: The creation of Adaptive Interaction. PLoS ONE 12(8): e0180395. https://doi.org/10.1371/journal.pone.0180395

Editor: Linda J. Garcia, University of Ottawa, CANADA

Received: July 20, 2016; Accepted: June 14, 2017; Published: August 1, 2017

Copyright: © 2017 Ellis, Astell. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: Data are available from figshare (DOI: 10.6084/m9.figshare.5161384 ). Data are from the Adaptive Interaction study whose authors may be contacted at the University of St Andrews: [email protected] .

Funding: The authors received no specific funding for this work.

Competing interests: The authors have declared that no competing interests exist.

Introduction

Dementia is an umbrella term used to describe a collection of diseases characterised by progressive loss of cognitive functions and other abilities. Dementia has a neurological basis that is typically untreatable and irreversible [ 1 ], and the greatest risk factor for developing it is age [ 1 ]. People who are living with dementia typically experience gradual but insidious decline in a wide range of abilities over a number of years [ 2 ], which may ultimately result in them relying on family or formal caregivers to meet all of their needs [ 3 ]. As the illness progresses to the later stages, care is often provided in nursing homes or other institutions. As such, staff members need to form relationships and get to know people who already have significant communication difficulties by the time they meet [ 4 ].

As dementia progresses conversation becomes increasingly challenging and towards the later stages, verbal language production may disappear altogether [ 5 ]. People living with dementia may make nonverbal attempts to communicate with caregivers but these are typically ignored [ 6 ], misinterpreted as ‘challenging’ [ 7 ] or judged incomprehensible [ 8 ]. The communicative difficulties experienced by people with dementia are not only misinterpreted as signifying that they have nothing to contribute, but that they have actually lost the desire to participate in the social world [ 9 ]. This perception manifests in low levels of reported social activity by people with dementia in residential care. For example, Bowie and Mountain (1993) [ 10 ] observed 110 people with dementia living in a long stay hospital ward, who they found spent only 5.5% of their day involved in social engagement but 68% in neutral, i.e. no activity. Furthermore, the authors noted that the majority of social engagement occurred during caregivers’ pursuance of basic activities of daily living [ 10 ]. In other words, people with dementia were only given the opportunity to engage in social interactions when they were being helped to eat or assisted with personal care. Consequently, individuals with advanced dementia often find themselves excluded from the social world and negated as social agents [ 11 ], [ 6 ].

A lack of social interaction not only leads people with dementia to withdraw from social life [ 6 ], it also has a negative impact on caregivers [ 12 ]. This may reflect the tendency of caregivers of people with dementia to view verbal language production as an indicator of ‘emotional connection’ [ 13 ], making those without verbal language production appear ‘unreachable’. Thus when faced with someone who has lost the ability to speak, caregivers often withdraw from those they care for. This detachment may be due to discomfort on the part of caregivers who distance themselves as a method of coping with the demands of the situation [ 14 ]. Several studies have reported a relationship between poor attitudes towards people with dementia and accounts of high ‘burnout’ in care staff [ 15 ], [ 16 ], [ 17 ], [ 18 ]. A lack of motivation and education among staff can lead to reduced levels of staff-resident interactions as staff feel unable and/or unsupported to communicate with people with dementia [ 19 ], [ 20 ]. As such, finding alternative methods of communication in the care environment has the potential to improve not only the quality of life of people with advanced dementia, but also the job satisfaction of care staff [ 21 ]. The challenge is therefore to provide caregivers of people living with dementia who can no longer speak, with the means to keep interacting and communicating.

We have previously demonstrated that using an approach based around the nonverbal aspects of communication, i.e. sounds, movements, facial expressions, etc.—has the potential to keep people with advanced dementia in the social world [ 22 ], [ 23 ]. In this single case study we explored the utility of Intensive Interaction [ 24 ], [ 25 ] for communicating with Edie, an 83-year old lady with very advanced dementia, who was nonverbal and spent most of her days in bed alone in her room. Intensive Interaction is an approach developed initially to promote communication with people with severe and profound learning disabilities. It is based on the fundamentals of communication that typically accompany language acquisition in early life, including eye gaze, emotional expression and movements. The focus of Intensive Interaction is on learning the communicative repertoire of an individual who is nonverbal through observation and imitation. These behaviours are thought to represent ‘self-talk’ on the part of individuals with severe and profound learning disabilities that become the basis of an interaction when mirrored by a communication partner. For example, the caregiver might copy a sound or action made by the nonverbal person, such as tapping the table. Through attending to the other person’s behaviour and responding contingently, the caregiver is able to expand the interaction and support her partner to take a more active role in communication. By responding in ways that are familiar and meaningful to the person with severe communication difficulties, i.e. initially imitating and then developing them into a shared ‘language’, it is possible to build and sustain close relationships without verbal language production [ 26 ]. Interactions are developed on a day-to-day basis as interaction partners become increasingly attuned to each other and develop their shared language.

In our work with Edie, we found that applying the principles of Intensive Interaction uncovered her nonverbal ‘language’. This comprised a rich repertoire of sounds, including laughter, eye gaze, movements, and facial expressions [ 23 ]. In comparison to a Baseline interaction comprising closed questions of the type observed to be used by the caregivers in the nursing home where Edie lived, Intensive Interaction revealed Edie to be a responsive interaction partner, who was able to turn take and even take the lead. For example, Edie moved her head to the side of the bed where the investigator’s hand was resting. After several attempts she succeeded in just touching the investigator’s hand. When the investigator responded by bringing her own head down to gently touch Edie’s, Edie’s eyes flew wide open in a look of surprise. Her gaze then locked onto the investigator and they made a sound towards each other until they both start to laugh [ 23 ] (see S1 File . Example of Adaptive Interaction, for extended account of this interaction).

In order to respond to the communication needs of people with advanced dementia some modification of Intensive Interaction was required. Specifically, due to the severe memory problems experienced by people with dementia, Intensive Interaction with this population must remain ‘in the moment’ with no need for any parts of previous interactions to be remembered. Therefore, the communication partner must remain ‘adaptive’ to the changes in communication by the person with dementia and be willing to start afresh each time. As such, we named the approach Adaptive Interaction.

Building on the case study the aim of the present study was to investigate whether Adaptive Interaction can be used as a general tool for uncovering non speech-based communication repertoires in other people living with dementia who can no longer speak. To address this participants were video recorded in both Standard (Baseline) and Intervention (Adaptive Interaction) sessions and their behaviour in both coded using a scheme based on the fundamentals of communication developed in the case study.

The experimental design selected for the present study was an AB Multiple Baseline design in which the Baselines represent the multiple participants. This design consists of 2 phases (Baseline and Intervention) and Intervention points are randomly allocated to the participants. With 6 sessions for each participant, and a minimum of 2 sessions of each phase (i.e. 2 Baseline and 2 Intervention), there were 3 possible intervention points in each stage. Thus, participants were randomly assigned a starting point for the Intervention, occurring anywhere between session 3 and session 5, ensuring that there was a minimum of 2 sessions of baseline (A) and 2 sessions of Intervention (B).

The randomisation of Intervention starting points for each dyad ensures internal validity in the design by controlling for the effects of exposure to sessions and increased attention as possible explanations for changes in behaviour. By randomising the starting points for the Intervention, it is possible to determine whether exposure to the Intervention has an effect on the behaviour of participants. If exposure to sessions had an effect on behaviour, then it would be expected that there would be similar shifts in the behaviour of each participant, regardless of when the Intervention was introduced. If, however, there was little effect of exposure to the Intervention, then the most significant changes would be expected to take place at the point at which the Intervention had been introduced. Thus, noticeable shifts in behaviour at Intervention points are likely to indicate a main effect of Intervention. Table 1 shows the running order of Baseline and Intervention sessions for all participants.

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https://doi.org/10.1371/journal.pone.0180395.t001

Participants

Five participants (1 man) living with dementia ranging in age from 77–89 years (mean 82.6 years) took part in the study. The participants all lived in the same nursing home and had been resident for at least three years. The nursing home manager was asked to identify residents who had a diagnosis of dementia or probable Alzheimer’s disease and who had very little or no retained verbal language production. Only one of the five participants was independently mobile, one participant spent most of the day in the sitting room in her wheelchair and three were largely confined to bed for most of the day.

