Picture perfect: connecting with people who have mid to late stage dementia.
In this article Helen Bate explains why using pictures as a means of communication is so important.
Dementia causes intellectual abilities to decline, so meaningful verbal communication becomes more difficult. Conversation often goes round in circles or becomes limited to fewer and fewer subjects as the world of the person with dementia shrinks. By the time a person with dementia enters a care home or hospital this difficulty in communication may be even more pronounced. Care staff can often be left unaware of many aspects of an individual’s personality, interests and experience, even when they are able to find out some information from relatives. In some cases there may be no relatives to provide any background information or a person may be admitted in a situation where there is little time for thorough background information to be taken.
Anyone with experience of living or working with someone with mid to late stage dementia knows how hard it is for those affected to formulate ideas and thoughts, to verbalise these and to make people understand. Family, friends and carers often find it hard to know what to say and how to respond. People with dementia ‘become more and more unaware of the world and of themselves, until they eventually slide into a meaningless present with a fading past and no future’ (Laureys and Tononi, 2009).
Our everyday communication with others is usually complex and fast paced, and this style of communication cannot work with those with mid- to late-stage dementia. Kitwood (2000) defines this type of communication when dealing with those with dementia as one aspect of ‘malignant social psychology’, as ‘outpacing’, or ‘providing information, presenting choices, etc., at a rate too fast for a person to understand’. However, with the right approach and understanding, it is still possible to achieve meaningful communication even in the very late stages of dementia.
In her work with people with dementia in Methodist Care Homes, Chaplaincy Advisor Rev. Margaret Goodall believes that meaningful communication that connects to a person’s feelings can leave participants with a sense of wellbeing.
‘The moment is all that we’ve got, and the feeling that is brought about through the moment carries on into the rest of the day.’ (Goodall 2011) In this way, although within a few minutes the person with dementia may have forgotten the ‘conversation’, the sense of wellbeing and happiness generated continues for much longer.
Prof Elizabeth McKinlay, from Charles Sturt University, Queensland, Australia who has an international reputation for her work on spiritual reminiscence and dementia, also understands the importance of linking to the deeper, more meaningful aspects of an individual’s personality.
“People with quite marked cognitive deficits can still respond to matters of meaning, while they may find it hard to answer questions that call for remembered facts.” (McKinlay 2012)
Indeed, it appears that the experience of emotion can operate largely independently from memory, even though the two processes are often perceived as being fused together within our stream of consciousness. (Feinstein et al, 2010)
Without regular positive interaction and lifting of mood, many problems can arise. There is a strong association between the lack of meaningful activity and the presence of depression and challenging behaviours. Trials have shown that activities such as music, exercise and art are associated with a significant reduction in behavioural disturbances (Livingstone et al., 2005).
Kitwood (2000) explains how high levels of meaningful communication can achieve good results even in the late stages of dementia: ‘Even when the ravages inflicted by neuropathology are at their most severe, at least some of the hopelessness and fear can be mitigated.’
Communication with someone with dementia depends on first engaging their interest and getting their attention. The use of pictures is one of the most effective ways of doing this, regardless of age, sex or ethnicity. As Walt Disney is reported to have said ‘pictures still speak the most universally understood language.’
However, people with mid- to late-stage dementia have a range of problems that can impact on their understanding of what they see. Evidence increasingly shows that there are significant disturbances in visual function in Alzheimer’s disease and other types of dementia. ‘Vision difficulties can result in a variety of 'visual mistakes' (including illusions, misperceptions, misidentifications and sometimes even hallucinations). They can cause a person with dementia to misinterpret their environment and what is in it’. (Alzheimer’s Society 2012). Pictures to Share’s own unpublished research shows that there may be problems with visual clarity and contrast, colour vision and perception of depth or three-dimensional objects. These problems are generally more related to disturbances in the brain than any physical problem in the eye or the optic nerve (Trigg and Jones, 2005).
The brain is a complex organism and even without dementia it would suffer from information overload if it did not continually process what an individual sees. This is done by selecting, unconsciously or consciously, what the individual gives his/her attention to. The individual can then cope with the information overload by only dealing with the part of it that has been selected (Laureys and Tononi, 2009).
