When people are faced with a close relative in the later stages of dementia they sometimes use phrases such as "I feel like I've lost my mother" or even "He's here in body but his soul has gone". It is understandable that people feel acutely distressed and grieve for a person who has changed and is no longer how they were, but the person with dementia has not died. They have become different because of an illness that affects how they can relate to the world. No one would argue with the premise that they still deserve the opportunity to make the most of the rest of their lives. We do not deny people with learning difficulties the right to a joyful life because they cannot hold a ‘proper' conversation with us. We try and adapt how we relate to them to suit their abilities. We need to do the same for those with dementia and provide resources tailored to these differing abilities.
Why is there so much emphasis on reminiscence activities and ‘therapies' for people with dementia? It seems in some ways particularly perverse that a favoured activity provided for people with severe memory problems, is based on memory. Clearly reminiscence activities can have many benefits for people with dementia allowing them to hold on to their sense of identity, while also helping relatives and carers feel that the person they knew is still there.
However, this is only one small part of what we need to provide for people with dementia. Many activity organisers and relatives, work exceedingly hard to try and provide residents with a range of activities to help to fill the long days. However a lack of suitable and attractive resources, the relevant training to go with them and a shortage of time to spend with individuals are hampering their efforts. When the numbers of people with such cognitive disabilities in our society is comparable to the numbers of pre-school children, why is there such disparity between the levels of resources provided for these different groups?
The response to Pictures to Share's range of illustrated books for people with dementia has shown that there is a latent demand for resources that are not focussed purely on reminiscence. The books are illustrated with large, powerful images and supported by a small amount of large print text allowing readers of all ages and interests to relate to them in a number of ways. The books help to improve communication with relatives and carers. Fascinating conversations may be triggered by images that tell stories, by the colour and beauty of an image or by emotions that arise in the reader when looking at the books. Most importantly, unlike reminiscence material, the books don't demand that people remember who they were; they just allow them to be whoever they are now and they allow carers and relatives of different ages and backgrounds to be on an equal footing. When carers also enjoy looking at the books it encourages them to spend quality time with residents looking at the books together.
Some of the book's specifically selected images and texts will prompt people to talk about the past, but they do not assume that this is all people want to talk about. The books may encourage a conversation about how a person feels about their life as it is now, about what might be going on in the image, or they may just amuse and create some precious moments of shared laughter. These books illustrate that people with dementia have much more to offer than just their history.
This belief is also held by others who are working on the new and exciting Elise Pilkington Library Project investigating the benefits of introducing small mobile library units into dementia care facilities. The Elise Pilkington Charitable Trust, Methodist Homes for the Aged, Innovations in Dementia C.I.C. and Pictures to Share C.I.C. are working together to try and improve the environment that exists in many care homes, in which there is a lack of suitable books made available for those with dementia and their carers or visitors to share. As far as the team is aware, this is the first project of its type to take place in the UK or overseas.
The Elise Pilkington Library Project has initially put small library units containing sets of Pictures to Share books into each of five MHA dementia care homes across the country. Two members of staff from each home have been trained as ‘reading champions' and are developing the use of the books within their home. Initial findings show that when using the books, care staff have in many cases, been delighted to witness the surprising responses of those with advanced dementia. Some have discovered in residents unknown capabilities such as an ability to read. This can have a positive impact on staff and lead to a better understanding of the residents and their needs. Having the books easily available has also increased interaction between residents and has encouraged care staff to take time out from care tasks to spend quality time sharing the books and communicating with residents. Relatives appreciate having books readily available to help with communication during visits, and the residents themselves enjoy the books whether looking at the pictures, reading the words or just enjoying the comfort of holding them.
It is a very rare sight to see a range of suitable and attractive books on display in care home dementia units, never mind being easily available for residents and their visitors to use. Why? Is it the misconception that people with dementia can no longer read or enjoy books, or the worry that some people with dementia will damage them? Perhaps it is the lack of suitable books or money to buy them? Maybe it is just that staff have no time to research and find anything suitable, or a manager's concern that staff time is not available to sit down for ten minutes to look through a book with a bored resident?
Now that there is a growing range of titles suitable for people with dementia there is no reason why every care home dementia unit should not be provided with an attractive, interesting and varied library specifically for the use of residents. The findings of the Elise Pilkington Library Project should provide care homes in the UK and overseas with the evidence and confidence needed to develop their own successful libraries for residents so people with dementia can once again enjoy having the dignity of choice.