At 89 years old participant 1 (MB) was the eldest and the only participant who was independently mobile. She spent most of the day walking up and down the corridors but was helped to her room to relax at several points during the daytime. She also had the most verbal language production of all the participants (approximately 10 words) and was eager to communicate. Her daughter worked as a domestic assistant at the home and as such she was able to see her most days.

Participant 2 (MD) was 88 years and 8 months old and a wheelchair user. Although she had some verbal language production, most was composed of speech-like sounds that were difficult to decipher. She spent most of her time either in the day room or her own room and was willing to communicate when approached. Her daughter visited her regularly and she often took her mother to the day room in her wheelchair.

Participant 3 (BS) was 81 years and 7 months old and confined to bed. He was extremely fragile and had to be hoisted to and from bed and as such only went to the day room or to the dining room when taken by staff members. He was very quiet but made speech-like sounds and formed some words when encouraged. His brother and sister-in-law visited him from time to time but he had no regular visitors.

Participant 4 (EA) was 81 years old and although she had no discernible verbal language production she made a high-pitched sound that she used frequently, particularly when someone entered her room, where she spent large amounts of time in bed. Her daughter visited daily but she was not often taken to the day room as her sound allegedly “disturbed” the other residents. As such, EA only had the opportunity to engage with other people when someone came to her room.

Participant 5 (GB) was 77 years and 11 months old, was largely confined to bed but was taken to the dining room for meals in a padded chair. GB was extremely quiet and had no discernible verbal language production. She had very few visits from her family and spent most of her time alone in her room.

The ‘Direct Observation of Behaviour’ (DOB; Bowie and Mountain, 1993 [ 10 ]) is an observation tool developed to provide an assessment of the amount of time people with dementia in residential care settings are engaged in different types of behaviour during the day. The DOB comprises seven categories in which the description of behaviours in the first three categories (i.e. ‘self-care’, ‘social engagement’ and ‘reception of care’) use adjectives that suggest positive behaviours (i.e. ‘independent’, ‘purposeful’, ‘appropriately’, ‘actively’, ‘cared for’) that might be regarded as ‘acceptable’ or ‘typical’. Conversely, the remaining four categories (i.e. ‘motor activity’, ‘antisocial’, ‘inappropriate’, ‘neutral’) use more negative descriptors (i.e. ‘unnecessary’, ‘excessive’, ‘aimless’, ‘violate’, ‘cause distress’, ‘aggression’, ‘unacceptable’, ‘inappropriately’, ‘detached’), suggesting behaviours that may appear to be meaningless and/or that caregivers might find ‘challenging’.

A Sony Mini DV Video camera and tripod were used to video and audio record all sessions. Timing was provided by a mobile phone.

Ethics and consent.

Ethical approval for the study was received from the Scotland MREC Committee A, that deals with research proposals covered by Section 51 (3) (f) of the Adults with Incapacity (Scotland) Act 2001, i.e. research with people who are unable to give informed consent. In accordance with the AWI (Scotland) Act 2001, consent was sought from the nearest family member for the people with advanced dementia to participate. The approval included permission to video and audio record the interactions.

The protocol involved two stages:

Stage 1: Observation of daily activities/familiarisation.

The first stage involved two observers using the DOB [ 10 ] over two days to collect data on the activities and interaction patterns of the participants and to build up a picture of their daily routine. The observers were the first author (ME) and a trained senior honours student, neither of whom had any relation to the participants or to their care. Each participant was observed for one minute every ten minutes and a decision made about what behaviour they were performing using the behaviour categories defined by Bowie and Mountain [ 10 ] (1993; Fig 1 ). The categorisation of behaviours was agreed 100% by both observers. Participants were observed between 10am and 4pm on both days. This phase was crucial for taking field notes regarding the communication environment and providing insight into the opportunities available for, and occurrence of, social interactions.

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https://doi.org/10.1371/journal.pone.0180395.g001

Stage 2: Interaction

Stage 2 involved two conditions:

1. Standard Interaction (Baseline condition).

This was a verbal language production-based interaction where ME spoke to the person with advanced dementia using closed questions such as “Did you enjoy your meal?”, “Did you have a lie in this morning?” and “Have you seen the weather outside today?” (See S2 File . Baseline interaction questions, for full list). The rationale for using these types of questions is as follows. Firstly, as this was a ‘Baseline’ interaction it was important that ME used a form of communication that was closely related to that used by those who interacted most with each participant, i.e. professional caregivers. Observers noted in Stage 1 (Observation of daily activities/familiarisation) that these were the types of questions used to communicate with participants. The second reason for using closed questions, such as “Have you seen the weather outside today?” was that for those participants who understood the question but who were unable to answer using verbal language were given the opportunity to respond non-verbally (by nodding or shaking their heads). By comparison, open questions involving lexical search, e.g. “How do you think the weather looks outside today?” do not provide participants with the opportunity to respond non-verbally if they understand the question but verbal language is not accessible to them. The use of closed questions is widely recommended as a method of simplifying language for individuals with dementia who have problems with open questions.

2. Adaptive Interaction (Intervention condition).

This was a nonverbal interaction whereby ME attempted to communicate with the participants using their own sound-based and non-verbal behaviours as the basis of interaction [ 26 ] (See S1 File . Example of Adaptive Interaction 1, for further information).

Both Standard and Intervention conditions were conducted by the ME (Author 1) in order to provide consistency throughout the sessions.

The closest family members of the participants were contacted via the nursing home and provided with all information on the study. The family members were asked to give consent for ME to approach their relative with advanced dementia. Family caregivers were asked to give proxy consent for their relatives to take part and were also invited to be present when the study took place. Where this was not possible, members of care staff were invited to observe the sessions to facilitate the recognition of any signs of distress in the individual participants, which would lead to immediate cessation of the sessions. In the event, neither family nor care staff elected to observe any of the sessions. As such, all participants engaged with ME in the absence of any other people.

A timetable of sessions was agreed with the nursing home manager to minimise interruption to the participants’ daily routines. As such, sessions were organised to take place between 10 am and 12.30 pm (between breakfast and lunchtime) and 1.30 pm and 4 pm (between lunch and dinnertime). Each session was planned to last for a maximum of ten minutes. Table 1 illustrates a timetable of sessions for each participant. All sessions were video recorded and participants were filmed interacting with ME in a total of six sessions comprising a mixture of both Baseline and Intervention. No sessions were terminated through participants presenting visible signs of distress. Seven sessions were interrupted for the following reasons: participant fell asleep during session (n = 5); participant unwell (n = 1); participant stopped interacting (n = 1).

Coding of communicative behaviours.

Three minutes from the beginning of each clip was selected for coding so as to eliminate the majority of the loss of data from sessions that were interrupted. Microanalytic coding captures intricate detail of behaviours second-by-second. Coding categories were developed from those identified in the case study [ 23 ] and the observation/familiarisation phase of the current study. These were supplemented by examination of categories employed in studies of Intensive Interaction in individuals with learning disabilities [ 27 ], [ 28 ], [ 29 ]. This yielded the following six coding categories: 1. Eye gaze; 2. Facial expression; 3. Vocalisations; 4. Gesture; 5. Physical contact; and 6. Imitation. Table 2 shows the main behavioural coding categories and subvariables.

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https://doi.org/10.1371/journal.pone.0180395.t002

The Observer TM Pro version 5 was used to conduct the behavioural coding [ 30 ].

Inter-rater reliability.

