Living with dementia
Everyone has a relationship with their environment. Each day we move about in space and time, relating to people, objects and places of meaning. Much of how we think about ourselves is reflected in our environment. Environments of our daily lives give us resources for presenting ourselves to the world around us.
It is the same for people with dementia. Even if their perception of time and space has changed, they live in a world where relationships, objects and situations matter. People with dementia may not be able to speak about the meaning environments have, but a sense of meaning and importance remains in their lives.
The experience of dementia
Dementia describes different characteristics around changes in the brain or cognitive capability. Most obvious is impairment of memory. Of many usually progressive and permanent dementias, Alzheimer’s disease is the most common (Brawley, 1997).
For people with dementia, their physical and social environments become more and more difficult with changes in cognitive capability. Dementia changes very much how people interpret what they see, hear, taste, feel and smell (US National Institutes of Health, 2002).
Anyone trying to create a dementia-friendly environment must first ask how people living with dementia experience their world. The Making Design Dementia Friendly conference (Stewart and Page, 1999) describes common features of living with dementia.
It impairs our memories:
- We can forget where we put things.
- We can forget what we have been doing even recently.
- We can forget people’s names, even people close to us.
- We can forget we have done something and so repeat doing or saying things.
- Our strongest memories may be for events from the past.
It impairs our reasoning:
- We can find abstract notions like money and value confusing.
- We can find the results of actions hard to predict.
- We can misunderstand the pattern on the floor.
It impairs our ability to learn:
- We can find new places disorienting.
- We can have difficulty getting used to unfamiliar objects or routines.
- We forget where basic things like the toilet are.
It raises our levels of stress:
- We can find large groups difficult.
- We can become anxious in situations we coped well in before.
- Too much noise makes us confused.
- It makes us very sensitive to built and social environments:
- We can be very sensitive to the emotional atmosphere.
- We benefit from calm.
We need good lighting to give us as much information as possible about our surroundings.
It makes us more and more dependent on all our senses:
- We may need to be able to smell, feel and see things.
- We can get agitated if we get too hot.
- We can get confused if there is not enough light.
Needs and abilities of people with dementia
The physical and social environments and structure of the organisation can work together to support the unique needs and abilities of people with dementia. A dementia-friendly environment helps people with dementia reach their full potential and does not cause needless disability. The result is quality of life for people with dementia, their families and staff.
There are five major needs of people with dementia, and they shape person-centred care.
People living with dementia may have a sense of loss, causing anxiety and insecurity. They need an environment of comfort and empowerment.
The need for attachment is strong in each of us, more than ever when we feel like a stranger in someone else’s environment. People with dementia need to feel a sense of belonging.
People with dementia can find it hard to be included in situations where others do not have the same impairment. Individualised care and physical settings help people feel they are part of a group.
Being occupied means being involved in everyday life. Carers and designers need to create conditions that support social involvement, drawing on people’s experiences,strengths and abilities.
A person with dementia is unique. A person’s life-story should be built into all interactions in the care setting (Kitwood, 1997).
The medical model of dementia is of mental decline. This approach makes it hard to focus on maximising a person’s abilities and improving their quality of life. Putting physical problems and emotional states down to brain damage, the medical model overlooks the social world of people with dementia (Cheston and Bender, 2004). Shifting from dementia as a physical condition to people’s experience of dementia gives options to create environments for actively joining in everyday life, rather than an environment of passive care.
Designing for people with dementia
The experience of a person with dementia tends to be overlooked in the design of residential and respite facilities. Living with dementia should frame design. This involves seeing the world through the eyes of people living with dementia, or ‘looking out from the inside’.
People with dementia do not experience themselves and their physical and social environments as separate. Each part, personal, physical and social, is in a lived relationship to the other. The physical and social environments of life are interlinked and equally important. They should be designed together to engage people, support independence and give meaning, comfort and safety.
What does it mean to be dementia-friendly?
It is widely recognised that a building and an environment can have a significant effect on a person with dementia. It can support them or it can hasten their deterioration (O’Sullivan, 2008).
The environment can support or hinder social connection and a sense of self: it can give utmost independence or force dependency. So too can management styles, approaches to care, and connections with families and the local community. Design for people with dementia should be in line with people’s social and cultural activities, their needs and capabilities, and organisational policies and procedures (Alzheimer’s Association USA, 2007).
