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Presenter(s)
Norman Alm(1)
Richard Dye(1)
Arlene Astell(2)
Maggie Ellis(2)
Gary Gowans(3)
Jim Campbell(3)
(1) Division of Applied Computing
University of Dundee
DD1 4HN, Scotland, UK
(2) School of Psychology
University of St Andrews
KY16 9JU, Scotland, UK
(3) Department of Computer-Aided Design
Duncan of Jordanstone College of Art and Design
University of Dundee
Dundee, DD1 4HT, Scotland, UK
email contact : nalm@computing.dundee.ac.uk
Dementia
Caring for people with dementia will be a major challenge over the next few decades. The number of people with dementia is projected to increase due to demographic changes which are taking place worldwide. The number of older people proportional to the younger population is growing steeply, and the percentage of the population with dementia increases from the age of 65 to reach 1 in 4 people over 85 (Jorm, Korten & Henderson, 1987).
Dementia consists of a group of symptoms involving progressive impairment of cognitive abilities. The two major causes of dementia are Alzheimer's disease, which is a progressive loss of nerve cells and vascular dementia, which is loss of brain function due to a series of small strokes. The gradual loss of working (short term) memory is often the first symptom of the disease to be noticed. The loss of short term memory in elderly people as a result of dementia is a very serious problem for the person and for their family and carers. Many social activities and interactions become increasingly difficult, as the condition progresses, since they depend on a functioning short-term memory for effective participation.
Problem of communication for people with dementia
Holding a conversation is very difficult without an effective short-term memory. People with dementia often have problems taking part in conversations. They will often repeat phrases that they have only just recently said, and can give the appearance of not listening to what is being said. This can be disempowering for the person and distressing for relatives and friends.
Reminiscence sessions are a useful way to structure interaction so as to maximise the positive contribution that can be made by a person with dementia. Although their short-term memory is impaired, the long term memory of a person with dementia is often still functioning even at the latter stages of the disease. By guiding and supporting the person to take advantage of long term memory they can be helped to take a more active part in conversations (Finnema, Dr"es, Ribbe & Van Tilburg, 1999; Woods, 1999). While very valuable, conventional reminiscence sessions involve prior planning and gathering of material, which is time consuming for busy relatives and carers, and the process of conducting these sessions can take a great deal of effort. Reminiscence sessions can be pleasurable and empowering for the person with dementia, but the experience for the carer is far from a relaxed natural interaction.
A hypothesis of this research is that suitably presented reminiscence material in the form of easily accessed hypermedia can be helpful in supporting people with dementia in taking part in conversations. We have developed such a hypermedia- based system that is designed to offer prompting and support for conversation between a person with dementia and a relative or carer.
A multidisciplinary approach to the design of this system was essential to accomplishing this complex task. The development team had members from the fields of design, software development, and the psychology of dementia. Part of the working method of the project was to weld this group together as an integral team, with significant overlaps in responsibilities and development areas.
Prototype development
An iterative design approach was used to develop the first prototype. Forty people with dementia were identified who expressed an interest in helping us to design and evaluate the system. Thirty relatives and carers also agreed to take part as advisors and evaluators for the project. As a first step, we asked the group to comment on potential content for the system. Ideas for themes the system might include (such as national events, local industries, street life, celebrations) were suggested by means of high quality photographs. Using the photographs as prompts, discussions were held with people with dementia and their carers to help decide on the best choices for content for the system.
As part of the hardware platform for the system, a large format touch screen was used. This was the only part of the hardware visible to the users. Touchscreens have proved to be a suitable form of input for a wide variety of people who would not be comfortable with keyboards, mice or other pointing devices. A touchscreen is intuitive to use and does not require fine muscle control to operate. Previous work, by ourselves and others, has established that people with dementia can usually manage to make use of touchscreens. The direct sense of manipulation they provide seems to offer enough affordance that, with encouragement, they work very well even with people who have fairly severe dementia (Alm, Astell, Ellis, Dye, Gowans & Campbell, 2003).
The three reminiscence themes chosen for the prototype were : Recreation, Entertainment and Local Life. Users could explore these themes by accessing photographs, music, videos, and short multimedia presentations incorporating music, graphics, and photographs.
Evaluation
An evaluation was performed to determine if the system was effective and how it compared with traditional reminiscence sessions. Eighteen people with dementia and their carers took part. Each person with dementia and their carer undertook a twenty minute reminiscence session: nine using the prototype, and nine using traditional reminiscence methods. The carers were asked to complete a questionnaire at the end of each session. All the sessions were video recorded, and all the items accessed using the prototype were logged. A protocol was developed for observing and recording behaviour during the sessions, to identify the degree of participation, engagement and enjoyment of the experience.
The results of the evaluation sessions were:
1. The system was accepted and enjoyed by both people with dementia and carers.
2. The system successfully supported conversation for people who find it impossible to carry out a conversation normally.
3. Using the system, compared with traditional reminiscence session, created a more equal communication event, with both participants contributing and controlling the conversation. This was an unanticipated and welcome finding.
Conclusions
We have demonstrated that a system using high technology actually adds something new to a reminiscence session. Before this system was developed it was entirely plausible that conducting a reminiscence experience supported by a computer delivering multimedia would in fact not have any particular advantages over using traditional materials. Our evaluations of the prototype system have shown that such an approach can not only be readily acceptable but can have considerable advantages over traditional methods, and not just in the convenience in the delivery of various media. People with dementia were helped to take a more active role in directing the session. The support provided by the system produced a more enjoyable conversation for both the person with dementia and the carer.
References
Alm, N., Astell, A., Ellis, M., Dye, R., Gowans, G., Campbell, J. (2003) A cognitive prosthesis and communication support for people with dementia. Journal of Neuropsychological Rehabilitation, Vol 14, Nos 1-2, pp 117-134.
Finnema, E., Dr"es, R-M, Ribbe, M., Van Tilburg, W. (1999) The effects of emotion- oriented approaches in the care for persons suffering from dementia: a review of the literature. International Journal of Geriatric Psychiatry, Vol 15, pp 141-161.
Jorm, A.F., Korten, A.E., Henderson, A.S. (1987) The prevalence of dementia : a quantitative integration of the literature. Acta Psychiatrica Scandinavica. 76, pp 465- 479.
Woods, R. T (1999) Psychological therapies in dementia. In R. T. Woods (Ed.) Psychological Problems of Ageing. Chichester: Wiley.
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