ME coded 100% of the three-minute segments of the 30 sessions (6 per participant) for verbal and non-verbal communicative behaviours. Four sessions (13.3% of the total amount of sessions) were selected at random and were coded by a second rater (trained senior honours student). It was not possible for either rater to be blind to the study and/or the participants as the differences between the conditions and participants were apparent when conducting behavioural coding of video and audio output. Kappa values were calculated for 4 sessions coded by both raters. Landis and Koch (1977) [ 31 ] suggested that a kappa value of equal to or less than 0.20 indicates slight agreement; 0.21–0.40, fair agreement; 0.41–0.60, moderate agreement; 0.61–0.80, substantial agreement; and 0.81–1.00, almost perfect agreement. The Cohen’s kappa values were calculated as follows: session 1 (Participant 4/Baseline): 0.91; session 2 (Participant 1/Intervention): 0.58; session 3 (Participant 5/Intervention): 0.80; session 4: (Participant 3/Baseline): 0.59, indicating that the interrater reliability ranged from moderate to almost perfect agreement.

Data analysis

Direct observation of behaviour [ 10 ]..

The percentage of time that each participant was engaged in each of the seven categories of behaviour on the DOB [ 10 ] was calculated. These data were pooled to provide the total percentages of time all five participants cumulatively spent engaged in each type of behaviour.

Individual communication repertoires.

The data for each participant were examined for the presence of communicative behaviours that could be said to comprise that individual’s communication repertoire. This was based on the behavioural coding analysis described above ( Table 2 ).

Group comparison.

A second stage of analysis involved pooling the data from the five participants across the 15 Baseline and 15 Intervention sessions to compare the frequency and/or duration of occurrence of behaviours in the six coding categories ( Table 2 ). This was to examine the effect of the Intervention on the occurrence of communicative behaviour by people living with dementia who can no longer speak.

The data are presented in three parts: 1. Direct Observation of Behaviour [ 10 ] for the five participants, 2. Individual communication repertoires, and 3. Group comparisons.

1. Direct observation of behaviour [ 10 ]

The observation data (100% agreement between observers) revealed that over two thirds of the participants’ time (68.6%) was spent in neutral activity, that is ‘detached from the environment’, typically sleeping or doing nothing. The total percentage of time coded as the other negative behaviour categories (‘motor activity’, ‘antisocial’ and ‘inappropriate’) was extremely low at 4.2% ( Fig 1 ). Fig 1 shows the percentages of each behavioural category for all participants recorded over two days.

2. Individual communication repertoires

Each individual’s communicative vocabulary could be coded under broad categories, such as eye gaze, movements, vocalisations, etc. however, as one might expect, there was some variation of behaviours within those categories. As such, a coding scheme was created for each participant defining his/her individual communicative behaviours. Table 3 lists the communicative behaviours that appear for each individual. The frequency of these behaviours was logged across all of the sessions. Table 3 illustrates the sub-behaviours under each main category engaged in by each participant.

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https://doi.org/10.1371/journal.pone.0180395.t003

As seen in Table 3 . participant 1 engaged in 30 communicative behaviours in total (3/10% eye gaze; 9/30% sound; 13/43.3% movement; 5/16.7% facial expression); Participant 2 engaged in 13 communicative behaviours in total (1/7.1% eye gaze; 2/15.4% sound; 7/53.8% movement; 3/23% facial expression); Participant 3 engaged in 9 communicative behaviours (1/11.1% eye gaze; 4/44.4% sound; 2/22.2% movement; 2/22.2% facial expression); Participant 4 engaged in 10 communicative behaviours (2/20% eye gaze; 2/20% sound; 4/40% movement; 2/20% facial expression); Participant 5 engaged in 10 communicative behaviours (3/30% eye gaze; 3/30% sound; 3/30% movement; 1/10% facial expression).

It is clear ( Table 3 ) that there was great variation in the types of behaviours for each participant within each of the behavioural categories. Indeed, the only behaviour that every participant engaged in was ‘looking at ME’. ‘Speech sounds’ and ‘smiling’ were engaged in by 4 of the participants. Three participants ‘closed their eyes’, ‘coughed’, ‘laughed’ or ‘pointed’. Two participants engaged in ‘nodding’, ‘shaking head’ and ‘frowning’. All other behaviours although categorised under the broader categories of ‘eye gaze’, ‘sound’, ‘movement’ and ‘facial expression’ were specific to each individual. For example, participant 1’s ‘leaning forward to camera’, participant 2’s ‘drawing attention’, participant 3’s ‘eyebrow flash’, participant 4’s ‘high pitched sound’ and participant 5’s ‘looking at/playing with hands’.

Tables 4 – 8 illustrate examples of each of the participant’s communicative behaviours and how many times they occurred during each minute and in total during randomly selected, 10 minute Baseline and Intervention sessions (1 of each).

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https://doi.org/10.1371/journal.pone.0180395.t004

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https://doi.org/10.1371/journal.pone.0180395.t005

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https://doi.org/10.1371/journal.pone.0180395.t006

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https://doi.org/10.1371/journal.pone.0180395.t007

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https://doi.org/10.1371/journal.pone.0180395.t008

As illustrated in Table 4 , participant 1 engaged in ‘leaning forward to the camera’ (3), ‘feeling her collar’ (1), ‘pointing’ (2), ‘clicking her tongue’ (18) and ‘laughing’ (4) in the Standard sessions but did not do so in the Intervention sessions. However, she engaged in ‘singing’ (11), ‘tutting’ (1), ‘rubbing her knees’ (3), ‘scratching her nose’ (3), ‘pointing’ (2), ‘moving her head from side to side’ (6) and ‘leaning into ME’ (1) during the Adaptive session but did not do so in the Standard session. Participant 1 ‘looked at ME’ over 3 times more often in the Baseline (35) than the Intervention (11) session. However, she also ‘closed her eyes’ twice as much in Baseline (30) than the Intervention (15) session and ‘looked at the camera’ almost twice as many times in the Baseline (27) than Intervention (14) session. The remaining findings saw participant 1 ‘blowing a kiss’ 3 times in Baseline and twice in Intervention session; ‘winking’ 5 times in Standard and 3 times in the Intervention sessions; ‘frowning’ once in Baseline and 4 times in Intervention and ‘smiling’ twice and ‘raising her eyebrows’ 3 times in both types of interaction.

As illustrated in Table 5 , participant 2 engaged in ‘pointing’ and ‘shrugging her shoulders’ in the Baseline but did not in the Intervention session. However, she introduced new behaviours in the Intervention that did not appear in the Baseline session, i.e. ‘drawing the ME’s attention’ to sounds outside the room and ‘touching ME’s chin’. The amount of ‘looking at ME’ engaged in by participant 2 was comparable in Baseline (19) and Intervention (21) sessions. Participant 2 ‘laughed’ substantially more often in Intervention (20) than in the Baseline (2) session. This pattern was repeated with regards to ‘moving her hands’ which occurred 35 times in Intervention and only 8 times in the Baseline session; and ‘smiling’ which occurred only once in Baseline but occurred 20 times in the Intervention session. ‘Nodding’ occurred 23 times in Baseline and 17 times in the Intervention session whilst participant 2 ‘shook her head’ 3 times in both types of session. Finally, participant 2 ‘scratched her chin’ once in the Baseline and twice in Intervention session; ‘frowned’ 5 times in the Baseline and 7 times in the Intervention session; and ‘jerked her body’ 4 times in both types of session.

As illustrated in Table 6 , there were comparable amounts of ‘looking at ME’ in Baseline (39) and Intervention (35) sessions. Participant 3 engaged in ‘coughing’ (6), ‘yawning’ (2) and ‘smiling’ (1) during the Baseline sessions but did not in the Adaptive sessions. No new behaviours appeared in the Adaptive session for this participant however, there was a marked increase in ‘pointing’ in the Adaptive session (44) as opposed to only one occurrence of this behaviour in the Baseline sessions. There were also almost twice as many ‘speech sounds’ (69, 39) occurrences of ‘hand in air’ (11, 5) in the Adaptive than in the Baseline session. Participant 3 ‘cleared his throat’ 9 times in Baseline and 6 times in Intervention sessions and put his ‘finger in his mouth’ 2 times in the Baseline and 5 times in the Intervention sessions and ‘jerked his body’ 18 times in the Baseline and 7 times in the Intervention session. Finally, participant 3 ‘flashed his eyebrows’ comparable amounts in each types of session with 9 occurrences in the Baseline and 10 in the Intervention session.

