Observations on strategies used by people with dementia to manage being assessed using validated measures: A pilot qualitative video analysis

Analysis of video data was conducted of validated assessments with people with dementia as part of a feasibility control study comparing a lifelong learning service with other dementia services.


| INTRODUCTION
Growing evidence shows that people with dementia can report their views and experiences in research. 1,2 However, an area that has been little researched is how people with dementia react while being assessed using validated measures or what strategies they use in this situation. Validated measures in health research enable the assessment of the quality of care, the effectiveness of interventions and supporting decision-making in clinical care and intervention settings. 3 Such measures also enable an understanding of the cause and effect of health conditions and interventions. They have an important role in testing hypotheses to support decision-making in health and social care. 3 In dementia care and research, the use of validated measures also helps to provide a perspective on the way an individual's dementia is progressing, and therefore to understand how best to support them. Such tools are also an important part of the diagnosis.
In the United Kingdom, NICE 4 recommends the use of assessments of cognition, functional ability and mental state when diagnosing dementia. More is known about the experience of receiving a diagnosis of dementia than the impact of participating in validated measures. The communication of a diagnosis of dementia requires sensitivity, indicating that the process can be stressful and overwhelming. 5 In Xanthopoulou and McCabe's 6 study, participants with dementia reported they found the assessment outcome and subsequent diagnosis difficult to hear, and they were scared and upset to receive the diagnosis.
Literature on using validated measures tends to report the outcomes and rationale for their validity and use. Literature reviews on using measures with people with dementia, and more widely in using patient outcome measures, have cautioned not to burden participants or cause harm. [7][8][9] However, there is little discussion about what this means in practice. Ward et al.'s 10 review on evaluating cognitive stimulation highlighted that insufficient information is given about how the assessment of people with dementia is conducted. They also noted that little is reported on how these tests are experienced and what impact there is on the subjective interpretation of the tests by people with dementia, something that has been criticized in cognitive stimulation effect research. [11][12][13] However, it is important to identify measures that are acceptable for both the research community and for those diagnosed with dementia, including reducing any impact in terms of distress, confusion, anxiety or burden in participating. 8 Heggestad et al. 14 argue that the assessment process can be humiliating, and people with dementia may experience a loss of dignity in taking a test. This can have a negative impact on how they see themselves and can be a reminder of the progression of their dementia. Therefore, research to explore how people with dementia experience an assessment process will provide insight to support them through this process be it for diagnostic or research purposes.
This paper provides findings from observed assessments used in a research setting. The authors provide insights into this littleresearched area, and ways to support the person with dementia, researchers and clinicians undertaking assessments. This is the second paper to present findings from this research, with the first available through Thoft et al. 15 The first article highlighted the strategies of the researcher in undertaking assessments using validated measures. The aim of this paper is to provide a new perspective on the assessment process used in research and explore how people with dementia react and identify strategies they use when being assessed with validated measures.

| MATERIALS AND METHODS
This paper presents findings from a video analysis of conducting validated measures with people with dementia. This was part of a wider feasibility and pilot study that was conducted on lifelong learning services in Denmark. Lifelong learning is an education-led programme that provides lessons to support cognitive function, decision making and activities of daily living. It is based on the premise that people living with dementia can learn, develop and grow. 16 The project assessed an intervention group (Lifelong Learning intervention) and a control group (treatment as usual, e.g., services at day-care centres). The study was conducted in six municipalities in Northern Denmark. Participants were tested at the outset of the study and after 5-6 months. Participants were assessed using five validated measures: Mini-Mental State Examination (MMSE) 17 ; Quality of Life in Alzheimer's Disease Scale (QoL-AD) 18,19 ; General Self-Efficacy Scale 20 ; Rosenberg Self-Esteem Scale 21 ; Hawthorn Friendship Scale. 22 A detailed method, background to the wider study and facilitator strategies are presented in Thoft et al. 15 and Sørensen et al. 23 This paper provides an overview of the methods in relation to the video analysis.

| Public and patient engagement
People with dementia and staff from the lifelong learning intervention took part in a workshop to identify the most appropriate measures to use for the wider study. Their input was gained through discussions about what they felt was important to research about the intervention and informed the final choice of validated measures used. These workshops will be the focus of future analyses.

