Face to face is a 52-minute video tape with an accompanying 24-page booklet giving detailed information on the stages of dementia and appropriate supports for individuals with learning disabilities and dementia. The tape was filmed in group homes for elderly persons with learning disabilities in Belgium, The Netherlands and Luxembourg; the text is in the local language, with English sub-titles. The booklet is a translation from the Dutch. It was written by an educational specialist, a physician and an epidemiologist, with modifications by Steve Moss (Institute of Psychiatry, London) and Patricia Noonan Walsh (Centre for the Study of Developmental Disabilities), National University of Ireland, Dublin). The project was undertaken with the support of the European Commission, the CSDD, the Pepijn Centre (Echt, The Netherlands) and Fondation de France (Paris).
The booklet defines dementia as ‘a syndrome due to disease of the brain, usually of a chronic or progressive nature, in which there is disturbance of multiple higher cortical functions including memory, thinking, orientation, comprehension, calculation, learning capacity, language and judgement. The condition is usually accompanied by deterioration in emotional control, social behaviour or motivation’. Prevalence figures (both for those with and without Down syndrome), and descriptions of several causes of dementia are given. The well-documented relationship between Alzheimer’s disease and Down Syndrome is discussed and other similar, but treatable, disorders are also described. Case stories are used to illustrate symptoms of persons with intellectual disability who have dementia. There are descriptions of the four general stages of dementia (Alzheimer’s): malorientation, time confusion, repetitive motion, and vegetation.
The booklet also presents a model of care for people with intellectual disability and dementia, and outlines the ‘phenomenological approach’ used in the Pepijn Centre. This approach is intended to make the life of the individual as well and happy as possible, focussing on individual experience, need and wishes. Massage and sensory stimulation (snoezelen) are used. Direct care staff are trained in ways to improve their understanding and care techniques for individuals with dementia. The booklet also discusses the importance of terminal care and bereavement, particularly in group-home settings.
The video strongly reinforces the information contained in the booklet’s printed format. It shows direct-care staff dealing compassionately with older adults with dementia in their daily living situations, and expresses the carers’ sadness at the increasing loss of function in people they have known for some time. Staff training sessions are also shown.
Face to face is a valuable resource for carers of adults with dementia and for direct-care staff in similar settings. As stated by a doctor in the video: the diagnosis of dementia in individuals with intellectual disabilities is sometimes difficult, but once the diagnosis is definitive, it becomes ‘simple’–one must adapt to the person’s diminishing capacities and help to make his/her life simple. This subject is not an easy one for the reader or viewer, but both the booklet and video advocate ‘respectful coping’.