Table 7 shows that participant 4 looked at ME 10 times in Baseline and 13 times in the Intervention session. She closed her eyes 8 times in the Baseline and 5 times in the Intervention session. Participant 4 introduced new behaviours in the Adaptive that had not appeared in the Baseline session. She engaged in ‘laughing’ (9), ‘smiling’ (9), showing a facial expression of ‘surprise’ (3) and ‘rubbing her head against the bed’ (6), ‘ME’s hand’ (9) and ‘ME’s head’ (19) in the Adaptive but not the Baseline conditions. She produced her ‘high pitched sound’ 8 times more often in the Adaptive sessions (120) than she did in the Baseline session (15). She also engaged in 3 times more ‘thumb chewing’ in the Baseline (15) than the Adaptive session (5).

As is clear in the Table 8 , participant 5 produced ‘speech sounds’ (29), engaged in ‘heavy breathing’ (13) and ‘poked out her tongue’ (71) during the Intervention but did so in the Baseline condition. Furthermore, she ‘looked at and played with her hands’ (16), ‘coughed’ (1), ‘closed her eyes’ (4) and ‘closed her eyes tight’ (2) in the Baseline condition but did not at all during the Intervention condition. Participant 5 ‘looked at ME’ almost 3 times as much in the Intervention (41) than the Baseline (17) interaction session. She ‘lifted her head off the bed’ 11 times in the Baseline and 28 in the Intervention session. Participant 5 ‘jerked her body’ a comparable amount of times in the Baseline (10) and Intervention (9) session. Finally, ‘raising eyebrows’ occurred 11 times more in Baseline (22) than in the Intervention session (2).

3. Group comparisons

The communicative behaviours of the nonverbal participants with dementia were compared between conditions using a randomisation test [ 32 ]. The nature of this work was exploratory and as such we avoided directional hypotheses. Therefore, both one and two-tailed results were accepted. Table 9 shows the means, standard deviations and p-values for behavioural variables and subvariables between Baseline and Intervention sessions.

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https://doi.org/10.1371/journal.pone.0180395.t009

Communicative behaviours

The randomisation test revealed that people with dementia looked more at ME’s face or body in the Baseline sessions (p < .01). Other variables showed no significant differences.

Facial expressions.

The randomisation test showed a significantly higher duration of a ‘neutral’ facial expression for people with dementia in Baseline than in Intervention sessions (p < .05; Table 9 ), where there was a significant increase in ‘smiling’ (p < .01). None of the other facial variables for people with dementia differed significantly.

Vocalisations.

The randomisation test showed no significant differences in ‘vocalising’ behaviours between Baseline and Intervention sessions (p-values >.05).

Bodily contact and gestures.

The randomisation test revealed non-significant differences (p-values >.05) in duration of ‘bodily contact’ or type and amount of gestures between Baseline and Intervention sessions for people with dementia.

There were significant increases in the amount of imitation by people with dementia (p>.05) in Intervention sessions.

Daily activity

Results of the ‘Direct Observation of Behaviour’ observation instrument [ 10 ] indicated that the participants spent the biggest part of the day in a ‘neutral’ state. In other words, for 68.6% of day, the participants were ‘detached from the environment’ and were most often sleeping or doing nothing. This result is particularly striking as it closely resembles the findings of Bowie & Mountain (1993) [ 10 ]. One might have expected the social environment for people with advanced with dementia living in care homes to have improved in the last 24 years. However, this does not appear to be true of the care facility participating in this study. ‘Social engagement’ came just below ‘self care’ at 10% indicating that participants spent only one tenth of the waking day in interaction with others. Furthermore it is of interest to note that as in the Bowie & Mountain (1993) [ 10 ] study, the majority of these ‘interactions’ involved the caregiver talking to the person with dementia during activities of daily living. This finding suggests that the questions used in the Baseline condition were indeed representative of the interactions that are typically offered by caregivers to individuals with advanced dementia. The next highest percentage was ‘reception of care’ at 5%. This finding largely reflected the level of assistance that the participants required to eat and drink at meal times. ‘Motor activity’ (2%) and so-called ‘inappropriate’ behaviour (2.1%) comprised very little of the day and ‘antisocial’ behaviour did not appear at all. As such, these findings illustrate that very little of the participants’ time was spent engaged in behaviours that might be deemed ‘out of place’ or ‘challenging’. Although this finding is encouraging in itself, it does not reflect the common perception of people with advanced dementia that are held by caregivers; that is they are both unable and unwilling to communicate [ 6 ], [ 13 ].

Individual communication repertoires

The use of the Bowie & Mountain (1993) [ 10 ] observation instrument not only allowed the observers to sketch out the participants’ daily activity patterns, it also afforded an insight into the communicative behaviours used by the participants. This phase was crucial to the study design as it also allowed the observers to take field notes on and to assess the types of communication engaged in by each individual prior to the intervention, thereby following the principles of Intensive Interaction as defined by Nind (1999) [ 25 ]. All participants engaged in a set of fundamental communicative behaviours; eye gaze, sounds, movements and facial expressions, however each individual had his/her own unique subset of behaviours. As such, these were regarded as their individual repertoires.

Participants engaged in different types of communicative behaviours between Baseline and Intervention sessions, i.e. some behaviours increased in Intervention sessions; some behaviours were observed less often in Baseline sessions; some behaviours appeared in each type of session that did not appear in the other. The differences in behaviours between the sessions was sometimes subtle (as with participant 3) and other times very clear (as with participant 4). Indeed, the varieties in response to the Intervention were as individual as the people we worked with. As we have illustrated, each person had his/her own unique vocabulary.

For example, 3 of the participants (1, 2 & 3) retained some form of recognisable speech. These participants responded to the Intervention in a more subtle way than the remaining 2 (4 & 5). What is clear from this finding is that individuals prefer to use the most sophisticated form of communication that they have at their disposal, echoing the ideas of Kitwood [ 6 ]. Although these participants did not always use speech to express themselves, they also used their own unique non-verbal methods of communication. For example, participant 1 liked to look at herself in the viewfinder of the camera. She winked at herself and sang in the Intervention session and did not engage in these behaviours in the Baseline session. Participant 2 drew ME’s attention to sounds that were coming from outside her room and touched ME during the Intervention sessions but did not during the Baseline sessions. Furthermore, participant 3 engaged in far more speech sounds and pointing in the Intervention than the Baseline sessions.

Group comparisons

Each of the five individuals had a communication repertoire and these were distinct from each other. The two individuals (MB & MD) who were the most mobile engaged in more behaviours that were relatively easy to decipher (e.g. pointing, nodding to signify ‘yes’ and shaking the head to signify ‘no’). Only one of the individuals who was confined to bed engaged in one of these, i.e. pointing. However, four of the five participants engaged in making speech sounds that, although difficult to comprehend, indicated a desire to engage in whichever means possible. It also appears that when sounds are less available to the participants, they tend to rely more often on movements and facial expressions to engage. Three of the five participants laughed during the sessions and four of the participants smiled. These findings are particularly encouraging as these behaviours indicate pleasure on the part of the person with dementia and may be easier for caregivers to recognise as signs of emotional connection in the absence of speech [ 13 ].

The finding that people with dementia looked more at ‘ME’s body/face’ in Baseline sessions may at first seem to be somewhat anomalous. However, this could be interpreted as the person with dementia ‘scanning’ ME for signs of engagement. The finding that people with dementia displayed a ‘neutral’ facial expression more often in the Baseline than the Adaptive Interaction sessions coupled with significantly more smiling and vocalising, suggests that they enjoyed the nonverbal interactions. Reassuringly as imitation is central to Adaptive Interaction, there was significantly more imitation displayed by the people with dementia. This confirms that imitation may provide a feasible method for nonverbal people living with dementia to communicate with others.