| Video analysis
Fifty-five participants were recruited into the main study (n = 30 intervention group; n = 25 control group). All participants undertook pre-and postassessments, which were recorded using one video recorder. This was positioned to capture the participants' facial features and reactions, while also capturing the table, paperwork and side/back view of the assessor. Videos were chosen because they captured both verbal and nonverbal reactions and enabled multiple reviews of actions and behaviours which may not be identified in person. 24 The decision to conduct an initial pilot analysis was based on the pragmatics of undertaking the analysis and testing the outcomes of this approach. Video analysis is time-consuming, requiring multiple viewings, by several researchers. To ensure that this would elicit valuable and viable data, the team first conducted this as a pilot stage, with plans to extend this analysis. This paper, therefore, presents the findings from this initial stage. A stratified sample of 10 preassessment videos was analysed. This stratification included: equal distribution across the intervention and control group (n = 5 per group); each locality in which the service was delivered; level of dementia (high and low MMSE-score) and diversity of gender. The pre-assessment videos were chosen to avoid recall or familiarity with the measures as this could be a risk if including the postassessment videos. The demographic profile of the participants from the analysed videos is reported in Table 1.  Table 2). The final analysis stage was to draw themes from across each microanalysis and the video graph (see Thoft et al. 15 for further details of the method, video and participant demographics).
As Table 2

| Ethics
Participants were recruited through their service. Each service attended a meeting with the lead researcher to inform them about the aims and process of the research. Participants were informed about the project through a participant information sheet and were able to discuss this with a member of the research team. This emphasized that their participation was voluntary and was not related to their continued use of their respective services. Participants completed a consent form before participating in both pre-and postdata collection phases. Where required, consent was discussed and gained with support from a family or staff member, although no proxy consent was used. All participants were self-consenting.
Danish legislation requires research studies to be based on informed consent and not on ethical approval from a national or public agency. 26 The video recordings were not allowed to be shown outside of the research team due to the requirements of confidentiality and anonymity as stated by the Danish ethical requirements.
All names used in the article are pseudonyms. In keeping with good research practice, the Regional Committee on Health Research Ethics

| RESULTS
The 13 clips varied in length from 17 s to over 3 min. This reflected the nature of the interactions, which were often short responses to questions asked during the assessment. Two core themes were identified about the way people with dementia react and the strategies they used while being assessed using validated measures.
These were: 'State of mind' and 'Mental resources'.

| State of mind
State of mind was observed as both positive and negative, with a positive outlook supporting the person with dementia to find the assessment process less stressful. There is a question paper on the table and R has a pencil which she is using to show the questions. R asks the Self-efficacy question. P is leaning forward and has one hand on the table holding a pencil and the other is held up against her mouth. She is looking at the paper.

| A positive state
It feels as though the atmosphere is relaxed and they both seem at ease.
Self-Efficacy-When I meet a problem, I am able to identify several solutions.
P leans back and adjusts her clothing and then leans forward again in the same position. There is a pause as P thinks.
It feels as if R is giving P time to think as P seems to be concentrating on how to answer the question.
This is an example of facilitation as it recognizes that a person with dementia needs time to understand and process through their answer.
P moves her hand from her mouth to the table and talks about a previous answer and that her answer now is going against the previous answer. She points towards the paper as she talks and is looking at the paper. There is a slight joking tone in her voice and a slight smile.
It seems that P is questioning herself and her previous answer. It does not feel as though P is upset by this as she smiles and has a jovial tone to her voice. It may be that the paper is being used by P to recall her previous answer as she points to it and is focused on the paper.
There is recognition and recall by P of her previous answers. This moment shows that P is reflecting on the answers and remembers her answers. The paper acts as visual clue to support P's attention, focus and memory.

| Mental resources
Participants were observed to use the mental resources of reflection, humour and bodily movement. All the participants at times were engaged and concentrating, showing different skills to help complete the assessments.

| Reflective skills
Reflective skills were observed in many participants.