To be dementia-friendly, residential and respite facilities need to have a home-like environment. The language of ‘home’ is very different from the language of ‘healthcare’:
We can never hope to achieve home-like environments as long as we continue to refer to corridors, rather than halls or hallways, as long as we build activity rooms, rather than a music room, library, laundry room, or bedrooms … Different parts of the country and different cultures may designate household rooms differently, but almost no one grew up with a day room or nurse’s station as part of their traditional home environment (Brawley, 1997).
A home-like environment adds continuity and familiarity to everyday life, encourages continued family involvement and strengthens family and friendship ties (Brawley, 2006). It involves:
- personal control and decision making
- individualised care
- meaningful relationships
- smaller scale living arrangements
- greater environmental texture
- personalisation of care
- discrete medical support (Calkins, 2005).
Home-like environment checklist
Principles for creating dementia-friendly environments
Dementia-friendly environments are created around the experience of dementia, a flexible approach to maximise people’s freedom and involvement, and minimising regimentationNagy 2002.
Keep health at the best possible level
Making sense of the world is a huge task for a person with dementia. Poor health can have a harmful impact, creating confusion and discomfort and limiting the use of a person’s remaining abilities.
Make up for reduced sensory, cognitive and motor ability to support independence
People with dementia find it harder and harder to interpret the environment and over time become more limited in movement and agility. Their environment can enable them to live well, and should provide discrete support. They should be encouraged to be active and keep their skills and abilities for as long as possible.
Support continuation of roles and lifestyles
People with dementia have different interests and pastimes. Designing daily life around interests and pastimes gives people pleasure; makes use of their skills and abilities; makes important links with people and places that were/are important in their lives; adds variety and interest; and is stimulating, reducing boredom, anxiety, stress and frustration. The focus is on being alive rather than on being a person with dementia.
Support abilities through meaningful daily living
Focus on what a person with dementia can do and encourage them to join in. Daily activities should mean something to the person, not just fill in time.
Respect the right to freedom of choice and speech
People with dementia are individuals. They do not all want to do the same things. Respect a person’s decisions about their life and support them to do and say what they want, as far as they can.
Have valued settings of a home-like environment
Residential facilities are where people live, and people should feel at home. Home environments can take many forms, but they all have certain domestic qualities. A home-like setting reminds people of home, lets them continue the tasks of daily living, uses their existing skills and gives choice and independence with familiarity and comfort. A familiar environment has recognisable features: furnishings and furniture, building layout, room size, view and exterior.
Respect privacy, dignity and personal possessions
The need for privacy and respect when bathing and dressing is taken for granted by many. Privacy and dignity may mean being able to spend time in your room or the garden without someone watching you, or being on your own rather than with others.Personal possessions help create a familiar environment and can be a source of joy for people with dementia. They tell us a lot about a person especially if the person is no longer able to do so, and can be a topic of conversation for visitors and family members.
Give choice of activity and involvement
People with dementia have different life interests and needs at different stages of the disease. One person may be able or prefer to do something that may be frustrating or stressful for another. The environment should have different indoor and outdoor experiences and options for active and passive involvement.
Provide safety and security while supporting independence
Daily living should be about options for people with dementia to join in and pursue their interests without taking needless risks. They should be able to move about and do things without injuring themselves. Obstacles, barriers, poor lighting, glare and hazards should be removed.
Aims for design
We need to aim for the best possible living conditions for people with dementia. Careful design of physical and social environments can lift people with dementia, their families and staff into a more positive frame of mind and be energising.
Dementia-friendly design incorporates:
- familiar domestic features to promote comfortable feelings and links between people with dementia, staff, families and visitors
- areas and features for individual use and personalisation so people control, live in and are at home in their own space
- flexible design features promoting continuation of personal lifestyles, encouraging remembering and allowing for changes in people’s needs and responses
- spaces and rooms for small groups to promote a sense of an ‘extended family’
- different settings and features for interest and to encourage curiosity
- discrete safety features to support freedom where risk is reduced to a level acceptable to staff and families
- different environmental cues to highlight the purpose of different spaces and location of items (Nagy, 2002).
When designing for dementia, think about the needs of:
- people with dementia - design for a person’s abilities and independence while giving a sense of place and domestic affection, respect and dignity.
- staff - design a useful and interesting environment to ease the physical and emotional stress of daily work.
- family and friends - design a relaxing and positive environment to encourage involvement of family and friends (Kidd, 1997).
- local community - design an environment to support people going out into the community and the community being involved in the life of the home.
Environmentally sustainable design
New residential facilities