General discussion

In interpreting these findings we must of course look to the theory behind Intensive/Adaptive Interaction. Viewed from the developmental perspective, we can assume that ME’s imitation of the person with dementia’s communicative behaviours provided him/her with meaningful feedback. This feedback encouraged the person with dementia to further engage with ME and as such a reciprocal interaction ensued. We can also claim that ME’s use of Adaptive Interaction unlocked a wider communicative repertoire in people with advanced dementia in comparison to Baseline sessions. Adaptive Interaction revealed new behaviours in individuals with advanced dementia that Baseline Interactions did not. These findings were perhaps most clear in the individuals who have the most advanced dementia. For example, although EA and GB were probably the most cognitively impaired, the use of their own communicative behaviours by ME appeared to have a hugely positive effect. GB laughed a total of 9 times in the Intervention sessions and did not laugh at all in the Baseline sessions. The presence of laughter as a communicative behaviour in this context does not require a lengthy interpretation or theoretical supposition. As such, we can surmise that participant 4 simply enjoyed the Intervention session more and found it more fun and amusing than the Baseline session. Participant 5’s reaction to ME’s use of Adaptive Interaction was also extremely noteworthy. For example, she did not produce speech sounds or engage in heavy breathing at any point during the Baseline condition but did so in the Intervention condition (n = 29). The presence of these behaviours in the Intervention condition indicates that participant 5 made far more attempts to communicate with ME. Indeed, increased eye contact with ME supports the claim that her desire to communicate was much clearer in the Intervention condition. ME’s behaviour, i.e. a reflection and interpretation of her own communicative repertoire, not only caught her interest but was also meaningful to her. Participant 5 appeared far more interested in herself and her own immediate surroundings during the Baseline than Intervention sessions. This was illustrated by her looking at and playing with her hands in Baseline sessions (n = 16). When she did this, her hands were positioned directly in front of her face and she appeared fascinated by the movement of her fingers. This is reminiscent of the ‘self-talk’ behaviours that people with Autistic Spectrum Disorders and severe and profound learning disabilities may engage in [ 9 ]. Participant 5 did not engage in this ‘self-talk’ behaviour at any point during the Intervention condition. Instead she looked directly at ME with more regularity than in the Baseline condition and the presence of speech sounds in the Intervention condition indicated a higher level of engagement than in the Baseline condition.

From this small-n study, Adaptive Interaction appears to have potential for promoting and supporting communication between people living with dementia who cannot speak and those who care for them. This is a hopeful finding for this population as they typically have few opportunities for social participation in their environment. Similar to the observations of Bowie and Mountain [ 10 ] more than 20 years ago, more than two thirds of their time was spent engaged in no activity whatsoever. ‘Social engagement’ accounted for just 10% of the day, with the majority of these ‘interactions’ consisting of a caregiver speaking to a person with dementia whilst assisting them with or carrying out activities of daily living. They were offered little or no stimulation, social interaction or meaningful engagement, in accordance with the mistaken perception that people living with dementia without verbal language production are ‘unreachable’.

Overall, these findings suggest that Adaptive Interaction provides a mechanism for people living with dementia who have no functional verbal language production, to demonstrate a desire and ability to communicate. The study highlights that interaction partners need to be responsive and adaptive to the needs of nonverbal people with dementia. Providing a supportive communication environment can enable nonverbal people with dementia to demonstrate their continued personhood in social interactions with another human being.

This study has shown that, certainly in the participating care home, people with very advanced dementia have very few opportunities for social interaction. The data gleaned by the Bowie & Mountain [ 10 ] observation instrument in this study closely reflected those reported in the original study. This finding is somewhat counterintuitive as we would expect it to be rather more positive in response to today’s supposedly enlightened approach to dementia care. However, the results of the current study have also shown that it is possible to both identify and use the individual communicative repertoires of people with advanced dementia and that Adaptive Interaction has a positive impact on their communicative abilities. This illustrates that contrary to popular belief, these individuals although severely cognitively impaired and communicatively challenged have both the desire and the means to communicate with other individuals. The biggest challenge in this study was to identify and use individual repertoires in a way that were meaningful to each person. Were the Adaptive Interaction approach to be employed within dementia care environments, the bigger test would be to convince care staff of the validity of this approach. Furthermore, it is likely that training staff in how to engage in Adaptive Interaction would in itself present the most significant obstacle. However, we hope that any initial feelings of self-consciousness on the part of care staff will be replaced with pride in response to what they and the person they are working with achieve together. With this in mind we plan to take Adaptive Interaction further by training a small group of dementia care home staff to use the approach. The wider aim thereafter will be to roll out this approach in care homes across the country. This in turn will hopefully go some way to changing the patterns of and opportunities for social interactions in care homes for the better.

Limitations and future directions

Perhaps the main criticism that may be levelled at this study is the appropriateness of having a single individual acting as the sole interaction partner to all participants. As such, one might question the potential generalisation of the results in situations where other communication partners are involved. A single communication partner was used for three main reasons. First of all, ME is well versed in facilitative communication strategies and is aware of and sensitive to the communicative needs of people with dementia. Secondly, this design provides a means of exerting a modest amount of control over the findings. In short, all participants engaged with one individual thereby ruling out the impact of differing knowledge bases and approaches that may have been used by other interaction partners. Thirdly, training other interaction partners to engage with people with dementia using Adaptive Interaction was out with the scope of this study. However, as previously mentioned this is something that we aim to explore in our future research.

Supporting information

S1 file. example of adaptive interaction..

https://doi.org/10.1371/journal.pone.0180395.s001

S2 File. Baseline interaction questions.

https://doi.org/10.1371/journal.pone.0180395.s002

Acknowledgments

The authors wish to thank the individuals living with advanced dementia, their family members and professional caregivers who took part in and facilitated this study.

Author Contributions

  • Conceptualization: ME AA.
  • Data curation: ME.
  • Formal analysis: ME.
  • Investigation: ME.
  • Methodology: ME AA.
  • Project administration: ME.
  • Resources: AA.
  • Supervision: AA.
  • Validation: ME AA.
  • Visualization: ME.
  • Writing – original draft: ME.
  • Writing – review & editing: ME AA.
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  • v.59(4); 2020 Dec

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THE ENIGMA OF LEWY BODY DEMENTIA: A CASE REPORT

Ivona orlović, matija bartolović, katarina marušić, darko vlahović, ines Šiško markoš, dalibor karlović, vjekoslav peitl.

Lewy body dementia is a progressive neurodegenerative disease and is considered to be the second most common cause of dementia in the elderly. Because of the complexity of clinical presentation, it is often misdiagnosed and mistaken for other dementias, which may result in administering inappropriate therapy, and thus worsening of the patient condition. We reviewed a case of a 71-year-old patient whose clinical presentation gradually occurred with complex visual hallucinations, atypical extrapyramidal motor symptoms, fluctuating cognitive impairments with delirious episodes, and oscillating syncope. Depressive mood, impaired daily functioning and sensitivity to antipsychotics were also noted. Extensive diagnostic workup was performed with neuropsychological testing and use of single-photon emission computerized tomography. Considering the clinical presentation and diagnostic procedures performed, the diagnosis of Lewy body dementia was set and pharmacotherapy was revised. We discuss the importance of taking overall clinical presentation and diagnostic treatment in consideration and applying appropriate therapy to slow down the progression of the disease and exacerbation of the patient’s psychological functions.

Introduction

Lewy body dementia (LBD) is a progressive neurodegenerative disease that is considered to be the second most common cause of dementia after Alzheimer’s disease (AD) ( 1 , 2 ). Usually, it is clinically and pathologically overlapping with Parkinson’s disease dementia (PDD) or with AD, making it difficult to identify and differentiate in a timely manner ( 3 , 4 ). The disease starts gradually, usually in the seventh decade, it is twice as common in men and can be initially presented with dementia or parkinsonism, although patients develop both clinical pictures over time ( 5 ). LBD is characterized by cognitive fluctuations, behavioral REM sleep disturbance, early occurrence of visual hallucinations, and less frequently, by auditory hallucinations or delusions ( 1 ). Parkinsonism in LBD differs somewhat from that in Parkinson’s disease, but due to nonspecificity, LBD is diagnosed when cognitive impairment precedes parkinsonism or occurs within a year of the appearance of extrapyramidal symptoms (‘one-year rule’) ( 3 ). In addition, significant autonomic dysfunction is present in more than half of the patients ( 6 ), with frequent comorbid anxiety and depression ( 7 ). Among other things, pronounced sensitivity to antipsychotics, especially dopamine antagonists, is clinically very important in recognizing LBD ( 8 ).