This process of selection in the brain is split between ‘bottom-up’ or ‘top-down factors’. Bottom-up selection is primarily an automatic or emotional response controlled by features that transiently attract attention, for example, a strong image with powerful colours, motion, depth or texture.
Top-down selection is dependent on working memory, and being able to detect and discriminate between unexpected and unfamiliar stimuli. This can be simply illustrated by considering the ‘bottom-up’ or unconscious response involved in seeing the two different colours, yellow and green. Top-down brain activity accesses these feelings, and uses factors like memory and reasoning to understand the difference (Laureys and Tononi, 2009).
In the research carried out by Pictures to Share this could be illustrated by the response of an individual to a powerful image of a bluebell wood. The ‘bottom up’ response may be an immediate attraction to the image because of the strong, beautiful colours, and even the instinctive emotions invoked by a dark woodland scene. The ‘top-down’ response may lead to conscious thoughts about the location of the wood (in relation to the individual’s own experience), personal memories of picking bluebells, or even relating the image to the fairytales heard in childhood.
As well as possible physical problems with vision and sight defects, people with mid-to late-stage dementia have difficulties primarily with processing what they see in a ‘top-down’ sense. They can be overwhelmed by the complexity of the image and lack the neurological capability to interpret it or select only the information that they need.
Therefore, to overcome the difficulties in mental processing that people with dementia face, the images used for people with dementia need to be carefully selected and adapted. By using images without too much visual complexity an image can be made more accessible and therefore enjoyable for someone with dementia.
This can be done by selecting large and relatively simple images with clarity, bold colours or contrasts. In their work, Pictures to Share avoid using any images with poor definition or lighting, confusing shadows or backgrounds, three-dimensionality or depth, overlapping of objects or difficult viewpoints.
To allow the best opportunity for understanding an image, people with dementia also need to be given time to understand what is presented to them, and they need ideally to be able to control the pace of the experience.
To hold their attention, people with dementia need images that appeal to their own particular taste, and that are relevant to their life experience both past and present. When a carer knows as much as possible about a person, choosing pictures to show them is made easier. However, assumptions about what a person with dementia will like or dislike should not be made. In the same way that everyone has their own likes, dislikes, interests and hobbies, so too will people with dementia. Most people with dementia retain their critical powers and opinions, even though they may have difficulty being reflective about what they see (Zeisel, 2010).
Pictures to Share’s unpublished research revealed that the power of any image to engage an individual with dementia lies, not only in the visual and neurological accessibility of the image, but also in any of the following.
• Beautiful and vivid colours or subjects
• Strong photographic or painting style
• Human or animal subjects looking directly out at the viewer
• A strong sense of narrative that encourages story telling
• A strong line or sense of texture that will encourage tactile exploration
• Showing of positive emotions such as happiness
• An element of humour that does not demand sophisticated interpretation
Images to be avoided include anything that could be disturbing for someone with dementia such as people in an aggressive or distressed state, or showing vulnerable people or animals at risk. These can lead to feelings of anxiety or distress that people with dementia may be unable to rationalise.
To connect meaningfully with a range of people with mid- to late-stage dementia, images should show a variety of topics. In his book The Comfort of Things (2008), Daniel Miller researches objects that have strong significance to 30 people living in the same street. Even in this small sample, the diversity of characters and lives is huge. But for all of these people, there are some aspects of their personal life experience and meaning, not their shared cultural life that they have in common. Relationships, landscapes, pets, gardening, DIY, cooking, clothes, sport, literature, music, nature, the sea; these are just some of the broad topics that everyone has some knowledge and experience of and that may be of particular importance to some. When people have dementia, they may be unable to express verbally the significance of subjects or topics that are important to them and without a cue of some type, this may never become apparent to carers. Images can act as that cue whether the person responds by talking about their feelings about whatever is in the picture or if they can only show a silent but intense (and unexplained) interest or dislike.
The personal relevance of an image to an individual’s emotions or spirituality, not just their factual life history is key to connecting with their deeper emotions and encouraging more meaningful communication. Without knowing a person well, it is almost impossible to predict what images may prompt a positive, or a negative, reaction.
