Helping people with dementia
A unique collaboration between a designer and an occupational therapist has helped shape ways of caring for people with dementia.
Over 800,000 people in the UK are living with dementia and this figure is expected to double in the next 40 years. Psychological and behavioural symptoms such as challenging behaviour and depression are often treated with standard medication. There are, however, a number of approaches for non-pharmacological interventions including Multi Sensory Environments (MSEs). This has been the subject of an interdisciplinary research project led by Dr Anke Jakob, Researcher in Design at Kingston University London and Principal Investigator on an Early Research Grant running from March 2013 to November 2014. Together with Co-Investigator Dr Lesley Collier, Senior Lecturer in Occupational Therapy at University of Southampton, Jakob has been examining the provision of multi sensory stimulation for older people living in residential homes in England, and how MSEs are understood and facilitated by care home staff.
Jakob is a textile designer by background, and also worked in digital media within an architectural practice. Exploring how people engage with sensory experiences during her PhD, Jakob’s research interest then led her to focus on creating therapeutic environments and meaningful multi sensory experiences for people with limited cognitive ability. Collier, on the other hand, is a HCPC (Health and Care Professions Council) registered occupational therapist who has worked extensively in the fields of neurology and dementia care, and their collaboration is what has really strengthened the research project’s aims and impact.
The MSE, sometimes also called 'Sensory Room' or 'Snoezelen', provides gentle stimulation to the senses of vision, touch, hearing, smell, taste and movement in a controlled way. Originally developed in the Netherlands in the Seventies, the concept aims to help people with special sensory or physical needs, such as individuals with autism, special educational needs, recovering from stroke, or people in later stages of dementia. Collier found in her own research that if a sensory environment was adapted to the individual needs of people with dementia, improvements in performance, mood and behaviour could be achieved. “Results showed that 74% of people who took part in the study improved in motor performance — their ability to undertake everyday tasks — and 63% improved in cognitive tasks — their ability to remember, problem solve and judge what to do in everyday activities”, she says.
Jakob’s decision to centre her research on dementia care was influenced by earlier work carried out at Kingston University. The research and subsequent publication of Living with dementia: can design make a difference? (2010) by Professor Hilary Dalke and Alessio Corso had uncovered the fact that, whilst many care homes had an MSE, they were often left unused. Teaming up with Collier, Jakob wanted to find out why these rooms had been installed, but then become neglected. And further: what would help with the tasks and challenges care home staff face every day — “because they are the people who work with the residents and facilitate multi sensory stimulation. Staff need to know why and how to do it, otherwise there’s no point in having a multi sensory space.”
The project partner for this research was one of the UK’s leading independent providers of health and social care services, Care UK, with Maizie Mears-Owens, head of dementia, helping the research team as an advisor. Mears-Owen, who trains staff caring for residents with dementia, was very keen to come on board. "We fully appreciate the need for meaningful stimulation and creating relaxing, calming spaces where people living with dementia can ‘just be'. For someone with dementia, the world can become an increasingly small and closed in place”, she says. “When Henry, one of our residents, listens to music he can relate to, you see him light up and open up. Sometimes he’s singing. You see him blossoming in front of your eyes.” Over time, staff have helped him build soundscapes through a pair of headphones; the music that stimulates his sense of hearing also helps to evoke his memories. This in turn enhances Henry’s level of alertness, his interest in the world, and also gives him a way and a reason to engage with other people.
Over a period of 6 months, Jakob and Collier visited 16 care homes in London and South England, conducting semi structured interviews with 32 care home staff and examining the existing facilities and how multi sensory stimulation is provided. While observing how residents reacted to the multi sensory rooms, which can cost the home sometimes as much as £5,000 to install, it became apparent that their design needs a significant rethink if they are to be of benefit to people like Henry. Disco balls, often found in MSEs in care homes, are unlikely to be helpful to an older person with weakening vision and decreasing cognitive abilities, Jakob points out. “Fast spinning lights reflected on the wall and floor may be mistaken as animals or insects moving around, which can be very irritating and rather stressful for someone with dementia,” she explains.
“The level of light in the room is another aspect that needs to be considered. I attended a session where a woman was brought in who wanted to leave immediately because it was too dark for her." In retrospect, the problems seem obvious. Someone with dementia, who is unsure of her environment anyway won’t feel safe and comfortable when moved from a bright corridor into a dark room. An older person’s eyes are not able to adapt quickly enough to sudden changes in brightness, and as a result he or she feels afraid and stressed. If a darker room is desired for a sensory session, the level of light needs to be dimmed slowly.
Jakob’s research took her to Finland to visit Sari Hedman, a care home manager in Helsinki who was also previously a textile designer. Hedman has approached sensory stimulation in a radically different way, setting up multi sensory rooms in several homes she worked with. “She used lots of textiles and turned these rooms into really soft spaces, using sheepskin, very tactile soft furnishings and careful lighting,” says Jakob, “much more user friendly and appropriate for this age group.”
“The examples in Finland prove that you can make these rooms much more of a normal, familiar environment, less like a ‘spaceship’ or ‘disco’ as we found in some of the homes, using more inexpensive, cost-effective resources.” Jakob states. “It might be enough to install a projector and show a calm film of the seaside or the forest. Familiar and comforting objects, interesting things to smell and taste, sounds from the natural world, can all have an important part to play. These should be spaces offering stimulation in a way that is not stressful for the person experiencing it — places where the individual can very much be in control and relax.”
There is, Jakob concludes, no single solution that will work for each individual living with dementia, or staff member, or care home. Therefore, she and Collier have created a guide to ways of thinking how to design a sensory space. It offers advice on how to meet the specific needs and preferences of individuals living with dementia and aims to equip carers, care workers and staff in care homes with ideas and materials in order to provide appropriate multi sensory stimulation and environments.
Going forward with the research, Jakob and Collier are now planning to set up a MSE to their own design and to involve people living with dementia in their investigation.
All images courtesy of Dr Anke Jakob