Although the diagnosis of LBD can be confirmed with certainty only by autopsy of brain tissue, apart from basic clinical features, differentiation of the diagnosis is possible using magnetic resonance imaging (MRI) and single-photon emission computerized tomography (SPECT), i.e., a finding of temporoparietal and occipital hypoperfusion with reduced uptake of the striatal dopamine transporter ( 3 ).

In this paper, we review a case of a man whose clinical presentation, hypersensitivity to antipsychotic therapy and diagnostic findings led us to suspect LBD. Our aim was to show the complexity of diagnosing LBD due to nonspecificity of various symptoms, which may result in the administration of inappropriate therapy and deterioration of clinical presentation, and thus of the patient condition.

Case Report

A 71-year-old patient, a retired sailor, married, father to three children, was admitted to the hospital for diagnostic check-up and treatment of organic hallucinosis and mildly manifested extrapyramidal symptoms. He was unburdened with neuropsychiatric heredity. The patient described extrapyramidal disorders as initial symptoms, which had begun to appear two years after retirement (fifteen years before). At first, he was treated with pramipexole dihydrochloride monohydrate. Visual hallucinations then started to appear and every day he saw a person he knew but it was not real. Parkinson’s disease was diagnosed based on the persistence of extrapyramidal symptoms and was treated with a combination of levodopa and carbidopa. It resulted in intensified visual hallucinations, and the patient described it as seeing the crew and ships. Shortly before hospitalization, the patient was examined at a psychiatric outpatient clinic and was diagnosed with organic hallucinosis and a depressive episode. Escitalopram and olanzapine were introduced in therapy but the patient did not adhere to treatment recommendations. In the last two years, the patient experienced hypotensive episodes and syncope that led to the diagnosis of a cervical syndrome. At the same time, the patient experienced deterioration of daily functioning with a marked decline in decision making. Previously, he was treated for syphilis and suffered from asthma and gout. During the examination, he complained of frequent urination and constipation. He denied taking any psychoactive substances.

On the day of hospital admission, the patient was occasionally disoriented, he responded with short latency, along with psychomotor slowing with noticeable choreiform movements of the body, predominantly of the head, torso and arms. Also, cogwheeling effect and lead-pipe resistance were mildly indicated. He appeared to be hypothymic with weak affective modulation and pronounced intrapsychic tension. His thought flow was mildly slowed without any delusions in the thought content. He confirmed complex visual hallucinations which he described in detail with affective engagement. In the domain of personality, he seemed inclined to suppression and projection with occasionally reduced tolerance to external frustration. The patient’s cognitive functions fluctuated throughout the day, primarily with impairment of executive functions (positive Luria’s test).

Neurological testing revealed dysarthria, bradykinesia, hypomimia and elevated muscle tone of extrapyramidal type in all extremities, without loss of sensation. In Romberg’s position, there was latero- and retropulsion, while walking was characterized by smaller steps.

Routine laboratory check-up revealed no significant deviations. Brain CT, which was performed due to frequent oscillations of consciousness and syncope, excluded acute neurological events, as well as any sort of an expansion process. Brain MRI showed diffuse atrophic changes of the brain with widening of the subarachnoid fluid space and brain sulci in frontoparietal and temporo-occipital region and atrophic changes of the cerebellum with expanded pericerebellar fluid spaces. There was absence of the representation of both putamina and the left nucleus caudatus, while the accumulation in the right nucleus caudatus was relatively maintained on the SPECT scan with 123-I ioflupane ( Fig. 1 ). Basal brain activity was elevated along with severe functional impairment of the striatal dopamine system. Serologic testing excluded HIV dementia while reactive quantitative TPHA test for syphilis was positive. However, due to history data on previously treated syphilis, differential diagnosis of neurosyphilis was excluded. Neurologically determined anosmia was differentiated as a condition that occurred due to post-infectious neuritis along with subsequent permanent damage to the olfactory nerve. Neuropsychological testing using the instruments of clinical interview, WB II Verbal Part, WB Memory Scales, FAS and Rey Complex Figure Test revealed impaired verbal fluency, decreased memory and learning ability, reduced visual-motor abilities, and concentration disturbances.

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SPECT scan with 123-I ioflupane showing elevated basal brain activity, along with severe functional impairment of the striatal dopamine system.

Considering the diagnostic workup performed (clinical signs and neuroradiological confirmation), the diagnosis of LBD was made and pharmacotherapy was revised. During hospitalization, pramipexole was excluded from therapy due to worsening of visual hallucinations, while levodopa/carbidopa was continued at a dose of 250/25 mg TID. Rivastigmine was also introduced at a dose of 3 mg daily and divided into morning and evening applications as an acetylcholinesterase inhibitor recommended for the treatment of this type of dementia. Due to complex hallucinatory experiences and consequential affective engagement, clozapine was administered as an evening dose of 25 mg. Visual hallucinations then diminished and ceased, while the extrapyramidal symptoms were less pronounced, as well as cognitive fluctuations, with absence of delirium episodes and normalization of circadian rhythm.

Discussion and Conclusion

The variety of clinical presentation in the reviewed patient manifested as fluctuating cognitive impairments primarily in executive functioning with fluctuating delirious episodes and daily drowsiness, complex visual hallucinations, and atypical extrapyramidal motor symptoms. Episodes of oscillating syncope were present, as well as depressive mood and sensitivity to antipsychotics. A similar clinical state is described by Wearne et al. ( 9 ). Based on the clinical state and diagnostic workup performed, LBD was suspected, with difficult differentiation from other dementias, especially AD and PDD, as well as their possible combinations ( 10 , 11 ).

It is considered that the main feature of LBD is fluctuation of cognitive functions, which can be observed in most patients ( 12 ). However, there are difficulties in consistent assessment of their presence ( 3 , 13 ). Neuropsychological assessment of the presented patient revealed reduced memory capacity and learning ability, with reduced visual motor abilities and concentration disturbances, which is consistent with the data available ( 14 ). However, although memory impairment occurs at an earlier stage of both disorders, the pattern of neuropsychological deficits in LBD differs from that in AD in terms of less pronounced memory impairment and more serious impairment of visual spatial orientation, attention, and executive functions ( 13 , 15 ).

Furthermore, in our patient, as well as in around half of the patients diagnosed with LBD, well-formed visual hallucinations are present, which also are the most frequent psychiatric symptom of LBD. They may be accompanied by auditory hallucinations, delusions, anxiety, and behavioral disturbances, all of which distinguish this disease from dementia of another etiology, or from delirium induced by external causes ( 16 , 17 ). The presence of visual hallucinations and cognitive impairment is associated with acetylcholinesterase deficiency, which is more pronounced in LBD than in AD ( 18 ), and a correlation of visual hallucinations with the distribution of Lewy bodies in temporal lobes was also noted ( 19 ).

The above-mentioned extrapyramidal symptoms in LBD are present in 25% to 50% of patients, and they are similar to those in Parkinson’s disease with more pronounced postural instability, reduced facial expression, and less pronounced tremor, but with regard to clinical similarity between LBD and PDD, they often are differentiated by the use of already mentioned ‘one-year rule’ ( 3 , 20 ).

Depressive symptoms can be present in 33% to 50% of LBD patients, which was the case in our patient, which makes a greater percentage in relation to AD and similar percentage in relation to PDD ( 17 , 21 , 22 ). Retrospective case-control studies indicate that the occurrence of depression or delirium before the diagnosis of dementia is more common in LBD than in AD ( 7 ).

Spread of LBD related pathology to the brainstem and autonomic nervous system leads to orthostatic hypotension and/or carotid sinus hypersensitivity, which consequently leads to syncope episodes that are more common in LBD than in AD ( 6 ). Other symptoms such as constipation, REM sleep disturbances with daily drowsiness and restlessness during the night, hyposmia and postural vertigo appear several years prior to memory disorder in LBD ( 23 , 24 ). Untimely urinary incontinence was observed in LBD, unlike AD, and it reflects an autonomic nervous system disorder ( 25 ). Symptoms of autonomic dysfunction were present in our patient, which is consistent with the data reported by Horimoto et al ., who established that all subjects exhibited some of the symptoms of autonomic dysfunction, and 62% experienced symptoms of severe autonomic dysfunction ( 6 ).