By linking images with suitable short texts, staff can reinforce or expand the messages within the pictures.
When a carer is going to use Pictures to Share books with a person with mid to late stage dementia, the ideal way is to use the book on a one to one basis. By sitting comfortably and closely together and by offering the book by saying, “Shall we have a look at this?” a feeling of sharing and intimacy is created. The carer should help the person to open the book and turn the pages, allowing the person with dementia to control how fast to go or when to stop. Each page may or may not elicit a response. If the carer feels that the person needs encouragement, they can express their own reaction to the image or text. This might be “Doesn’t that look lovely?” or “He reminds me of my Dad” or by reading the text and responding I ways such as “I’ve never heard that poem before”.
The key thing is not to challenge the person by asking them factual questions such as “Do you remember that?” or “Did you have that sort of washing machine?” If the person cannot remember the information, they may feel that they have failed in some way. By drawing attention to what they cannot do the carer is putting them at a disadvantage. The idea of the Pictures to Share books is that both the person with dementia and the carer are both responding in their own way to the images and text. The books are not meant to be a memory test or even a reminiscence tool. Their value lies in their ability to connect with feelings, and interests, and this is true of both the carer and the cared for.
If the person with dementia seems to connect with a particular image they may want to talk about it, or it may remind them of something that appears to be totally unrelated. Then the conversation can lead anywhere. If that person has little or no speech they may hold the page down to prevent it being turned and they may just want to look at it for a long time. This should be respected by the carer without the need to try and question the person about what they are feeling.
Sometimes people like to stroke the page and carers often question whether a tactile book would be of use in this instance. People with dementia may remember well the sense of what things feel like whether it be fur, a baby’s cheek or snow, and so Pictures to Share believe they get pleasure from stroking a photograph without needing to feel the ‘real sensation’. One lady with late stage dementia would regularly and happily talk to and even feed a picture of a baby’s face in a Pictures to Share book. It was the power of that particular image that evoked that response, and it illustrates how powerful images can be.
If the books are to be used in a group session, they can be held up and different pictures or texts can be used as a starting point for discussion. This works better with a more able group where there is the potential for shared reminiscences.
Importantly, the books can also be used by people with dementia without the need for assistance. Some people will be able and happy to spend time flicking through the books, reading some of the texts, without the need for help from carers. Even so, it is nice for carers to show an interest and join in if that is what the person wants.
The way that images can make the job of a carer more rewarding and easier is illustrated by the following comments from two care homes:
“Residents that are very agitated and do not sit down for long have sat and looked at the books for long periods of time. Also residents that do not react to us have shown reactions to certain pictures. It’s allowed me to work with residents I’d previously struggled with.”
“We are a nursing home for residential and EMI nursing. We find these books are a wonderful activity. The books unlock something in the client’s minds, so they can then share their memories with us. They create conversation where some clients would hardly communicate.”
The way that books and pictures can help relatives to deal with the loss and sadness of dementia is illustrated by the following two quotes:
“My Mother is in the advanced stages of Alzheimer’s. She cannot string two words together and I often think she doesn’t know who I am. Visits to her are now easier and more pleasurable for me. She can no longer read but she tries. The other day we had to read the verse of ‘Sea Fever’ together over and over again.”
“When I was looking at the books with my mother, I felt as though we were communicating more as we used to, before dementia developed.”
The use of images with people with dementia is far more complex and potentially more helpful than most people realize. We are only now starting to understand how pictures can be used to aid communication even in the late stages of dementia, and how we can still connect with those who are exceedingly hard to reach. Through their research and practice, Pictures to Share has made many inroads into this new territory. In 2012 they are commissioning more new research that aims to take further the understanding of how people with mid to late stage dementia relate to the visual image, and how by providing them with the right material, we can break down some of the barriers that dementia create.
Helen J Bate B.A.Dip.Arch.B.A.(Hons)M.A.
Founder of Pictures to Share C.I.C.
Alzheimer’s Society 2012. Visuoperceptual difficulties in dementia
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McKinlay, Prof Elizabeth. From Annual Malcolm Goldsmith Lecture 2012
Finding meaning in the experience of dementia
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