| Supporting concentration
The participants took the tests seriously, and these were completed without breaks (although these were offered), and by asking questions. Their concentration was particularly noticeable by their use of physical contact with items, such as pencils or test paper. Here the items seemed to work as a physical prompt or sensory stimulus.
For example, when Knud responded to the self-efficacy question 'I am able to do things as good as most people' (video 71), he was observed to follow the questions with a pencil and took time to think through his answer. The test paper for all the measures, apart from the MMSE, was placed on the table for the participant to see. Some used this, reading the questions, and pointing or touching the paper as they responded. The visual cues provided by the paper and pencil were observed to support their ability to answer.
Participants were also observed to use pauses, and look to the side before answering a question, seemingly to give their response consideration and make sure they gave an accurate account of their experience. However, looking off to the side also led to a loss of focus as the participants could lose track of the question asked.

| Shared connection
Participants often looked at the researcher for confirmation or support when answering the questions. This sense of shared connection was also evident through their use of humour, which was observed with some participants making a joke about the question or their answer. This seemed to act as a coping strategy to mask their insecurity or difficulties in undertaking the assessment.
Bente was joking about her handwriting, commenting: 'my writing is  Another key strategy was the use of touch and movement to support people with dementia, whether this was through fidgeting, hugging themselves or touching the table and/or the answer sheet.
This worked to ground the individual in the moment and act as a comfort and memory aid. People with dementia have been observed 28 to use touch to connect in the moment and that this can support the sharing of memories, while the touch of paperwork or holding a pencil can support attention and concentration in a research context. 29 Such connections may indicate increased physical and cognitive arousal, and fidgeting has been associated with increased motor and sensory activity in the brain. 30  Stress can support our decision-making and social interactions, however, too much can negatively impact our behaviour and our cognitive function. 31 One way to manage stress is through tactile stimulation. 31,32 Self-touch has also been associated as a coping mechanism for managing stress, such as hugging oneself or touching a face or hands. 31 Skovdahl et al. 32 describe touch as a way of supporting communication, particularly nonverbally. Therefore, the provision of a pencil or paper as a tactile object for people with dementia to use, and an understanding of body language may be a way of supporting people with dementia in undertaking an assessment and helping them to answer to the best of their abilities.
Humour was observed to work as a coping strategy when This use of humour may be expected as people with dementia use humour as a form of tension release when under stress. 36 However, the use of humour by people with dementia is also considered a natural part of their communication, 38 and that humour is a strategy which is used as an expression of their 'personhood and autonomy' (p. 341). Humour has also been shown to make it easier for mistakes to be made, to laugh about these mistakes and to relieve stress when being with other people. 29 While much of this research has been carried out in clinical settings, the effect of humour is similar to that which was observed in this present study and eased tense situations, supported decisions and showed individual personalities. The use of humour was a coping mechanism that could be adopted to provide a more comfortable setting and ease relationships to aid the assessment.
What is starting to be evidenced is that many factors can impact how people with dementia respond to validated measures. These factors can aid their responses but also may be detrimental.
Differences in personality, mood, ways of interpreting questions or response options or responding nonverbally can all influence the final assessment score. As an example of this, in Scandinavian countries there is a cultural law-the Law of Jante-that is drawn from Sandemose 39 and in Anglo-Saxon societies as the 'tall poppy syndrome'. 40 This sets out certain personality and cultural ways of being, for example, not thinking too highly of oneself, or boastful of one's successes. 39 In an ethnographic study 41  The production of guidance to ensure a robust and open process is followed would be a valuable resource. An example from the findings of this study also highlights the need for people with dementia to be involved in the use of and design of validated measures.
The authors acknowledge that while some findings from this study may be expected, the way that validated measures are experienced by people living with dementia is not often considered in the literature. Therefore, it is not known if or how researchers or clinicians take account of mood, personality, and so forth, when conducting assessments. The authors believe that this is an aspect that could be more openly discussed as it can impact the outcomes for evidence of the impact of an intervention, but more importantly,

| Limitations
The key limitation is the number of videos analysed in this pilot analysis. The ability to generalize the findings is limited, however, this study has provided novel information on a situation that is not often  What this study provides is insight into the assessment process, highlighting that there may be more to consider when interpreting findings from validated measures and that there are approaches that can support the person with dementia to manage what can be a potentially stressful situation.