In the available literature, there are abundant data on difficulties in differentiating among different types of dementia, LBD not being an exception. LBD could be misdiagnosed as PDD because of clinical manifestations ( 26 , 27 ), as in the case presented, and often as AD ( 26 ) or frontotemporal dementia ( 28 ). Although a specific biomarker is still not available to confirm the LBD diagnosis, MRI findings in those involved, as in our patient, show a relatively preserved medial temporal lobe cortex with global cortical atrophy in comparison to patients with AD ( 29 ), while structural changes shown by MRI in LBD compared to PDD are relatively identical ( 30 ). Furthermore, SPECT scans can be used to evaluate the integrity of dopaminergic nigrostriatal neurons, as well as to distinguish LBD from other forms of dementia. Namely, a possible indicative biomarker for LBD is a reduced intake of dopamine transporter into basal ganglia ( 31 ), as confirmed in the case presented.

Regarding treatment, cholinesterase inhibitors may be used due to the already mentioned acetylcholine deficiency in LBD ( 32 - 34 ), as confirmed in a case study ( 35 ). They are effective in treating cognitive and behavioral symptoms, as well as visual hallucinations. We opted to use rivastigmine which improved the patient’s condition. It is stated that more than 50% of patients have a strong reaction to antipsychotics in terms of hypersensitivity ( 8 ), especially with typical antipsychotics, which also have a higher risk of parkinsonism, as well as a higher potency of atypical ones, such as olanzapine and risperidone ( 36 ). But, due to complex hallucinatory experiences in our patient, clozapine was introduced to treatment, a drug with a proven positive effect on PDD ( 37 ). However, quetiapine is the recommended choice for antipsychotic treatment in LBD because of the more favorable side effect profile, although evidence for its efficacy is limited ( 38 ). Also, a combination of levodopa/carbidopa was introduced for the purpose of reducing motor disturbances, which is consistent with the recommendations for treating LBD ( 39 ).

Lewy body dementia should be taken in consideration whenever there are well-formed visual hallucinations, cognition fluctuations, parkinsonism or neuropsychological deficits at clinical presentation. Due to the differential diagnostic complexity and sensitivity to psychopharmacotherapy, further research is required to minimize deterioration of mental functions and daily functioning and to slow down the progression of the disease.

From Crisis to Comeback: Maggi Crisis Management Case Study

Have you ever wondered how a beloved brand like Maggi navigated through a major crisis and managed to salvage its reputation? 

In this blog post, we will delve into the fascinating case study of Maggi’s crisis management. 

From the emergence of health concerns surrounding its popular noodles to government bans and consumer backlash, Maggi faced a daunting challenge. 

However, through strategic crisis management approaches, the brand not only survived but also thrived. 

Join us as we examine the key strategies employed by Maggi, evaluate their effectiveness, and draw valuable lessons from this compelling case study.

Let’s learn through reading Maggi crisis management case study

Brief history and popularity of Maggi

Maggi, a brand of instant noodles and food products, has a rich history that spans over a century. It was first introduced in 1884 by Julius Maggi, a Swiss entrepreneur, as a solution to provide affordable and nutritious meals to the working class. Maggi quickly gained popularity due to its convenience and flavor-enhancing properties.

Over the years, Maggi expanded its product range to include various food items such as soups, sauces, bouillons, and noodles. The brand’s instant noodles, in particular, became a household name across many countries, cherished for their quick preparation time and delicious taste.

Maggi’s popularity soared globally, with a presence in over 90 countries. It became synonymous with quick and easy meals, often considered a go-to option for busy individuals and families. Its widespread appeal and loyal consumer base cemented Maggi’s position as a leading food brand in the international market.

However, the brand’s stellar reputation and popularity would soon face a severe test when it encountered a crisis that shook consumer confidence and forced Maggi to reevaluate its crisis management strategies.

The Crisis

In 2015, Maggi faced a significant crisis that cast doubts on the safety and quality of its beloved noodles. It all began when the Food Safety and Standards Authority of India (FSSAI) conducted tests on Maggi noodles and found elevated levels of lead and monosodium glutamate (MSG), a flavor enhancer, beyond the permissible limits.

The test results sparked widespread concerns about the potential health hazards associated with consuming Maggi noodles. Lead is a heavy metal that, when ingested in excessive amounts, can cause severe health problems, especially in children. 

MSG, on the other hand, had been a subject of controversy for its alleged negative health effects, including headaches and allergic reactions.

The news of the test results spread like wildfire , causing a wave of panic among consumers. Social media platforms amplified the concerns, and soon there was a massive backlash against Maggi. 

Consumers began boycotting the brand, demanding action from regulatory authorities to safeguard their health.

The crisis escalated when several Indian states imposed bans on Maggi noodles, and the product was swiftly removed from store shelves. The brand’s reputation, carefully built over decades, was suddenly under threat, and Nestlé, the parent company of Maggi, faced a critical challenge in managing this crisis effectively.

The health concerns surrounding Maggi noodles not only posed a threat to public health but also raised questions about Nestlé’s commitment to product safety and quality. To regain trust and restore its reputation, Maggi needed a robust crisis management approach that could address the concerns of both consumers and regulatory authorities.

Government bans and consumer backlash

The health concerns surrounding Maggi noodles led to swift action by governmental authorities in various countries. In India, where Maggi had an immense presence, several state governments imposed a ban on the sale and production of Maggi noodles. 

The bans were based on the test results that showed elevated levels of lead and MSG, raising concerns about public health and safety.

The government bans added fuel to the already raging fire of consumer backlash. Consumers felt betrayed and deceived by a brand they had trusted for years. Social media platforms became a battleground for expressing outrage and sharing personal experiences, further tarnishing Maggi’s reputation.

Hashtags like #BoycottMaggi trended, and consumers actively participated in online discussions, spreading negative sentiments and urging others to boycott the brand.

The consumer backlash extended beyond social media. Protests and demonstrations were organized in various cities, with consumers disposing of Maggi noodles publicly to show their discontent. The crisis hit Maggi hard, resulting in a significant decline in sales and a loss of market share.

Impact on Nestlé and Maggi’s reputation

The crisis surrounding Maggi had a profound impact on both Nestlé and the brand’s reputation. Nestlé, as the parent company, faced significant challenges in managing the crisis and protecting its overall corporate image.

The incident not only raised questions about Maggi’s product safety and quality but also put a spotlight on Nestlé’s commitment to consumer welfare. The fact that elevated levels of lead and MSG were found in Maggi noodles brought into question the effectiveness of Nestlé’s quality control processes and regulatory compliance.

The impact on Maggi’s reputation was equally significant. The brand went from being a household favorite to being associated with health concerns and regulatory violations. The once-trusted brand became a symbol of mistrust and betrayal in the eyes of consumers.

Maggi’s image as a convenient and reliable food choice was severely tarnished. The crisis highlighted the need for Maggi to not only address the immediate concerns regarding product safety but also rebuild its reputation from the ground up.

The success of their crisis management efforts would determine whether Maggi could regain consumer trust and restore its position in the market.

Crisis Management Strategies Employed by Maggi

Following are the key aspects of Maggi crisis management strategy that were employed by Maggi to reclaim customers’ trust and restore its brand’s reputation.

Prompt response and acknowledgement of the crisis

One of the key crisis management strategies employed by Maggi was a prompt response and acknowledgement of the crisis. Recognizing the gravity of the situation, Maggi did not shy away from addressing the issue head-on.

As soon as the test results and the subsequent bans were announced, Maggi swiftly issued public statements acknowledging the concerns raised and expressing its commitment to consumer safety. The brand took responsibility for the situation and assured consumers that they were taking the matter seriously.

