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Dementia is an exceptional y distressing neurodegenerative condi-tion, for families and for patients and with an ever-increasing ageing population in Britain, its incidence is on the rise. Its economic cost is estimated by the Alzheimer’s Society to exceed £23 billion per annum; its emotional cost is incalculable. Although research unravelled new clues to how and why the disease progresses, a huge amount of work still needs to be done to understand the disease and a huge effort has to be made to accommodate these patients.
On March 26th 2012 Prime Minister David Cameron has issued a national challenge on dementia and committed to improve health and care, create dementia friendly environments and double the funding for research on dementia1. There are currentlyover 700’000 persons in the UK2 living with dementia. Referringto the demographic trend (in 2030 half of the world’s populationwill be aged 50 and over) the number of people affected by it will fatally increase, and might ask us all sooner than expected to take on responsibility, engage with the topic and prepare for the chal- lenge on a personal as well as on a social level. Dementia affects 1 in 20 people over the age of 65 and 1 in 5 over the age of 80. Worldwide there are an estimated 35.6 million people living with dementia. By 2050 the number will rise to over 115 million.3 Many people are confronted with dementia, but there is not yet an open public dialogue on how we deal with it. It is still taboo to openly talk about mental diseases or death, or any kind of progress 1 Department of Health. Dementia Challenge. http://dementiachallenge.dh.gov.uk/about-the- 2 Alzheimer is the most common form of dementia (over 50%). Department of Health: http:// www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_094051.pdf (accessed 25.03.2013) 3 Alzheimers Disease International. The global impact of dementia. http://www.alz.co.uk/media/ towards a loss. Design though can open up new paths to commu-nicate aspects of dementia. The project Nuts on Circles emphasises on the potential of designed objects to create moments where the human abilities on an emotional rather than on an intellectual or success-led level are addressed. A special focus is set on potential of haptic and sound in relation to procedural memory.4 This allows high-lighting positive aspects of a situation when living with dementia. The term ‘dementia’ (latin: de-mens translated as away from rea-son) describes a set of symptoms of loss of cognitive abilities, which include loss of memory, mood changes, problems with communica-tion and reasoning. These symptoms occur when the brain is dam-aged by certain diseases.5 There are about 70 different types of diseases that can cause dementia, such as vascular and multi-infarct-dementia, Lewy-Body-disease, Parkinson, Fronto-temporal-disease, Chorea Huntington, Creutzfeld-Jakob-infection and others. Though with about 55% the most common form is Alzheimer’s disease: The decay of neu-rons (nerve cells) in the brain (cortex) results in loss of grey brain substance; that causes the cerebral matter to shrink. This leads to the deposition of proteins (amyloid plaques, consisting of fibril- Twisted strands of proteins and cell agglutination (plaques) cause a decrease of synapses between the cells and decline of neurotrans-mitter Acetylcholin. As a result information is not stored and pro-cessed efficiently.6 As amyloid plaques destroy the brain capacity for communica- tion between the nerve cells, the following symptoms do appear: memory and language disorder, disorientation, behavioral and per-sonality disorder, restlessness, hallucinations.7 4 http://www.sciencedirect.com/science/article/pii/S0028393212003910 and http://agingwellmag.com/news/story1.shtml and http://cercor.oxfordjournals.org/content/19/11/2579.full?keytype=ref1&ijkey=odjcdhE8j4ugMRU andhttp://onlinelibrary.wiley.com/doi/10.1002/14651858.CD001120.pub2/abstract;jsessionid=C9281E2014C54C097BF3C765241DF306.d01t04 5 What is dementia? http://alzheimers.org.uk/site/scripts/documents_info.
6 translated from German original: Ursula Jucker. Grundwissen Demenzkrankheiten. Cura Viva course paper . Bauma: Ursula Jucker, 2013) 7 ‘Die Reise ins Vergessen – Leben mit Demenz’. Der Spiegel Wissen. Nr. 1 (Hamburg: Spiegel- There is no cure for Alzheimer’s disease. Medicine such as Ari- cept, Exelon, Reminyl, Axura, Ebixa do not stop the disease, but can slow down the degradation of the nerve cells and thus help patients to keep daily life competences. The development of the disease is progressive and lasts about 7-10 years in average. Rituals and repetitive activities offer the patients an essential security. Automa-tised actions are maintained for a longer period. Same is true for the capacity of the five senses, as they are preserved much longer despite cognitive loss. Moreover emotional episodes seem to be kept longer than intellectual knowledge. 8 Christoph Held, doctor and former director of a care home, set up the theory of the three-world-model that divides the progress of the disease in three stages9: 1) Welt der kognitiven Erfolglosigkeit - World of cognitive failure First the patient is confronted to the loss of short-term memory.
He experiences confusion, poor judgment, unwillingness to make decisions, anxiety, agitation or distress over perceived changes and inability to manage everyday tasks. Problems with cognitive capacity and reactive disorder occur. At this stage therapy tries to allow an environment of a ‘normal’ life form, with alternation of activity and relaxation, socializing and retreat, private and public space. The feeling for co-residents and the sense of social manners are still intact, but easily unsettled. The appreciation of personal possession and privacy are retained.
2. Welt der kognitiven Ziellosigkeit – World of cognitive aimlessness Then, the patient will show motoric compensation for the lost of executive functions. He develops feeling out techniques, hapti-cal exploration of furniture and objects, walking through the 8 Ursula Jucker. Grundwissen Demenzkrankheiten. Cura Viva course paper . Bauma: Ursula Eine zukunftsorientierte Betreuungsform für Menschen mit Demenz: das Wohngruppenkonzept “Clara Zetkin”: eine Betrachtung aus konzeptioneller, pflegewissenschaftlicher und betrieb-swirtschaftlicher Sicht in den Jahren 2002 bis 2003. (Norderstedt: BoD – Books on Demand, 2007) 35-37.
rooms. Regarding communication and social abilities, conflicts determine relationships between residents, as jealousy and disin-hibition emerge. The sense of ownership and privacy disappear. The person with dementia is no longer able to keep oneself busy, rooms loose their function and does no longer relate to his own room. The patient increasingly gets forgetful and fails to recog-nize people. He may experience hallucinations.
3. Welt der kognitiven Schutzlosigkeit—World of helplessness The third stage describes functional and physical regression to early childhood-like stage, with extended aphasia, immobility, chewing and swallowing disorders, incontinence and neurologi-cal symptoms. The Patient lives in a ‘small world’ in the circuit of the bed or the position. He is no longer able to recognize familiar objects, surroundings or people—but there may be some flashes of recognition. At this stage the patient dependency on care is increased and he relies on moderated stimulation through basal stimulation.10 Text by Annina Gähwiler, London, [email protected] www.nuts-on-circles.com 10 Design Council, CABE. Design Challenge: Living well with dementia – supplementary informa- tion report. (London: Design Council, 2010)

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