Experience Dementia 7 Insights

Tom Kitwood has written a great book called 'Dementia Reconsidered. The person comes first'. He suggests 7 ways in which we can gain some insight into what it is like to have dementia such as Alzheimer's disease.

1st Insight: Reading books by people who have dementia such as Alzheimer's
There are a number of books around written by people who have been diagnosed with dementia and area valuable source of information.

2nd Insight : Listening carefully to what people with dementia say in groups or interviews
Listening to what people with Alzheimer's say tells us a lot about how people cope with cognitive impairments such as memory loss, thinking, attention, reasoning, decision making and dealing with concepts.
Researchers point to recurring themes-
The importance of reassurance through the company and support of others.
How the use of metaphor of past events and experiences can relate to their present situation.
Structured listening using images or objects can project aspects of the person's own experience.
The central message is that the voices of people with dementia need to be heard.

3rd Insight: Attending carefully and imaginatively to what people with dementia say
The importance of seeing different ways that people with dementia communicate in every day life in the 3rd insight. Meaning in what is said may be 'conveyed in a concrete, metaphorical or allusive way'. So the Interpretation of the content of conversation, not just taking sometimes confused use of words at face value is the key to understanding.

4th Insight: Learn from the behavior and actions of people with dementia
Learning from action, as well as intended and attempts at action is the theme of the 4th insight into understanding the experiences and world of someone with dementia. Tom Kitson suggests that people with Alzheimer's use whatever resources we have available to us to communicate. If we lose the more sophisticated means of action people with dementia may fall back on more basic, more deeply learned ways of behaving. This can give meaning to behavior such as aggression. Kitwood and others interpret the action of biting another person as literally 'leaving a mark' and rocking, rubbing body parts etc. as self stimulatory actions that are an important part of being a person, a human being.

5th Insight: Learning from people who have had illnesses with dementia-like features
Tom Kitson gives a couple of examples of the type of illnesses that can produce dementia type features, meningitis and depression. I am sure you can think of more examples and even be able to recall times when you experienced some dementia like symptoms, even if they were only brief insights.
Examples include, so called 'senior moments'! Times when you forgot what you were doing or why you had gone to another room to find something.
Confusion and fear associated with delirium.
Acting or behaving in a way that you know is not right but you seem to have little or no control. This sort of behavior can be the result of concussion, head injuries, from drug misuse, mental illnesses such as psychosis or depression.
Our experiences of illnesses and other life events can be a valuable source of insight into some features of dementias such as Alzheimer's.

6th Insight: Understanding dementia using our own 'poetic' imagination
Kitwood says that poetry provides a more condensed and powerful linguistic form of expression. He uses his own work and the poetry of John Killick, who has written a series of poems responding to the experiences of people with dementia to illustrate the 6th insight. Themes of alienation, pain of abandonment, fear, futility and naked terror are expressed powerfully.

7th Insight: Using role play to understand the experience of dementia.
The 7th insight into the experience of life of someone with dementia, is the use of role play. To be meaningful the role can not be taken on superficially. We have to, (actors, therapists, healthcare workers, caregiver), get in touch with our own feelings and imagination to illustrate the range of what it must be like to be demented, out of control, sad, confused, depressed etc. Go below the intellectual, and as Kitson says..... 'feel the shape and weight of things, knowing them in action rather than in mere reflection.

Buy Dementia Reconsidered
'Dementia Reconsidered. The person comes first.' is by Tom Kitwood. For your own copy, click here.

03/30/2006