Maggi’s prompt response also allowed the brand to take control of the narrative to some extent. By proactively communicating about the crisis, Maggi aimed to prevent misinformation from spreading and mitigate further damage to its reputation. This approach helped Maggi set the stage for subsequent crisis management efforts.

Open communication channels with stakeholders

To address consumer concerns and keep them informed, Maggi utilized multiple communication channels. The brand set up dedicated helplines and email addresses to receive queries and feedback from consumers.

Social media platforms were actively monitored, allowing Maggi to respond promptly to consumer inquiries and complaints. Through these channels, Maggi provided regular updates on the steps being taken to address the crisis, assuring consumers of their commitment to resolving the issue.

Maggi also prioritized open communication with its distributors and retailers. The brand ensured that they were well-informed about the situation and provided them with guidance on how to handle consumer queries and concerns.

Furthermore, Maggi actively engaged with the media, providing regular press releases and participating in interviews to keep the public informed about the progress made in addressing the crisis. This helped to shape the narrative surrounding the brand and countered negative publicity.

Collaboration with regulatory authorities

Maggi understood that working closely with regulatory bodies was essential to rebuild trust and ensure compliance with safety standards. The brand cooperated fully with investigations, providing necessary information, test results, and documentation to the regulatory authorities. This collaboration helped demonstrate Maggi’s commitment to addressing the issues raised and working in alignment with the regulatory framework.

By actively involving regulatory authorities in the crisis management process, Maggi showcased its willingness to comply with regulations and prioritize consumer safety. This collaborative approach fostered a sense of shared responsibility between Maggi and the regulatory bodies, leading to a more constructive and effective resolution of the crisis.

Additionally, Maggi sought guidance and recommendations from the regulatory authorities on implementing appropriate measures to address the concerns. The brand worked closely with the authorities to establish revised quality control protocols and testing procedures to ensure the safety and compliance of its products. This collaboration not only helped in resolving the immediate crisis but also set the foundation for a more robust and transparent system moving forward.

Product recall and quality assurance measures

Firstly, Maggi initiated a voluntary recall of its noodles from the market. This proactive step demonstrated the brand’s commitment to consumer safety and its willingness to take immediate action to address the issue.

The product recall was a significant undertaking, involving the retrieval and removal of Maggi noodles from store shelves across affected regions. By recalling the products, Maggi aimed to prevent further consumption and potential harm to consumers.

Simultaneously, Maggi implemented rigorous quality assurance measures to ensure the safety and compliance of its products. The brand conducted extensive testing of its noodles, not only for lead and MSG but also for other potential contaminants.

Maggi worked with reputable laboratories to conduct these tests and set stringent internal standards for acceptable levels of contaminants. This commitment to quality assurance aimed to rebuild consumer confidence by assuring them of the safety and integrity of Maggi products.

Public relations and brand rebuilding efforts

To regain consumer trust, Maggi launched a robust public relations campaign. The brand actively engaged with the media to share updates on the progress made in addressing the crisis. This included press releases, interviews, and statements from company representatives.

Maggi used these opportunities to emphasize its commitment to consumer safety, the measures taken to rectify the situation, and the steps implemented to prevent similar issues in the future. The goal was to rebuild credibility by being transparent and proactive in its communication with the public.

Maggi also leveraged social media platforms and its website to communicate directly with consumers. The brand shared information about the product recall, quality control measures, and safety protocols implemented. Maggi encouraged open dialogue, addressing consumer queries, concerns, and complaints promptly and empathetically.

Additionally, Maggi launched targeted marketing campaigns focused on re-establishing its image as a trusted and reliable brand. These campaigns highlighted the brand’s heritage, quality standards, and rigorous testing processes. Maggi emphasized its commitment to providing safe and nutritious food options for consumers, focusing on the steps taken to regain their trust.

To reinforce its commitment to quality, Maggi also partnered with renowned nutritionists and health experts to endorse the brand and vouch for its safety. These collaborations aimed to rebuild credibility by associating Maggi with authoritative voices in the field of nutrition and food safety.

Lessons Learned from Maggi’s Crisis Management 

Following are the important lessons that serve as valuable guidelines to navigate and mitigate the impact of crises effectively, protecting the reputation and long-term success of the organization.

A. Importance of proactive crisis preparedness

Maggi’s crisis highlighted the importance of being prepared for potential crises before they occur. By having proactive crisis management strategies in place, organizations can respond swiftly and effectively when faced with unexpected challenges. This includes having a crisis management team, conducting risk assessments, and developing response plans that outline steps to be taken in different scenarios. Being prepared enables organizations to mitigate damage, maintain control of the narrative, and protect their reputation.

B. Effective communication as a key component of crisis management

Maggi’s crisis underscored the critical role of effective communication during a crisis. Prompt and transparent communication with stakeholders, including consumers, government authorities, distributors, and the media, is crucial in managing a crisis. Open channels of communication help address concerns, provide accurate information, and demonstrate a commitment to transparency and accountability. Clear and consistent messaging helps regain trust, counter misinformation, and shape the narrative surrounding the brand.

C. Collaborative approach with regulatory bodies

Maggi’s collaboration with regulatory authorities proved to be essential in managing the crisis. Working closely with regulatory bodies demonstrates a commitment to compliance and consumer safety. By actively involving regulatory authorities, organizations can benefit from their expertise, guidance, and support in resolving the crisis effectively. Collaboration fosters trust, enables a unified approach, and helps establish long-term regulatory compliance standards.

D. Building and maintaining brand trust and credibility

Maggi’s crisis highlighted the significance of brand trust and credibility. Building a strong reputation based on consistent quality, transparency, and consumer satisfaction is crucial in weathering a crisis. Organizations must prioritize maintaining trust by delivering on their brand promises, adhering to safety and quality standards, and being responsive to consumer concerns. Cultivating brand loyalty and credibility beforehand helps in times of crisis, as consumers are more likely to give the benefit of the doubt and remain supportive.

Final Words 

Maggi crisis management case study provides valuable insights into how a brand can effectively navigate a crisis and rebuild its reputation. Maggi’s experience highlights the importance of proactive crisis preparedness, effective communication, collaboration with regulatory authorities, and building and maintaining brand trust and credibility.

Finally, maintaining brand trust and credibility is crucial in crisis management. By consistently delivering on brand promises, organizations can weather a crisis with the support of loyal consumers. Building strong reputations beforehand helps in times of crisis, as consumers are more likely to give the benefit of the doubt and remain supportive.

By learning from the Maggi crisis management case study, organizations can implement these strategies to navigate crises effectively, protect their reputation, and emerge stronger from challenging situations.

About The Author

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Tahir Abbas

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  13. Maggi Case study: The 2015 Maggi crisis

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    An example u"¿ addi and o McGarry and SimPson for nursing students on case studies to show the Our resource uses a case studY a community-based ParticiPato (Minkler & Wallerstein, 2003) to fessional colleagues asPects of P centered .ur. aþptou.h for peoþle who have dementia. Combining case studies with'CBPR ena6les filmed, reenacted case ...

  15. A case study of Adaptive Interaction: A new approach to communication

    A case study of Adaptive Interaction: A new approach to communication with people with advanced dementia. ... T1 - A case study of Adaptive Interaction: A new approach to communication with people with advanced dementia. AU - Ellis, Maggie P. AU - Astell, Arlene Jean. PY - 2008. Y1 - 2008. M3 - Article. VL - 105. SP - 24. EP - 34. JO - PSIGE ...

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  18. Communicating with people living with dementia who are nonverbal ...

    Loss of verbal language production makes people with dementia appear unreachable. We previously presented a case study applying nonverbal communication techniques with a lady with dementia who could no longer speak, which we termed Adaptive Interaction. The current small-n study examines the applicability of Adaptive Interaction as a general tool for uncovering the communication repertoires of ...

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  23. From Crisis to Comeback: Maggi Crisis Management Case Study

    In this blog post, we will delve into the fascinating case study of Maggi's crisis management. From the emergence of health concerns surrounding its popular noodles to government bans and consumer backlash, Maggi faced a daunting challenge. However, through strategic crisis management approaches, the brand not only survived but also thrived.